Aphasia Access Conversations brings you the latest aphasia resources, tips, and a-ha moments from Life Participation professionals who deliver way more than stroke and aphasia facts. Topics include aphasia group treatment ideas, communication access strategies, plus ways to grow awareness and funds for your group aphasia therapy program. This podcast is produced by Aphasia Access. Search our courses, resources, and events by keywords at https://bit.ly/aphaccacademy.
📻 Siste episoder av Aphasia Access Conversations
Her er de nyeste episodene tilgjengelige via RSS-feeden:
Laster episoder...
📱 Slik abonnerer du på Aphasia Access Conversations
Episode 135: From Technical Manuals to Poetry: In Conversation with Mark Harder (00:40:22)
This episode features Mark Harder, an individual with aphasia who has developed numerous programs to engage individuals with aphasia in returning to meaningful life activities. Mark shared his personal experience with aphasia following a stroke and heart attack, discussing his recovery journey and the role of poetry in his healing process. He described his involvement in various aphasia support initiatives, including poetry groups, conferences, and advocacy work. Mark's efforts to raise awareness and support others with aphasia have led to the creation of multiple programs and events, demonstrating his commitment to the aphasia community.
Episode 134: Inner Speech and Aphasia with Mackenzie Fama (00:37:56)
Lyssa Rome talks with Dr. Mackenzie Fama about the experience of inner speech for people with aphasia.
Episode 133: Diversity Beyond Race with Jose Centeno (00:54:09)
In this episode you will discover: Diversity Means Everyone - Race is just one piece. Consider how age, language, immigration status, religion, sexual orientation, and geography intersect to shape each person's experience with aphasia. Go Into the Community to Build Trust - Sustainable partnerships require leaving your institution and showing up consistently. Visit centers, share meals, and invest time where people gather. Trust develops gradually through authentic presence. Listen to Real-Life Struggles First - Before starting therapy protocols, hear what families actually face: shifted gender roles, children as language brokers, lack of community aphasia awareness, and disrupted family dynamics. Train Future Clinicians Differently - If you're building or revising academic programs, front-load diversity with a foundational intersectionality course in semester one, then integrate these principles across every subsequent course and clinical practicum. If you've ever wondered how to better support multilingual families navigating aphasia, or felt uncertain about cultural considerations in your practice, this conversation will give you both the framework and the practical insights you need. Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong, a faculty member at Central Michigan University where I lead the Strong Story Lab, and I'm a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that tackles one of the most important conversations happening in our field right now - how do we truly serve the increasingly diverse communities that need aphasia care? We're featuring Dr. Jose Centeno, whose work is reshaping how we think about equity, social justice, and what it really means to expand our diversity umbrella. Dr. Centeno isn't just talking about these issues from an ivory tower - he's in the trenches, working directly with communities and training the next generation of clinicians to do better. Before we get into the conversation, let me tell you a bit more about our guest. Dr. Jose Centeno is Professor in the Speech-Language Pathology Program at Rutgers University. What makes his work unique is how he bridges the worlds of clinical practice and research, focusing on an often overlooked intersection: what happens when stroke survivors who speak multiple languages need aphasia care? Dr. Centeno is currently exploring a critical question - what barriers do Latinx families face when caring for loved ones with post-stroke aphasia, and what actually helps them navigate daily life? His newest initiative takes this work directly into the community, where he's training students to bring brain health activities to underserved older adults in Newark's community centers. As an ASHA Fellow and frequent international speaker, Dr. Centeno has made it his mission to ensure that aphasia research and care truly serve diverse communities. His extensive work on professional committees reflects his commitment to making the field more inclusive and culturally responsive. So let's get into the conversation. Katie Strong: As we get started, I love hearing about how you came into doing this work, and I know when we spoke earlier you started out studying verb usage after stroke and very impairment-based sort of way of coming about things. And now you're doing such different work with that centers around equity and minoritized populations. I was hoping you could tell our listeners about the journey and what sparked that shift for you. Jose Centeno: That's a great question. In fact, I very often start my presentations at conferences, explaining to people, explaining to the audience, how I got to where I am right now, because I did my doctoral work focused on verb morphology, because it was very interesting. It is an area that I found very, very interesting. But then I realized that the data that I collected for my doctorate, and led to different articles, was connected to social linguistics. I took several linguistics courses in the linguistics department for my doctorate, and I needed to look at the results of my doctoral work in terms of sociolinguistic theory and cognition. And that really motivated me to look at more at discourse and how the way that we talk can have an impact on that post stroke language use. So, I kept writing my papers based on my doctoral data, and I became interested in finding out how our colleagues working with adults with aphasia that are bilingual, were digesting all this literature. I thought, wait a minute. Anyway, I'm writing about theory in verb morphology, I wonder where the gaps are. What do people need? Are people reading this type of work? And I started searching the literature, and I found very little in terms of assessing strengths and limitations of clinical work with people with aphasia. And what I found out is that our colleagues in childhood bilingualism have been doing that work. They have been doing a lot of great work trying to find out what the needs are when you work with bilingual children in educational settings. So that research served as my foundational literature to create my work. And then I adopted that to identifying where the strengths and needs working with people by new people with aphasia were by using that type of work that worked from bilingual children. And I adapted it, and I got some money to do some pilot work at the from the former school where I was. And with that money I recruited some friends that were doing research with bilingual aphasia to help me create this survey. So that led to several papers and very interesting data. And the turning point that I always share, and I highlight was an editorial comment that I got when I when I submitted, I think, the third or fourth paper based on the survey research that I did. The assessment research. And one of the reviewers said, "you should take a look at the public health literature more in depth to explain what's going on in terms of the needs in the bilingual population with aphasia". So, I started looking at that and that opened up a huge area of interest. Katie Strong: I love that. Jose Centeno: Yeah, that's where I ended up, you know, from an editorial comment based on the studies of survey research. And that comment motivated me to see what the gaps were more in depth. And that was in 2015 when that paper came out. I kept working, and that data led to some special issues that I invited colleagues from different parts of the world to contribute. And then three years later, Rutgers invited me to apply for this position to start a diversity focused program at Rutgers, speech language pathology. At Rutgers I met a woman that has been my mentor in qualitative research. Pamela Rothpletz-Puglia is in nutrition, and she does qualitative, mixed methods research. So, her work combined with my interest in identifying where the needs were, led me to identify the needs in the work with people with aphasia through the caregivers using her methodology. And I'll come talk more about it, because it's related to a lot of different projects that I am pursuing right now. Katie Strong: I love this. So, it sounds like, well, one you got a really positive experience from a reviewer, which is great news. Jose Centeno: Well, it was! It's a good thing that you say that because when we submit articles, you get a mixed bag of reviews sometimes. But, this person was very encouraging. And some of the other reviews were not as encouraging, but this was very encouraging, and I was able to work on that article in such a way that got published and it has been cited quite a bit, and it's, I think it's the only one that has pretty much collected very in depth data in terms of this area. Katie Strong: Yeah, well, it sounds like that really widened your lens in how you were viewing things and taking an approach to thinking about the information that you had obtained. Jose Centeno: And it led to looking at the public health literature and actually meeting Pamela. In fact, I just saw her last week, and we met because we're collaborating on different projects. I always thank her because we met, when our Dean created an Equity Committee and she invited the two of us and somebody else to be to run that committee. And when Pamela and I talked, I said to her, "that qualitative work that you are doing can be adapted to my people with aphasia and their caregivers". And that's how we collaborated, we put a grant proposal together, we got the money, and that led to the current study. Katie Strong: I love that, which we're going to talk about in a little bit. Okay, thank you. Yeah, I love it. Okay, well, before we get into that, you know, one of the things I was hoping you could talk about are the demographics of people living with aphasia is becoming really increasingly more diverse. And I was hoping you could talk about population trends that are driving the change or challenges and opportunities that this presents for our field. Jose Centeno: Yeah, that is actually something that I've been very interested in after looking at the public health literature because that led to looking at the literature in cardiology, nursing, social work, psychology, in terms of diversity, particularly the census data that people in public health were using to discuss what was going on in terms of the impact of population trends in healthcare. And I realized when I started looking at those numbers that and interestingly, the Census published later. The Census was published in 2020, several years after I started digging into the public health literature. The Census published this fantastic report where they the Census Bureau, discussed how population trends were going to be very critical in 2030 in the country. In 2030 two population trends are going to merge. The country gradually has been getting older and at the same time in 2030 as the country is getting older, 2030 is going to be a turning point that demographic transition, when the population is going to be more older people than younger people. So that's why those population trends are very important for us because people are getting older, there is higher incidence for vulnerabilities, health complications. And of those health complications, neurological, cardiovascular problems, stroke and also dementia. Katie Strong: Yes. So interesting. And maybe we can link, after we finish the conversation, I'll see if I can get the link for that 2020 census report, because I think maybe some people might be interested in checking that out a little bit more. Jose Centeno: So yeah, definitely, yeah. Katie Strong: Well, you know, you've talked about diversity from a multilingual, bilingual perspective, but you also, in your research, the articles I've read, you talk about expanding the diversity umbrella beyond race to consider things like sexual orientation, socioeconomic background and rural populations. Can you talk to us a little bit about what made you think about diversity in this way? Jose Centeno: Very good question, you know, because I realized that there is more to all of us than race. When we see a client, a patient, whatever term people use in healthcare and we start working with that person there is more that person brings into the clinical setting, beyond the persons being white or African American or Chinese or Latino and Latina or whatever. All those different ethnic categories, race and ethnicity. People bring their race and ethnicity into the clinical setting, but beyond that, there is age, there is sexual orientation, there is religion, there is geographic origins, whether it's rural versus urban, there is immigration status, language barriers, all of those things. So, it makes me think, and at that time when I'm thinking about this beyond race, I'm collecting the pilot data, and a lot of the pilot data that was collected from caregivers were highlighting all of those issues that beyond race, there are many other issues. And of course, you know, our colleagues in in aphasia research have touched on some of those issues, but I think there hasn't been there. There's been emphasis on those issues but separately. There hasn't been too much emphasis in looking at all of those issues overlapping for patient-centered care, you know, bringing all those issues together and how they have an impact on that post stroke life reconfiguration. You know, when somebody is gay. Where somebody is gay, Catholic, immigrant, bilingual, you know, looking at all of those things you know. And how do we work with that? Of course, we're not experts in everything, and that leads to interprofessional collaborations, working with psychologists, social workers and so on. So that's why my work started evolving in the direction that looks at race in a very intersectional, very interactional way to look at race interacting with all these other factors. Because for instance, I am an immigrant, but I also lived in rural and urban environments, and I have my religious and my spiritual thoughts and all of those, all of those factors I carry with me everywhere you know. So, when somebody has a stroke and has aphasia, how we can promote, facilitate recovery and work with the family in such a way that we pay attention to this ecology of factors, family person to make it all function instead of being isolated. Katie Strong: Yeah, I love that. As you were talking, you use the term intersectionality. And you have a beautiful paper that talks about transformative intersectional Life Participation Approach for Aphasia (LPAA) intervention. And I'd love to talk about the paper, but I was hoping first you could tell us what you really mean by intersectionality in the context of aphasia care, and why is it so important to think about this framework. Jose Centeno: Wow. It's related to looking at these factors to really work with the person with aphasia and the family, looking at all these different factors that the person with aphasia brings into the clinical setting. And these factors are part of the person's life history. It's not like these are factors that just showed up in the person's life. This person has lived like this. And all of a sudden, the person has a stroke. So there is another dimension that we need to add that there in that intersectional combined profile of a person's background. How we can for aphasia, is particularly interesting, because when you work with diverse populations, and that includes all of us. You know, because I need to highlight that sometimes people…my impression is, and I noticed this from the answers from my students, that when I asked about diversity, that they focused on minoritized populations. But in fact, all this diverse society in which we live is all of us. Diversity means all of us sharing this part, you know, sharing this world. So, this intersectionality applies to all of us, but when it comes to underrepresented groups that haven't been studied or researched, that's why I feel that it's very important to pay a lot of attention, because applying models that have been developed to work with monolingual, middle class Anglo background…it just doesn't work. You know, to apply this norm to somebody that has all of these different dimensions, it's just unfair to the person and it's something that people have to be aware of. Yeah. Katie Strong: Yeah. And I think you know, as you're talking about that and thinking about the tenets of the Life Participation Approach, they really do support one another in thinking about people as individuals and supporting them in what their goals are and including their family. You're really thinking about this kind of energized in a way to help some clinicians who are maybe thinking, "Oh, I do, LPAA, but it's hard for me to do it in this way". You probably are already on you road to doing this, but you really need, just need to be thinking about how, how the diversity umbrella, really, you know, impacts everybody as a clinician, as a person with a stroke, as a family member. Jose Centeno: Yeah, and, you know, what is very interesting is that COVID was a time of transition. A lot of factors were highlighted, in terms of diversity, in terms of the infection rate and the mortality was higher in individuals from minoritized backgrounds. There were a lot of issues to look at there. But you know, what's very interesting in 2020 COVID was focusing our attention on taking care of each other, taking care of ourselves, taking care of our families. The LPAA approach turned 20 years old. And that made me think, because I was thinking of at that time of disability, and it made me think of intersectionality. And I just thought it would be very helpful for us to connect this concept of intersectionality to the LPAA, because these issues that we are experiencing right now are very related to the work we do as therapists to facilitate people with aphasia, social reconnection after a stroke and life reconfiguration. So, all of this thinking happened, motivated by COVID, because people were talking about intersectionality, all the people that were getting sick. And I just thought, wait a minute, this concept of intersectionality, LPAA turning 20 years old, let's connect those two, because my caregiver study is showing me that that intersectionality is needed in the work that we're doing with people in aphasia from underrepresented backgrounds. Katie Strong: Yeah, I'm so glad that you shared that insight as to how you came to pulling the concepts together. And the paper is lovely, and I'll make sure that we put that in the link to the show notes as well, because I know that people will, if they haven't had the chance to take a look at it, will enjoy reading it. Jose Centeno: And just let me add a bit more about that. Aura Kagan's paper on, I forgot where it was in [ASHA] Perspectives, or one of the journals where she talks about the LPAA turning 20 years old. [And I thought], "But wait a minute, here's the paper! Here's the paper, and that I can connect with intersectionality". And at the same time, you know, I started reading more about your work and Jackie Hinckley's work and all the discourse work and narrative work because that's what I was doing at the time. So that's how several projects have emerged from that paper that I can share later on. Katie Strong: I love it. I love it. Yeah, hold on! The suspense! We are there, right? Jose Centeno: This is turning into a coffee chat without coffee! Katie Strong: As I was reading your work, something that stood out to me was this idea of building sustainable community relationships in both research and clinical work with minoritized populations. You've been really successful in doing this. I was hoping you could discuss your experiences in this relationship building, and you also talk about this idea of cultural brokers. Jose Centeno: Wow! You know this is all connected. It's part of my evolution, my journey. Because as I started collecting data in the community from for my caregiver study, I realized that community engagement to do this type of qualitative work, but also to bring our students into the community. It's very important to do that work, because I you know this is something that I learned because I was pretty much functioning within an academic and research environment and writing about equity and social justice and all these different areas regarding aphasia, but not connecting real life situations with the community. For example, like having the students there and me as an academician taking that hat off and going into the community, to have lunch, to have coffee with people in the community, at Community Centers. So those ideas came up from starting to talk with the caregivers, because I felt like I needed to be there more. Leave the classroom. Leave the institution. Where I was in the community it's not easy. I'm not going to say that happened overnight, because going into any community, going into any social context, requires time. People don't open their doors automatically and right away. You know you have to be there frequently. Talk about yourself, share experiences. So be a friend, be a partner, be a collaborator, be all of these things together, and this gradually evolved to what I am doing right now, which is I started the one particular connection in the community with a community center. How did I do that? Well, I went all over the place by myself. Health fairs, churches, community centers. People were friendly, but there wasn't something happening in terms of a connection. But one person returned my email and said, "we have a senior program here. Why don't we meet and talk?" So, I went over to talk with them, and since then, I have already created a course to bring the students there. I started by going there frequently for lunch, and I feel very comfortable. It is a community center that has programs for children and adults in the community. They go there for computer classes, for after school programs for the children. The adults go there for English lessons or activities and they have games and so on. And it's very focused on individuals from the community. And the community in Newark is very diverse. Very diverse. So that led to this fantastic relationship and partnership with the community. In fact, I feel like I'm going home there because I have lunch with them. There's hugs and kissed. It's like seeing friends that that you've known for a long time. But that happened gradually. Trust. Trust happens gradually, and it happens in any social context. So, I said to them, "Let's start slowly. I'll bring the students first to an orientation so they get to know the center." Then I had the opportunity to develop a course for summer. And I developed a course that involved activities in the community center and a lecture. Six weeks in the summer. So this project now that I call Brain Health a health program for older adults, is a multi-ethnic, multilingual program in which the students start by going to the center first in the spring, getting to know people there, going back there for six weeks in the summer, one morning a week, and taking a lecture related to what brain health is, and focusing that program on cognitive stimulation using reminiscence therapy. And it's done multilingually. How did that happen? Thank God at the center there are people that speak Portuguese, Spanish and English. And those people were my interpreters. They work with the students. They all got guidelines. They got the theoretical content from the lectures, and we just finished the first season that I called it. That course they ran this July, August, and the students loved it, and the community members loved it! But it was a lot of work. Katie Strong: Yeah, of course! What a beautiful experience for everybody, and also ideas for like, how those current students who will be soon to be clinicians, thinking about how they can engage with their communities. Jose Centeno: Right! Thank you for highlighting that, because that's exactly how I focus the course. It wasn't a clinical course, it was a prevention course, okay? And part of our professional standards is prevention of communication disorders. So, we are there doing cognitive stimulation through reminiscence activities multilingually, so we didn't leave anybody behind. And luckily, we have people that spoke those languages there that could help us translate. And my dream now the next step is to turn that Brain Health course into another course that involves people with aphasia. Katie Strong: Oh, lovely. Jose Centeno: Yeah, so that is being planned as we speak. Katie Strong: I love everything about this. I love it! I know you just finished the course but I hope you have plans to write it up so that others can learn from your expertise. Jose Centeno: Yeah, I'm already thinking about that. Katie Strong: I don't want to put more work on you… Jose Centeno: It's already in my attention. I might knock on your door too. We're gonna talk about that later. Katie Strong: Let's get into the work about your caregivers and the work that you did. Why don't you tell us what that was all about. Jose Centeno: Well, it's a study that focuses on my interest in finding out and this came from the assessment work that I did earlier when I asked clinicians working in healthcare what their areas of need were. But after meeting Pamela Rothpletz-Puglia at Rutgers, I thought, "Wait a minute, I would like to find out, from the caregivers perspective, what the challenges are, what they need, what's good, what's working, and what's not working." And later on hopefully, with some money, some grant, I can involve people with aphasia to also ask them for their needs. So, I started with the caregivers to find out in terms of the intersectionality of social determinants of health, where the challenges were in terms of living with somebody with aphasia from a Latinx background, Latino Latina, Latinx, whatever categories or labels people use these days. So, I wanted to see what this intersectionality of social determinants of health at the individual level. Living with the person at home, what happens? You know, this person, there is a disability there, but there are other things going on at home that the literature sites as being gender, religion, and all these different things happening. But from the perspective of the caregivers. And also I wanted to find out when the person goes into the community, what happens when the person with aphasia goes into the community when the person tries to go to the post office or the bank or buy groceries, what happens? Or when the person is socializing with other members of the family and goes out to family gatherings? And also, what happens at the medical appointment, the higher level of social determinants in terms of health care? I wanted to find out individual, community and health care. The questions that I asked during these interviews were; what are the challenges?, what's good?, what's working?, what's not working?, at home?, in the community?, and when you go with your spouse or your grandfather or whoever that has a stroke into the medical setting?, and that's what the interviews were about. I learned so much, and I learned the technique from reading your literature and reading Aura Kagen's literature and other people, Jackie Hindley literature, and also Pamela's help to how to conduct those interviews, because it's a skill that you have to learn. It happens gradually. Pamela mentored me, and I learned so much from the caregivers that opened all these areas of work to go into the community, to engage community and sustainable relationships and bring the students into the community. I learned so much and some of the things that were raised that I am already writing the pilot data up. Hopefully that paper will be out next year. All these issues such as gender shifting, I would say gender issues, because whether is the wife or the mother that had a stroke or the father that had the stroke. Their life roles before the stroke get shifted around because person has to take over, and how the children react to that. I learned so much in terms of gender, but also in terms of how people use their religions for support and resilience. Family support. I learned about the impact of not knowing the language, and the impact of not having interpreters, and the impact of not having literature in the language to understand what aphasia is or to understand what happens after stroke in general to somebody. And something also that was very important. There are different factors that emerge from the data is the role of language brokers, young people in college that have to put their lives on hold when mom or dad have a stroke and those two parents don't speak English well in such a way that they can manage a health care appointment. So, this college student has to give up their life or some time, to take care of mom or dad at home, because they have to go to appointments. They have to go into the community, and I had two young people, college age, talk to me about that, and that had such an impact on me, because I wasn't aware of it at all. I was aware of other issues, but not the impact on us language brokers. And in terms of cultural brokers, it is these young people, or somebody that is fluent in the language can be language brokers and cultural brokers at the same time, because in the Latinx community, the family is, is everything. It's not very different from a lot of other cultures, but telling somebody when, when somebody goes into a hospital and telling family members, or whoever was there from the family to leave the room, creates a lot of stress. I had somebody tell me that they couldn't understand her husband when he was by himself in the appointment, and she was asked to step out, and he got frustrated. He couldn't talk. So that tension, the way that the person explained that to me is something that we regularly don't know unless we actually explore that through this type of interview. So anyway, this this kind of work has opened up so many different factors to look at to create this environment, clinical environment, with all professions, social work, psychology and whoever else we need to promote the best care for patient-centered care that we can. Katie Strong: Yeah. It's beautiful work. And if I remember correctly, during the interviews, you were using some personal narratives or stories to be able to learn from the care partners. And I know you know, stories are certainly something you and I share a passion about. And I was just wondering if you could talk with our listeners about how stories from people with aphasia or their care partners families can help us better understand and serve diverse communities. Jose Centeno: You know, the factors that I just went through, they are areas that we need to pay attention to that usually we don't know. Because very often, the information that we collect during the clinical intake do not consider those areas. We never talk about family dynamics. How did the stroke impact family dynamics? How does aphasia impact family dynamics? Those types of questions are important, and I'll tell you why that's important. Because when the person comes to the session with us, sometimes the language might not be the focus. They are so stressed because they cannot connect with their children as before, as prior to the stroke. In their minds, there is a there are distracted when they come into the session, because they might not want to focus on that vocabulary or sentence or picture. They want to talk about what's going on at home. Katie Strong: Something real. Jose Centeno: And taking some time to listen to the person to find out, "Okay, how was your day? How what's going on at home prior?" So I started thinking brainstorming, because I haven't gotten to that stage yet. Is how we can create, using this data, some kind of clinical context where there is like an ice breaker before the therapies, to find out how the person was, what happened in the last three days, before coming back to the session and then going into that and attempting to go into those issues. You know, home, the community. Because something else that I forgot to mention when I was going through the factors that were highlighted during the interviews, is the lack of awareness about aphasia in the community. And the expectations that several caregivers highlighted, the fact that people expected that problem that the difficulty with language to be something that was temporary. Katie Strong: Yeah, not a chronic health condition. Jose Centeno: Exactly. And, in fact, the caregivers have turned into educators, who when they go into community based on their own research, googling what aphasia is and how people in aphasia, what the struggles are. They had started educating the community and their family members, because the same thing that happens in the community can happen within the family network that are not living with this person on a day-to-day basis. So, yeah. All of this information that that you know, that has made me think on how clinically we can apply it to and also something how we can focus intervention, using the LPAA in a way that respects, that pays attention to all of these variables, or whatever variables we can or the most variables. Because we're not perfect, and there is always something missing in the intervention context, because there is so much that we have to include into it, but pay attention to the psychosocial context, based on the culture, based on the limitations, based on their life, on the disruption in the family dynamics. Katie Strong: Yeah, yeah. It's a lot to think about. Jose Centeno: Yeah. It's not easy. But I, you know. I think that you know these data that I collected made me think more in terms of our work, how we can go from focusing the language to being a little more psychosocially or involved. It's a skill that is not taught in these programs. My impression is that programs focus on the intervention that is very language based, and doing all this very formal intervention. It's not a formula, it's a protocol that is sometimes can be very rigid, but we have to pay attention to the fact that there are behavioral issues here that need to be addressed in order to facilitate progress. Katie Strong: Yeah, and it just seems like it's such more. Thinking about how aphasia doesn't just impact the person who has it. And, you know, really bringing in the family into this. Okay, well, we talked about your amazing new class, but you just talked a little bit about, you know, training the new workforce. Could you highlight a few ideas about what you think, if we're training socially responsive professionals to go out and be into the workforce. I know we're coming near the end of our time together. We could probably spend a whole hour talking about this. What are some things that you might like to plant in the ears of students or clinicians or educators that are listening to the podcast? Jose Centeno: You know this is something Katie that was part of my evolution, my growth as a clinical researcher. I thought that creating a program, and Rutgers gave us that opportunity, to be able to create a program in such a way that everybody's included in the curriculum. We created a program in which the coursework and the clinical experiences. And this happened because we started developing this room from scratch. It's not like we arrived and there was a program in place which is more difficult. I mean creating a program when you have the faculty together and you can brainstorm as to based on professional standards and ASHA's priorities and so on, how we can create a program, right? So, we started from scratch, and when I was hired as founding faculty, where the person that was the program director, we worked together, and we created the curriculum, clinically and education academically, in such a way that everybody, but everybody, was included from the first semester until the last semester. And I created a course that I teach based on the research that I've done that brings together public health intersectionality and applied to speech language pathology. So, this course that students take in the first semester, and in fact, I just gave the first lecture yesterday. We just started this semester year. So it sets the tone for the rest of the program because this course covers diversity across the board, applying it to children, adults and brings together public health, brings together linguistics, brings together sociology. All of that to understand how the intersectionality, all those different dimensions. So, the way that the I structured the course was theory, clinical principle and application theory, and then at the end we have case scenarios. So that's how I did it. And of course, you know, it was changing as the students gave me feedback and so on. But that, that is the first course, and then everybody else in their courses in acquired motor disorders, swallowing, aphasia, dementia. You know, all those courses, the adult courses I teach, but you know the people in child language and literacy. They cover diversity. Everybody covers diversity. So, in the area more relevant to our conversation here, aphasia and also dementia. In those courses, I cover social determinants of health. I expand on social determinants of health. I cover a vulnerability to stroke and dementia in underrepresented populations and so on. So going back to the question, creating a curriculum, I understand you know that not every program has the faculty or has the resources the community. But whatever we can do to acknowledge the fact that diversity is here to stay. Diversity is not going to go away. We've been diverse since the very beginning. You know, like, even if you look, if you look at any community anywhere, it's already diverse as it is. So, incorporating that content in the curriculum and try to make the connections clinically. Luckily, we were able to do that. We have a clinic director that is also focused on diversity, and we cover everything there, from gender issues, race, ethnicity, all of those, as much as we can. So, the curriculum and taking the students into the community as much as we can. Katie Strong: Yeah, I love that. So, you're talking about front loading a course in the curriculum, where you're getting people thinking about these and then, it's supplemented and augmented in each of the courses that they're taking. But also, I'm hearing you say you can't just stay in a classroom and learn about this. You need to go out. Jose Centeno: Exactly! It's a lot. It didn't happen overnight. A lot of this was gradual, based on students feedback. And, you know, realizing that within ourselves, we within the course, when we were teaching it, oh, I need to change this, right, to move this around, whatever. But the next step I realized is, let's go into the community. Katie Strong: Yeah, yeah. Well how lucky those students are at Rutgers. Jose Centeno: Thank you. Katie Strong: Well, we're nearing the end of our time together today. Jose and I just wanted, before we wrap up, I just wanted to ask you, "what, what excites you most about where aphasia research and care could go, or what do you think might need our most attention?" Jose Centeno: That's a great question, because I thought of it quite a bit. But I'll focus it in terms of our diverse population, where the aphasia research should be. I think my impression is that there should be more attempts to connect the theoretical aspects of language with the psychosocial aspect. In other words, and this is how I teach my aphasia class. I focus the students on the continuum of care. The person comes in after stroke. We try to understand aphasia, but we aim to promoting life reconfiguration, life readaptation, going back into the community. So, here's the person with aphasia, and this is where we're heading to facilitating functioning, effective communication in the best way we can for this person, right? So, if these are all the different models that have been proposed regarding lexicon, vocabulary and sentence production and so on. How can we connect those therapeutic approaches in a way that they are functionally usable to bring this person back? Because there is a lot of literature that I enjoy reading, but how can we bring that and translate that to intervention, particularly with people that speak other languages. Which is very difficult because there isn't a lot of literature. But at least making an attempt to recruit the students from different backgrounds, ethnic backgrounds. And this, regardless of the backgrounds, there are students studying, interested in studying other cultures. And the curriculum exposes students to ways that we that there is some literature, there is a lot but there is some literature out there to explain vocabulary sentences in other languages post stroke in people with aphasia that, you know, we can use therapeutically. I mean, this is what's been created. So, let's look at this literature and be more open-minded. It's difficult. We don't speak every language in the world, but at least try to connect through the students that speak those languages in class, or languages departments that we have on campus, how those projects can be worked on. I'm just trying to be ambitious and creative here, because there's got to be a way that we should connect those theoretical models that are pretty much English focused intervention paradigms that will facilitate social function/ Katie Strong: It's a lot a lot of work, a lot of work to be done, a lot of a lot of projects and PhD students and all of that. Amazing. Jose Centeno: I think it's as you said, a monumental amount of work, but, but I think that there should be attempts, of course, to include some of that content in class, to encourage students attention to the fact that there is a lot of literature in aphasia that is based on English speakers, that is based on models, on monolingual middle class…whoever shows up for the research project, the participants. But those are the participants. Now, I mean those that data is not applicable to the people [who you may be treating]. So, it's a challenge, but it's something to be aware of. This is a challenge to me that, and some people have highlighted that in the aphasia literature, the fact that we need more diversity in terms of let's study other languages and let's study intervention in other populations that don't speak English. Katie Strong: Absolutely. Well, lots of amazing food for thought, and this has been such a beautiful conversation. I so appreciate you being here today, Jose. Thank you very, very much. Jose Centeno: Thank you, Katie. I appreciate the invitation and I hope the future is bright for this type of research and clinical work and thank you so much for this time to talk about my work. Resources Centeno, J. G., (2024). A call for transformative intersectional LPAA intervention for equity and social justice in ethnosocially diverse post-stroke aphasia services. Seminars in Speech and Language, 45(01): 071-083. https://doi.org/10.1055/s-0043-1777131 Centeno, J. G., & Harris, J. L. (2021). Implications of United States service evidence for growing multiethnic adult neurorehabilitation caseloads worldwide. Canadian Journal of Speech-Language Pathology and Audiology, 45(2), 77-97. Centeno, J. G., Kiran, S., & Armstrong, E. (2020). Aphasia management in growing multiethnic populations. Aphasiology, 34(11), 1314-1318. https://doi.org/10.1080/02687038.2020.1781420 Centeno, J. G., Kiran, S., & Armstrong, E. (2020). Epilogue: harnessing the experimental and clinical resources to address service imperatives in multiethnic aphasia caseloads. Aphasiology, 34(11), 1451–1455. http://dx.doi.org/10.1080/02687038.2020.1781421 Centeno, J. G., Obler, L. K., Collins, L., Wallace, G., Fleming, V. B., & Guendouzi, J. (2023). Focusing our attention on socially-responsive professional education to serve ethnogeriatric populations with neurogenic communication disorders in the United States. American Journal of Speech-Language Pathology, 32(4), 1782–1792. https://doi.org/10.1044/2023_AJSLP-22-00325 Kagan, A. (2020). The life participation approach to aphasia: A 20-year milestone. Perspectives of the ASHA Special Interest Groups, 5(2), 370. https://doi.org/10.1044/2020_PERSP-20-00017 Vespa, J., Medina, L., & Armstrong, D. M. (2020). Demographic turning points for the United States: population projections for 2020 to 2060. Current Population Reports, P25-1144. https://www.census.gov/library/publications/2020/demo/p25-1144.html
Episode 132: Group Treatment with Dr. Liz Hoover (00:40:39)
Episode 131: Math + Aphasia: A Conversation with Tami Brancamp and Dave Brancamp (00:56:40)
In this episode you will discover: Math IS Language - It's in Our Wheelhouse Math has syntax (order of operations), semantics (number meanings), and involves memory and executive function - all areas SLPs already assess and treat. If you can help with language, you have transferable skills for math therapy. Start Simple with What You Have You don't need special materials or extensive math training. Use a deck of cards, dice, and real-life examples like restaurant receipts. Make numbers "friendly" (round $18.72 to $20) and let clients show you multiple ways to solve problems. Address Your Own Math Anxiety First Most SLPs feel uncomfortable with math, but clients need this support for life participation (paying bills, calculating tips, telling time). Acknowledge your discomfort, start with basics you DO know, and remember - if you avoid it, you can't help your clients who want to work on it. If you've ever felt your palms get sweaty when a client asks for help with numbers, this conversation is for you. Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong, a faculty member at Central Michigan University where I lead the Strong Story Lab. I'm today's host for an episode that might just change how you think about math anxiety - both your own and your clients'. We're featuring Tami Brancamp and Dave Brancamp, who are doing pioneering work at the intersection of aphasia and mathematics. Before you hit pause because you're having flashbacks to algebra class, stay with me! This research shows us that the language of math is exactly that - language - which puts it squarely in our wheelhouse as SLPs. We'll explore how to support our clients with aphasia who are struggling with everyday math tasks like counting change, telling time, or balancing a checkbook. And yes, we'll tackle the elephant in the room: addressing our own math insecurities so we can show up confidently for our clients. Let me tell you about our guests. Tami Brancamp is an associate professor at the University of Nevada, Reno School of Medicine and founder of the Aphasia Center of Nevada. Her research focuses on identity in aphasia and rehabilitating everyday math skills. Dave Brancamp spent over 15 years as a junior high math teacher and later became Director of Standards at the Nevada Department of Education. Together, they co-founded Aphasia + Math, where they're exploring how language and mathematics intersect for people with aphasia. Okay now let's get this Aphasia + Math conversation started! Katie Strong: Tami and Dave, welcome to the podcast. I'm so excited for you to be here today. Dave Brancamp: Thank you. Tami Brancamp: We are both super excited to have a chance to talk about things that are different, right? Katie Strong: Right. I do have to say, I don't know if it was a rash, but I did get a little bit nervous coming into the conversation, because I think I may be one of those SLPs that feel a little bit uncomfortable with math. Tami Brancamp: Well, this SLP also is uncomfortable with math, so we can be uncomfortable together. And we'll let the math dude guide us through some of the things. Dave Brancamp: And it will be fun. By the time you're done, I want to see that smile that you have on your face. Katie Strong: Well, let's jump in and have you share a little bit about how you came to researching aphasia and math. Tami Brancamp: Well, I have loved working with people who have aphasia since the beginning of my graduate studies. And then probably, like most of us, there's a few clients who've really hit your heart. One of them, I don't recall her name, and that's okay, but she had a stroke, had aphasia. She had had great recover physically, and her language was quite good, some anomia. But she's a banker, and she could not process numbers, and she was angry. I'm a newbie, I didn't understand the emotional piece of stroke survivor, aphasia. can't do my job well. But she was angry, and I felt so helpless. I didn't know what to do to help her. You know, I could pull a workbook off the shelf or something, but it didn't feel right. You know, she could do calculations, but couldn't do her job. And I always felt so very, very helpless over the years. And the other part that came to start looking at this was teaching in a speech pathology program, undergrad and grad. And in class, maybe we're doing an averaging or something to get a score. I'm not sure if we start talking math, and I would see these students, and their eyes would just like, pop up, like, "Oh my gosh, she's asking me to do math." And like, deer in the headlights. So I'm like, "What is this?" Every semester, I would do kind of an informal survey when we would do a little bit of math, and I say, "Okay, so how many of you don't do math? Raise your hand or are afraid of math?" And it would be at least two thirds to three quarters of the class every single semester, and I'm like, "Okay, there's something here." Like, if I'm afraid of math, how am I going to help my clients remediate that in an efficient way? Right? I'm going to avoid it. If I can, I'll go do other things that are important. So those were, like, the two big things, and then happened to be married to a math dude. And I wondered why are we not combining our skill sets? Because I would come home and I would share with Dave. I'm like "Dave, the majority of my students are afraid to do math or uncomfortable doing math." And it's not complicated math. We're not talking quadratic equations or things I don't even know what they mean anymore. And we would talk about it a little bit, and we talk about math attitudes and perceptions and how we develop our math skills. And I'm like, "There's something here."But I was never taught, how do you remediate number processing? Calculations? right? But yet, I would have multiple clients say, "Hey, Tammy, I can't do numbers." "Yeah, how do I do this?" And there really wasn't anything the literature that told me how to do it. So, I would talk to Dave, and then, just over the years, I'm like, "Okay, we need to do something with this. We really do." And I don't know what that means, because I'm not most comfortable with math, it is not my passion. We're very opposite. I think I shared like, Dave has math and fun in the same language, and then in the same sentence, I'm like, "they don't go together in my brain." So we're very, very opposite. But you know, you can speak for yourself how you grew up and you had to learn how to embrace math, and having good teachers helped when we were younger, and having poor teachers or teachers with different attitudes also left a lasting impression. But when you think about it, whether it's, you know, cooking, driving, banking, living, going to grocery store, restaurants, everything we do all the time, it all involves numbers to some impact, you know, to some effect. And our folks with aphasia, again, not everybody, but the majority of them, will still have an impact with acalculia, difficulty processing numbers and calculating and transcoding, you know, saying, saying the numbers. So, we started to look at it. I did have a had a gift of time with Audrey Holland. So that was my beautiful, like, for many of us, a mentor, you know, she had her three-pronged stool, like the different parts of aphasia. And Dave and I started dividing it up, like, what were the parts we thought involve, you know, aphasia and numbers. And we did think about the math and language math skills, making it fun, but also those influencing elements, like attitudes and perceptions. So, we started just like, "How do we look at this?" Because it's really overwhelming just from the beginning, you know, and just pulling that workbook off the shelf didn't do it for me. You're allowed to speak on that. (Laughter) Dave Brancamp That's one of my passions, obviously, the whole math side. But pulling a workbook is an unfortunate because if someone starts to practice something wrong, they'll repeat that practice, and now it's very difficult to get them to correct a habit, basically that you've formed. And sometimes it's like that nails on a chalkboard? That's what it feels like to me when I hear it. I'm like, "Oh, don't do that." Because if they're doing it wrong, like, 20 times, 10 times, even then it performs a habit that's real hard for them to go, "Well, but I thought I got them all right." Katie Strong: Yeah. Dave Brancamp: Because I think we can all go back to math and you come up unless it was something really, really difficult in at least in our early years of math. We all came up with an answer. And that's how it feels on a worksheet that might have like just adding single digit numbers, if you make an error, you won't know until someone either corrects it or asks you, "How did you get there?" And to me, that's where it became more important. And then I had to learn how to do what do you call it? aphasia friendly language, you know? So, math folks usually speak in short sentences, so that helps. But we'll run a whole bunch of sentences together. If I give you the best example. I know we're going to talk a little bit about that math perception quiz, the difference between us on that question, I think it says "I would prefer to do an assignment in math rather than write an essay." I'm the person to give me that math assignment. 100%. Tammy is like, give me the essay! Katie Strong: And I have to say I'm right there with Tammy. Tami Brancamp I think so, as speech pathologists, we learned about the pedagogy of language and language development. We can analyze it. We can treat it. We can assess it. And then I talked to Dave, and he goes, "Well, there's this whole math I know there's a math pedagogy, and there's this whole developmental progression of how we learn math." But "Really, okay, well, I've never learned that, right?" "No, you learn this before you learn that." We lived it, we just weren't overtly taught it. Or how you know, if there's an error in a calculation, that means that there's some challenges in this part of your developmental math abilities. Like, "Huh, okay, well, that kind of sounds like language to me, a little bit." They do go together. Katie Strong: Yeah, yeah. So, I love to maybe ask a little bit about this. As we've pretty clearly stated, many SLPs feel uncomfortable with math and their own math skills. Tami Brancamp: Yeah. Katie Strong: And we, probably many of us, have avoided it in our own education. Tami Brancamp: Yeah. Katie Strong: So I love this idea that there's the language of math, and I was wondering if you could talk a little bit about that and why it should fit right within our scope of practice as SLPs. Tami Brancamp: A long time ago, I remember how many years ago I came across an article by Seron 2001 in Aphasiology. And he or she, I actually don't know, stated that math should be part of the SLPs practice. I started looking at 20 years later, and it still wasn't (a part of our practice). So, something's really amiss. What are we missing? When we talk about the language, there is a syntax in math. Dave calls it order of operations. And I don't even know what the PEMDAS. Dave Brancamp: PEMDAS. Tami Brancamp: PEMDAS, right? Dave Brancamp: You what scares most people about that? Parentheses, exponents, multiplication, division, addition, subtraction. The left to right. I mean, that's the part people left off. Tami Brancamp: But, ah, yeah, that kind of sounds familiar, doesn't it? Katie Strong It does. It's ringing a very faint bell. Dave Brancamp: It's like, oh no, we're not going to do that. Tami Brancamp So there is a syntax. There's an order of operations, how we put mathematical equations together. Just like how we put sentences together. There's semantics, right? There's word meaning. We have a little sign for you. It won't translate audio, but we'll talk about it. So, in math, and you use the word or the number, the orthographic representation 2, right? Yes. And then we spell it TWO. We also spell it TO and TOO. And then, if you say, "Okay, we also have a two in the number 12, right?" They have to be able to transcode that and a two in the number 20, the two zero. The two in all those locations has different meaning, right? So, it does have semantics. The other parts, I think, were important, was memory and executive function. Executive function permeates mathematics in so many ways. So, when we think about our stroke survivors, those are areas that are and can be impacted. Information processing. How much can they hold in memory of being presented with language, and in this case, language and numbers. So, I think for me, it just, it really is integrated. I also thought, too, when we were looking, I was looking at the neuroscience of it, and there's some shared neuro space that works for math and language. They're not fully disassociated, so I found that really fascinating as well. Katie Strong Yeah, it really is, as I've been thinking about our conversation and just looking into things a little bit, it really makes sense. And even just thinking about just thinking about a word problem in math, certainly, there's that language component that may be a little less intimidating for SLP clinicians that aren't typically working in practice. But I so appreciate you both bringing this conversation out into the light and doing this work, because I can think of a significant number of clients that I've worked with that have also expressed challenges in all sorts of different ways of math. And sometimes I've been able to maybe support it a little bit, and other times I haven't. And I, you know, whether it's me just avoiding it and saying, "Oh, we could work on all of these other things or we can work on this math thing" or, you know, it's just frustrating, I think, to not have really the tools to be able to know how to support it. Our podcast, really focuses on the Life Participation Approach to Aphasia, which really emphasizes a person-centered approach. Like I'm the client I want to choose what I want in my life and what I want to work on. And so, I'm just wondering if you might be able to talk through a little bit about how math skills fit into LPAA framework. Tami Brancamp: Yeah, we were talking about that, and there's one particular client who has multiple PhDs before his stroke. He has family, adult children. And he's like, "Tammy." And we were Dave and I were piloting some work together. And he's like, "Guys, I want to take my family to dinner. I want to pay the bill and the tip." I'm like, "Okay, dude, I got an app for that." And he's like, "No, I want to do it myself." So that, to me, is life participation. If a person is fine with an app, let's make it so and work on something else. Katie Strong: Yeah. Tami Brancamp: But his case, it was so important to him. I'm like, "Okay, here we go." How do we how do we work on figuring out the tip? Now, does it have to be an exact percent? No, Dave likes to teach it more like there's some more strategies to get to the tip. Another client I wanted to share, and sometimes too, when we think about assumptions. So, the data on how many people with aphasia also have math difficulties, numeracy difficulties is wide ranging. It's so big. So you can't even really say what percent. But I also had an assumption. I have a gentleman who I've worked with off and on for a very long time. He's nonfluent aphasia and also has apraxia of speech, and so we're working a lot on his language and his speech. And I said, "So how's your math?" "It's fine. You know, I own my own business and I have somebody help, but it's fine." I'm like, in my head, hmm, I don't think so. I wonder, because the severity of his aphasia and his ability to transcode so like, see a number and then say the name or say the numbers he wants to say, was really impacted. So, we were doing a pilot study during the pandemic online, and so Dave and I were working with this one gentleman. And I think you why don't you do the story because I don't remember you gave him homework or something. A home program. Dave Brancamp: There's a math game called Krypto. Tami Brancamp: Oh, Krypto. Dave Brancamp: So you put five cards down. And each one has its value, you know. And so your listeners just so they know, like when the Jack would fall, that would be 11, and so the Ace automatically took a one, the Queen would be, you know, 12, and the King 13. So five cards different values, or they could be the same value didn't matter, and then one more card became like a target. You had to figure out an equation. So, some big, nice math term there to that you'd add, subtract, multiply, divide to equal this last card. Now they could do with just two cards, three cards, four cards or five would be ideal. So, they had some room for success. And this gentleman, we had some hard numbers that were there. And, you know, he had done a couple, and was rolling right through. And I kept looking over at Tami and I am like, "He's got his math. His math is really good." Tami Brancamp: His ability to calculate. Dave Brancamp: And then we hit one that was really hard, and we're both looking (each other). And the next thing, you know, this gentleman, not to scare anybody, but makes a complex fraction, making a fraction over another fraction to solve. And you can see right now, right Tammy. Tammy is like, "What are you doing?" I'm like, "Yeah, yeah, no, let's go for it. Let's go for it." And next thing you know, we were able to solve it by doing two complex fraction with another number. And he solved the problem. And I looked at Tammy said, "This man has no math problems." Tami Brancamp: And I said, "Boys, I'm out. I'm out. You all just continue playing with your numbers. Have a good time." That's not a comfort zone for me. It's also not the focus we're doing with aphasia in math. But it was something he was capable to do, and I also could see within him, he was super excited that he could do this. Katie Strong: Yeah Dave Brancamp: And he wanted to show his wife. He wanted to show other people, he was like, "Look at this. Look at this." You know, I was like, "Yeah, there's a lot happening." Tami Brancamp: But he could not read the equation. Okay, so there's the aphasia language issue. Katie Strong: Right. Tami Brancamp: Transcoding. He could do the calculations without difficulty. Katie Strong: Amazing. Tami Brancamp: But those are the those are really fascinating. And while we were piloting, we had a group of, I don't know, five or six people with aphasia, and each one had their own. They're all on the non-fluent side, but everybody had their own combination of language difficulty and number processing difficulty. We did notice what one client we worked with who had more cognitive impairment along with language and hers, her processing was much more different than pure aphasia and the acalculia issues. So, it's really interesting to see. It's definitely not cookie cutter, right? Just like aphasia therapy. Katie Strong: Right. Tami Brancamp: Every person's got their unique strengths and challenges. And I'm going to say similarly, I think with the math. Where in the brain was the injury? What is their background? What are their interests and passions? All of that plays in just like in aphasia. Katie Strong: I love bringing up though their prior experience with math too is so important. We think about that from a language standpoint, but we really don't consider that. Or I will speak for myself, I don't typically consider that when I'm learning about somebody and their strengths. Tami Brancamp: Yeah. Dave Brancamp: You think like to go back to your language, like the word "sum" S-U-M, is what we'd use in math for adding, but it has the same sounding as "some" S-O-M-E and so right there, there's some language difficulty that could come out. So often we will have flash cards with the plus symbol so that they and can associate words and just so that you feel better on it, too. Most of us, when we'd heard subtraction probably used an unfortunate phrase of what's called "takeaway". Well, that's not what happens from a mathematical point. So, us in the math side, cringe and are like, "Oh well, the numbers don't get taken away. They're still there." They got, you know, replaced is what we would call them. And so the word of difference, you know, where you live in a different town than we do, so that's what we associate but difference is how we do subtraction. So those little, simple nuances that I had to also remember too because I taught junior high, which most of them were fairly comfortable with their, you know, at least their basic skills. And I'd heard those terms where suddenly, you know, Tammy would bring up to me, "You're gonna have to help us out with that" because that it's easy for you to say that it's causing a problem and that makes us then, you know, have those moments of pause that you're like, "Oh yeah, you're right. I've got to do that." Tami Brancamp: Just a little aside on that with we just finished a pilot study with two groups of people doing online intervention. So that background of knowledge, you know, say you got 10 people in a group, and you could see the people who go, "Oh yeah, I remember that. I remember that math language." You're getting, the nodding like, "Oh yeah, that's right." And then there's others who have like, "I don't understand what he's saying." The look. So, it's really fascinating to make sure that we pay as much attention to that background as we do in language. Katie Strong: Yeah. Interesting, interesting. Dave Brancamp: I don't know if you want to go down that path, but like when we hit time, you know, which is an element that folks aphasia really want to work with, right? And yet, it's a whole different concept mathematically, because we are used to in almost all the countries we work with of things from, you know, basically what we call base 10 or zero to 100 zero to 10, we can play time is in elements of 12. And so, like you might say it's a quarter past, you know, like one, that's not a 25 it's written as 1:15. And you know, what does that mean? And, oh, I don't know. I don't know how I'm supposed to be at the bus stop or the doctor appointment or whatever they may be going to. Katie Strong: Right, right. Dave Brancamp: And a lot of our groups found that to be a huge help, you know. And as much as we all laugh, you probably at least most of us remember when we were in elementary school having little clocks that we might play with. Katie Strong: Right Dave Brancamp: We call them our Judy clocks from when we were as teachers. But it's like, as simple as those are, those are what you need to bring back and go, "Let's take a look at what you know, because it's a quarter of the circle, and that's where it got its name from." Tami Brancamp: But it's one over four, like 1/4 one quarter. Dave Brancamp: But that's not how we'd write it in time. It's actually whatever the hour is and the 15, and you're like, "Where'd that come from?" So, it was very fascinating to watch, and especially when we did some work with some of the clinicians, are just like, "Oh, you're kidding. I didn't even think about that." It's because we knew it. we transition it naturally and not thinking, "Oh my gosh, my brain now has to re-picture this". So. Katie Strong: It is fascinating. Tami Brancamp: And that you can see how much language is involved. Tami Brancamp: Huge. Huge. Katie Strong: Yeah, well, I'm excited to talk about the projects and research that you've been doing. You gave us kind of a teaser about these online groups. Should we start there? Tami Brancamp: Maybe, we aren't there. We haven't analyzed all the data… Katie Strong: I'm curious. Tami Brancamp: Yeah, that'll be a teaser. We are working with our partner, Carolyn Newton. She's in London, and she is at University College London. She's done some work in mathematics and aphasia, and also her doc students, so we're working with them. They did all the assessment with my students. And then Dave and I did intervention. We had two groups. We had, like, a Level 1 and a Level 2. Everybody had aphasia. And we did group intervention primarily because Dave and I have been working with Lingraphica and Aphasia Recovery Connections Virtual Connections. Katie Strong: Yep. Tami Brancamp: Since March of 22, we've been doing it every single month. Katie Strong: Amazing. Tami Brancamp: We had some time off. Yeah, but you know, what's so crazy is that we average about 38 people who come on to do the session. Katie Strong: Wow! Tami Brancamp: Oh, I know, with a range like 19 to 50 people. Katie Strong: That is amazing, but such a testament that people are interested in this topic. Tami Brancamp: That's what made us keep pushing forward. Because if that many people show up, there's an interest and there's a need. Katie Strong: Right. Tami Brancamp: You know? But how do we how do we help is the challenge. We are in the process of analyzing, did we could that group in the way that we did it, like twice a month over three months? Would that impact change? They could hold it at the end of the treatment. And then we also did 30 days later, so we'll see. And then we also did some we did the math, attitudes and perceptions. Katie Strong: I took it so maybe give people a little bit of background on what this is. Tami Brancamp: Yeah. So this is a we looked at a lot of different tools, and this one is called, what is it called Attitudes Toward Mathematics Inventory. And it was designed for adults, college age, students and adults. There's a lot for children. But this is like, really, you know, what do you think about math in terms of you like it, you don't like it. Is it important? Not important. And so there is a lower number means that you are less confident, less familiar. Dave Brancamp: You might not like it. You might not like it as much. Katie Strong: And it might give you a rash. Tami Brancamp: (Laughs) It might give you a rash! Dave Brancamp: I'm sorry. Tami Brancamp: Right, all the things that it does. It's up to a point of 200 Do you want to share what your score was? Katie Strong: Well, I didn't calculate it. I just did the ABCDE, but I'm gonna guess it's in the lower like 25th. Tami Brancamp: Yeah. Dave Brancamp: So let me ask you, what was your last math class? Katie Strong: It was a statistics class in my PhD program. Dave Brancamp: And how did that class make you feel? Were you like, "Oh, I'm so excited to go!" or like, "Oh my gosh, I just got to get this done." Katie Strong: I wanted to get out of there as quickly as I could. I tried hard, and I just kept, I think I kept telling myself it was hard and I couldn't do it, and it just and it was. Dave Brancamp: So, if you think about that, for us as adults, right? Or anybody, even kids. Take our kids. Whatever your last class is, it sits with us. It's a memory we carry. And then math has its unique way of, kind of building on itself. And then it can bridge to a couple different areas and what have you, but it builds. And if your last class wasn't the most pleasant. You didn't score well, or you didn't have a teacher that you could relate with, or whatever it was, you probably don't have a real fun feeling of math. So that leads to our perceptions, right? And it's and you know, using this we've done this with some of your students as they go through soon to be clinicians, and as soon as they took it and then had us talk, they you almost want to say, "Let's take it again", because our feeling is of that last class. But when you find out, what we'll probably do is adding, subtracting, multiplying, maybe division, not likely. But what we call basic life skills, it may change how you took the test or take the inventory, because, you know, like for me, it's still, it will never change the fact of giving a math problem over an essay. I'll give you guys the essay. I'll take the math problem. But it's just, you know, is it important your everyday life? Well, how often do you do your statistics on an everyday life? That was your last class right? Not a lot, maybe some. But it's, you know, it's becomes an interesting whatever sitting with us probably has a feeling. If we come in with a bad attitude toward what we're going to teach or share with you, no matter whether they have aphasia or if it's just us in a general setting, they're going to know you don't like this, then why should I spend time with it so we that's the My purpose is make it so that they enjoy even if it's difficult, we're going to enjoy it so that otherwise, you know, I'm already behind because you don't like it. So why should I like it? Katie Strong: And I love that because, I mean, I know that, like hard work can be fun. I mean, in a therapy situation, hard work can be fun, but thinking about this from a math standpoint really is kind of a game changer for me. Tami Brancamp: One of the things, and I think we'll come back to the research a little bit. But Dave likes gamification. I don't really like to play games, right? Dave Brancamp: You're getting better! Tami Brancamp: But you have to, you know. Dave Brancamp: I will pick up like dice. We try to do things that we figure our folks could find rather easily. You know whether you have dice from a Yahtzee game where you can go pick them up and a deck of cards. Almost everything I do with them are one of those two. It might take a little more looking, but I'll we often use what are called foam dice so they don't make all that noise, because sometimes too much noise can be very bothersome. And then using, like, the whiteboard or something to write with helps so they can see, because sometimes you'll be playing a game and they'll have no idea of the math that's involved and why there might have been, like, a strategy or so on. Tami Brancamp: When we do work with people using cards and dice to generate the numbers, we have activities we do and we make it aphasia friendly, but we'll also discuss, maybe after the fact, "All right, so how did you do? Where was it difficult? I want you to recognize that you were working on executive function here. You were giving it strategies and thinking and multiple steps ahead." So that they can recognize it isn't a kid game. Katie Strong: Yeah, just a game." Yeah. Tami Brancamp: It's not just a game. It's making it fun and a little bit more lighthearted. If we can lighten it, but still make it skilled intervention, I'm not in there to play games and win. But having a give and take, a little competition, some laughter, some humor, while we're doing the intervention. To me, that's a lovely session. Dave Brancamp: One of the things Katie, we found, too, is there's not a lot of good tests out there for math to diagnose the problem. You can find out by taking the different tests, and you and Tammy know the exact names, but they'll say, "Well, Dave has a problem doing math." But now where do I start? Is a whole different game, because they build, as we said earlier, and if I don't start at the right spot the building block, I get a sense of failure immediately, because I can't do it, whereas you need to just keep backing up, just like you do in language, you keep backing up till you find my starting point. And that's one of the areas we'll maybe talk about later, is those things we're trying to figure do we work on finding a better way to assess the math, to truly know what's Dave or your client or whoever, whatever they're doing, because sometimes it could be simply the language, like we had with the one gentleman who has great math skills. Katie Strong: Right. Dave Brancamp: And others could be I can't even tell the difference between these two numbers, which is larger or smaller. And so now we have to start back at what we call basic number sense. It can be anywhere in that game, and it's like, well, they can't add. Well, do we know they can't add? Or do they just not recognize that six is smaller than eight. Tami Brancamp: Or how did you let them tell you the answer. If you only get a verbal response versus writing response, or, you know, selecting from four choices, you know. All of those give us different information when you're when you're having to blend a language disorder and a numeracy disorder. Dave Brancamp: Because that one gentleman, he struggles immensely with anything with a two in it, so 20s, just…so you could easily say, "Wow, there's no way this man has math skills." I mean he's doing complex fractions. He just couldn't tell you it's one over two. It was be like, I don't know what that is called. Katie Strong: Fascinating. Dave Brancamp: We enjoy the game part. And one of the pieces in this last research we did that was a new thing, right? We didn't even think of it prior was what we call a home program. Taking the game we did, putting it in friend aphasia friendly language with pictures so they could practice them. Katie Strong: Okay. Dave Brancamp: Because we would not see them for like a two they was every two weeks. So, some could practice. I would say our Level 1 - our folks working on foundational sets practiced more than are more advanced. Which was very fascinating. Tami Brancamp: What we were doing in this research, the most recent one, we would encourage people to, you know, take a photo, take a screenshot of the work we're doing. But we also did it too, and then we put it into a page with an explanation, and then we would send it so that they could, ideally practice with a family member or a friend, or by themselves. You know, that's also a variable for people, right? Dave Brancamp: And what we found in it, they needed more pictures. In our first attempt, we didn't put as many. So we would ask them, "since you wanted this, did that help?" "Not really." They're honest. Katie Strong: Yeah. Dave Brancamp: We appreciate that. And they're like, Well, what? Why didn't it like, well, it, even though we tried to make it as aphasia friendly language, it was just too much word Tami Brancamp: Too many words. Dave Brancamp: Too many words. So then we started asking, "well would more pictures help?" "Yes." So we did that. So they helped us. It was amazing to watch. Tami Brancamp: So that research project will we can get to down the road once we figure out what was going on. What we did share with you was the survey that we did with speech language pathologists from the United States and the United Kingdom. So we thought, well, Carolyn's there, and we kind of look at math a little bit similarly. So we had 60 participants who completed the study. We want to know, like, do you treat people with aphasia who also have math difficulties? If so, what are you doing? Dave and I still wanted to look at the attitudes and perception, because I still believe that's an influencing factor. But we also wanted to get a good sense, like when you are working with people with aphasia, who have number difficulties, what difficulties are you seeing? And then what are you doing? What do you use to assess? And what are some of the barriers? So it gave us a nice overview, and that one's out for review currently. Anywhere from like, how many of you work on numeracy difficulties? About 35% responded with rarely, and 40% responded with occasionally, and 17 said frequently. And also, there was no difference between the countries. Katie Strong: Oh, interesting. Tami Brancamp: Yeah, I thought so too. Katie Strong: But I also think too, you know, I mean, there really isn't a lot out there instructing SLPs on how to do this work in an evidence-based manner. So that makes a little bit of sense. Tami Brancamp: It did, because I still felt the same way for myself, like, "Where do I go to learn how to do this?" Okay. I'm married to a math teacher, so I'm learning right? It's a lot of give and take. And Carolyn, our partner, she's very good about when we're talking about this she's like, "But not everybody has a Dave on their shoulder." Like, "No, they do not." Because even today, I'm still a little cautious, like if I had to go do all this solo, I have some holes that I want, and those are the things I want to help us create for future training opportunities and education continuing ed that would help clinicians who really want to do this and they have a client who wants to work with it, right? Katie Strong: I hope that's a large number of people, because I think, you know, I think that this is really a significant challenge that I hear so often from support group members or people that I work with who have aphasia. Tami Brancamp: I really think that's why we keep going, because we hear it from our we hear it from our clients. Katie Strong: Yeah. Tami Brancamp: We're not hitting it as much in acute care, for sure, rehab, you might get a little sample that is going on, but it's usually that outpatient. And then the longer term, like the they have some of the big needs met. And then we've got time to maybe look at math. But for some people, math should have been math and language together could have been hit earlier. But who's to say, you know? Dave Brancamp: Well, you would know it best because I've asked when we first started this there would be like one, Tammy would give me one of her classes, and I would talk to them about math and absolutely deer in the headlight looks, "Oh my gosh, what are you going to do?" to by the end realizing "We're going to make this as fun as we can. We're going to use dice and cards, and we're going to do pretty much what we call foundational adding subtracting skills that they were welcome", but you already have so much in your course to do that we just don't even have time. So that becomes this very interesting, because, you know, one of the big questions Tammy always asked me is, "Well, how can I know this pedagogical, or the reason behind?" I know they'll be able to hear but, I mean, I've done this now for 30 plus years, so there's a lot in my head that I have to figure out, how do we do this? So I can see this is the problem by how they addressed it without them having to take a whole other set of courses. Tami Brancamp: Yeah, we can't. There is surely not room for whole courses. So it's got to be embedded in existing coursework, or continuing ed opportunities after training. Katie Strong: Or both, right? Tami Brancamp: Yeah, I think both. Some of those barriers that we found people saying was, you know, there's not training on it, which I agree. Dave Brancamp: There's not the resources. Tami Brancamp: Yes, there's not the resources. And are the tests that people use. They have some sampling of math. But my question always is, "Okay, so I give this little bit of math in my aphasia test or something else like and now, what? Well, I know what they can't do, but what does that mean? And how might I support them for relearning?" I found it more helpful to look at it from a developmental perspective. I'm going to learn a, b, c, d, and I'm going to learn x, y, z, and then it helps me understand, like, "Where might I start?" Because I don't have to go down to counting dots, right? That number sense larger, less than visually. If that's not where the client needs to be. But learning where they need to be, we need better assessments for that. I don't know if that's something we're going to be able to tackle or not. I mean, Dave spent quite a big part of his professional career, developing assessments. So, it would be logical. But there's so many pieces to do. Katie Strong: Right? It's a big it's a big undertaking. Dave Brancamp: Well, there's so much that you gain by finding out from the client how you did the problem. It could be four plus six is what? and they write two. Well, I need to know why you think it's two. So did you think that was subtraction? Because they just didn't see the plus symbol. Well, you know? Well, then they have some good math. There's some good math there. They did the math correctly if they subtracted it. It's not the answer I'm looking for. And so could they say, you know, when you asked it if you were a person and he's like, "Katie, so if I gave you six things and gave you four more, how many your total?" Do you know what that even meant to do? These things that just gives us clues to where your math might be and for unfortunately, for a lot of us, which makes it hard for me, I feel bad that they didn't have the experience is ones and zeros have some very powerful meanings in math that unfortunately, scare a lot of folks. Katie Strong: Yeah, right. Tami Brancamp: I never learned the fun stuff of math, you know. There's some tricks and some knowledge and some skills that I, you know, good math teachers will teach you, and I just didn't really learn those. So, Dave's teaching me just because I were doing this together? I don't know. I kind of was thinking like what we talked a little bit about, what does the intervention look like? Katie Strong: Yeah. Tami Brancamp: Gamification, making it fun, not using workbooks. We're hoping that we could utilize some of the home programs that we've created, and share those as part of the teaching. Dave Brancamp: And like the game. I think I told you that we did with that one gentleman with Krypto. It could simply be like a target number or something of that nature, but it's fun to have when we did with our both groups with Virtual Connections, or our research groups, other people could find out, like, you could solve it one way, Katie. Tammy could do it a different way, and I could do it a completely different way. And it was fascinating to watch the groups, like, I had no idea you could do it there. And that's what we need to hear So that people go, "Oh, you don't have to do it just one way." Because I, unfortunately, and some are my colleagues, they forced, "I need you to do it x way." It's like, "Well, okay, maybe to start. But now let's open the door to all these other ways you can, like, add a number or whatever." And because it always fascinates me when we do, is it multiplication or subtraction? Now I forget, but one way Tammy is, like, "I never learned it that way. I always…" and, you know, it was just how she grew up. It was what you were taught. Tami Brancamp: Well, like multiplication. When I'm multiplying multiple numbers, it's like, I'm kind of just adding multiples of things. So, how I get to the answer is very different than how Dave does, yeah, and we've had experiences with care partners, who we were doing some of the pilot work, who felt very strong that their way was the only way. Is this some generational differences? I suspect there's some of that, but it's also just, it's personality. This is how I know how to do it, and this is how it should be done. Well, not necessarily. Katie Strong: It really mind blowing for me to be thinking about. I mean, I know that, like, you can teach things in different ways, but I just didn't really think about it from a math standpoint, because, probably because I know how to do things one way. If I know how to do it, it's probably one way, versus having more versatility in "If this doesn't work, try something else." Dave Brancamp: But like on a deck of cards at least the ones we use, they'll have, like a seven of diamonds. There's seven little diamonds on that card. Well, nothing else. Put your finger to them. There's nothing wrong with counting 1 2 3 4 5 6 7. Now, when you move over to the three, go 8 9 10, and there's your answer. They're like, "I can do that?" "I'm like, sure you can!" I can use my fingers? You know, it's, it's those, it's those little things that, unfortunately, probably for a lot of us and a lot of our clients, went through, at least in my experience, in math as we went through school, we took away those, what we call manipulatives in math, that you learn it right, bringing them back now, so that they're like, "Oh, I can do this"" So they can see it, or they can write it in a different way, or, you know, whatever it takes to help them. That's one of the pieces that's so amazing. Tami Brancamp: We definitely support a multi modal approach. Not just one way. Katie Strong: Which, I think the clinicians who are listening to this conversation will feel like, "Oh, I do a multi modal approach in all of the other things that I do in my interventions." And so, you know, that makes sense. Dave Brancamp: And that's where we saw that piece of saying that we're trying to unite math and language. The two of those do play together. You know, it's like because you just said you spend weeks and weeks with all your future clinicians training them on all these skills and language, so many of those will play out just as well in math, except to do it in a different way. Katie Strong: Mmm. So we've talked about what the intervention might look like, and we'll be excited to see what comes out from your projects that you're in the process of analyzing but looking ahead, what excites you most about where this field could go? Dave Brancamp: Oh my, that's the question! Tami Brancamp: There's a lot of work to be done. It actually is…it's fun. We are wondering, you know, how might it be if it's on a one on one, a more traditional model, right for our outpatient settings, versus small groups. Katie Strong: I'll say this. I should have said it earlier, but for those of you listening, I'll put in a link to Virtual Connections and if you're interested in seeing Tammy and Dave's math Aphasia + Math. Dave Brancamp: Yeah, it's aphasia plus math. It would be Level 1 or 2. They can come watch the whole thing. It's fascinating to watch them how they work. Tami Brancamp: They are best teachers, yep, without a doubt. Dave Brancamp: To your last question, "So that's with the clients?" But you know, there's been and we've talked on and we've touched on, like, "how do we help our clinicians?" And then the unfortunate side of that stool that sometimes gets forgotten is, what could we do for our caregivers? Does this help? Because we've all been taught differently. so sometimes you might look at one of the gamifications we did and went, "Oh, I can't do that. That's not how I add." We have a very set format, or do they understand the language? Do we make it clear enough. So, you know, we're I think that's a great question, because then we get torn to just time in the day to say, "But I want to still work with my clients, but we need to help clinicians so they can help us, and don't forget the caregiver in there." I know it's not an easy answer. It's not the it's nothing nice and smooth, but it's kind of the one that we've been really what is to what are we doing. Katie Strong: And probably also why it this hasn't, there aren't tons of resources already developed, right? That it is complex. Dave Brancamp: Well, and I will tie back to our attitudes. What we found, we were fortunate enough to do…. Tami Brancamp: IARC. The International Aphasia Rehab Conference. we presented there. Dave Brancamp: So some of our beginning there's an awful lot of interest out of Australia and Europe. But Australia and Europe, and I'm not trying to sound bad or negative, but they take look at math very differently than like England and the United States for sure does. That's a natural like thought, we don't accept the term. "I don't do math well." They don't like to say that. There's an increased interest, at least in those two areas of the world, to when we but we gotta strengthen this, this is important. So, we've found that very fascinating, that some of our folks who've drawn an interest and set out of this come out of the main countries of Europe, or from Australia, because they don't mind talking about a subject that we often go, "I'm good at this, right? Let Dave solve it." And it's like, well, but I don't have the skill set that all of you SLPs have. Tami Brancamp: In our earlier conversations, we touch on the fact that United States, it's okay for me to say, you know, "I don't do math, right?" It's okay, and it's sort of accepted in some cases, it's kind of a badge of honor in some ways. But if I were to say, "Oh, I can't read" you know, that's we one. We want to help if somebody admits it. But there's a personal sense of shame attached. So, in our country, I believe the perceptions are different. You have the person who's had the stroke, has survived the stroke, has the aphasia, and now also has the math difficulties. That's a lot to navigate, and I respect in our in our world, as a clinician, I can't address all of it. So following that Life Participation Approach, we're going to let our clients be our guide. Support, train, and look at where their priorities are. And it's never enough. There's never enough therapy, never enough opportunity to be in a group environment, because not everybody has access to that, you know, but I think, "Where can I make a difference?" Like, that's probably my question. Like, I can't fix the world, so let me keep backing it down, backing it down, backing it down. And if I can make a difference with 5, 10, 15, 20, people, Hey, and then let those ripples go as they go out and make a difference and learn. I think that, in itself, is powerful. Katie Strong: Beautiful, and certainly is conjuring up Audrey here. Well, I've got one last question for you as we wrap it up. But you know, what would you say to an SLP, who's listening right now and thinking, I want to help my clients with math, but I don't know where to start. Tami Brancamp: So one of, I think one thing for me is you do know basic math. You know everyday math. You do know how to do this. So one just start. You can get a little assessment. You can use the existing ones that are out there with our aphasia batteries or the Numerical Activities for Daily Living. Dave Brancamp: I would say, a deck of cards are not hard, you know, hopefully they have or some dice, yeah, and use those to generate the numbers. Or bring in, like, when they want to do tips, we would often just bring in receipts of anything and just say, "Let's say something cost $18.72. Round it up to 20 and make it a friendly number." So it's around 20, So it's a little bit easier for them to grab onto and hold, and it's okay to say, because we've done it in our own sets going through, "Oh, wait a minute, six plus six is not 13. Look at what I did here. I let me, let's check this and add it." Because sometimes you'll hear just even, you know, like when any of us are doing something, you look and go, oops, I made a mistake. Tami Brancamp: Okay, right? Dave Brancamp: It's all right, hey, to make mistakes and say, that's what we all do. And then, you know, but I mean to me, it's if we can get, like, if you want to use one or two problems off a worksheet, use it as a driver to start discussion and say, "So what can we do?" And see if they can do anything. Because sometimes it's amazing what we'll find out is just knowing that 16 is a bigger number than just 12 is let them and then what's the difference between right there, you could figure out subtraction if they know it or not. And we often will in if they have a chance to look on the website or any of this stuff, we'll take out, like all the face cards, we'll take out the 10. Keep moving it down to numbers that they're comfortable with, like dice will only be the numbers one to six, yeah, but if I use two dice, I could make some interesting two digit numbers, right, that are in that range. So it's just things that make it so they can grab on. And then you can start adding and changing rules and some of the math games they may have seen, they just adjust them so that they have access points. The true rules of Krypto is, you must use all five cards in order to get a point. Well, we just change it usually is two, right? Tami Brancamp: Like we do for everything we can modify. Katie Strong: I love this. And I mean, I'm thinking, most clinics have a deck of cards and dice. Tami Brancamp: In most households in general, not but in general, you're going to have access to those tools. We didn't want people to have to go buy crazy stuff. I think there's one challenge I do want to think about and put out there. So, our new clinicians who are graduating, let's say they're in their mid-20s, and I know there's a range they are doing online banking. How are they going to support an older adult? Katie Strong: Oh, right. Tami Brancamp: Very structured and rigid in their checking account. I think we have to think about some again, different ways. None of the students that I teach today, and even our own son, they don't have a checkbook. Yeah, they don't write checks. So that's gonna introduce another variable down the road, but in the meantime, cards, dice, numbers, gamification, simplifying, watching language, thinking about executive function, number of steps, how we how we speak, the instructions. Give the directions. It's language. Dave Brancamp: And ask the client what they think or what they might have heard, because it's interesting what they would have, what we've learned from them as well. Katie Strong: Thank you so much for being a part of our conversation today, and for the listeners, I'll have some links in the show notes for you to check out for some info on Aphasia + Math. Thank you. Tami Brancamp: Thanks for having us. Dave Brancamp: And thanks for playing with us too. Thank you. Katie Strong: On behalf of Aphasia Access, thank you for listening. For references and resources mentioned in today's show please see our show notes. They're available on our website, www.aphasiaaccess.org.There you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, here at Central Michigan University in the Strong Story Lab, I'm Katie Strong. Resources Aphasia + Math focuses on strategies for the rehabilitation of everyday mathematics in people with aphasia. Tami and Dave focus on four pillars to support this work: Influencing Elements (math literacy, learning environment, aphasia severity); Math and Language (receptive & expressive language, cognition including executive function and memory); Foundational Math Skills (use of linguistic and numerical symbols, lexicon, syntax, semantics); and Aphasia Friendly Math Activities (gamification in learning, understanding math language, opportunities for communication). Their goal is to unite math and language. Contact Tami tbrancamp@med.unr.edu Join the Aphasia + Math Facebook Community Join an Aphasia + Math session on Virtual Connections Brancamp, T. & Brancamp, D. (2022). Exploring Aphasia + Math. Aphasia Access 24-Hour Virtual Teach-In. https://www.youtube.com/watch?v=2mGSOJzmBJI Girelli, L. & Seron, X. (2001). ) Rehabilitation of number processing and calculation skills. Aphasiology, 15(7), 695-71. https://doi.org/10.1080/02687040143000131 https://www.researchgate.net/publication/32888331_Rehabilitation_of_number_processing_and_calculation_skills#fullTextFileContent Tapia, M. (1996). Attitudes toward mathematics inventory. https://www.academia.edu/29981919/ATTITUDES_TOWARD_MATHEMATICS_INVENTORY
Episode 130: A tool for sneaky good interprofessional learning and collaboration: In Conversation with Hillary Sample and Dr. Steven Richman (00:54:26)
Take aways: Learn about Hilary and Steve's journey to enhance care for people with aphasia. Learn about communication access as a health equity issue. Identify systematic gaps and the disconnect between training and real world needs of people with aphasia. Learn about the development of the MedConcerns app. Get sneaky! Learn how the MedConcerns app can serve four functions simultaneously: 1) meeting the needs of someone with aphasia 2) serving as a tool that providers can use to communicate with people with aphasia 3) providing education to providers who learn about aphasia as they use the app 4) bringing SLPs and other providers together to meet the needs of people with aphasia Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, Young Person's Brain Injury Group, and Thursday Night Poets. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Hilary Sample and Dr. Steven Richman to discuss their app, MedConcerns. We're really excited to share this with you, so I'll jump into introducing them. Hilary G. Sample, MA, CCC-SLP Hilary is a speech-language pathologist, educator, and co-creator of MedConcerns, a communication support app that helps people with aphasia express medical concerns and participate more fully in their care. The app was born out of her work in inpatient rehabilitation, where she saw firsthand how often individuals with communication challenges struggled to share urgent medical needs. Recognizing that most providers lacked the tools to support these conversations, she partnered with physician Dr. Steven Richman to create a practical, accessible solution. Hilary also serves as an adjunct instructor at Cleveland State University. Steven Leeds Richman, MD Dr. Steven Richman is a hospitalist physician and co-creator of MedConcerns, a communication support app that helps people with aphasia express medical concerns and participate more fully in their care. With nearly two decades of experience in inpatient rehabilitation, he saw how often communication barriers prevented patients from being heard. In partnership with speech-language pathologist Hilary Sample, he helped translate core medical assessments into an accessible tool that supports clearer, more effective provider-patient communication. Transcript: (Please note that this conversation has been auto-transcribed. While we do our best to review the text for accuracy, there may be some minor errors. Thanks for your understanding.) Jerry Hoepner: Well, Hello, Hillary and Steve. Really happy to have you on this aphasia access conversations podcast. With me, I'm really looking forward to this conversation. It's maybe a year or 2 in the making, because I think this was at the previous Aphasia Access Leadership Summit in North Carolina. That we initially had some discussions about this work. And then life happens right? So really glad to be having this conversation today. Hilary Sample: And we're really glad to be here. Jerry Hoepner: Absolutely. Maybe I'll start out just asking a little bit about your background, Hillary, in terms of how you connected with the life participation approach and aphasia access and how that relates to your personal story. Hilary Sample: Sure, so I haven't been in the field long. I graduated in 2019 and began my career immediately in inpatient rehab. I have to remember. It's talk slow day, and I'm going to make sure that I apply that as I speak, both for me and for listeners. So I began on the stroke unit, primarily in an inpatient rehab setting, and I've worked there for the majority of my career. I came in as many, probably in our field do, trained and educated in more of an impairment based approach but quickly when you work with people, and they let you know who they are and what they need. The people that I worked with on the stroke unit, the people with aphasia let me know that they needed more of a life participation approach. You know I learned how vital it was to support communication and to help him, you know, help them access their lives, because most of the time I entered the room. They had something they wanted to communicate, and they had been waiting for someone who had those skills to support communication in order to get that message across. So it wasn't about drills it was about. It was about helping them to communicate with the world, so that I spent more and more time just trying to develop my own skills so that I could be that professional for them and that support. And then that took me. You know that it just became my passion, and I have a lot of room to improve still today, but it's definitely where my interest lies and at the same time I noticed that in general in our hospital there was a lack of communication supports used, and so I thought that in investing in my own education and training, I could help others as well. And so I started doing some program development to that end as well with training and education for healthcare staff. Jerry Hoepner: I just love the fact. And actually, our listeners will love the fact that it was patients who connected with you, people with aphasia, who connected with you and encouraged you to move towards the life participation approach, and how you learn together and how that's become your passion. That's just a really great outcome when people can advocate for themselves in that way. That's fantastic. Hilary Sample: Yeah, it really meant a lot to me to be able to receive that guidance and know that, you know there's an interest in helping them to let you know what they want from therapy, and that was there. But a lot of times the selections were impairment based, and then we. But there was something wrong, and we needed to uncover that. And that was, you know, that was the push I needed to be able to better support them. Jerry Hoepner: Yeah, that's really great, Steve. I'm interested in your story, too. And also how you came to connect with Hillary. Steve: I started as a trained as a family physician, had a regular outpatient office for a number of years, and then transitioned into inpatient rehab. That's where I really started to meet some people with aphasia. For the 1st time. Hilary and I have talked a few times about my training and education about aphasia before we met each other, and it was really minimal in Med school. They had lectures about stroke and brain injury, and some of the adverse effects you might get from that. And they, I'm sure, mentioned aphasia. But I really don't recall any details, and if they did teach us more, it would just nothing that I grasped at the time. So I would walk into these patient rooms, and what I would normally do for my trainings. I would ask people all these open, ended questions to start with, and then try to narrow down, to figure out what their problems are, and with people with aphasia, especially when they have minimal or no language skills. They couldn't. I was not successful at getting useful information out, and I remember walking out of those patient rooms and just being frustrated with myself that I'm not able to help these people, and the way I can help everyone else, because if I don't know what's going on. you know. How can I? It was really challenging and I really didn't know where to go. I talked to a few other doctors, and there didn't seem to be much in the way of good information about how to move forward. Eventually I met Hillary, and we would have these interesting episodes where I would talk or try to talk with the patients and get minimal, useful information. And Hillary would come back and say, they're having this problem and this concern. And with this medicine change. And how do you do that? How and that kind of started our us on the pathway that we've taken that recognition from my end that there's a lot that can be done. And the yeah. Jerry Hoepner: Yeah, I love that story, and it's a really good reminder to all of us that sometimes we forget about those conversations, the conversations with physicians, with other providers who might not know as much about aphasia. I'll just tell a really quick story. My wife used to work in intensive care, and of course she had been around me for years, and they would have someone with aphasia, and her colleagues would be like, how do you even communicate with them, and she would be coming up like you, said Steve, with all of this information about the patient, and they're like, where are you getting this information. The person doesn't talk. Hilary Sample: Yes. Jerry Hoepner: And that just emphasizes why it's so important for us to have those conversations, so that our all of our colleagues are giving the best care that they can possibly provide. Hilary Sample: That's a great story. That was very much like almost verbatim of some of the conversations that we initially had like, where is this coming from? They don't talk, or you know they don't have. Maybe they don't have something to say, and that's the assumptions that we make when somebody doesn't use verbal communication. You know, we quickly think that maybe there's not something beneath it, you know. I have a story as well. So what led to a little bit more toward where we are today. sitting in those rooms with people with aphasia and apraxia and people with difficulty communicating. There's 1 that stuck out so much. She was very upset, and that it was. And I we had just really developed a very nice relationship, a very supportive relationship she kind of. She would let me have it if she was upset about something. We had really honest conversations and it and it was earlier on to where I was stretching my skills in in using communication supports, and she really helped me grow. But I remember being in her room one day, and she had something to share. And this is a moment that repeated itself frequently, that the thing that needed to be shared was medical in nature, you know, in inpatient rehab. That's a frequent. That's a frequent situation that you run into. And we sat there for maybe 15 min, maybe more. And we're working on getting this out. We're narrowing it down. We're getting clarity. We're not quite there yet, as I said, I'm still new, and but the physician walks in and we pause. You know I'm always welcoming physicians into the into therapy, because I really see that we have a role there. But and talk slow. Hilary, the physician, asked an open-ended question like Steve was talking about asking those open-ended questions as they're trained to do, and it was a question that the person with aphasia didn't have the vocabulary available to answer, and before I would jump in, that person shrugged her shoulders and shook her head that she didn't have anything to share with them, and I was like, but we had just been talking. You know, there's definitely something, and I think I just sat there a little bit stunned and just observing more. And you know the physician finished their assessment mostly outside of verbal communication, and left the room, and then I spoke to her, and we. We tracked down what the rest of her concern was, and clarified it, and then I found the physician who was not Dr. Richman, and I shared all the things that they had told me that she had told me, and I remember her saying I was just in there. She didn't have anything wrong. and I and I was, you know, I told her, like the communication supports that I used, and you know we got that. We moved forward with the conversation. But there were a few things that stuck out to me in that, and one was the way that the physician was communicating wasn't using. They weren't using supports. For whatever reason, I didn't have that knowledge yet. We dove into the literature to learn more later on. The second thing was that the person with aphasia seemed to give up on the provider, knowing that since supports weren't being used. It wasn't going to be a successful communication attempt. So why even bother, and that definitely fits her personality. She's like I give up on you. And the 3rd thing was that the education about that somebody has something to share the education about. Aphasia was lacking, so you know that the person's still in there. They still have their intellect, their identity, their opinions, beliefs. But they didn't have the ability to communicate that piece seemed to be missing on the part of the provider, because they were saying they didn't have anything to share. So, it was like, I said that situation happened repeatedly, and very much. Sounds just like yours, but it hit me how much there was to do. And so, hearing, you know Steve's experiences that are on the other side of that. Such a caring, the one thing that led me to want to speak to Steve is that he's a very compassionate caring physician, so it's not a lack of care and compassion. But what else was going on what led to this, and we started learning that together. It was really interesting for me to learn how Hillary's 1st assumption is. Why aren't these physicians using communicative supports or other things that we were never taught about? The assumption that the docs know all this, and there's plenty we don't know. Unfortunately, there's, you know there's so much out there. Steve Richman: The other thing Hillary touched on that was so true in my experience, is here. I'm meeting people that had a significant event, a traumatic brain injury, a bad stroke. And we're so used to judging people's intelligence through their speech. And they're not speaking. And it's so easy to start thinking there's just not much going on up there, and I didn't have the education or information or training to know for a long time. That wasn't the case until my dad had a stroke with aphasia. And so yeah, there's still plenty going on there just hard to get it out. And even as a medical provider, I really wasn't fully aware of that. And it took personal experience and learning from Hillary to really get that. it's still there just need to find out how to help them get it out. Jerry Hoepner: Yeah, I think that's a rather common story, especially for people with aphasia. But even for people without aphasia, that sense that the doctor is coming in, and things have to happen. And I know I'm sitting here with Steve, who is very compassionate and wants to ensure that communication. But I think there's a little bit of fear like, oh, I can't get it out in this context, and just bringing awareness to that, and also tools. So, tools in education. So those physicians can do the work that they need to do and get that knowledge that they may have never been exposed to, and probably in many cases have never had that training to communicate with someone so like you, said Steve. How are you supposed to know when they didn't train us in this? And I guess that brings us back around to that idea that that's part of the role of the speech language pathologist and also kind of a vacancy in tools. Right? We're. We're just missing some of the tools to make that happen consistently across facilities and across people. So, I'm really interested in hearing a little bit about the tools you've created, and kind of the story leading up to that if you if you don't mind sharing. Hilary Sample: Absolutely. 1st I'll share. There's a quote, and I'm not going to remember who said it. Unfortunately, I'll come up with it later, and I'll make sure to share with you. But that healthcare is the medium by or I'm sorry. Communication is the medium by which healthcare is provided, or something to that extent. We need communication in order to ensure equal access to health care. And like you said that gap, it's really big, and it's a systemic issue. So, leading up to us, coming together, we had those experiences on both of our ends. I realized that I wasn't a physician. I already knew this, but I also I was trying to provide communication support to enable them to communicate something on a topic that I'm not trained in. In order to really give what it's due right? I don't know what questions that Steve is going to ask next, you know I tried, but I and I tried to listen, but I didn't always have, you know. Of course, I don't have that training, so know your limits right. But I did. The general overarching method that I was using was we'd have concerns to choose from, including the question mark that enabled them to tell. Tell me that you're way off, or you didn't guess it, or it's not on here. And then narrow choices that I try to come up with, and we'd move on like that. And anytime somebody appeared to have a medical concern. There's those general topics that you would try to see if it's 1 of these things. One of these concerns, and then those would generally take you to a series of sub questions, and so on, and so forth. So, I recognize that this was repeatable. I also, at the same time as I shared, was recognizing that communication supports weren't being used. And that doesn't. That doesn't end with, you know, a physician that's also nurses nursing aides. That's therapists, including SLPs, and you know, so I'm doing a thing that can be repeated. Why not stop recreating it every time I enter the room and make it into something that I can bring with me a prepared material that I can bring with me and ideally share it with others. So, I again, knowing my limitations, know what I have to bring to that equation. But I knew that I needed to partner with someone that cared just as much but had the medical knowledge to inform that tool. So at 1st it was a print little framework that I brought, and what happened is, I came up to Steve, and I let him know what I was thinking, and he was open and willing to work together on this, and Hillary showed me these pictures that were kind of showing some general medical concerns, and brought up the whole concept and we initially were going for this pamphlet booklet idea, you know. If you have this concern, you go to this page to follow it up with further questions, and then you go to this other page to finalize the subs. We realized there was a lot of pages turning involved to make that work, and we eventually turned it into an app where you could take your concern, and we start with a general Hello! How are you? You know? Kind of what's the overall mood in the room today. And then what medical concerns do you have? And then from those concerns, appropriate sub questions and sub questions and timeframes, and the stuff that you would want to know medically, to help figure out the problem. And then go ahead. I'm sorry. Jerry Hoepner: Oh, oh, sorry! No, that's terrific. I appreciate that that process and kind of talking through the process because it's so hard to develop something like this that really provides as much access as is possible. And I think that's really key, because there's so many different permutations. But the more that you get into those the more complex it gets. So, making it easy to access, I think, is part of that key right? Hilary Sample: One thing that I'm sorry. Did you want to say? Yeah, I'll say, okay, 1. 1 part of it. Yes, the accessibility issue. Every provider has a tablet or a phone on them, and many of our patients and their families also do so. It made it clear that it's something that could be easier to use if that's the method somebody would like to use, but also having a moment where my mind is going blank. This is gonna be one of those where we added a little bit. This is what you call a mother moment. Jerry Hoepner: Okay. Steve Richman: The one thing that was fascinating for me as we were developing this tool is I kept asking why? And Hillary kept explaining why, we're doing different parts of it. And at this point it seems much more obvious. But my biggest stumble at the beginning was, why are these Confirmation pages. Why do we have to keep checking, you know? Do they mean to say yes? Do they mean to go ahead? And that education about how people with language difficulties can't always use language to self-correct. We need to add that opportunity now makes so much sense. But I remember that was a stumbling block for me to acknowledge that and be good with that to realize. Oh, that's really important. The other thing that Hillary said a lot, and I think is so true is in developing this tool. We're kind of developing a tool that helps people that know nothing about communication supports like myself how to use them, because this tool is just communication supports. You know, I hear these repeatedly taught me about the importance of layering the clear pictures and words, and the verbal, and put that all the well, the verbalizing, the app is saying the word in our case, so that could all be shared and between all that layering hopefully, the idea gets across right and then giving time for responses. Jerry Hoepner: It sounds like the tool itself. Kind of serves as an implicit training or education to those providers. Right? Hilary Sample: And there's the idea that I was missing when I had a little bit of. So yes, all of those strategies. They take training right? And it takes those conversations. And it takes practice and repetition. And there's amazing, amazing things happening in our field where people are actually undertaking that that transformation, transforming the system from above right. Jerry Hoepner: Right. Hilary Sample: But one thing that a big part of this work was trying to fill the gap immediately. I know you and I had previously talked about Dr. Megan Morris's article about health equity, and she talks a lot about people with communication disorders, including aphasia. And you know there's and she mentions that people cannot wait. The next person pretty much cannot wait for that work to be done, though that'll be amazing for the people that come down the line, the next person, what can we do for them? So we also need to be doing that. And that's where we thought we could jump in. And so I think the biggest you know. The most unique aspect of MedConcerns is that, or of the tool we created is that it kind of guides the clinician, the healthcare provider, through using communication supports. So you know, when I go in the room I offer broad options, and then I follow up with more narrow choices, always confirming, making sure I'm verifying the responses like Steve talked about, and or giving an opportunity to repair and go back and then that I summarize at the end, ensuring that what we have at the end still is valid, and what they meant to say. And so that's how the app flows, too. It enables the person to provide a very detailed, you know, detailed message about what's bothering them to a provider that has maybe no training in communication supports, but the app has them in there, so they can. It fills the gap for them. Jerry Hoepner: Absolutely. It's kind of a sneaky way of getting that education in there which I really like, but also a feasible way. So, it's very pragmatic, very practical in terms of getting a tool in the hands of providers. It would be really interesting actually, to see how that changes their skill sets over time but yeah, but there's definitely room for that in the future. I think. Hilary Sample: We could do a case study on Dr. Richman. Steve Richman: whereas I used to walk out of those patient rooms that have communication difficulties with great frustration. My part frustration that I feel like I'm not doing my job. Well, now you walk out much more proudly, thinking, hey, I able to interact in a more effective way I can now do in visit what I could never accomplish before. Not always, but at least sometimes I'm getting somewhere, and that is so much better to know I'm actively able to help them participate, help people participate. I love writing my notes, you know. Communication difficulties due to blank. Many concerns app used to assist, and just like I write, you know, French interpreter used to assist kind of thing and it does assist. It's it makes it more effective for me and more effective for the person I'm working with. It's been really neat to watch you know, go from our initial conversations to seeing the other day we were having a conversation kind of prepping for this discussion with you and he got a call that he needed to go see a patient and I'll let you tell the story. So we're prepping for this. A couple of days ago. I think it was this Friday, probably, or Thursday, anyways, was last week and I'm at my office of work and again knock on the door. Someone's having chest pain. I gotta go check that out. So I start to walk out of the room. Realize? Oh, that room! Someone was aphasia. I come back and grab my phone because I got that for my phone and go back to the room. And it's interesting people as with anything. People don't always want to use a device. And he's been this patient, sometimes happy to interact with the device, sometimes wanting to use what words he has. And so I could confirm with words. He's having chest pain. But he we weren't able to confirm. What's it feel like? When did it start? What makes it better. What makes it worse? But using the app, I can make some progress here to get the reassurance that this is really musculoskeletal pain, not cardiac chest pain. Yes, we did an EKG to double check, but having that reassurance that his story fits with something musculoskeletal and a normal EKG. Is so much better than just guessing they get an EKG, I mean, that's not fair. So, it would have been before I had this tool. It would have been sending them to the er so they can get Stat labs plus an EKG, because it's not safe just to guess in that kind of situation. So, for me, it's really saved some send outs. It's really stopped from sending people to the acute care hospital er for quick evaluations. If I if I know from the get go my patient has diplopia. They have a double vision, because that's part of what communicated. When we were talking about things with help from MedConcerns. Yeah, when I find out 4 days later, when their language is perhaps returning, they're expressing diplopia. It's not a new concern. It's not a new problem. I know it's been a problem since the stroke, whereas I know of other doctors who said, Yeah, this person had aphasia, and all of a sudden they have these bad headaches that they're able to tell me about. This sounds new. I got to send them for new, you know whereas I may have the information that they've been having those headaches. We could start dealing with those headaches from the day one instead of when they progress enough to be able to express that interesting. Jerry Hoepner: Yeah, definitely sounds like, I'm getting the story of, you know the improvement in the communication between you and the client. How powerful that is, but also from an assessment standpoint. This gives you a lot more tools to be able to learn about that person just as you would with someone without aphasia. And I think that's so important right to just be able to level that playing field you get the information you need. I can imagine as well that it would have a big impact on medication, prescriptions, whatever use? But also, maybe even counseling and educating that patient in the moment. Can you speak to those pieces a little bit. Steve Richman: You know, one of my favorite parts of the app, Hillary insisted on, and I'm so glad she did. It's an education piece. So many people walk into the hospital, into our inpatient rehab hospital where I now work, and they don't recall or don't understand their diagnosis, or what aphasia is, or what happened to them. And there's a well aphasia, friendly information piece which you should probably talk about. You designed it, but it's so useful people are as with any diagnosis that's not understood. And then explained, people get such a sense of relief and understanding like, okay, I got a better handle of this. Now it's really calming for people to understand more what's going on with them. Hilary Sample: This is, I think you know, that counseling piece and education, that early education. That's some of the stuff that could bring tears to my eyes just talking about it, because it's; oh, and it might just now. So many people enter, and they may have gotten. They may have received education, but it may not have. They may have been given education, but it may not have been received because supports weren't used, or there's many reasons why, you know, even if it had been given, it wasn't something that was understood, but so many people that I worked with aphasia. That one of the 1st things that I would do is using supports. Tell them what's going on or give them. This is likely what you might be experiencing and see their response to that. And that's you know what aphasia is, how it can manifest. Why it happens, what happened to you, what tools might be useful? How many people with aphasia have reported feeling? And you might be feeling this way as well, and these things can help. And it's very simple, very, you know. There's so much more to add to that. But it's enough in that moment to make someone feel seen and you know, like a lot of my friends, or one of my friends and former colleagues, uses this, and she says that's her favorite page, too, because the people that she's working with are just like, yes, yes, that's it, that's it. And the point and point and point to what she's showing them on the app. It's a patient education page, and then they'll look at their, you know, family member, and be like this. This is what's going on this, you know, it's all of a sudden we're connecting on that piece of information that was vital for them to share. And it was. It was just a simple thing that I kept repeating doing. I was reinventing the wheel every time I entered the room, but it was. It stood out as one of the most important things I did. And so that's why Steve and I connected on it, and like it needed to be in the app. And there's more where that came from in the future planning. But we added to that A on that broad, you know, kind of that page that has all the different icons with various concerns, we added a feelings, concern emotions, and feelings so that someone could also communicate what's going on emotionally. We know that this is such a traumatic experience, both in the stroke itself, but also in the fact that you lost the thing that might help you to walk through it a little easier which is communicating about it and hearing education learning about it. But so those 2 tools combined have really meant a lot to me to be able to share with people, with aphasia and their families, and also another sneaky way to educate providers. Jerry Hoepner: Yeah, absolutely. Hilary Sample: Because that's the simple education that I found to be missing when we talked about training was missing, and this and that, but the like when Steve and I talked recently, we you know, I said, what did you really learn about aphasia? And you kind of said how speech issues? Right? Steve Richman: The speech diagnoses that we see are kind of lumped in as general like the names and general disorders that you might see, but weren't really clearly communicated as far as the their differential diagnoses being trained as a generalist, we would learn about, you know, neurology unit stroke and traumatic brain injury. And somewhere in there would be throwing in these tumors, which are huge aphasia and apraxia and whatnot, and I don't think I recall any details about that from Med school. They probably taught more than I'm recalling, but it certainly wasn't as much as I wish it was. Hilary Sample: and so that education can just be a simple way to bring us all together on the same page as they're showing this to the person that they're working with. It's also helping them to better understand the supports that are needed. Jerry Hoepner: Sneaky part. Steve Richman: Yeah, speaking of the sneaky part, I don't think I told Hilary this yet, but I'm sure we've all had the experience or seen the experience where a physician asked him, What does that feel like? And the person might not have the words even with the regular communication, without a communication disorder. and last week I was working with a patient that just was having terrible pain and just could not describe it. and using the icons of words on that he had a much better sense of. You know it's just this and not that, and those descriptors of pain have been really useful for people now without more with communication difficulties that I just started doing that last week. And it was really interesting. Hilary Sample: You mentioned about how those interactions with physicians are can be. Well, it's not nothing about you guys. Jerry Hoepner: It's the rest of the physicians. Hilary Sample: No, it's the, you know. There's a time. It's the shift in how our whole system operates that it's, you know I go in and I'm like, I just need notes if I need to speak about something important to my physician, because, like, I know that one reason I connect so deeply with people with communication disorders is that my anxiety sometimes gets in the way of my ability to communicate like I want to, especially in, you know, those kind of situations. And so, you know, it can help in many ways just having something to point to. But we also saw that with people with hearing loss, which, of course, many of the people that we run into in many of the patients that we work with are going to have some sort of hearing loss. People that speak a little different, you know. Native language. You know English as a second language. Jerry Hoepner: Absolutely. Hilary Sample: There and then. Cognitive communication disorders, developmental disorders, anybody that might benefit with a little bit more support which might include you and me. You know it can help. Jerry Hoepner: And I think you know the physician and other providers having the tools to do that education to use the multimodal supports, to get the message in and then to get responses back out again. I think it's really important. And then that process of verifying to just see if they're understanding it. Are you? Are you tracking with me? And to get that feedback of, I'm getting this because I think sometimes education happens so quickly or at a level that doesn't match, and they might not understand it. Or sometimes it's just a matter of timing. I know we joke about Tom Sather and I joke about this. We've had people come to our aphasia group before who traveled out to a place in the community and they're sitting next to you. And they say, what is this aphasia stuff everyone's talking about? And I'm like, you literally just passed a sign that said Aphasia group. Right? But it's so hard to ensure that the message does go in, and that they truly understand that until you get that Aha moment where you describe like, yes, that's me, that's it. And that's just so crucial. Hilary Sample: yeah, it's 1 of the most important pieces, I think to name it doesn't for anything that anybody is dealing with that's heavy, you know, to have to have it named can really provide relief just because that unknown, you know, at least at least you can have one thing that you know. I know what it is, and then I can learn more about it. Once I know what it is, I can learn more about it, and I can have some sort of acceptance, and I can start that grieving process around it, too, a little bit better. But when it goes unnamed, and the other part of it is if you don't tell me that, you know like that, you can see and understand what I might be experiencing, I might not think that you know what it is either, and I might not feel seen. So just the fact that we're both on board that we know I have this thing. I think it can take a lot of the weight off. At least, that's what I've seen when it's been presented. Jerry Hoepner: No or care, right? Hilary Sample: Yeah. Yes. Exactly. Jerry Hoepner: Yep, and that's a good a good chance to segue into we I know we picked on Steve a little bit as a physician but the system really kind of constrains the amount of time that people have to spend with someone, and they have to be efficient. I'll go back to that sneaky idea. This seems like a sneaky way to help change the system from within. Can you talk about that a little bit like how it might move care forward by. Hilary Sample: Showing what's possible. Yeah, I'm sorry, sure. In part time. Constraints, unfortunately, are very real, and without the knowledge of training how to communicate or support communication. It's challenging for us to move us physicians to move forward, but with something like our app or other useful tools in a short amount of time you could make some progress. And then, if you could document, this is worthwhile time worthwhile that I'm accomplishing something with my patient. I'm helping to understand what their issues are, and helping to explain what we want to do. That all of a sudden makes the time worthwhile, although time is a real constraint. I think, is general. Doctors are happy to spend extra time. If it's worthwhile that's helping our patient. That's the whole reason we go into this is help our people. We help the people we're working with, you know. No one wants to go in there and spend time. That's not helping anybody. But if you could justify the time, because I'm making progress. I'm really helping them great go for it. It's worth doing, and the part about efficiency. So there's so many ways that this focus on. And it's not even efficiency, because efficiency sounds like some success was achieved, you know. But this, this we only have this amount of time. One of the one of the things that's kind of interesting to me is that it an assumption? I've seen a lot, or I've heard a lot is that using communication supports takes time. More time and I have watched plenty, an encounter where the physician is trying, and it takes forever. I've experienced my own encounters as I was growing and deepening my own skills, and where it took me forever. And that's because we're trying. We care, but we don't have something prepared. So when you have a prepared material, it not only helps you to effectively and successfully you know, meet that communication need and find out what is actually bothering the person that you're working with. But it enables you to move at a pace that you wouldn't be able to otherwise, you know. So if Steve and I have this kind of running joke that I'll let you tell it because you have fun telling it. Steve Richman: With the MedConcerns app. I could do in a little while what I can never do before, and with the med concerns App Hillary could do in 5 min. What used to take a session? It's really. Jerry Hoepner: Yeah. Hilary Sample: Makes huge impacts in what we could accomplish, so less of a joke and more of just. Jerry Hoepner: Yes, but having the right tools really is sounds like that's what makes the difference. And then that gives you time and tools to dedicate to these conversations that are so important as a person who's really passionate about counseling. One of the things we were always taught is spending time now saves time later, and this seems very much like one of those kind of tools. Hilary Sample: Yeah. Well, we had one of the 1st times that we brought the prototype to a friend of ours who has aphasia. And it kind of speaks to the exactly what you just said. Spending time now saves time later, or saves money. Saves, you know, all the other things right is our friend Bob, and he doesn't mind us using his name. But I'll let you tell this story a little bit, because you know more from the doctor. Bob was no longer a patient of ours, but we had spent time with him and his wife, and they were happy to maintain the relationship, and we showed him that after he had this experience but he was describing experience to us, he was having hip pain. He had a prior stroke hemiplegic and having pain in that hemiplegic side. So the assumption, medically, is, he probably has neuropathy. He probably has, you know, pain related to the stroke, and they were treating with some gabapentin which makes sense. But he kept having pain severe. 10 out of 10. Pain severe. Yeah. And just. We went back day after day, and not on the 3rd day back at the er they did an X-ray, and found he had a hip fracture and look at our app. He was like pointing all over to the things that show the descriptors that show not neuropathic pain, but again, musculoskeletal pain and that ability to, you know, without words we could point to where it hurts. But then, describing that pain is a makes a huge difference. And he knew he very clearly. Once he saw those pictures he like emphatically, yes, yes, yes, like this is this, we could have, you know, if we could have just found out this stuff, we wouldn't have had to go back to the er 3 times and go through all that wrong treatment and this severe amount of pain that really took him backwards in his recovery to physically being able to walk. And things like that, you know, it's just finding out. Getting more clarity at the beginning saves from those kind of experiences from the pain of those experiences. But also, you know, we talked about earlier. If you have to sort of make an assumption, and you have to make sure that you're thinking worst case scenario. So in other situations where you send out with a chest pain and things like that, there's a lot that's lost for the person with aphasia because they might have to start their whole rehab journey over. They have to incur the costs of that experience. And you know they might come back with, you know, having to start completely over, maybe even new therapists like it's. And then just the emotional side of that. So, it not only saves time, but it. It saves money. It saves emotional. Yeah, the emotional consequences, too. Jerry Hoepner: Yeah. Therapeutic Alliance trust all of those different things. Yeah, sure. Yeah. I mean, I just think that alone is such an important reason to put this tool in the hands of people that can use it. We've been kind of talking around, or a little bit indirectly, about the med concerns app. But can you talk a little bit about what you created, and how it's different than what's out there. Hilary Sample: Yeah, may I dive in, please? Okay, so we yeah, we indirectly kind of talked about it. But I'll speak about it just very specifically. So it starts with an introduction, just like a physician would enter the room and introduce themselves. This is a multimodal introduction. There's the audio. You can use emojis. What have you then, the General? How are you? Just as Steve would ask, how I'm doing this is, how are you with the multimodal supports and then it gets to kind of the main part of our app, which is, it starts with broad concerns. Some of those concerns, pain, breathing issues, bowel bladder illness. Something happened that I need to report like a fall or something else and the list continues. But you start with those broad concerns, and then every selection takes you to a confirmation screen where you either, you know, say, yes, that's what I was meaning to say, or you go back and revise your selection. It follows with narrow choices under that umbrella concern, the location type of pain, description, severity, exacerbating factors. If you've hit that concern so narrow choices to really get a full description of the problem, and including, like, I said, timing and onset. And then we end with a summary screen that shows every selection that was made and you can go to a Yes, no board to make sure that that is again verified for accuracy. So, it's a really a framework guiding the user, the therapist healthcare provider person with aphasia caregiver whomever through a supported approach to evaluating medical concerns. So generally, that's the way it functions. And then there are some extras. Did you want me to go into those? A little bit too sure. Jerry Hoepner: Sure. Yeah, that would be great. Hilary Sample: Right? So 1 1. It's not an extra, but one part of it that's very important to us as we just talked about our friend Bob, is that pain? Assessment is, is very in depth, and includes a scale description, locations, the triggers, the timing, the onset, so that we can get the correct pathway to receiving intervention. This app does not diagnose it just, it helps support the verbal expression or the expression. Excuse me of what's wrong. So, it has that general aphasia, friendly design the keywords, simple icons that lack anything distracting, clear visuals simple, a simple layout. It also has the audio that goes with the icon, and then adjustable settings, and these include, if you know, people have different visual and sensory needs for icons per screen, so the Max would be 6 icons on a screen, although, as you scroll down where there's more and more 6 icons per screen. But you can go down to one and just have it. Be kind of a yes, no thing. If that's what you need for various reasons, you can hide specific icons. So, if you're in a setting where you don't see trachs and pegs. You can hide those so that irrelevant options don't complicate the screen. There's a needs board. So we see a lot of communication boards put on people's tray tables in in the healthcare setting, and those are often they often go unused because a lot of times they're too complex, or they're not trained, or they, for whatever reason, there's a million reasons why they're not used. But this one has as many options as we could possibly think might need to be on there which any of those options can be hidden if they need to be. If they're not, if they're irrelevant to the user language it's in. You can choose between English and Spanish as it is right now, with more to come as we as we move along, and then gender options for the audio. What voice you'd like to hear? That's more representative. And the body image for the pain to indicate pain location. There's some interactive tools that we like to use with people outside of that framework. There's the whiteboard for typing drawing. You can use emojis. You can grab any of the icons that are within the app. So, if you know we if it's not there and you want to detail more, you can use the whiteboard again. That needs board the Yes, no board. And then there's also a topic board for quick messages. We wanted to support people in guiding conversations with their health care providers. So, I want to talk to Steve about how am I going to return to being a parent? Once I get home, what's work life going to be. I want to ask him about the financial side of things. I want to ask him about therapy. I want to report to him that I'm having trouble with communication. I want to talk on a certain topic. There's a topic board where you select it. It'll verify the response. It has a confirmation page, but from there the physician will start to do their magic with whatever that topic is. And then, of course, there's those summary screens that I already detailed, but those have been very useful for both, making sure at the end of the day we verify those responses but then, also that we have something that's easy to kind of screenshot. Come back to show the physician. So show the nurse as like a clear message that gets conveyed versus trying to translate it to a verbal message at the end from us, and maybe missing something so straightforward, simple to address very complex needs, because we know that people with aphasia would benefit from simple supports, but not they don't need to stay on simple topics. They have very complex ideas and information to share. So we wanted to support that. That's what it is in a nutshell that took a nutshell. I love that. It's on my phone, or it could be on your. Jerry Hoepner: Oh, yeah. Hilary Sample: Or on your or on your apple computer. If you wanted that, it's on the app store. But I love this on my phone. So, I just pull in my pockets and use it. Or if you happen to have an another device that works also. Jerry Hoepner: Sure. Hilary Sample: We're in the. We're in the process of having it available in different ways. There's a fully developed android app as well. But we're very much learners when it comes to the business side of things. And so there's a process for us in that, and so any. Any guidance from anybody is always welcome. But we have an android that's developed. And then we're working on the web based app so that we could have enterprise bulk users for enterprise, licensing so that that can be downloaded straight from the web. So that's all. Our vision, really, from the onset was like you said, shifting the culture in the system like if there's a tool that from the top, they're saying, everybody has this on their device and on the device that they bring in a patient's room, and there's training on how to use it, and that we would provide. And it wouldn't need to be much, just simple training on how to use it. And then you see that they are. They get that little bit more education. And then it's a consistent. We know. We expect that it'll be used. The culture can shift from within. And that's really the vision. How we've started is more direct to consumer putting it on the app store. But that's more representative of our learning process when it comes to app development than it is what our overall vision was, I want to say that equally as important to getting this into systems is having it be on a person's device when they go to a person with aphasia's device when they go to an appointment. I always, when we've been asked like, Who is this? For we generally just kind of say, anybody that that is willing to bring it to the appointment, so that communication supports are used, and maybe that'll be the SLP. Maybe it's the caregiver. Maybe it's care partner or communication partner, maybe a person with aphasia. Maybe it's the healthcare staff. So, whoever is ready to start implementing an easier solution. That's for you. Jerry Hoepner: Yeah, absolutely. And that brings up a really interesting kind of topic, like, what is the learning curve or uptake kind of time for those different users for a provider on one hand, for a person with aphasia. On the other hand, what's a typical turnaround time. Hilary Sample: We've tried to make it really intuitive, and I think well, I'm biased. I think it is Hilary Sample: I for a provider. I think it's very easy to show them the flow and it, and it becomes very quickly apparent. Oh, it's an introduction. This is putting my name here. What my position is next is a how are you that's already walk in the room, anyways. And that's that. What are your concerns? Okay, that that all. Okay. I got that I think with time and familiarity you could use the tool in different ways. You don't have to go through the set up there you could jump to whatever page you want from a dropdown menu, and I find that at times helpful. But that's you. Don't have to start there. You just start with following the flow, and it's set up right there for you. The, as we all know people with the page I have as all of us have different kind of levels, that some people, they, they see it, they get it, they take the app, and they just start punching away because they're the age where they're comfortable with electronic devices. And they understand the concept. And it takes 5 seconds for them to get the concept and they'll find what they want. Some of our older patients. It's not as quick. But that's okay. My experience with it's been funny to show to use it with people with aphasia versus in another communication disorders, and using it with or showing it to people in the field or in healthcare in general, or you're just your average person most of the time that I showed this to a person with aphasia or who needed communication supports. It's been pretty quick, even if they didn't use technology that much, because it is it is using. It's the same as what we do on with pen and paper. It's just as long as we can show them at the onset that we're asking you to point or show me right. And so once we do that and kind of show that we want you to select your answer, and some people need more support to do that than others. Then we can move forward pretty easily. So people with aphasia a lot of times seem to be waiting for communication supports to arrive, and then you show them it, and they're like, Oh, thanks, you know, here we go. This is what's going on. Of course, that's there are varying levels of severity that would change that. But that's been my experience with people with aphasia. When I show people that do not have aphasia. I see some overthinking, because you know. So I have to kind of tell people like, just them you want them to point and hand it over, you know, because when I've seen people try to move through it, they're overthinking their what do you want me to do? I'm used to doing a lot with an app, I'm used to, you know, and the app moves you. You don't move it. So the real training is in stepping back and allowing the communication supports to do what you're thinking. I need you to do right. Step back and just let the person use the communication supports to tell you their message. And you, you provide those supports like we tend to provide more training on how to help somebody initiate that pointing or maybe problem solving the field of responses or field of icons that's on the page, or, you know, troubleshooting a little bit. But the training more is to kind of have a more hands off. Approach versus you know, trying to move the app forward since the apps focus, really, on describing what's going on with somebody and not trying to diagnose once someone gathers. Oh, I'm just trying to get out what I'm experiencing, it becomes very intuitive. Yeah, that's the issue. And this is, yeah, that's how describes it more. And yeah, this is about when it started that Jerry Hoepner: That makes sense. And it's in line with what we know about learning use of other technologies, too, right? Usually that implicit kind of learning by doing kind of helps more than here's the 722, you know, pieces of instruction. So yeah, that kind of makes sense. Hilary Sample: Simple training. I just to throw in one more thought I you know a little bit of training on what communication supports are, and then you show them. And it really, the app shows you how to use communication supports. And so it, you know instead of having to train on that you can just use the app to show them, and then and then they sort of start to have that awareness on how to use it and know how to move forward from there. Generally, there's some training that needs to be to be had on just where things are maybe like the dropdown menu, or you know what's possible with the app, like changes, changes, and settings and the adjustments that we talked about earlier but usually it's a little bit of a tool that I use to train people how to use communication support. So, it's sort of like the training is embedded. So we're doing both at the same time. You're getting to know the app, and you're learning more about how to support communication in general. Jerry Hoepner: I think that's a really great takeaway in terms of kind of that double value. Right? So get the value to the person with aphasia from the standpoint of multimodal communication and self-advocacy and agency, those kinds of things, and then the value to the providers, which is, you learn how to do it right by doing it. Hilary Sample: Which is great. Yeah. Jerry Hoepner: Really like that. Hilary Sample: Some of the most meaningful experiences I've had are with nurses like, you know, some of those incredible nurses that, like they see the person with aphasia. They know they know what to say, they want to. They know that the person knows what they want to say, but has difficulty saying it. We have one person I won't mention her name, but she's just incredible, and you know the go to nurse that you always want to be in the room she pretty much was like, give me this as soon as we told her about it, and I did, you know, and she goes. She's like, see, you know she uses it as a tool to help her other nurses to know what's possible for these. She's such an advocate but if it can be used like that to show what's possible like to show, to reveal the competency, and to let other nurses know, and other physicians, and so on, to help them to truly see the people that they're working with. It's like that's my favorite part. But the it's not only like a relief for her to be able to have a tool, but it's exciting, because she cares so much, and that like Oh, I'll take that all day long. That's wonderful. Jerry Hoepner: Absolutely well, it's been really fun having a conversation with you, and I've learned a lot more than I knew already about the app. Are there any other things that we want to share with our listeners before we close down this fun conversation. Hilary Sample: I think maybe our hope is to find people that are ready to help kind of reach that vision of a culture shift from this perspective from this angle. Anybody that's willing to kind of have that conversation with us and see how we can support that. That's what we're looking for just to see some system change and to see what we can do to do that together, to collaborate. So if anybody is interested in in discussing how we might do that, that's a big goal of ours, too, is just to find partners in in aphasia advocacy from this angle. Jerry Hoepner: That's great! Hilary Sample: Perfect. I totally agree. We're very grateful for this conversation, too. Thank you so much, Jerry. Jerry Hoepner: Grateful to have the conversation with both of you and just appreciate the dialogue. Can't wait to connect with you in future conferences and so forth. So, thank you both very much. Hilary Sample: Thank you. Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.
Episode 129: "Helping myself by helping other people: In Conversation with Cindy "Yee" Lam-Walker" (00:29:50)
In this episode you will: Discover how transitioning from participant to facilitator can accelerate personal recovery while creating meaningful support for others living with aphasia, demonstrating that helping others is often one of the most powerful ways to help yourself continue growing. Learn practical strategies for building and sustaining aphasia support communities both online and in-person, including how to adapt materials for different communication abilities, recruit co-facilitators with complementary strengths, and grow through word-of-mouth rather than formal advertising. Understand how creative activities like movie groups, singing and dancing, and talk of the town (current events) serve as powerful therapy tools for participation and language recovery. Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, Young Person's Brain Injury Group, and Thursday Night Poets. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Cindy "Yee" Lam-Walker. We'll be talking about her programming for individuals with aphasia by individuals with aphasia. This is the second episode in a two-part series featuring remarkable individuals who discovered that one of the most powerful ways to support their own recovery was by creating spaces to help others. We're continuing our June celebration of Aphasia Awareness Month, where we're highlighting the Life Participation Approach to Aphasia by featuring people who are living successfully with aphasia. Earlier this month, we heard from Sherry Lovellette, who started several online opportunities for individuals with aphasia, including Aphasia Gatherings, Online Book Club, sewing, and an in-person support group. We also heard from Dr. Lori Gray about her groundbreaking work integrating mindfulness into stroke recovery. Before we begin today's conversation, I'd like to share a bit about today's guest. Cindy "Yee" Lam Walker is a person with aphasia from Atlanta, Georgia. She was a Treasury Officer before her stroke and was great with numbers and money. On March 19th, 2019, she experienced a ruptured brain aneurysm. It caused bleeding in her brain, which required brain surgery. After the surgery, she didn't remember what happened for the first 3 months. She began to speak, but it was difficult. She couldn't walk. She had to use the wheelchair, and she was in the hospital for 5 months. She wouldn't eat. She couldn't go back to her job, a job that she loved but she could no longer do math. Her whole life changed! In winter, she was depressed and didn't want to live. She wanted to die so she could see God and my parents in heaven. In spring, her doctor prescribed some new medications, and she began to feel better. She met her speech therapist, Emily. With her help, she started to talk, to read, and to learn simple math. After her stroke, she didn't care about money anymore. She has many new friends and makes origami to give to people. When she is folding origami, she feels like her mother is teaching me how to fold. Now she writes poetry and leads groups for other people with aphasia. Transcript: Jerry Hoepner: Well, I'm really excited to have a conversation with you. Katie Strong said that she connected you with you when she was in Atlanta a few weeks ago, and. Yee Cindy Lam Walker: Yeah, we had a great time. Jerry Hoepner: Yeah, sounds like it. And she had this idea for a conversation with you about your experience starting an aphasia group for people with aphasia by people with aphasia. And we just think it's a wonderful idea. And I didn't even realize how much you were doing until I saw some of the things that you sent me, and I've heard a little bit here and there from others. But wow! It's really. It's really impressive. Yee Cindy Lam Walker: The number of people in those classes. Scott did that. I couldn't add up things like he does, so he took care of that I don't even know he was doing it for my classes, but he spent time doing that. But I'm the one who likes to organize it among people and I. I pick some of my other friends to be the host. I'm not always the host for all these classes, so. Jerry Hoepner: See that. That's really a great idea on your part. People with interest or expertise in those different areas. And yeah, it's quite the lineup of activities that you have kind of across the whole range of interests and topics. So, I'm excited to talk about it. Yeah. Those numbers that Scott put together are really impressive. 2,400 people. Wow. Yee Cindy Lam Walker: Not at different times, you know, it's not like, yeah. He did the math. Jerry Hoepner: Yeah, that's a that's a lot of people, though, when you think about how much people struggle to pull people together, those are really great numbers. And obviously you're doing something really well. Yee Cindy Lam Walker: Yeah, I enjoyed it, I think. You know, right now I don't have a real job. So, I like doing this to help myself and to help other people, too, you know. Jerry Hoepner: Yeah, absolutely. I think it's as good or as meaningful as any job. The things that you're doing so really excellent work. Well, is it okay? If we kind of start having a conversation about those questions that I sent and try to pull those pieces together. Yee Cindy Lam Walker: Yes. Jerry Hoepner: That sounds good. As I said, I'm really interested to learn about your background and kind of your journey through this experience. How has your personal experience with aphasia shaped your approach to community leadership? Yee Cindy Lam Walker: For me. After my stroke efforts. I was depressed; you know my whole life changed. I didn't really want to live. Really, my parents passed. I figure, you know, if I die, I will see them in heaven with God and my parents. I didn't want to live after the hospital. I was there for 5 months, and I got home. I told Scott that just leave me in the bedroom. Leave it there for one week, then I'll be gone. And he worried about me. So, he kept calling people to help people understand what I'm going through. And shortly after I started to go to an Emory office, where I met my speech therapist. Her name is Emily, and she can tell by she looks at me, and she's like, "Are you depressed right now?" And I'm like, "Yeah, I don't really want to live." And then she said, "Well, you know, you come to my office here. You are aphasia." And I'm like. "Wait what?" And she said, "aphasia. And there are lots of people with aphasia all over the world. It is the inability to read and talk, but we can help you." And when she said that to me I all of a sudden woke up like, "Oh, I can't! I'm not the only person with this, you know." I knew I had stroke, but I never heard of the word aphasia and when she said that she woke me up and I started to read and talk with her. So, And because of that I felt like she helped me. I want to help other people, too you know. I started to start to like my life a little bit and then, after a while, I tell myself you know, your life right now is actually much better than before. You know I care a lot about money and all that stuff. But now I don't care about money anymore. I'm glad that I'm alive and I like to help people because a lot of people helped me when I was going through stroke, and later with my Chemo people there helped me so much that I want to be there to help them. and that makes me feel happy to be able to help others. Jerry Hoepner: Absolutely that sounds like that. Conversation with Emily was a real turning point for you. Yeah. Yee Cindy Lam Walker: Yeah, and that. Jerry Hoepner: Moving forward. Yee Cindy Lam Walker: I always tell people who are studying to be speech therapists. If I can do it all again. I wouldn't want to be a Treasury officer. I want to be a speech therapist because you get you guys to help so many people. You know, nobody really knows about that until they're going through stroke or other stuff. A regular person wouldn't know what is aphasia, you know. Jerry Hoepner: Right. You mentioned, as you were describing that journey, the stroke and the aphasia. And then you briefly mentioned your chemo. Can you tell us a little bit about that journey from recovering from the stroke and then finding out about the breast cancer? Yee Cindy Lam Walker: Yeah. Well, you know After my stroke. I hate going to the hospital, anyway. I've been in the hospital for 5 months but every year we get this mail, saying that oh, it's time for your mammogram. And so, Scott, usually he goes to the mailbox, and he likes going to the mailbox. I don't like to go. I don't really care what I get from the mailbox, but he likes to look through them and he told me. Oh, it's time for you to have mammograms and I'm like, I don't really want to go. And he said, No, I think you know you should do it, and I'm like, no, I said that. You know I hate being in a hospital. I'm so flat over there. There's no way I'll ever get breast cancer. But he kept forcing me and forcing me. And I finally went. And I'm so glad that I went, you know, because I have breast cancer Stage 2. If I didn't go, it could be Stage 3 or Stage 4 so, and it's him kind of forcing me to go. And I always thank him so much for keep forcing me to go. You know, and when I found out I have breast cancer. I never heard of this name called triple negative breast cancer. You know I was kind of surprised that I got this, but I never got angry or anything. The 1st thing I said to myself, is, you can handle it. You went through stroke, and now you're going through breast cancer, but you can handle it. And so, I you know, I went through all the stuff that goes through chemo. You know I yeah. And I'm glad that I never felt angry with anything. I just think that there's a reason for me to be going through this. Perhaps I'm there to tell people that like me you should go get your mammogram. You know so, and my life's still better, too, after that. Jerry Hoepner: Well, it seems like that. Mind shift, or that mindset shift that you experienced with Emily kind of led to the way that you responded to the cancer as well, just really, positively and forward looking. Yee Cindy Lam Walker: Yes, yeah. And I didn't try to be happy or anything. It just happened to me that you know I enjoy my life. Now I like my job before I was a Treasury officer, and I love the people. I work with my manager and shortly after I got my stroke and back then. I care so much about money now. I don't care about money anymore, you know. I think my life is even better. I get I met people that I never met before, and I spend more time with them now, like my husband's mother, Joyce. She was always very nice to me, but I didn't really like her too much back then. Perhaps my own mother was going through Chemo, and you know I didn't really like Joyce, but when I was going through stroke. She came to the hospital here. She came from Florida to Atlanta, and she was always in the hospital to help me you know, so I'm much closer to her now, you know, like people that I never really care about. They all came to help me. Jerry Hoepner: Wow! It sounds like you've got quite a quite the supportive network you've mentioned Scott a couple of times. Can you tell people just a little bit about who Scott is? Yee Cindy Lam Walker: Yeah, my husband he taught me a lot, I mean, he was helping me with my stroke and through Chemo you know, and neither one of us were us were angry. Well, he was a bit angry, not at me. But why are you having breast cancer now? He just couldn't believe it, but I'm like, well, it happened so let's just handle it. But most of all, he's always been here. Always drive me to the hospital you know, he would bring his computer in the hospital because he need to do his work. And I'm in there getting chemo all that stuff, you know? Yeah. So yeah. And you know, we met when we were college and I think our personality has changed a little bit since you know when we were in college. But we we're getting even closer now than before, I think, for some reason. Yeah. Jerry Hoepner: That's really great to hear that. And it just seems like you've kind of found your way through this process, and you just have such a good attitude. I'm interested. What was the moment you decided you kind of talked about this, that you were inspired by the people that were helping you. But what was the moment that you transitioned from being a participant in in various groups to being a facilitator and a leader? Yee Cindy Lam Walker: Well, I think I've been to some of those visual connections, you know that. And when I was part of them, I was shortly after my stroke. So after, like 2, 3 years later. I felt like, perhaps I should go to some classes for people who were not recently from stroke, but like me after several years and we might do something different compared to before. So, I decided that I would get a zoom where people can come, and you know and do certain things like we can read the news, or we can read about history articles. I think it's important that people can start to talk and weep. Because I mean, you know, right after my stroke. I had to learn all my ABCs you know, but it takes time, and that's why I felt people when they come to our zoom. If you want to just come, you don't have to say anything. Just see what we're doing, and then, by the time, whenever you feel like, it's the right time for you to start talking, then you can. I don't want them to think that. Oh, you come to the zoom, and you will start reading a sentence. No, I think it's just in your time. Whenever you're ready for it. You can, you know we will help you with seeing one sentence or something like that. So even though you know, people might come, and they couldn't say the sentence, which is fine because they can hear it and understand it right. They just can't say it. So, I started with like the conversation group and then talk of the town, and then I ask others to be host. So, I don't have to be the host for all of them movies and stuff like that. So, and you know it. And then I didn't really go and tell a lot of people about it. I just told several, and then they then they went and recruit more people, so. Jerry Hoepner: That's a a perfect transition to my next question, because it sounds like one of the. My next question was going to be, what strategies have been effective for you and growing your community. But you said, one thing is just let people join on their own time and and participate when they're ready to and then you mentioned that you shared with a few people, and they shared and kind of that word of mouth any anything else that's been helpful in growing that community. Yee Cindy Lam Walker: Yeah, I think for the zoom I want between, like, you know, 4 to 8 people, because if it's more than 12 people, it's hard to be able to read the sentence, because sometimes you need to go to the second page, you know, when you look at, you know, so I don't want to have too many people in in a zoom between 4 to 10 actually will be good because I want them to have several times to read instead of do it once, you know, if there's too many people there, so that's that I think will be good. I think that's it. I don't really yeah. And sometimes I will ask them, what kind of zoom do you want? And somebody might say, What about baking? I'm like, okay, that might be good, you know. I'm not a baker, or I don't like to cook. But if someone wants to be involved in that you can, but you need to be the host, because I won't say anything about cooking, because I don't really know too much about them you know. So. Jerry Hoepner: Yeah, it sounds like you have a lot of good things that you've kind of done through the program. I mean, just asking people what they want. Clearly with your numbers. Since 2023, 2,400 people that have attended, I mean, that's a lot. You're doing some things really well. To create that sense of community in that space where people can learn and continue to improve. Yee Cindy Lam Walker: Yeah, and I think, the I. So, I have like talk of the town. We had 3 classes talk of the town news and then talk of the town history article and talk of the town people.com. and I think someone who just recently have stroke or other illnesses. They might want to start with people.com. Then they can go to the second one, which is news, and then the last one is history articles, because history articles are pretty hard to read them. Lots of numbers like 1492, you know, for a lot of people. Those words are hard a lot of, so that will be the order. I would tell them. You can start with people.com. Those are pretty easy, you know, and then you move to the news article like what's going on like, you know. Pope is from United States that type of articles, and then history new articles, because they are really hard to say. A lot of the names and the years. I'm okay with the numbers. But a lot. They have a lot of problem with reading the numbers. Jerry Hoepner: Gotcha, you know, as long as you're talking about those I think might be a good time for me to kind of mention a few of them. So, you have one entitled, Wake up the week. Yee Cindy Lam Walker: Oh! Jerry Hoepner: Yeah, what's that one about. Yee Cindy Lam Walker: Oh, it was somebody wanted to host one with my group. His name is Ed, and she wants to talk about wake up this week just to see what people did during weekends, and then what you plan to do in, you know, this week, and so so about that. So, they can talk, you know and that's what it is about like. Oh, we went to see a movie, you know, did you like this movie? Or, Oh, how are your pets? How is the kitten? You know, stuff like that? So, it's a. Jerry Hoepner: That's a great idea, so kind of catching up with each other, and then. Yee Cindy Lam Walker: Yeah. Jerry Hoepner: Talking about plans for the future. Yee Cindy Lam Walker: Yeah. And he was the host. But then he started to go through therapy, so he's not the host. Now, this one really doesn't have a host. I kind of am the host, but you know, with the same people would come back anyway. So, I don't think we really need a host for this one. Jerry Hoepner: Gotcha, you have a conversation group that's pretty self-explanatory. And then you have one on movies and looks like TV series. And things like that. Yee Cindy Lam Walker: Yeah, yeah, like, we were watching. What is that one? I forgot the name. Yeah, like I would have. I would play the movie whiplash, you know. Have you seen Whiplash? Jerry Hoepner: I haven't seen that one yet. I've heard it's good. Yee Cindy Lam Walker: They! They use a lot of bad words in it. But if you're okay with that, then I think you might like whiplash. Yes, and then we'll ask people. So, what do you think about what happened to so and so you know that get them to talk? Yeah. Point is for people to able to talk. It doesn't have to be a long sentence. But you know, what did he do? Do you like his you know, Job, or, you know, stuff like that get people to. Jerry Hoepner: That's great. And then you have a singing and dance group, too. What's that one like? Yee Cindy Lam Walker: Oh, I just go onto YouTube and get the songs with the caption on the bottom so they can sing and listen to the song. I think somebody told me that if you have a tough time reading a sentence, but when you're listening to the music, actually, you can sing pretty fast like than just reading a line, or something like that. Jerry Hoepner: Yeah, that definitely can help get some of those words out for a lot of people with aphasia. So yeah, great a lot of really great offerings. As we're thinking about your programs. Is there anything you wish? Like? One thing you wish you had known before starting the process? Or maybe something you've learned throughout the process. Yee Cindy Lam Walker: Yeah, something that I learned that I never really thought about that is. So, it happened like half a year ago my class was going to at 5 pm, okay? And I decided, I'm going to go earlier than 5. I just want to get there. So, I can put the information. I got there at 4, 45, and there were 2 people there already. They were talking about their book, and then I'm like, I was just surprised like, how could somebody just enter the zoom, you know, and she told me, oh, I have this book club now. And I'm like, hmm! I never thought like I never thought. Oh, I can just go use somebody soon without telling her you know. I never even think about that. I I'm like what you know. And she said, Oh, yeah, she came on. I said you need to let me know, because I need to record. You've been into these classes, you know, you're going to be part of aphasia forward Book Club. Okay? So, I need to know if you will be coming here and stuff like that. But just the fact that I should have told people you use assume only from a facia forward. Don't just come out of nowhere and use this. Okay, it's free. Because somebody pays for this, you know. And if you want a free zoom, you can't. You can have the conversation for less than 40 min. Those are free. Then go to those and get them yourself. Don't just come here and use the zoom so. Jerry Hoepner: Gotcha. Yep, yeah. Good things. There's always a lot of logistics to to sort out. For Aphasia Forward. What? What are your hopes for the future, for your community? Yee Cindy Lam Walker: I think I want it to grow more in Georgia here. I kind of want it to be more like you guys in Wisconsin. We didn't have that. You know how we go to the camp there. I want people in Georgia can do that here because and they are starting with like a community right now. It will kind of, you know, far away before they can become like Wisconsin, but at least they are starting one here like there's like we. I saw them last Friday, when we went to Good morning. A facie when Jacqueline was there, you know. So. And then I met the 2 ladies who's going to be forming a company or something about a aphasia and help each other like that. So, I want my zoom to, for people who like they don't have to drive to an office. They can just be on my zoom at home. So yeah, if they want to learn how to, you know, sing, or read again, we can help. Jerry Hoepner: That's excellent. So, sounds like 2 big missions getting them to participate and to get kind of get back into doing things and then creating that community, that group of people with aphasia that understand one another and can connect with one another. Yee Cindy Lam Walker: Yeah, and I told them, you know. It might be good to have pickleball here, too. Jerry Hoepner: Yeah. Yee Cindy Lam Walker: I think a lot of people like it, you know. So, or like, you know, we would be surrounded by the fireplace, and we sang. You know those are nice things, you know words, you know, but we don't have one right now. Jerry Hoepner: Yeah, yeah, I think those are great aspirations for the future. I hope that it continues to grow. And you develop that community even further. If you had a suggestion, this is kind of a little add on question. But if you had a suggestion for someone with aphasia who is thinking? I want to start something like this. Where would you begin? Yee Cindy Lam Walker: Well, they can. I mean they can talk with me, and I can show them the list of clauses. And then, I guess, like, you need to be able to tell other people about it. I mean, there's not much you need to do. You just create one using a zoom, and then you know, people will start talking to each other, and then you will find more about people who are coming what they want to do. So perhaps, like, I can help in that way. I guess. Yeah, like I, I can give them some ideas of what I went through to get to where I am now. Jerry Hoepner: That's fantastic. I don't know if you know this, but you're a pioneer and definitely. There will be people, I'm sure, that'll reach out to you and ask you about how you made it happen. So? It's been really fun having this conversation. Is there anything else you want to share with our listeners? Yee Cindy Lam Walker: No, I don't think so. I mean yeah, I mean, at some point before I thought it would be good to have poetry class. But since you guys are so good in Wisconsin, I don't think I need to do another one. There'll be too many poetry for me a week. Jerry Hoepner: Well, it's certainly been fun getting to know you through aphasia camp and through poetry. And it is absolutely inspiring to see you continue to improve and to and to grow, and to be doing all of these things on your own. So, you are truly an inspiration and I'm glad to know you. Yee Cindy Lam Walker: Oh, thank you. Same to you. Yeah. Oh, I think a lot of people has been coming to Thursday night poetry. Jerry Hoepner: Yeah, we've had some really yeah good numbers and a lot of great people. I always think it's fun to see the new people, and to see how much you know. They kind of start out, and they're a little bit quiet, and then they just continue to grow. So it's really fun to watch that. Yee Cindy Lam Walker: Yeah. And a lot of people really enjoy listening to poetry or working so. Jerry Hoepner: Agreed. Yee Cindy Lam Walker: Okay. Thank you. 324 00:39:16.250 --> 00:39:18.330 Jerry Hoepner: All right. Good to see you. On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.
Episode 128: From Participant to Leader: Community Building in Aphasia Recovery – A Conversation with Sherry Lovellette (00:31:44)
Dr. Katie Strong of Central Michigan University has a vibrant conversation with Sherry Lovellette about how transitioning from participant to facilitator can accelerate personal recovery while creating meaningful support for others living with aphasia. They explore practical strategies for building and sustaining aphasia support communities both online and in-person, including how to adapt materials for different communication abilities and grow through authentic word-of-mouth connections. Sherry also shares how creative activities like quilting and sewing have served as powerful therapy tools for her cognitive rehabilitation and fine motor skills, while providing opportunities to teach others and build additional community connections. This inspiring conversation demonstrates that helping others is often one of the most powerful ways to continue your own recovery journey, embodying the Life Participation Approach to Aphasia by showing how meaningful roles as a leader, teacher, and community builder can flourish alongside ongoing recovery.
Episode 127: Beyond the Plateau: Mindfulness in Aphasia Recovery – A Conversation with Lori Gray (00:47:01)
Dr. Katie Strong has a conversation with Dr. Lori Gray about her work which focuses on mindfulness and aphasia. During this episode you will • Learn how mindfulness practices can help manage daily communication challenges including neuro fatigue, word-finding difficulties, and the frustration that comes with living with aphasia. • Discover why recovery "plateaus" should be reframed as "nonlinear pause points" and how challenging traditional beliefs about recovery limitations can open new possibilities for continued growth. • Hear about an adapted Mindfulness-Based Stress Reduction program for stroke survivors and the positive outcomes from Dr. Gray's pilot study, including improved sleep, reduced stress, and enhanced quality of life. • Experience a guided mindfulness practice designed specifically for people affected by aphasia and learn practical ways to integrate mindfulness into both daily life and clinical practice.
Episode 126: Collaborative Referencing with Dr. Suma Devanga (00:36:41)
Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer. In this episode, Lyssa Rome interviews Dr. Suma Devanga about collaborative referencing, gesture, and building rich communicative environments for people with aphasia. Guest info Dr. Suma Devanga is an assistant professor in the Department of Communication Disorders and Sciences at Rush University Medical Center, Chicago, where she also serves as the director of the Aphasia Research Lab. She completed her PhD in Speech and Hearing science from the University of Illinois. Urbana Champaign in 2017. Dr. Devanga is interested in studying aphasia interventions and their impacts on people's everyday communication. Her recent work includes investigating a novel treatment called the Collaborative Referencing Intervention for Individuals with aphasia, using discourse analysis methods and patient reported outcome measures, studying group-based treatments for aphasia, and studying the use of gestures in aphasia. Additionally, she is involved in teaching courses on aphasia and cognitive communication disorders to graduate SLP students at Rush. She also provides direct patient care and graduate clinical supervision at Rush outpatient clinics. Listener Take-aways In today's episode you will: Understand the role of collaborative referencing in everyday communication. Learn about Collaborative Referencing Intervention. Describe how speech-language pathologists can create rich communicative environments. Edited transcript Lyssa Rome Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication disorders in my LPAA-focused private practice. I'm also a member of the Aphasia Access podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Suma Devanga, who is selected as a 2024 Tavistock Trust for Aphasia Distinguished Scholar, USA and Canada. In this episode, we'll be discussing Dr. Devanga's research on collaborative referencing, gesture, and building rich communicative environments for people with aphasia. Suma Devanga is an assistant professor in the Department of Communication Disorders and Sciences at Rush University Medical Center, Chicago, where she also serves as the director of the Aphasia Research Lab. She completed her PhD in Speech and Hearing science from the University of Illinois. Urbana Champaign in 2017. Dr. Devanga is interested in studying aphasia interventions and their impacts on people's everyday communication. Her recent work includes investigating a novel treatment called the Collaborative Referencing Intervention for Individuals with aphasia, using discourse analysis methods and patient reported outcome measures, studying group-based treatments for aphasia, and studying the use of gestures in aphasia. Additionally, she is involved in teaching courses on aphasia and cognitive communication disorders to graduate SLP students at Rush. She also provides direct patient care and graduate clinical supervision at Rush outpatient clinics. Suma Devanga, thank you so much for joining us today. I'm really happy to be talking with you. Suma Devanga Thank you, Lyssa, thank you for having me. And I would also like to thank Aphasia Access for this wonderful opportunity, and the Tavistock Trust for Aphasia and the Duchess of Bedford for recognizing my research through the Distinguished Scholar Award. Lyssa Rome So I wanted to start by asking you how you became interested in aphasia treatment. Suma Devanga I became interested in aphasia during my undergraduate and graduate programs, which was in speech language pathology in Mysore in India. I was really drawn to this population because of how severe the consequences were for these individuals and their families after the onset of aphasia. So I met hundreds of patients and families with aphasia who were really devastated by this sudden condition, and they were typically left with no job and little means to communicate with family and friends. So as a student clinician, I was very, very motivated to help these individuals in therapy, but when I started implementing the treatment methods that I had learned, what I discovered was that my patients were showing improvements on the tasks that we worked on in therapy. Their scores on clinical tasks also were improving, but none of that really mattered to them. What they really wanted was to be able to easily communicate with family, but they continued to struggle on that, and none of the cutting-edge treatment methods that I learned from this highly reputable program in India were impacting my patients' lives. So I really felt lost, and that is when I knew that I wanted to do a PhD and study this topic more closely, and I was drawn to Dr. Julie Hengst's work, which looked at the bigger picture in aphasia. She used novel theoretical frameworks and used discourse analysis methods for tracking patient performance, as opposed to clinical tests. So I applied to the University of Illinois PhD program, and I'm so glad that she took me on as her doctoral student. And so that is how I ended up moving from India to the US and started my work in aphasia. Lyssa Rome I think that a lot of us can probably relate to what you're describing—that just that feeling of frustration when a patient might improve on some sort of clinical tasks, but still says this is not helping me in my life, and I know that for me, and I think for others, that is what has drawn us to the LPAA. I wanted to sort of dive into your research by asking you a little bit more about rich communicative environments, and what you mean by that, and what you mean when you talk about or write about distributed communication frameworks. Suma Devanga So since I started my PhD, I have been interested in understanding how we can positively impact everyday communication for our patients with aphasia. As a doctoral student, I delved more deeply into the aphasia literature and realized that what I observed clinically with my patients in India was consistent with what was documented in the literature, and that was called the clinical-functional gap. And this really refers to the fact that we have many evidence-based aphasia treatments that do show improvements on clinical tasks or standardized tests, but there is very limited evidence on these treatments improving the functional use of language or the everyday communication, and this remains to be true even today. So I think it becomes pretty important to understand what we are dealing with, like what is everyday communication? And I think many aphasia treatments have been studying everyday communication or conversational interactions by decontextualizing them or reducing them into component parts, like single words or phrases, and then we work our way up to sentence structures. Right? So this approach has been criticized by some researchers like Clark, who is an experimental psychologist, and he called such tasks as in vacuo, meaning that they are not really capturing the complexity of conversational interactions. So basically, even though we are clinicians, our ultimate goal is improving everyday communication, which is rich and emergent and complex, we somehow seem to be using tasks that are simplified and that removes all of these complexities and focuses more on simple or specific linguistic structures. So to understand the complexities of everyday communication, we have shifted to the distributed communication framework, which really originates from the cultural historical activity theories and theories from linguistic anthropology. Dr. Julie Hengst actually proposed the distributed communication theory in her article in the Journal of Communication Disorders in 2015, which highlights that communication is not just an individual skill or a discrete concept, but it is rather distributed. And it is distributed in three ways: One is that it is distributed across various resources. We communicate using multiple resources, not just language. We sign, we use gestures, or facial expressions. We also interpret messages using such resources like dialects and eye gaze and posture, the social context, cultural backgrounds, the emotional states that we are in, and all of that matters. And we all know this, right? This is not new, and yet, we often give credit to language alone for communication, when in reality, we constantly use multiple resources. And the other key concept of distributed communication theory is that communication is embedded in socio- cultural activities. So depending on the activity, which can be a routine family dinnertime conversation or managing relationships with your co workers, the communicative resources that you use, their motives, and the way you would organize it, all of that would vary. And finally, communication is distributed across time. And by that we mean that people interpret and understand present interactions through the histories that they have experienced over time. For example, if you're at work and your manager says you might want to double check your reports before submitting them based on prior interactions with the manager and the histories you've shared with them, you could interpret that message either as a simple suggestion or that there is a lack of trust in your work. So all in all, communication, I think, is a joint activity, and I think we should view it as a joint activity, and it depends on people's ability to build common ground with one another and draw from that common ground to interpret each other's messages. Lyssa Rome I feel like that framework is really helpful, and it makes a lot of sense, especially as a way of thinking about the complexity of language and the complexity of what we're trying to do when we are taking a more top-down approach. So that's the distributed communication theory. And it sounds like the other framework that has really guided your research is rich communicative environments. And I'm wondering if you could say a little bit more about that. Suma Devanga Absolutely. So this work originates from about 80 years of research in neuroscience, where rodents and other animals with acquired brain injuries showed greater neuroplastic changes and improved functions when they were housed in complex environments. In fact, complex environments are considered to be the most well replicated approach to improve function in animal models of acquired brain injury. So Dr. Julie Hengst, Dr. Melissa Duff, and Dr. Theresa Jones translated these findings to support communication for humans with acquired brain injuries. And they called it the rich communicative environments. The main goal of this is to enrich the clinical environments. And how we achieve that is by ensuring that there is meaningful complexity in our clinical environments, and that you do that by ensuring that our patients, families, and clinicians use multimodal resources, and also to aim for having multiple communication partners within your sessions who can fluidly shift between various communicative roles, and to not just stay in that clinician role, for example. Another way to think about enriching clinical environments is to think about ensuring that there is voluntary engagement from our patients, and you do that by essentially designing personally meaningful activities, rather than focusing on rehearsing fixed linguistic form or having some predetermined goals. And the other piece of the enrichment is, how do we ensure there is a positive experiential quality for our patients within our sessions. And for this rather than using clinician-controlled activities with rigid interactional roles, providing opportunities for the patients to share stories and humor would really, you know, ensure that they are also engaging with the tasks with you and having some fun. So all of this put together would lead to a rich communicative environment. Lyssa Rome It sounds like what you're describing is the kind of speech therapy environment and relationship that is very much person-centered and focused on natural communication, or natural communicative contexts and the kinds of conversations that people have in their everyday lives, rather than more sort of strict speech therapy protocol that might have been more traditional. I also want to ask you to describe collaborative referencing and collaborative referencing intervention. Suma Devanga Yes, absolutely. So traditionally, our discipline has viewed word-finding or naming as a neurolinguistic process where you access semantic meanings from a lexicon, which you use to generate verbal references. And that theoretical account conceptualizes referencing as an isolated process, where one individual has the skill of retrieving target references from their stores of linguistic forms and meanings, right? So in contrast to that, the distributed communication perspective views referencing as a process where speakers' meanings are constructed within each interaction, and that is based on the shared histories of experiences with specific communication partners and also depending on the social and physical contexts of the interaction as well. Now this process of collaborative referencing is something that we all do every single day. It is not just a part of our everyday communication, but without collaborative referencing, you cannot really have a conversation with anyone. You need to have some alignment, some common ground for communicating with others. This is a fundamental feature of human communication, and this is not new. You know, there is lots of work being done on this, even in childhood language literature as well. Collaborative referencing was formally studied by Clark, who is the experimental psychologist. And he studied this in healthy college students, and he used a barrier task experiment for it. So a pair of students sat across from each other with a full barrier that separated them so they could not see each other at all, and each student had a board that was numbered one through 12, and they were given matching sets of 12 pictures of abstract shapes called tangrams. One participant was assigned as the director, who arranged the cards on their playing board and described their locations to the other, who served as the matcher and matched the pictures to their locations on their own board. So the pair completed six trials with alternating turns, and they use the same cards with new locations for each trial. And what they found was that the pairs had to really collaborate with each other to get those descriptions correct so that they are placed correctly on the boards. So in the initial trials, the pairs had multiple turns of back and forth trying to describe these abstract shapes. For example, one of the pictures was initially described as "This picture that looks like an angel or something with its arms wide open." And there had to be several clarifying questions from the partner, and then eventually, after playing with this picture several times, the player just had to say "It's the angel," and the partner would be able to know which picture that was so as the pairs built their common ground, the collaborative effort, or the time taken to complete each trial, and the number of words they used and the number of turns they took to communicate about those pictures declined over time, and the labels itself, or the descriptions of pictures, also became more streamlined as the as time went by. So Hengst and colleagues wanted to study this experiment in aphasia, TBI, amnesia, and Alzheimer's disease as well. So they adapted this task to better serve this population and also to align with the distributed communication framework. And surprisingly, they found consistent results that despite aphasia or other neurological conditions, people were still able to successfully reference, decrease collaborative effort over time and even streamline their references. But more surprisingly, people were engaged with one another. They were having really rich conversations about these pictures. They were sharing jokes, and really seemed to be enjoying the task itself. So Hengst and colleagues realized that this has a lot of potential, and they redesigned the barrier task experiment as a clinical treatment using the principles of the distributed communication framework and the rich communicative environment. So that redesign included replacing the full barrier with a partial barrier to allow multimodal communication, and using personal photos of the patients instead of the abstract shapes to make it more engaging for the patients, and also asking participants to treat this as a friendly game and to have fun. So that is the referencing itself and the research on collaborative referencing, and that is how it was adapted as a treatment as well. And in order to help clinicians easily implement this treatment, I have used the RTSS framework, which is the rehabilitation treatment specification system, to explain how CRI works and how it can be implemented. And this is actually published, and it just came out in the most recent issue in the American Journal of Speech Language Pathology, which I'm happy to share. Lyssa Rome And we'll put that link into the show notes. Suma Devanga Perfect. So CRI is designed around meaningful activities like the game that authentically provides repeated opportunities for the client and the clinician to engage in the collaborative referencing process around targets that they really want to be talking about, things that are relevant to patients, everyday communication goals, it could be things, objects of interest, and not really specific words or referencing forms. So the implementation of the CRI involves three key ingredients. One is jointly developing the referencing targets and compiling the images so clinicians would sit down with the patients and the families to identify at least 30 targets that are meaningful and important to be included in the treatment. And we need two perspectives, or two views, or two pictures related to the same target that needs to be included in the treatment. So we will have 60 pictures overall. An example is two pictures from their wedding might be an important target for patients to be able to talk about. Two pictures from a Christmas party, you know, things like that. So this process of compilation of photos is also a part of the treatment itself, because it gives the patients an opportunity to engage with the targets. The second ingredient is engaging in the friendly gameplay itself. And the key really here is the gameplay and to treat it as a gameplay. And this includes 15 sessions with six trials in each session, where you, as the clinician and the client will both have matching sets of 12 pictures, and there is a low barrier in between, so you cannot see each other's boards, but you can still see the other person. So you will both take turns being the director and the matcher six times, and describe and match the pictures to their locations, and that is just the game. The only rule of the game is that you cannot look over the barrier. You are encouraged to talk as much as you like about the pictures. In fact, you are encouraged to talk a lot about the pictures and communicate in any way. The third ingredient is discussing and reflecting on referencing. And this happens at the end of each session where patients are asked to think back and reflect and say what the agreed upon label was for each card. And this, again, gives one more opportunity for the patients to engage with the target. The therapeutic mechanism, or the mechanism of action, as RTSS likes to call it, is the rich communicative environment itself, you know, and how complex the task is, and how meaningful and engaging the task has to be, as well as the repeated engagement in the gameplay, because we are doing this six times in each session, and we are repeatedly engaging with those targets when describing them and placing them. So what we are really targeting with CRI is collaborative referencing and again, this does not refer to the patient's abilities to access or retrieve those words from their stores. Instead, we are targeting people's joint efforts in communicating about these targets, their efforts in building situated common ground. That's what we are targeting. We are targeting their alignment with one another, and so that is how we define referencing. And again, we are targeting this, because that is how you communicate every day. Lyssa Rome That sounds like a really fascinating and very rich intervention. And I'm wondering if you can tell us a little bit about the research that you've done on it so far. Suma Devanga Absolutely. So in terms of research on CRI thus far, we have completed phase one with small case studies that were all successful, and my PhD dissertation was the first phase two study, where we introduced an experimental control by using a multiple-probe, single-case experimental design on four people with aphasia, and we found significant results on naming. And since then, I have completed two replication studies in a total of nine participants with aphasia. And we have found consistent results on naming. In terms of impact on everyday interactions, we have found decreased trouble sources, or communicative breakdowns, you can call it, and also decreased repairs, both of which indicated improved communicative success within conversational interactions. So we are positive, and we plan to continue this research to study its efficacy within a clinical trial. Lyssa Rome That's very encouraging. So how can clinicians target collaborative referencing by creating a rich communicative environment? Suma Devanga Yeah, well, CRI is one approach that clinicians can use, and I'm happy to share the evidence we have this far, and there is more to come, hopefully soon, including some clinical implementation studies that clinicians can use. But there are many other ways of creating rich communicative environments and targeting referencing within clinical sessions. I think many skilled clinicians are already doing it in the form of relationship building, by listening closely to their patients, engaging with them in authentic conversations, and also during education and counseling sessions as well. In addition to that, I think group treatment for aphasia is another great opportunity for targeting collaborative referencing within a rich communicative environment. When I was a faculty at Western Michigan University, I was involved in their outpatient aphasia program, where they have aphasia groups, and patients got to select which groups they want to participate in. They had a cooking group, a music group, a technology group, and so on. And I'm guessing you do this too at the Aphasia Center of California. So these groups definitely create rich communicative environments, and people collaborate with each other and do a lot of referencing as well. So I think there is a lot that can be done if you understand the rich communicative environment piece. Lyssa Rome Absolutely. That really rings true to me. So often in these podcast interviews, we ask people about aha moments, and I'm wondering if you have one that you wanted to share with us. Suma Devanga Sure. So you know how I said that getting the pictures for the CRI is a joint activity? Patients typically select things that they really want to talk about, like their kids' graduation pictures, or things that they are really passionate about, like pictures of their sports cars, or vegetable gardens, and so on. And they also come up with really unique names for them as well, while they are playing with those pictures during the treatment. And when we start playing the game, clinicians usually have little knowledge about these images, because they're all really personal to the patients, and they're taken from their personal lives, so they end up being the novices, while the patients become the experts. And my patients have taught me so much about constructing a house and all about engines of cars and things like that that I had no knowledge about. But in one incident, when I was the clinician paired with an individual with anomic aphasia, there was a picture of a building that she could not recognize, and hence she could not tell me much at all. And we went back and forth several times, and we finally ended up calling it the "unknown building." Later, I checked my notes and realized that it was where she worked, and it was probably a different angle, perhaps, which is why she could not recognize it. But even with that new information, we continue to call it the "unknown building," because it became sort of an internal joke for us. And later I kept thinking if I had made a mistake and if we should have accurately labeled it. That is when it clicked for me that CRI is not about producing accurate labels, it is about building a common ground with each other, which would help you successfully communicate with that person. So you're targeting the process of referencing and not the reference itself, because you want your patients to get better at the process of referencing in their everyday communication. And so that was my aha moment. Lyssa Rome Yeah, that's an amazing story, because I think that that gets to that question sort of of the why behind what we're doing, right? Is it to say the specific name? I mean, obviously for some people, yes, sometimes it is. But what is underlying that? It's to be able to communicate about the things that are important to people. I also wanted to ask you about another area that you've studied, which is the use of gesture within aphasia interventions. Can you tell us a little bit more about that? Suma Devanga Yes. So this work started with my collaboration with my friend and colleague, Dr. Mili Mathew, who is at Molloy University in New York, and our first work was on examining the role of hand gestures in collaborative referencing in a participant who had severe Wernicke's aphasia, and he frequently used extensive gestures to communicate. So when he started with CRI his descriptions of the images were truly multimodal. For example, when he had to describe a picture of a family vacation in Cancun, he was, you know, he was verbose, and there was very little meaningful content that was relevant in his spoken language utterances. But he used a variety of iconic hand gestures that were very meaningful and helpful to identify what he was referring to. As the sessions went on with him, his gestural references also became streamlined, just like the verbal references do, and that we saw in other studies. And that was fascinating because it indicated that gestures do play a big role in the meaning-making process of referencing. And in another study on the same participant, we explored the use of hand gestures as treatment outcome measures. This time, we specifically analyzed gestures used within conversations at baseline treatment, probe, and maintenance phases of the study. And we found that the frequency of referential gestures, which are gestures that add meaning, that have some kind of iconics associated with them, those frequencies of gestures decreased with the onset of treatment, whereas the correct information units, or CIUS, which indicate the informativeness in the spoken language itself, increased. So this pattern of decrease in hand gestures and increase in CIUS was also a great finding. Even though this was just an exploratory study, it indicates that gestures may be included as outcome measures, in addition to verbal measures, which we usually tend to rely more on. And we have a few more studies coming up that are looking at the synchrony of gestures with spoken language in aphasia, but I think we still have a lot more to learn about gestures in aphasia. Lyssa Rome It seems like there that studying gestures really ties in to CRI and the rich communicative environments that you were describing earlier, where the goal is not just to verbally name one thing, but rather to get your point across, where, obviously, gesture is also quite useful. So I look forward to reading more of your research on that as it comes out. Tell us about what you're currently working on, what's coming next. Suma Devanga Currently, I am wrapping up my clinical research grant from the ASH Foundation, which was a replication study of the phase two CRI so we collected data from six participants with chronic aphasia using a multiple-probe, single-case design, and that showed positive results on naming, and there was improved scores on patient reports of communication confidence, communicative participation, and quality of life as well. We are currently analyzing the conversation samples to study the treatment effects. I also just submitted a grant proposal to extend the study on participants with different severities of aphasia as well. So we are getting all the preliminary data at this point that we need to be able to start a clinical trial, which will be my next step. So apart from that, I was also able to redesign the CRI and adapt it as a group-based treatment with three participants with aphasia and one clinician in a group. I actually completed a feasibility study of it, which was successful, and I presented that at ASHA in 2023. And I'm currently writing it up for publication, and I also just secured an internal grant to launch a pilot study of the group CRI to investigate the effects of group CRI on communication and quality of life. Lyssa Rome Well, that's really exciting. And again, I'm really looking forward to reading additional work as it comes out. As we wrap up. What do you want clinicians to take away from your work and to take away from this conversation we've had today? Suma Devanga Well, I would want clinicians to reflect on how their sessions are going and think about how to incorporate the principles of rich communicative environments so that they can add more meaningful complexity to their treatment activities and also ensure that their patients are truly engaging with the tasks and also having some fun. And I would also tell the clinicians that we have strong findings so far on CRI with both fluent and non-fluent aphasia types. So please stay tuned and reach out to me if you have questions or want to share your experiences about implementing this with your own patients, because I would love to hear that. Lyssa Rome Dr. Suma Devanga, it has been great talking to you and hearing about your work. Thank you so much for sharing it with us. Suma Devanga It was fantastic talking about my work. Thank you for giving me this platform to share my work with you all. And thank you, Lyssa for being a great listener. Lyssa Rome Thanks also to our listeners for the references and resources mentioned in today's show. Please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of aphasia. Access. For Aphasia Access Conversations. I'm Lyssa Rome. References Devanga, S. R. (2025). Collaborative Referencing Intervention (CRI) in Aphasia: A replication and extension of the Phase II efficacy study. American Journal of Speech-Language Pathology. Advance online publication. https://doi.org/10.1044/2024_AJSLP-24-00226 Devanga, S. R., Sherrill, M., & Hengst, J. A. (2021). The efficacy of collaborative referencing intervention in chronic aphasia: A mixed methods study. American Journal of Speech Language Pathology, 30(1S), 407-424. https://doi.org/10.1044/2020_AJSLP-19-00108 Hengst, J. A., Duff, M. C., & Jones, T. A. (2019). Enriching communicative environments: Leveraging advances in neuroplasticity for improving outcomes in neurogenic communication disorders. American Journal of Speech-Language Pathology, 28(1S), 216–229. https://doi.org/10.1044/2018_AJSLP-17-0157 Hengst, J. A. (2015). Distributed communication: Implications of cultural-historical activity theory (CHAT) for communication disorders. Journal of Communication Disorders, 57, 16–28. Https://doi.org/10.1016/j.jcomdis.2015.09.001 Devanga, S. R., & Mathew, M. (2024). Exploring the use of co-speech hand gestures as treatment outcome measures for aphasia. Aphasiology. Advanced online publication. https://doi.org/10.1080/02687038.2024.2356287 Devanga, S. R., Wilgenhof, R., & Mathew, M. (2022). Collaborative referencing using hand gestures in Wernicke's aphasia: Discourse analysis of a case study. Aphasiology, 36(9), 1072-1095. https://doi.org/10.1080/02687038.2021.1937919
Episode 125. "It was like being put in a damn box": Healthcare experiences of Black Americans in conversation with Dr. Warren Brown (00:49:04)
Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, Young Person's Brain Injury Group, and Thursday Night Poets. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature my friend and colleague, Dr. Warren Brown. I've been fortunate to work with Dr. Brown for the past two years and I'm excited to share the work he's been doing in service of the LPAA. Warren C. Brown, Ph.D., CCC-SLP is an Assistant Professor in the Department of Communicative Disorders at Jackson State University. His research explores the intersections of traumatic brain injury (TBI), aphasia, and healthcare disparities, with a focus on cultural and linguistic diversity in clinical care. He serves as a facilitator for the Black Aphasia Group at the Aphasia Center of Acadiana and has published on topics related to brain injury, intersectionality, and patient-provider communication. Dr. Brown is an active member of the American Speech-Language and Hearing Association (ASHA), National Black Association for speech Language Pathology (NBASLH), the Academy of Neurogenic Communication Disorders and Sciences (ANCDS), and Alpha Phi Alpha Fraternity Inc. Take Aways: Learn about health disparities faced by Black Americans. Learn about the perceptions of Black Americans towards their healthcare providers. Dr. Brown will continue to facilitate the Black Aphasia Group affiliated with the Aphasia Center of Acadiana. Dr. Brown and his team to are hoping to publish an anthology project featuring entries from Black Americans with aphasia by fall of next year. Dr. Brown plans to organize a symposium on aphasia at Jackson State University with a focus on diversity. Dr. Brown plans to present a poster on the anthology project at the upcoming Aphasia Access Conference. Interview Transcript: Jerry Hoepner: Alright. Well, Warren, it's good to see you today. I'm fortunate to see you on a regular basis. So, I think this is the second time we've connected today. For different reasons. But I'm glad to have you here as a part of the Aphasia Access Conversations Podcast. I'm hoping you can share a little bit about yourself. I know that some aphasia access affiliates will know you and know a little bit about your work. But I'd like others to get to know you and your work as well, so can you share a little bit about yourself? Warren Brown: Yes, sir. Well, thanks for having me. For sure, this is an honor. I'm a recent graduate from the University of Louisiana and Lafayette. With my PhD. I studied under multiple folks. There. I studied under Anthony Salvatore, Dr. Judith Oxley, and Dr. Jamie Azios. My main areas of interest are traumatic brain injury, aphasia, and all neurogenic disorders related to marginalized populations. Prior to my doc program, I was a practicing clinician for 11 years or so I practiced in mainly acute care hospitals long term, acute care, hospitals, home health, and predominantly in Southern Louisiana. So, and I did a little bit of private practice. I did everything but child language disorders. So I prided myself when I started my doc program as being a clinician first, and thinking about clinical issues, first, because I was gracious enough to get a lot of great experience in my timeframe, so I kind of had a better idea about, you know the areas that I was most mostly interested in prior to going into my doc program. So, I'm married. I have 3 kids Wes, Evie, and Wells, which is my newborn and a lovely wife, Tatiana. I'm a new faculty member at Jackson State University in Jackson, Mississippi, and I love my job, and I love my students, and I love my research endeavors that I've done thus far. So, you know I'm fortunate enough to work with you, Dr. Hepner, Dr. Louise Keegan, Dr. Jamie Azios Dr. Judith Oxley. Still Dr. Anthony Salvatory. Still Theresa Gray, a few other folks. I'm just happy that Dr. Brandy Newkirk-Turner as well at Jackson State. I'm happy that I have a great group of mentors to ask questions to and bother from time to time. So, I'm just grateful. So yes, sir. Jerry Hoepner: Well, yeah, it's been really fun working with you and getting to know you. And certainly, that really strong, diverse group of mentors is something to build upon for sure. That's a great group of people. So privileged to be a part of that a couple of things that we were going to talk about today. I want to get to your work with the black Americans with aphasia group, and I want to get to some of the new work that you've been doing on an anthology. I'll kind of leave it at that, for now you were gracious enough to share a manuscript. That you and Dr. Azios have under review right now. I know it's not quite published, but I'm wondering if you're willing to give us just a little bit of a preview of that work, and I have a few things that I just think were really powerful from reading that manuscript, and I'm interested in your thoughts on it. So, do you want to tell us a little bit about, like the general context of that manuscript? Warren Brown: Yes, sir, so this was. This was actually a part of my dissertation. My dissertation was a mixed methods. Research project on healthcare encounters of African Americans with aphasia and without aphasia. But I was lucky enough to capture 8 interviews from a qualitative standpoint for that dissertation from African Americans with aphasia from across the United States. Different age ranges different levels of severity and obviously different etiologies from which caused them to acquire aphasia. The paper really came about, because, again, clinically, you know, I always realized that individuals who had aphasia who were black, had a lot of different experiences when it came to healthcare providers and practitioners. And oftentimes, when I would go into a home or see them in a hospital, they would be surprised that I was the individual to see them right. They would think I was a dietary staff member. They would think I was DNA. They would think I was a nurse, everything but a speech pathologist. So, when I had the opportunity to lead or facilitate a group which was the California the conversational group with Dr. Teresa Gray. You know I love to hear the different experiences that those individuals were having, as well coinciding with what I knew what was going on in the field. So that's what spawned this idea about understanding the dynamics of what you know. These encounters were from a deeper perspective. So originally it was going to be just a regular project with Dr. Azios and I, but we felt it'd be better if we made it a larger scale project and added to a portion of my dissertation. So, we did so. We really look to understand those lived experiences of those individuals, how those healthcare encounters went for them before and after they acquired aphasia, and trying to understand, like different strategies and challenges, that you know they may have had to use to overcome some of those issues, and how, you know we could take what they were saying, and make that accessible to practicing clinicians to understand how to work with diverse populations a bit more you know. Yes, sir, so. Jerry Hoepner: Yeah, I mean, I found a couple of points that well, actually, several within the background. And literature review that really struck me. There's several of these statistics, but a couple that really stood out to me were the percent of deaths among black Americans during the Covid pandemic. And just you know the marked difference between the amount of actual African Americans in those communities and the numbers that died. Which were that was just really striking to me. And then the other one. The other context that you wrote about was the study of 85 black Americans. That were a part of a VA. Study, a veterans affairs study and really just talked about their, you know, their feelings of being stereotyped by the professionals that we're dealing with them, treated and labeled as if they were uneducated, and addicts and angry and poor, and those really set the context for the study. Wondering if you can just kind of weigh in on those and other kinds of striking background pieces of information. Warren Brown: Yes, sir, so you know, it's known that you know there is racial bias when it comes to African Americans in general, just because of how society is. But you know oftentimes in neurogenic disorders it's unstudied, right? You don't look at race and ethnicity as factors as being contributing factors to some of the issues that the populations that we service are dealing with, you know, looking at Covid alone. You know, we added, that I added that statistic because you know it just kind of highlighted how much racial disparities really are prevalent right and not just individuals with aphasia, but individuals who have a multitude of you call it metabolic issues, right or just issues in general when it comes to healthcare, and how sometimes these issues go unserviced or underserviced, or these individuals are not educated about what they need to do or what they need to accomplish, from a healthcare practitioner which ultimately leads to poorer outcomes across that population. You know. One of the things that we listed in that paper was also about just black women in general, right? Black women are twice as likely to have low birth weights of infants when compared to white women, and they also face lower rates of prenatal care right? Although that doesn't have much to do with aphasia. I think that that speaks to a larger picture than that. Jerry Hoepner: Yeah. Warren Brown: You know. Sometimes African Americans are looked down upon the most across our society. And why? That is, you know, it's a multitude of reasons, right? There is no one pinpointed answer for that, and it just kind of paints to the goes to the bigger picture of racial bias, and how patient and provider communication is just poor across the board, and you know, and it could be because of communication styles are different, right? It could be because of the practitioners. You know the old mindset was that the practitioner is always right, so they should. You know the patient should listen to what they're saying, and it's not. It wasn't necessarily a patient center or person-centered approach like it is nowadays. And some practitioners, especially in the South. They still are under that mind, right? Not necessarily in the South, probably across the board in the United States. Right? So, I think that you know those biases, and some of that lack of communication or poor communication it just contributes to the poor perceptions and stereotypes that are out there in African Americans and black people you know, because regardless. When a black person gets sick, you know, they may be scared to go and talk to a practitioner because of where they live. That might be the only practitioner or specialist that they can see, and they are a family member, or a friend might have had a bad experience. Therefore, they're hesitant to go to that person, and they'll just deal with the issue themselves. And that's where you know. I think a lot of the differences are when it comes to African Americans and healthcare providers. And I've seen that as well with individuals who have acquired language disorders. Right? I've had patients particularly. Tell me when I was practicing that. You know, Warren, we want you to come back, but we don't want the other girl to come back, right? Because you're listening to what I'm saying. You actually are educating us about what's going on more so than just what the language issue is right. And I think that points to the picture of just them feeling comfortable with me, because I'm most of the time with the same ethnicity, right? Same race. And I'm genuine, right? I do the same with any patient that I encounter. But obviously, sometimes, when it's African Americans, and I know what the assumption is, and I understand some of those experiences are, you know I try to go a little bit more. I try to. I try to go the extra mile for them. So, this. Jerry Hoepner: And I think there's it's interesting. And throughout the paper there's parallels to some of the work that you and I and Dr. Keegan have done on healthcare perceptions in traumatic brain injury. That you know you mentioned that idea of providers still following it, falling into that provider centered care rather than person centered care. And I think that's a problem across the board for some providers, because that's evident in our research. But we don't have you know, we're not even representing the black Americans within that group. And I know that the problem is more pervasive when it comes to services for black Americans and other colored people as well. You know the one number that really struck me from the study in Chicago, 70% of. Warren Brown: 70%. Jerry Hoepner: From Covid. Warren Brown: Yeah. Jerry Hoepner: Were black Americans in Chicago, and only 30% of their populations or population was black Americans. That's just. You can't help but be startled by those kind of disparities, because clearly there's something. Warren Brown: Up in there. Jerry Hoepner: Something that. Warren Brown: And these are these are fairly new studies. Right? I mean, the stat for Louisiana was 70 70.5% of this, and they only represent 33% of the State's population. Right? We're African American people. So that. That's you know. My personally, my dad didn't leave his house for a year and a half during Covid he would not go to church. He didn't leave right, and he was terrified. Terrified. You know. I know he had at least 4 or 5 people that died that he knew. You know. So, I mean, it's daunting right especially if you're not educated, or you're not understanding. I had a great relationship with a practitioner that could educate you on, you know the do's and the don'ts of what you should or shouldn't be doing so. Yes, sir. Jerry Hoepner: Yeah, absolutely. I kind of broke down the article into 3, like major areas of interest and topics. And I'll just kind of lay out the 1st one being those challenges with healthcare providers. I couldn't help but put down. This one quote was like being put in a damn box, and we had a little conversation about that earlier, but We also talked about this like this lack of knowledge about stroke and that healthcare literacy creating this fear like. And you even mentioned that with your dad, right? This fear that I don't even want to go into that healthcare context. But then this like laundry list of things that we hear in a lot of studies about healthcare perceptions, healthcare providers are dismissive, dismissive, and you feel vulnerable in that context, you don't have control or agency. Those kinds of things that we don't hear in in those other studies about healthcare perceptions are things like. There was a clear. There was a clear prejudice against me. Right? There was this neglect by providers. One lady I had to write this down, wrote. I don't talk to my dog like that, you know, like. Warren Brown: That's right. Jerry Hoepner: So. Warren Brown: That's right. Jerry Hoepner: And then, you know, just a lack of inclusion in decisions in in the whole entire process. And just feeling that sense of people looking down on you, and that you know that this is kind of the expectation. So I'm really interested to get your thoughts about. You know that that issue of those challenges in terms of working with healthcare providers. How many of those are communication based? And what's kind of bias and kind of sorting some of that out, because we know some happens a little bit to everyone in that context. But certainly, this is different. Warren Brown: Yeah, I think that you know we all have personal biases that, you know are inherently that we are. You know that we're introduced to that from an environmental standpoint. But you know, one would assume that when you become a healthcare practitioner provider, you know you have to be open-minded because, you understand, you're going to be dealing with so many different types of people from all walks of life. And unfortunately you know, these disparities still are there, and this particular study showed that they're still there, right one of the examples you just gave about the young lady that said, you know I wouldn't let my dog talk to me like that right? I remember in in her Transcript she also stated that you know, in multiple visits that she went to her physician would talk through her or over her, where she just totally felt dismissed, or one interaction she had. She had a friend who was white that brought her to the doctor, and they felt as if the friend was the patient, and she was the patient caregiver right? And I think that really broke her down. She literally stayed out of therapy or avoided therapy for a long time because of that. And obviously that affected her outcomes right. But I think the bigger picture is that it's a little bit of both, Dr. Hoepner. I think it's a lot of bias, and it's also poor communication. You know, I think, and some of that's not on the physicians themselves. Some of them, I'm sure, are compassionate. I think some of that is on the larger system systemic issues that are out there. Right? You know you have. They have insurance deadlines; they have time frames. They have. Probably some of them are overwhelmed with patient care in general. But I still think that you know to be truly compassionate, you know you need to understand what you're getting into as a practitioner, and still with individuals that you know may not understand some of the dynamics of some of the diseases or illnesses that they have. You have to find a way to provide them services that they need. Right? I think the communication is key, because it always goes back to communication. Right individuals who are educated, which a lot of these folks are. Some of these folks in the study. I had PhD. Some of them were medical doctors, right? Some of them have master's degrees. A lot of them still stated that their health literacy was poor when it came to symptomology, of strokes, symptomology of not just strokes, but them acquiring aphasia what that truly meant, and how that might affect their daily lives. Right. One of the individuals she stated that she didn't realize that you know aphasia was a thing until she had it. She didn't realize that she was having multiple strokes right until it happened, and she just felt like she would bounce back and go back to her daily life and be fine and go about her normal business. But you know it's hard to pinpoint exactly how to fix it. But this study is, I guess, one step towards trying to understand the different dynamics from multiple perspectives. And I think what makes it super unique is this qualitative study is really, really, it's very in depth. That's why it's so long right? It's a long paper. But we felt it necessary to put these quotes in, because these individuals, these interviews long and you can't help but be compassionate and understand each individual's perspective on what their experiences were right. You know, because this dynamic, this really changed their lives. And I know aphasia changed the lives of a lot of different people and caregivers right. Anytime you have a failure or even a brain injury. Right? It changes we know that. But I think compounded with the racial and ethnic tension or societal views that these individuals suffered with prior to having those injuries. This acquiring aphasia only makes whatever was going on a bit worse, because the inability to communicate or even comprehend what's going on around you, right being overstimulated, not necessarily being able to do on your own, or do for yourself, especially with a practitioner on something that's unknown to you is again. That's a daunting thing like you really don't know what to do, and if you feel dismissed, or if you feel as if a practitioner is talking down to you, what would make you, as an individual, want to go back? You know the a good example, I can say, is customer service right? If you go to a restaurant and you receive poor customer service from a from a waitress, will you give them a tip probably, maybe, or you might give them a less amount of tip that you would have gave given to a person who gave you better customer service right? This is a good example of what a physician interaction and communication is with a patient right. Sometimes these individuals just won't go back right or might not go back to any practitioner one of the individuals in the interviews. He literally said that you know he had a few poor encounters, so he switches doctors regularly because a lot of them don't understand him and won't try to understand him. So, you know, it's problematic. It's definitely problematic. Jerry Hoepner: And you hit the customer service thing right on the head, because one of the things that I was struck by, and I've done work kind of parallel to this. And brain injury is that relationship and the importance of starting to build an authentic relationship in terms of mitigating some of the other communication problems, right? Like, if you invest a little bit in like getting to know that human being. You start to humanize them, and you start to, you know, want to have good outcomes for them, and that results in in better care. And it comes right down to that. That patient centered versus provider centered communication. Right? If you open up the door on the front end to investing a little bit in a relationship building, it seems like the goodness follows right like you're saying earlier, like, these physicians aren't bad people right? It's just, you know, they're in a system that says, Go, go. And then they have these biases that they might not even be aware of. And the next thing you know, they're out, you know, on the way out the door, and care hasn't happened in the way that it should. But I'm just struck by the fact that that was like a mitigating factor for people like just a little investment get to know that person. And then everything changes so. Warren Brown: That's right. I think I think that's what you know. Someone asked me a while back. Why, like our Black aphasia group. Why is it so successful? Right? It's because it's not if I don't. The way that I approached it. I didn't approach it as me, Warren brown as an SLP. Right? I approached it, me, Warren Brown is trying to understand these people's stories and get to know them, and fully. How can I, as an SLP, help you right? And I think that's why our group is so successful, right? And why people keep coming back. Because if they didn't feel like it was a genuine interaction, I can assure you they wouldn't come back. Because I genuinely look forward to the group like the group members do, because I love talking to these folks. These are folks of my family, right? And that's the type of community that you know. Practitioners can make it like that right? Jerry Hoepner: Okay. Warren Brown: You know, in certain rehabs. That's what it is. It's a familiar environment. At certain places. I know some of the ones that I used to work at. So, you know, but I definitely understand the dynamics of health care have changed right as time has progressed, and that's due to a multitude of reasons. But care doesn't have to change. Right practitioners can change for the better. If you fully try to understand and invest time and energy and being genuine into the folks that you're seeing right. I truly believe that so. Jerry Hoepner: Agreed, you know, and when I kind of listed a bunch of priorities, or what black people with aphasia want this? Isn't it an outlandish list by any means like, I've got this big, long list of things that are problems. And then they say they just want to be treated with dignity, compassion, and respect. They want. Warren Brown: Right. Jerry Hoepner: Heard, and they want to be treated like human beings. That's not unreasonable. So, it's not like they've got this big, long list of you got to do this. This I just think that's pretty interesting in light of all of the struggles that they're facing like. If you could give us these 4 or 5 things we could. We could work with. Warren Brown: Yes, sir, and I. And I think even with that the you know, interpretation of respect is different from everyone. But I think ultimately, no matter what race, no matter what ethnicity, what creed you are. Respect is respect, you know, treating people the way you want to be treated right. I mean, that's what it is. And you know, talking to people the way that you want to be spoken to. Right? That's what it is. And I think, like you said, it's so simplistic it should be natural. But obviously it's not for some people right? Jerry Hoepner: Okay. Warren Brown: And that's and that's problematic. But hopefully, it's hopefully, we're trying to change that. So you know. Jerry Hoepner: Yep. yeah. Finding a way to make those priorities on the front end. I think that really makes sense. The other thing I wanted to talk to you about kind of get your take on. This is along with the challenges and along with kind of these desires. What people with aphasia want? I just noticed a lot of strengths that I'm not seeing in some of the other research that's out there from the perspective of survivors of brain injury and so forth. Things that I just saw flowing through like this idea of self-reliance like I learned, I gotta rely on myself, I rely on my faith and my religious beliefs. And then this really struck me, this, this cultural community, where one of the one of the participants said something to the extent of, We always stay in each in each other's business, kind of like, whether we want it or not, whether they want it or not, and that allows them to help each other. I'd just like to get your thoughts on that, because that seems like such a strength of this community. Warren Brown: Yes, sir, that's a that's a loaded question, but I can definitely break it down. So, I love that question, though I think that you know, from perspective of self-reliance. That's definitely a cultural thing, right? Because, you know, personally, I'm 38. So, I was raised to not be dependent on someone else, because you really can't depend on what someone else can do for you outside of what you can do for yourself. That is something that is instilled at a young age and I went to Southern for my master's right Southern university in Baton Rouge, which is a historically black college or whatnot. And you know, at Southern they taught us the same thing, because, you know, as you know, our field is predominantly white women, right? Less than 5% African Americans, even less percent African American men. And at Southern they always said, You have to work twice as hard in order to be in this field and be successful. And they instilled that in us so much right. Because you really have to understand that you know society has painted this picture that things are against you and these individuals, with aphasia in their own careers, have had this same type of battle and everything that they've gone through. So, they've always had to prevail. And some of these individuals in this group. They went through the Jim Crow South right they went through struggles of individuals, fully talking down to them, having separate everything, having to deal with parents and grandparents that, you know, had to bow down to certain people because of the societal norms at the time, so that self-reliance, you know, always was there, because they always had to work harder in order to achieve what even was fair or normal for other people right? And that paints it to a bigger picture, even goes back to the level of respect. Right? If you work twice if you feel like you working harder than someone else for a job. And you know you're more qualified. Right? That's something that that you feel you're owed. But to some black people you understand that I'm not old. Anything right? That's just how society paints it. It is what it is, and I think that goes back to that point. And I'm sorry. What was the other question? I was trying to. Jerry Hoepner: So, I think just that that cultural community. Warren Brown: The cultural. Yes, sir. Jerry Hoepner: Others, business and. Warren Brown: So that kind of touched on it, like I think from a cultural standpoint, you know I am my brother's keeper. Right. You may or may not know this, but I'm in a I'm in a predominantly African American fraternity. Right? We're the oldest fraternity, and that's something that we learned right. You. You never go anyplace by yourself. You always have your brother with you. I always have you know I am my brother's keeper, and that goes from, you know, not just African American males, but African American females, and vice versa, because that sense of community, you know. Again, we talked about it earlier with the Speech acts is unspoken, things that we understand inherently, that as an African American or a black person, you're going to endure in life, and you have to just suck it up and swallow your pride and deal with it. But we all are going through that struggle right, and I think some demographic groups can relate to that. But obviously some groups can't as much right. It's harder to you can empathize. But you may not fully understand, just because the dynamics are different, right? And I'm not saying that all black people have that experience. I'm not saying that. But I'm saying that a lot of black people feel like that. And that was inherent in the interviews as well. Because this group, you know, they, we talk about community. We talk about personal experiences and regardless. If some of them had a PhD., a MD a Ms., a BA right behind their names. All of them had the same experiences. Right? I have to highlight one of the folks in the group. He went to Harvard. He was the second African American person to graduate with a PhD. From the State of Mississippi. Right, you could. I could only imagine. And he did this in the seventies. I could only imagine the struggle that he had to go through right to attain a degree like that from a school like that coming from where he came from. So you know something that you know other people's family members may have done, you know, is probably much more meaningful to him because of the struggle he had to go through, and I think that is where the community comes in because African Americans acknowledge that right? I was always told. Like, you know, school is important. Education is important, you know, education to get you a lot further in life than sports and all these other things, because, you know, it was always instilled that in education, you know, knowledge is power and you know these older folks. I call them older folks. No offense, right? No ageism here. But you know the 70 plus right. Those individuals who have doctorates and really are fully educated. Their battle and struggle was much harder than mine coming through school right? And I. And that's a level of respect, a level of community that we all know how to respect. And I think you know, when it comes to community, that's something that we all can recognize as a culture. And with this particular group, that's something that's respected across the board because, regardless of the level of severity of aphasia, they have every individual in that group respects one another. They check on one another. They listen to stories about one another. They know about each other's family right? Milestones. It's phenomenal, right. When I got my doctorate. They were the 1st people to congratulate me right. When someone had another struggle in the group. We were the 1st to say a prayer for them and why? That is cultural. It's a traditional thing. I mean, it probably ties back to slavery before the great migration, right? And folks moved up and all around from the south to different parts of the North. Right? That's something that is always probably going to be there. And that's a cultural thing that you know, is really unspoken a lot of times. So. Jerry Hoepner: Yeah. You know, you talked about the people in the study, the people with PhDs and master's degrees and physicians. One of the stories I kind of connected with was Ann Story. She was a physician prior to her stroke, and had acknowledged that she had colleagues that she would refer black Americans to, and colleagues she wouldn't and then she had the stroke, and she had this very personal, insider experience. I don't know if you want to just say a couple of things about that. Warren Brown: Yes, sir, she actually, I'm glad you said that she actually definitely said that she referred people to certain practitioners because she knew certain physicians with had more empathy than others. Right now, her experience was a little bit different, right? She didn't really have any negative experiences with practitioners, but also all of them knew she was a medical doctor, right? And I think that you know that level of information is different, because had they not known who knows what her story would have been right as opposed to the individual with the PhD. They didn't know he had a PhD. Because at the time of his stroke he couldn't talk, so it wasn't until his wife came and alerted them as to who he was and where he worked, that some of that stuff shifted, and obviously it shifted when he went to different facilities as well. But Ann's experience was very, very different than some of the other individuals, but I think that even with that she was much more conscious about her experiences as well, because she kind of had a better anticipation about what she was supposed to receive and how services were supposed to go for her right. And that goes back to the bigger picture of healthcare literacy right? Obviously, her literacy and understanding of how healthcare works was a bit better because she was a medical doctor, and I think even just. Her journey with aphasia was a bit better in a lot of different ways as well. Yes, sir. Jerry Hoepner: Yeah, that's really important to have that that perspective and that kind of juxtaposition. Well, I do want to make sure we have some time to talk a little bit about your role in running the Black aphasia group, and how that's changed your clinical perspective, your research perspectives kind of what you've learned in that. In that context. Warren Brown: Absolutely so. Originally, I was gung ho! About brain injury. Only, right? I didn't really necessarily want to go into aphasia as much as I am, because my premise for going to get the PhD. Or really one of the main reasons why was I wanted to study sports, related concussions mostly. But once I got into the program and I learned about some of the different, the different profs, some of their interests, you know. I couldn't help myself, but dip into it some, and I got an opportunity at the last Aphasia conference to meet Teresa Gray and she allowed me to facilitate her group out in California, and then we started our own group through the aphasia center of Acadiana with Dr. Azios and Miss Rose Shelf. So, you know, I still run that group. It's still affiliated with the aphasia center of Acadiana. Although I'm in Jackson State. I asked Dr. Azios if we could continue to do that because I think that that connection to an aphasia center is integral. Because I think that you know with the group, that's what we're known for. And that's what we're going to stay as long as they'll have me. So. You know, with that group I've learned so much more than what I knew before, as far as compassion, as far as empathy. As far as, although you might be the expert or the practitioner, you still need to understand the dynamics of the individuals that you're seeing just hearing some of their stories, and even personally, as a practitioner, some of the things that I used to do right, which were probably wrong, because that's how I was trained originally in the beginning, you know, and I shifted throughout my career as well, because I understood a lot more, but I think even more so now, I really fully understand. And that's kind of what I teach a lot of the students that I have right how to understand the dynamics of people that you're working with and the students at Jackson State. They have an opportunity now where they actually come on with the group, and I allow them to have somewhat of a conversational type of discourse with the members, so they can understand those dynamics, for whenever they get out in the field to understand how to work with diverse people with aphasia. So, one of the things that you know, we were able to start with the group members. And this was all the group members. They wanted to create an anthology, right? Because they stated that they wanted to document right their journeys and journeys for other people who are African Americans or of color to understand. You know what you may or may not go through right that you are not alone, that you aren't in a damn box by yourself. Right? They wanted to understand that also for caregivers what to do, because all of these individuals literally stated, they all were oblivious to aphasia prior to this, prior to acquiring it. So this anthology is serving, as you know, just a guide or tool to use for individuals and for other individuals with aphasia who may or may not be of color to relate with right and for individuals to understand like, Hey, you know, this is what I went through. You know I am black with aphasia. This is also to get other people who are black with aphasia in their caregivers to understand that. Hey? We have a group for us out there that you may or may not want to be a part of and last week we actually added a new member. So that was wonderful. But so far, we have multiple different entries. The group participants have entered essays. They've entered poetry. Some have done checklists, some have done prayers some have even one. We have one from a caregiver. Her husband has aphasia. She comes to the group as well. We love her. She's actually a compound pharmacist. She wrote about her perspective as a caregiver in the anthology as well. So. Jerry Hoepner: Cool. Warren Brown: Me. Being in Jackson state. I got lucky enough to talk with Dr. Brandon Newkirk Turner, and Dr. Morris is that the University of Saint Augustine. They connected me with Dr. Mcdaniels, who's over the Humanity Society in Mississippi, and she's gonna help us to get it out there. So. Jerry Hoepner: Awesome. Warren Brown: And recently we started a collaboration with one of the art, the Black art History professors at Jackson State, Dr. Brittany, Meinberg. We're actually going to make it aphasia friendly. So, whereas we're gonna have mirrored pictures of the entries and the pictures of those entries from an abstract standpoint for individuals who have aphasia so they can read it and be aphasia friendly as well. So yes, sir, that's the idea, and hopefully we'll have something by the fall of next year. So. Jerry Hoepner: Because. Warren Brown: At JSU, we're going to be doing a symposium on aphasia. And obviously, since it's an HBCU we're gonna have some focus on diversity with that as well. So yes, sir. Jerry Hoepner: Well, I'm excited to see that anthology come to fruition and look forward to kind of keeping an eye out for that and everyone out there who's listening. Keep an eye out for that as well. Just a handful. 2 or 3 more questions I want to ask. Just find out a little bit more about your experience. I know that you've had opportunities to work alongside of some great researchers and clinicians. I want to get your perspectives on that. And yeah, share a little bit about that, and how that's prepared you to be like a brand new professor this year. So. Warren Brown: Yes, yes, sir, absolutely you know. I can honestly say it's truly been a blessing since I started at UL, and I'm done now to be able to encounter all the folks that I have. You know, from Dr. Salvatore to Dr. Michael Canito to you. Right, Dr. Hoepner to Dr. Louise Keegan, Dr. Azios, Oxley Ryan, Nelson. You know the list goes on right. Everybody that I've worked with and spoken to all have different perspectives of our research, you know, and I and I take pieces from everyone that I've worked with to understand how I want to approach things right, because my love is always going to be diversity right in whatever area that I'm in. And you know, I think that's what makes me a little bit unique, right? Because my perspective is always looking at the population that I mainly care the most about right. And you know understanding the different dynamics about how you all have what you all have done. And from reading, all of you guys work, I call it borderline stalking. You guys work right? I remember the 1st time I met you, Dr. Hoepner, I was terrified to talk to you, man I really was, and then, when you introduce yourself to me, I was quiet, and I was like, he's normal. He's not like, I thought he was. So, I was like, Okay, this, this is cool. So, and Dr. Jamie said, just go talk to him. He's cool. Go talk to him. I was like Okay, but I use it as an example, because, you know we're all human, and I think that you know sometimes, you know, as a new researcher, as a novice researcher, as a student, you know, you get overwhelmed with the people that you're reading about, the books that you're using or books that you're reading. These are the folks that are writing it. And hopefully, one day you can get to that level to impact students like myself, like I was, or students that are out there, up and coming students. So, you know, I think, that all the work that everyone is that I've learned under and still learning under, you know, it's important, because this is all. This is all, how we all are contributing to the field and how we're making the field better. Right? I think that's the ultimate goal ultimately is to serve the population of individuals that we're treating. It's never about me, right? It's never about you. It's never about any of this is about the work that we're doing to improve outcomes, to improve the populations that we serve. And you know, clinically, I've worked with some phenomenal clinicians. When I was a clinic, when I was a clinician when I was a full-time clinician and you know I've had great clinicians that I've worked under and with, and horrible at the same time. I think we all have, and you know, when I was in administration I would fire and hire people left and right. I would let people know if they were horrible, and I would just go on and keep moving. But I think you know now that I've shifted to research and understanding how clinicians think to a certain degree. You know, I can understand why some clinicians practice the way they do or did, because they were ignorant to what's out there, you know. Earlier on in my career I was oblivious to aphasia. I heard nothing about it. I work in acute care hospitals, major acute hospitals because they weren't that popular in the South, right? It wasn't really until I got to Southern, and I taught undergrad for a while. And you know in some of the text that I was reading. I read about it, and I was like, Oh, I never knew that was a thing right, because they weren't offered. We had Parkinson's groups. But we never had aphasia group, right? And I think that you know, and TBI groups that we have that as well. But I think these groups are much more impactful because they do serve as a sense of community for a multitude of people. And these groups are places where individuals can go when they plateau out of therapy. And I want to say something on that, too. That's actually one of the topics we wrote about in the anthology. What does it feel like to be plateaued or told you plateaued in therapy? Right? And it's just amazing how you know as a clinician, you say that to someone right? Or you meet, you met Max level of potential. You say that to someone, but you don't fully understand the mental or the impact that you have on an individual when you say that right? And that was something we talked about. And now they're writing about it. And I'm like man. I never thought about that as a clinician. So I say that to say even I'm still learning right. That's something we should know. But you don't think about it from a clinical standpoint, because that's a standardized thing. But to an individual who's suffering from or had to endure what you're saying to them, it's a totally different perspective. Right? So, you know, I'm learning that. And I'm learning how to be more compassionate, too. So yes, sir, I'm learning a lot. I love it. I love it so. Jerry Hoepner: We are well on your way, and you will make that impact on a lot of students. I'm sure you already have. Well, just to kind of bring things to a close. I want to end with a lighter note hopefully, a lighter note. What brings you peace in the midst of this sometimes crazy world that we're living in. Warren Brown: Oh, man, I love! I love my kids and my wife. I love my kids and my wife. They bring me peace. I'm a I'm a classic car collector. I love my classics, too. I have them. Can I share about that? Jerry Hoepner: Absolutely. Warren Brown: So, I have a 1969, a 396 Chevelle that I bought years ago. And we're restoring that we're almost done with that. I just have to get it painted. And recently I bought a 1985 K. 5 Chevy Blazer that we started to restore as well. It's a smaller engine. It's a 305, but that's something that brings me peace as well. You know my dad was a jack of all trades. So, I learned at a young age how to construct houses, how to do plumbing electrical fix cars. That's why I went to college, so I didn't want to do that full time. So, but one thing about it is that you know, I learned how to do all those things, so I can teach that to my kids. And hopefully, that's our family time. You know that we do these things together. That's what truly brings me peace, my family, and a lot of my friends. So, for sure. Yes, sir. Jerry Hoepner: Well, that's fantastic. And obviously you and I could talk all day. We need to wrap things up. Hopefully. We'll get to see you at the Aphasia Access Leadership Summit and connect there. Warren Brown: I'll be there. Yes, sir. 01:05:02.260 --> 01:05:11.929 Jerry Hoepner: Connect with a whole bunch of new people. That you haven't met yet, too. So, thank you so much. Warren and I look forward to talking to you again soon. Warren Brown: Thanks, Dr. Hoepner. Thanks for having me. I appreciate it. Jerry Hoepner: You're so welcome. On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.
Episode 124: Friendship, literacy and reading in Aphasia: An Interview with Liz Madden (00:41:10)
Dr. Janet Patterson: Welcome to this Aphasia Access Aphasia Conversations Podcast, a series of conversations about the LPAA model and aphasia programs that follow this model. My name is Janet Patterson, and I am a research speech-language pathologist at the VA Northern California Healthcare System in Martinez, California. Today, I am delighted to be speaking with Dr. Elizabeth Madden, an Assistant Professor at Florida State University in the School of Communication Sciences and Disorders and an affiliate of the Institute for Successful Longevity. Liz also leads the FSU Aphasia Research Laboratory. Liz's research, teaching and clinical interests focus on rehabilitation of aphasia, and specifically on understanding the relationship between spoken and written language abilities in individuals with aphasia and developing behavioral treatments to address reading and writing disorders post stroke. Her work also addresses the impact of aphasia on the friendships and social well-being of people with aphasia and their care partners. These Show Notes accompany the conversation with Liz but are not a verbatim transcript. In today's episode you will hear about: the power of friendship and what people with aphasia and care partners think about how aphasia can affect the ability to create and sustain friendships, the definition of literacy and its behavioral components, and behavioral treatments for reading comprehension deficit in aphasia. In 2024, Liz was named a Distinguished Scholar USA by the Tavistock Trust for Aphasia UK. The Tavistock Trust aims to help improve the quality of life for those with aphasia, their families and care partners by addressing research capacity related to quality-of-life issues in aphasia. Congratulations on receiving this honor, Liz. Aphasia Access collaborates with the Tavistock Trust for Aphasia in selecting the awardees and is pleased to have the opportunity to discuss their work and the career influence of the Tavistock Award. Welcome Liz, to Aphasia Access Conversations. Dr. Liz Madden: Thank you, Janet. I'm really happy to be here today. I also say thank you to Aphasia Access and to the Tavistock Trust for Aphasia. I'm very grateful for this award and excited to have this conversation. Janet: I'm excited to be talking to you, my friend and research partner in several endeavors that we've been working on over the last few years. Liz, as we've said, you were named a Tavistock Trust Distinguished Scholar USA for this year, and you join a talented and dedicated group of individuals. How has receiving the Tavistock Award influenced your clinical and research efforts in aphasia, Liz: I first wanted to extend that thank you to the Tavistock Trust for Aphasia, and specifically Henrietta, the Duchess of Bedford and the honorable Nicole Campbell, and just a very gracious, sincere thank you for all the time and effort and support they give to aphasia researchers. I would say, I'm just delighted and very humbled to be recognized this year. I would say further that this award motivates my work that is focused on trying to really make an impact on the lives and quality of life and successful living for people who have aphasia and continuing my work. My beginning work was really more impairment focused, which some of that we will talk about, and I really value that. But having this award, and the more I stay in the field, it is extending that and making sure that everything I'm doing always is directly related to helping the lives of people with aphasia. Janet: That leads right into the question I'd like to begin with Liz, which is about your recent work investigating the role of friendship for persons with aphasia. I believe in the power of friendship and community during joyful times and also during the sad times in one's life. In Aphasia. Access podcast episode number 119, Finding the person in front of aphasia, I talked with your friend and colleague, Dr Lauren Bislick, with whom I believe you collaborate to investigate friendship and aphasia. How did you become interested in this aspect of aphasia, and what can you tell us about your work in this area and your collaboration with Lauren? Liz: Lauren and I did our Ph.D.'s together. We both were mentored by Diane Kendall at the University of Washington, so Lauren and I are Ph.D. sisters. Also, we were both at Project Bridge, led by Dr. Jackie Hinkley in 2018. That's really where my interest in friendship began. That conference brought together researchers, speech-language pathologists, people with aphasia, and their friends and family. I was the researcher at a table, and we ended up being Team Friendship. Lauren was also at this meeting, but she was at Team Yoga; Lauren does a lot of work with friendship, but also with yoga. My other colleague who does a lot of friendship work with me is Dr. Michelle Therrien here at FSU. She primarily works with children who use AAC, but her main research is friendship. She and I had already had some conversations about the importance of friendship, particularly for people who have communication disorders. The idea was we leave the conference and to take action and carry out some of the goals that were generated from that discussion. So that's when I reached back out to Lauren, because she was at that conference. Then I also reached out to my friend, Michelle Therrien, and other individuals who became part of our Team Friendship, Dr. Sarah Wallace, who's also one of our good friends and collaborators, and Rachel Gough Albritton who is one of Jackie Hinkley's former doc students and here at FSU as well. and the office of research. That is the background of some conversations before Project Bridge, but really for me, coming back and actually starting studies addressing different aspects of friendship, which I know we'll talk more about, was really brought about by the Project Bridge conference. Janet: That is quite a story, and I can see you sitting around the table and developing Team Friendship - good for you. We all know, Liz, that one of the unfortunate consequences of aphasia can be the loss of or the diminishing of friendships, or the disruption of the communication skills important to developing and sustaining friendship and community. What have you learned from people with aphasia about their successes and challenges in sustaining and creating new friendships. Liz: Yes, good question. Well, at that conference that I mentioned, there were five or six people with aphasia, and initially our table was labeled something like, What happens in the long run? and we started having conversations. It was very clear after our initial conversation that the group centered on relationships and friendship, so we shifted to being friendship only. I will say, just at that table, it became very clear to me, that's what rose to the top when the group was thinking about the bigger picture of living life. In a research project we've done there was a small sample of 15 people with aphasia, and we talked to them over time. I think the timing of a conversation is really something important to keep in mind when we're talking to people with aphasia about any topic, of course, but particularly friendship. From other studies we've noticed that responses are really different. If we're talking during the early days, maybe the acute days, versus the chronic days, we'd get really different responses. Just a quick summary, again, this was 15 people and a unique set. Most people in our study were a part of aphasia groups, and, of course, really motivated to do research. But I will say, when we looked at their responses, when asked to think back to the early days, all different aspects of friendship, how supported they felt, or how they were able to communicate, and we compared it to their responses in the now. Overall, the pattern was less satisfaction, feeling less supported or less able to engage in those earlier days, but more of a recovery pattern over time, but again, not for everybody. There were still a few people in our group that were reporting not having many friends. Our paper had a different light, a positive light about friendships. Some of the other papers out there have a more negative tone. It's a very important area we need to address. I was happy to see this group reporting, now that they had been living with aphasia for several years, their pattern of more negative responses early, and a recovering pattern now. They reported making friends with other people who have aphasia, and finding at this point, who are those good friends. There's other great work being done by other colleagues, Brent Archer, Jamie Azios and Katie Strong, who are studying the same topic. They had a great paper that describes who stuck around, they were examining the next steps of what it takes to support the positive recovery that we know does happen for some people. Janet: I like the positive perspective you are taking. Given that one has had a stroke, and given that the this is the situation in life, what is the positive? What can you do? Who are your friends? Look at positive ideas rather than publishing research on all the negative aspects. Kudos to you for doing that. Liz: Thanks, all of it's important, right? We have to know that. I think we had a special group. I think we had a particularly positive outcome, and it was good to know that friendships don't disappear for everyone. But I think there's something that those people had done and that their friends had done, that we're still trying to learn more about. Janet: Thank you for that work. Liz. It makes me think about the aphasia journey in that it involves not just the person with aphasia, but also their care partners and all the people around them. In your investigations of friendship, what do the care partners of persons with aphasia tell you about their successes and challenges in sustaining and developing friendships? These friendships could be individual friendships or partner friendships or group friendships through social, religious or professional activities or even community groups. Liz: Thank you for this question. I think it's sometimes a forgotten group that we overlook, the care partners, and the critical role they play in the recovery of people with aphasia. I always try to have us remember we want the care partners to do well on their own as people, and so we've done a couple projects. We've just finished data collection on a much larger study of 80 aphasia care partners, and I'm just getting into those data. We did a Qualtrics survey and also did experience sampling, where we used a phone app, and four times a day for two weeks, participants got these little pings, and they had to tell us, Where are you? What are you doing? Who are you with? How are you feeling? When was the last time you interacted with a friend? Was it a text? I don't have the amazing outcomes for you yet. This project was a much bigger follow-up to a project a few years ago with 35 care partners. We, of course, wanted to interview them but then COVID was happening, so we settled for a really nice Qualtrics survey. I will say that these individuals were surprised when we were reaching out to them. They kept trying to schedule their loved one with aphasia, and we said, "No, we want to talk to you about your friendships." And they were surprised, asking, "You want to talk about me.' I will say they were very excited that we wanted to know about them. Back to the timeline I shared earlier in that very small study, the profile was opposite. We asked them about their friendships before they were caregivers, the early stages of caregiving, and then now, and their comments kind of make sense. Across the group they reported in the early stages, they felt like they had really great friends, support and satisfaction. People were rallying around them, coming to the hospital to support them. Many of them had been caregiving for a very long time when we did a comparison, and their reported friendship satisfaction and support was actually lower now. The questions were not the same and the groups were different, but as I told you a few minutes ago, the people with aphasia were more negative in the acute stage, and our small group were more positive now with how they're feeling about their friendships, and the care partners were the opposite. They were feeling more supported in the beginning, and now as time has gone on, some of them report the friends aren't there as much. Some of them felt like they were a burden, or they didn't know how to engage, being very selfless. They have dropped their own social interests to take care of their loved one. We did see in that project, that the longer, the more months a person had been caregiving, was correlated with poor self-perceived friendships and also how they perceived their loved one's health. That was just their perception. If they perceived their loved one to have more health concerns, not just a feature but overall health, they also tended to rate themselves as not as satisfied with their friendship. Bringing in that piece of information and the caregiving burden into our new projects, we did actually get scales on resilience and caregiving burden depression. In this new project we replicated some of our same questions, and we're now trying to look more at overall well-being, seeing how resilience and purpose in life and caregiving burden might play a role. Janet: That reminds me of the commercials, when you are taking off in an airplane or when you are thinking about being a care partner, you do have to take care of yourself as the care partner before you can give the best care to the person with aphasia. Anything that we can do to focus on the person the with aphasia, and also focus on the care partner, I think, is good in terms of developing and sustaining friendships, Liz: Yes. Care partners definitely have a lot more to say, and we haven't actually been able to do face to face interviews yet, but we did have a lot of really rich, open ended responses and surveys that we're still looking through. A piece I'm really interested in, is we have that one-time perception when they did our one-time survey, now we have their responses, we can track how people respond over a two-week period, were they always at home with their loved ones and not responding to friends? I think there's just a lot and again, trying to understand from this group what are the positives. Who are the people that have these positive responses? Then, of course, the next big steps are trying to provide more research resources and interventions for both care partners and people with aphasia. Our group has not yet reached out to friends, so that's a big part to come. I think other researchers have examined friends and a key part intervening with these friends too. Janet: People with aphasia and care partners have different friendship styles and needs, and when aphasia disrupts communication, it can also affect the way a person approaches friendship. As speech-language pathologists, I believe that we can play a role in guiding a person with aphasia and a care partner to develop communication skills that can support friendship efforts. Liz, what are some ideas or actions that you might think of for speech-language pathologists in a busy clinical practice? What kind of actions can they take to support friendship activities, for a person with aphasia, recognizing, of course, that we are all different in our friendship activities. Also recognizing that you're at the very beginning of some of this work, I'm hoping that you have some ideas you might be able to share with us. Liz: Yes, actually our very first friendship project addressed this topic. It was led by Michelle Therrien, and we surveyed about 40 speech-language pathologists trying to find out their view of the role that they think they should play. They find friendship to be very important. They find it to be in their scope of practice. But not surprising, were not aware of resources. They felt overwhelmed with how much speech-language pathologists have to cover, right? But it was really good to know that the group we reached out to found it to be a very important part of their practice that they want to address. I think you hit on something really important, that we teach and adopt having a person-centered care model, and we know that it's part of what we ask about. The simplest thing is asking. We don't need tools. We just need to make sure it's part of what we ask, making sure we're talking about relationships, talking about friendships. There are some really great tools that do exist. There's the Stroke Social Network Scale by Sarah Northcott and Katerina Hillary from the UK. Katie Strong, Brent Archer, Jamie Azios and Natalie Douglas are a wonderful group who have been studying friendship. They've used the Social Convoy Model in some of their papers. It has a great visual that they have used, and therapists can also use. Basically, it is mapping out the social network of who's most important, which could be used one time, or as a pre-post measure. There are different ways, formal or informal, of trying to monitor someone's social network or how they feel supported. I don't think there's a target number of friendships and I don't think more means better, but it could be just making sure we're checking in and that we know that's an important part of therapy. We want them to be able to communicate and interact with friends. Speech-language pathologists are creative in to how to make that happen. Janet: I agree with that view Liz, and I hope that speech-language pathologists will feel comfortable being creative and asking people about their friendships or what they might need to help maintain or sustain their friendships. I would like to turn now to the topics of reading and literacy, which I know you have been investigating. While these terms are related, they are not synonymous. Would you please explain the difference between them and how you are investigating both in your research? Liz: Yes. Thanks. That is a good question. To be honest, the first answer is not very scientific. When I was writing papers it was getting cumbersome to always write reading and spelling/ writing. The term came to be when I wanted to make sure that I was making it clear that I wasn't just focused on reading, but also concerned with the spelling and writing components. With my colleagues, Jessica Obermeier and Aaron Bush, we started using the term literacy for some of our work. People will have different ideas of what literacy might entail. I have been describing treatment as "literacy focused", working on reading and spelling and writing. My initial work was very much focused on reading, and over the past several years I became more interested in trying to also add on the spelling component. If we're working on spelling and writing it gives us a chance to inherently work on the reading. If we're only focused on reading, it doesn't bring in the writing. There's a time for them to be separate, I fully agree. There are also times where they can be targeted at the same time. Janet: That makes perfect sense. When I think about how we discussed in the past, reading for pleasure, or reading to gain knowledge, or reading for information, or reading for safety, so many different aspects of reading, literacy also factors into how you use reading in those situations. Liz: Yes, and so in a lot of day-to-day communication, you need both, right? It's for text messaging, right? We need to read it and respond in a written way, also emails. There are lots of instances where for the for the interaction to go well, we need to be able to read and respond in writing, such as filling out forms, email, texting, social media. For a lot of interactions we need both for there to be a successful written language exchange. Janet: Liz, as part of our work with the Academy of Neurologic Communication Disorders and Sciences, Aphasia Writing Group, you and I were part of the team who critically reviewed treatment approaches for reading comprehension deficits in persons with aphasia. You've also investigated, as you mentioned earlier, specific aspects of reading deficits in persons with aphasia. What are some of the insights that you have gained from this work? And by the way, it was such a pleasure doing that critical review of treatment for reading deficits, and there was a lot of interesting information that came to light in that paper. Liz: Yes, thank you. I was going to comment that I remember we thought we were going to have all these papers to go through and really and that review, we were very much focused on papers where the main outcome was reading comprehension. When we stuck to what our aim was, there really weren't that many papers that that met the aim of that project. So that really brought to light that it really is an area of our field that doesn't have enough attention. Some of my recent projects, as I mentioned with Aaron Bush and Jessica Obermeier, we've talked to people with aphasia and gotten their perspective of before and early days. I really like doing this research over time. Things change, but we learned just how important reading and writing are to people with aphasia, and that they really want to work on it. I think we've seen when we looked in the literature, there wasn't much there. When we've talked to people with aphasia and speech-language pathologists, they want to work on reading, and they're not sure how. That further motivates me that this is an area to work on. In some of my beginning work, I was Diane Kendall's research speech language pathologist for a few years before I did my Ph.D., and I exclusively delivered her phono motor treatment. In that research trial, the main outcome was word retrieval, but the therapy that she designed inherently worked a lot on reading and writing. We retrained every phoneme - how to say it, what your mouth is doing, and also the graphemes that go with the phonemes. As her research speech pathologist, that's really when I got very interested in reading. I'd be in these sessions, and we'd finally bring out the graphemes that go with the phonemes. I recall telling people that this is going to get better – and it did not. That connection between the phonemes and the graphemes, for a lot of people, wasn't there. In that clinical experience as her research speech pathologist is when I realized that the treatment improved reading for some people, but not for everyone. So that's my background of really getting focused on reading. In the last few years, I've been working on adapting that original version of treatment that was for word retrieval. I've added some components to make it more focused on reading. I've been working with Olga Burkina, who's at the Kessler Stroke Foundation, and has an NIH grant where she is pairing exercise with this reading focused phono motor treatment. It's fun to be a part of that group exploring the idea of doing aerobic exercise to improve the brain blood flow, and to see if that's going to help improve reading treatment. Again, the idea being going forward is what the treatment might change. There are some other projects also. I'm working with Will Graves at Rutgers. He is using computational modeling to have us stop guessing which treatment. We're trying to get a really good baseline assessment, trying to find out about semantic impairment, phonological impairment, and then we're using this reading focused phono motor treatment. We also have a reading focus semantic feature analysis. I really enjoy getting to work with different researchers who have these wonderful, big questions, and that I'm getting to support it as the speech-language pathologist on these projects focused on reading and writing and phono motor treatment. So those are some exciting projects I'm involved in right now. Janet: That's exciting, because you started out by saying there were only a few papers that we found that really address reading treatment, and you're right. It's daunting, then how do you select the reading treatment? How do you help this person with aphasia who wants to improve their reading comprehension? I think it's exciting that you've got all these different avenues and are working with a variety of people to investigate treatment. Liz: Yeah. And the one thing I'll add to that is part of that, that review we did, for some people those treatments are helping reading comprehension. But for some people, I've been trying to work on the next step. I have a very small dataset where I've added a semantic comprehension stage to my adapted photo motor treatment. I'm in the very early stages of this and I'm sure it's fine to say, but I've been having these really exciting conversations with Kelly Knollman-Porter and Sarah Wallace. They're also Tavistock Trust recipients, and they study reading from a different perspective, using text to speech, compensatory and very focused book reading. They're very comprehension focused, so we're at the very early, fun stages of where we are in our thinking. I think there might be a middle step we are missing, but we are talking about taking these impairment focused treatments, which I think have a role, and have a participation, functional part of it. That's another emerging, new collaboration, where we are coming to reading from different perspectives, and we're trying to see where we can get with that goal, back to this comprehension question, improving functional reading, maybe from impairment and compensatory approaches. Janet: I think that's the right approach to take, and I think it's exciting, because we have to remember that everybody reads differently. Some people like reading, some people don't enjoy reading. They read what they have to, but they don't particularly enjoy it. So, if we all come to it from different perspectives, we all have different strengths that we bring, and different deficits as well, and different needs or designs, just as is so many things with aphasia. Start with the person with aphasia, asking What do you want to read? What problems are you having? Then use that as a guide to selecting an impairment-based treatment or text to speech treatment, or whatever. I think that's exactly the right approach. Liz: The one thing the treatment we were talking about, phono motor treatment, in general, is a phonology treatment. The good thing is that my focus is asking, is it improving reading? I'm also extending it to writing. We do know at its core, it's a language treatment, so it is nice that it can be tweaked to serve the person's main interests. I think that's important, that we are trying to work on what people want to work on, but we want to make sure we're improving, if we can, not just one language modality, and we know that these abilities are supported by similar brain structures and underling cognitive processes. That's something else we've been trying to work on, being person centered and at the same time trying to maximize generalization - lots of pieces. I am finding now what's most motivating and exciting is trying to make sure that we're doing things that people with aphasia find important, and how also to keep the whole science moving forward in this way that's going to have functional, important outcomes. That people with aphasia are going to be able to do what they want to do to the best that they can. Janet: Absolutely! But then there's the scientific challenge of how do you collect the data? How to best observe specific outcome data on performance measures, but also collect the person-centered data. How do you collect data that really can speak to whether you're having a success and whether this might be generalizable or transferable to another person? Liz: I think it's important that we need both. I always say, and some of my collaborators may not like it, but if in the person reported outcome, a person with aphasia is telling us that they feel better and that they are communicating better in life, and those measures should not be optional, those measures to me, a critically important part of seeing this treatment successful. There are different ways to do that and different ways to capture their perspective. For example, if trained reading words moved this much and if the patient reported outcome change is greater, then I find that to be a success. If the reverse happens, I find treatment not successful. If my probes showed gain but the person with aphasia does not see it or feel it, then I don't find treatment to be a success. So, I think it's really important that persons with aphasia tell us different things, and we need to have many assessments in both of those categories. I think, when possible. Janet: You're absolutely right. When you think about many of the treatments that we're doing, they are not necessarily easy, and they take time, and you have to stay the course. I think you know, I've been interested for a number of years in motivation and engagement, and what keeps people motivated and doing what they're doing. If you've got a treatment that you can see over time, small changes in your specific reading outcomes, but not so much of a change in the person centered outcomes, or person reported outcomes, how do you know the person is still really engaged and motivated and willing to slog through your treatment in order to get to the place that you hope they will? I think you're correct when you're assessing the importance of the person reported outcome. Liz: Yeah, that's good. And then that's a whole other like measure in itself, right? The key of motivation we've talked about in some of the trials. The one person who didn't do very well, and just in our conversation, sometimes it for different reasons. That wasn't motivating for that person. There's that's a whole very important piece that a lot of us have a lot of room to improve in how we capture that and support that. Janet: Which is a challenge when we're trying to devise treatments for, say, reading or anything that can be applicable to a wide range of persons with aphasia. Kudos to you for meeting that challenge as best you can. Liz: We're working on it. But I do really think that it's changing. Sometimes I feel like there are impairment-based people and life participation people, and I don't think it needs to be that way. It's fine if we only study one area. We can't all study everything, but I think as a whole they complement each other very well. And so I'm just excited to see that it seems like things are moving in a really exciting way, where people who study aphasia in various different ways now seem to have the main outcome, asking is this going to help people with aphasia feel better, communicate better, and look forward to something different in life? I think we're all seeing that that's what we're supposed to be doing, and how we do it is going to look really different, and that's great. I think we're moving in the right direction. Janet: Very well said. I think, and you obviously do as well, that literacy and reading skills are crucially important to individuals with aphasia in so many ways, such as life skills reading or pleasure reading. Acknowledging that we all have different skill levels and preferences, what are some ideas that you might have identified that speech-language pathologists can use to support the literacy and reading desires and activities for a person with aphasia? Liz: Great question. I think my answer is very similar to the question about what can SLPs do to help support friendship? I think being person centered. You said earlier, right, we all have different interests. Somebody might say it's not one of my goals and I really don't want to spend a lot of time on this. But just having those conversations and person-centered measures and using supported conversation we can easily gather important information. There are some really good patient-reported outcome measures that ask about reading, so maybe use some of those existing tools. The Comprehensive Aphasia Disability Questionnaire has a nice scale that talks about different aspects of reading as well as other aspects of language. But at the minimum, I think finding a way, even just to draw your own scale and then trying to find out in their life, what are different activities where they want to or need to engage, right? Texting, email, restaurant. I mean, we think about it, we're reading all the time throughout life. So, I think finding the reading need is a general interest and then getting really specific is one way to do it. Another thing could be, as I mentioned before, our brain relies on similar structures and language networks when we are engaging in spoken language and written language. So oftentimes improving our reading and writing improves our spoken abilities and vice versa. So even if it's not the main goal in treatment, for example if the main outcome might be word retrieval, I really believe multimodal learning is important. If, after you've gone through what you want to do say writing it, having them repeat it, maybe copy it, even though that's not the main goal, and it's not slowing the therapy, if it's working for you and your client, then I really think, at the minimum, using written language to support spoken language has a good role. I also think the opposite can be true using spoken language to support written language. So I do think that it's important that we know we are addressing all of language, and that that language skills really do usually move up and down together in aphasia. Janet: Well said, again. Liz, thank you so very much for joining me today in this fascinating look into friendship, literacy, reading and aphasia. And again, hearty congratulations to you on being named Tavistock, Distinguished Scholar. On behalf of Aphasia Access, I wish you well in your research and clinical efforts, and thank you for taking the time to speak with me today. At this point, I'd also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcast, including this fascinating discussion with Liz Madden. Liz: Thanks so much, Janet, I feel like you could just chat with you all day. Thank you again for giving me a chance to highlight some of my work. Also I want to thank everyone with aphasia who has participated in my projects, all my students and collaborators, Aphasia Access and the Tavistock Trust for Aphasia. Thanks again. Janet: For references and resources mentioned in today's podcast, please see our Show Notes. They are available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I'm Janet Patterson, thanking you again for your ongoing support of Aphasia Access. References Antonucci, T. C., & Akiyama, H. (1987). Social networks in adult life and a preliminary examination of the convoy model. Journal of Gerontology, 42(5), 519–527. https://doi.org/10.1093/geronj/42.5.519 Archer, B.A., Azios, J.H., Douglas, N.F., Strong, K.A., Worrall, L.D. & Simmons-Mackie, N.F. (2024). "I Could Not Talk . . . She Did Everything . . . She's Now My Sister": People with Aphasia's Perspectives on Friends Who Stuck Around. American Journal of Speech-Language Pathology, 33, 349–368. https://doi.org/10.1044/2023_AJSLP-23-00205 Azios, J.H., Strong, K.A., Archer, B, Douglas, N.F., Simmons-Mackie, N. & Worrall, L. (2021). Friendship matters: A research agenda for aphasia. Aphasiology, 36(3),317-336. https://10.1080/02687038.2021.1873908 Madden, E.B., Bislick, L., Wallace, S.E., Therrien, M.C.S. & Goff-Albritton, R. (2023). Aphasia and friendship: Stroke survivors' self-reported changes over time. Journal of Communication Disorders, 103, 106330. https://doi.org/10.1016/j.jcomdis.2023.106330 Madden, E., Conway, T., Henry, M., Spencer, K., Yorkston, K., & Kendall, D. (2018). The relationship between non-orthographic language abilities and reading performance in chronic aphasia: An exploration of the primary systems hypothesis. Journal of Speech Language Hearing Research, 61, 3038-3054. https://doi.org/10.1044/2018_JSLHR-L-18-0058 Madden, E. B., Torrence, J., & Kendall, D. (2020). Cross-modal generalization of anomia treatment to reading in aphasia. Aphasiology, 35, 875-899. https://doi.org/10.1080/02687038.2020.1734529 Purdy, M., Coppens, P., Madden, E. B., Freed, D., Mozeiko, J., Patterson, J., & Wallace, S. (2018). Reading comprehension treatment in aphasia: A systematic review. Aphasiology, 33(6), 629–651. https://doi.org/10.1080/02687038.2018.1482405 Strong, K.A., Douglas, N.F., Johnson, R., Silverman, M., Azios, J.H. & Archer, B. (2023). Stakeholder-engaged research: What our friendship in aphasia team learned about processes and pitfalls. Topics in Language Disorders, 43(1), 43-56. https://10.1097/TLD.0000000000000302 Therrien, M., Madden, E. B., Bislick, L., & Wallace, S. (2021). Aphasia and Friendship: The Role and Perspectives of Speech-Language Pathologists. American Journal of Speech-Language Pathology, 30(5), 2228-2240. Resources Stroke Social Network Scale reference and materials: https://cityaccess.org/tests/ssns/ Aphasia Access Conversations Episode #119 - Finding the person in front of aphasia: A conversation with Lauren Bislick
Episode #123: Engaging Care Partners, Sharing Stories, and Waffle Night Celebrations: A Conversation with Harold Regier and Erin O'Bryan (00:40:52)
In this episode you will: Learn about how the Aphasia-Friendly Reading Approach was developed. Hear about the importance of actively engaging care partners in therapy through this storytelling approach. Learn the importance of celebrating stories and how to host your own version of a Waffle Night. Katie Strong: Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong, a member of the Aphasia Access Podcast Working Group. I'm also a faculty member at Central Michigan University where I lead the Strong Story Lab. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Harold Regier and Dr. Erin O'Bryan. We'll be talking about the Aphasia-Friendly Reading Approach that Harold developed for his wife, Rosella, who had aphasia and how Dr. O'Bryan took this approach into the lab to refine it for clinicians to use in sessions. Before we dive into the conversation, let me share a few details about our guests. First a bit about Harold. Harold R. Regier, B.S. Ed., BDiv. Theol., is a retired minister with a career path in programs addressing social justice issues. In retirement, his spouse, Rosella, had a stroke resulting in aphasia. His passion shifted to becoming an aphasia care partner focused on helping to recover language and communication skills. He is the author of "A Decade of Aphasia Therapy," subtitled "Aphasia-Friendly Reading: A Technique for Oral Communication," published in 2021. Our second guest is Dr. Erin O'Bryan. Erin is an Assistant Professor in the Department of Communication Sciences and Disorders at Wichita State University, in Wichita, Kansas. Her major research, teaching, and clinical interests focus on helping people with aphasia communicate through scripts, stories, and phrases and teaching students and care partners how to support communication. Dr. O'Bryan directs the Wichita Adult Language Lab whose current projects focus on supported storytelling and Melodic Intonation Therapy. Welcome Harold and Erin. I'm looking forward to our conversation today. Erin O'Bryan: Thank you, Katie! I've been listening to Aphasia Access Podcasts for years, and so many of my heroes have been interviewed in this series. It is really an honor that you invited Harold and I to be on the podcast today! Katie Strong: I am so excited for our listeners to hear about how the Aphasia-Friendly Reading Approach was developed and expanded. This work is near and dear to my heart – particularly in this unique way of developing and telling stories. I feel compelled to disclose to our listeners that I am grateful to have been involved in this work as it was refined for clinical environments. So, I am going to come right out and say, this is my bias. Harold, I'm a big fan of yours and the Aphasia Friendly Reading Approach and of you Erin for how you brought this approach into the lab and studied it so that clinicians can use this approach. So, now let's get started! Harold, can you share a bit with us about how the Aphasia-Friendly Reading Approach came to be? Harold Reiger: Sure. Thank you so much, Dr. Strong, for the privilege of being here to share just a bit of our story. You know, Rosella and I would have celebrated our 65th wedding anniversary if she had stayed with us just a few weeks longer. We had a very long and very happy marriage. She used to kid me, "We've been together so long we know what the other person will say before he or she says it." Well, actually, aphasia kind of shattered that theory. But maybe there was a little bit of that was true. Well, anyway, Rosella was a retired public-school teacher with part of her career also involving children's curriculum development. She led many workshops, was a storyteller, and was a frequent guest speaker. Communication and broad coalitions were a strong suit for her. So, aphasia, loss of language was a huge loss for her. Perhaps that sets the stage for working so hard to restore some major storytelling. But I'm sure this is the same kind of feeling that every person who is a care partner with the person with aphasia has. How did we discover a technique for storytelling through oral reading? Really, I think I just stumbled into it. The cues came from Rosella. She could say many words. She had a strong voice, but she did not put words together in a way that made it possible for a listener to understand what she meant to communicate. So, I was highly motivated, wishing there was a way to help her tell her stories. Looking back, I now can see three of what I call 'indicators' that led me to the technique that I eventually called Aphasia-Friendly Reading. They were painting, reading, and church liturgy. So let me explain. Indicator number one, completely on her own, Rosella began to paint. Just shy of two years after her stroke, Rosella began to paint. She painted for four years. She painted 250 paintings. The choice of her subjects were all hers. Objects, scenery, flowers, roadside sightings, trips and vacations, past memories. And yes, stories, family stories, stories that she didn't have words to tell, but she could tell them with a brush. She gave every picture a title or caption, signed it, and dated it. And somehow she found those one, two, or three words to intelligibly, that is accurately, identify the picture that she had just painted. But after four years of painting those pictures, she put her paintbrush down, never to pick it up again. And yet I kept remembering that she was able to identify pictures accurately using those few words to explain what it was that she was telling with her pictures. But then indicator number two came, reading periodicals and books. She underlined periodicals with many circles, much underlining. For a long time, Rosella delved through as many as 40 or 50 books per month. She turned every page, but did she understand what she was reading? Frankly, I often wondered and doubted it. One day, Rosella was reading orally beside me, and I pressed my iPhone video button. Listen to just a few seconds of that reading. And while you listen, think of two questions. Could you understand what she was reading? What was the story that she was trying to tell? And secondly, do you think that Rosella was understanding what she was reading? So listen to that clip. Excerpt of Rosella reading from a book. You heard Rosella reading the story of she and her sister, Anna Grace, requesting radio station KNEX out of McPherson, Kansas to surprise their mother by playing it for her birthday. It was a song that the girls knew that their mother loved. And you heard her read those words, "I love those dear hearts and gentle people." And then as she continued reading the lyrics of that song, she exclaimed, "Oh, Harold", which was her way of saying how excited she was to recall that particular story. Now, that explanation, of course, was not in the book. Then there was a third indicator that I recognized, and that was liturgical reading. One day in church we were reading a call to worship displayed on the screen. We were reading responsibly with the leader reading the first line and the congregation reading the second line. I glanced to my side and was surprised to see Rosella reading with the congregation. Maybe it was only the first three or four words of the line, but she read these words accurately. A light went on in my mind. Might this be a hint of how to help Rosella participate in oral reading? Short sentences read with a co-reader who read every other line and written in an easy to follow format? And so I adapted various psalms into very short lines formatted for us to read responsively. I read the first line, she read the second. The result was amazing success. Let me just illustrate by us reading just a very short psalm for you. This is Psalm 150 that Rosella and I will read together. H: Praise the Lord! R: Praise God in his sanctuary. H: Praise God in his mighty firmament. R: Praise Him for his mighty deeds. H: Praise the Lord for his greatness. R: Praise him with the trumpet. H: Praise him with the lute and harp. R: Praise him with the dance. My thought then was, could we try to write other stories and read them in what I began to call Aphasia-Friendly Reading format and style? And so, I began in earnest to try to write other stories. Short sentences, familiar words, larger font. Each line considered a sentence, even if it was only one word. Label the first line H for Harold and the second indented line R for Rosella. As I started reading and continued to read every other line, this could set the tone, the rhythm, and the pattern for saying every word clearly. I thought it was time to try. And then I began to wonder, is there a setting that we could read stories to others? Could we create an audience in some way? When COVID hit, of course, I could not see Rosella in person anymore, for an entire year we were separated. And the only contact we had was FaceTime telephone calls. And those were really a disaster because we found it very difficult to communicate with each other when Roselle was not able to understand me and I wasn't able to understand her, except when we read Aphasia-Friendly stories. And so, I wrote many stories during that year. And we read those stories then as our connection during our FaceTime calls. And somehow we were able to survive COVID. But it was after COVID then that we were able to again get back together occasionally. And I would bring her back to my apartment. And there I would invite friends, usually a couple or two individuals to come over and I would serve waffles. I'm not a kitchen person, but I could make waffles. So, we'd have a simple meal, a simple supper that we could visit with each other and talk about anything that we would like. And Rosella almost always simply said, "I remember exactly". Because as others told stories that she was familiar with, she could comment that way. Otherwise, her conversation skills were not there. So that was our first hour that we would spend together simply informally visiting with each other. And the second hour that we spent together, we would go to what I would call "my theater," our living room with a 50-inch television. And there we could read Aphasia-Friendly stories. I would stream the story to the television set. I would have them formatted so that there would be an H for Harold, an R for Rosella, and we would read the story so that the folks who were listening and watching could see the story as well as hear the story. And if we made any mistakes, they could make the corrections in their own mind. There was a way that she was able to, again, participate. It's worth telling. But there was one waffle evening when she turned to me, and said, "China". I knew she had a story in mind, but her look said, "you tell it. I can't do it." And so, I did. It was a story about a cracked tea cup And so I decided certainly next Waffle Night we need to let her help tell that story of the cracked tea cup. Here is that story. Cracked Tea Cup. H: This is as story of a cracked tea cup. R: Harold and I were youth sponsors. H: Rose was one of the youth. R: Winifred was her mother. H: She invited me to her home. R: "Thank you," she said. H: "Thank you for being Rose's sponsor." R: We visited. H: Before leaving, she said R: "Let me pray for you." H: It was a pray of blessing… R: …for our work in Mississippi. H: Then she added, R: "Wait!" H: "I have something for you." R: She got a tea cup. H: Erland brought it to me from China. R: It's cracked. H: Put it in your china cupboard. R: You'll never use it. H: "But you'll remember be when you see it." R: Sixty years are gone. H: This tea cup is still in my china cupboard. R: And I remember Winifred. H: It reminds me R: Of the grace, H: Of the affirmation, R: Of blessing, H: Of the seminary president's wife. And so those Waffle Nights became the favorite parts of our week when we could spend time with friends and Rosella could be part of the conversation by reading stories together with me. Katie Strong: So beautiful! This is really just a fabulous way of having such a natural thing, a shared meal, a celebration to share stories. And it sounds like everybody enjoyed Waffle Nights. So, thank you for sharing, Harold. Erin, I was wondering if come into the conversation a bit more and tell us how you got involved with Harold and the Aphasia-Friendly Reading Approach? Erin O'Bryan: Thank you, Katie. Even though I've heard Harold's story so many times, I still get teary every time I hear him talk about their year of not being able to see each other during COVID and the Waffle Nights that were just so wonderful. So, I met Harold in 2019 when I first became an Assistant Professor after 10 years of working as an SLP in healthcare. And Wichita State already had a weekly aphasia group, and I couldn't wait to meet the members. So, I went to aphasia group and there I met all of the care partners in the observation room and Harold showed me a video of him and Rosella reading a story together. I had been watching Rosella in the aphasia group and I'd seen that most of her utterances were short one- to two-word phrases and that much of her communication was nonverbal. But then in the video, she was reading full sentences aloud, taking turns with Harold. And what really struck me was that she was so motivated and happy to read the story. I was so impressed. Harold asked me, "Do you think that other people with aphasia could benefit from doing this?" So many thoughts were running through my mind as we were having this conversation. Earlier in 2019, I had visited Audrey Holland, who was one of my mentors when I was in grad school at University of Arizona. And we'd actually set up this meeting through an online Scrabble chat. She invited me to her home. Katie Strong: How very 'Audrey'. Erin O'Bryan: Yes, it was lovely. And I got to visit her with all her kitty cats. So, I asked her advice because I was applying for an Assistant Professor position after 10 years of working in health care. And I remember that she was so excited about her speechpathology.com video series and the related book that she was working on with Roberta Elman that she liked to call the Social Imperative of the LPAA, which I believe is the subtitle of that book. And Katie, I think you were a part of both the video series and the book. Katie Strong: I was, yes. Erin O'Bryan: Well, Audrey just loved that. She was so excited about that, and she told me to learn everything I could about the LPAA. And she said, "I must join Aphasia Access." She said, "that's where all the important work is happening." So that year I listened to loads of Aphasia Access podcasts, and I got very familiar with the Chapey and Colleagues LPAA Values chapter. So then as I'm sitting there talking to Harold, I'm thinking about the LPAA value, everyone affected by aphasia is entitled to service. So, I mean, who is affected more than a spouse? So definitely I was thinking about having the care partner being involved seemed like a wonderful thing. And I was also thinking that Harold and Rosella's approach shared so many similarities with Script Training, which I have loved and have been using in healthcare care since grad school. And there also are similarities with ORLA and Multiple Oral Rereading. And all of these are evidence-based treatment approaches. So, I felt pretty confident that Aphasia-Friendly Reading could be a very valuable intervention. So, I said to Harold, "I'd like to try using your approach with other people with aphasia and their care partners in our clinic". And Harold was happy for us to try it. Katie Strong: I love that. I love that. And just for our listeners, we'll put some links and references in the show notes for some of the approaches like ORLA and Script Training that Erin has mentioned in addition to Harold's book and some other some other resources too. Erin O'Bryan: Yes, thank you, Katie. Those are all wonderful resources for people to be looking at. So, my grad students and I started a pilot study with a woman with aphasia and her husband. And they were actually friends of Harold and Rosella's from their aphasia group. We use the pseudonyms Cora and Dave when we describe them in our papers. It became clear that we needed to make a few adaptations to Harold's approach for use in the clinic. For one thing, I wanted the person with aphasia to have the largest role in selecting the story topic and deciding what she wanted to say. For our first session, we asked Cora and Dave to bring ideas for a story that Cora wanted to tell. And we also suggested they consider bringing some related photos. In our first session, Cora, Dave, my grad student, Addison, and I all sat around the table and together we brainstormed about the story. Cora wanted it to be about a Caribbean cruise that she and Dave had gone on. She brought photos from that trip. Dave helped with supplying names and information about places that Cora wanted to talk about. Places from their shore excursions, such as having their picture taken with a donkey in St. Thomas and visiting the Bomba Shack on the island of Tortola. We got Cora's feedback on every line that was proposed, fine-tuning the story until Cora liked every line. And we also adjusted some of the lines to make them easier for her to say. So once Cora and Dave were happy with the story, we helped them practice during our sessions, one hour per week with my grad student, Addison and I at the clinic. And we gave a printout of the story and a practice log to record notes about their home practice. In this first pilot project, Cora and Dave practiced their story for eight sessions until Cora said she was ready to plan their story sharing celebration. Then they shared their story with their friends in aphasia group. And the clinicians and the other people with aphasia in the room were just amazed. And other people in the aphasia group said, "I want to do that!" So, after two people with aphasia and their care partners did Aphasia-Friendly Reading projects, I wrote a manuscript reporting the pilot results. And Katie, I had seen online that you were an editor of Perspectives at the time. So, I emailed you my manuscript and asked if it was appropriate for Perspectives. And you emailed me back and said, "let's meet online and talk about it." I was so delighted that you were interested in my project. You suggested that I consider exploring the value of the intervention by interviewing the participants. And I didn't know anything about qualitative research. But, Katie, you helped me write great interview questions for the care partners. And you helped me learn thematic analysis so we could find the themes in the care partner's quotes. And so, after learning from you, I have come to love the thematic analysis process. I really think it leads to deep listening. What we learned from the interviews is that the care partners felt empowered by being included in the intervention and the care partners really valued the collaborative nature of the storytelling project and especially that the intervention was so different than the previous therapy experiences that they had had because it was person-centered, it was fun, and they got to share their story with other people in their lives. So, then the three of us, Harold, Katie, and I wrote our first article about Aphasia-Friendly Reading and it's published in Aphasiology and the title is, "I wasn't just sitting there": Empowering care partners through the Aphasia-Friendly Reading Approach. And then in 2023, the three of us went to Boston and presented it at ASHA. Katie Strong: Thanks for sharing that, Erin. You know, I think the experience of the care partners saying that therapy was fun important to note. And Harold has mentioned that Rosella thought it was fun, and the other participants thought it was fun. And I guess I just want to bring home that hard work can, can still be fun or therapy can be fun. And especially when it comes from the person with aphasia and their care partners. The topics are generated by the client and care partner. They're sharing things that are really important to them that have happened in their past. I love it. Erin O'Bryan: And one of the care partners even said that they learned better when it was fun. Katie Strong: I love it. Fantastic. Erin, I was wondering if you could share some tips for clinicians who might be listening that are thinking about how they might be able to incorporate this Aphasia-Friendly Reading Approach into their practice. Erin O'Bryan: Thank you for asking, Katie. So, in the past year, you and I have been talking about how we want to make it as easy as possible for clinicians to use our storytelling approaches in regular clinical settings, outside of research. And we really want clinicians to realize that it takes almost no time to prep for a person-centered storytelling session. You just have to go into the session ready to actively listen to what the person with aphasia wants to say. I love the acronym PULSE that you and Barbara Shadden wrote about in your paper, The Power of Story and Identity Renegotiation. And then in our paper, we reviewed PULSE again. So just for our listeners, I'm going to go through it real quickly because I think these are great things for clinicians to keep in mind. The P in pulse is for partnerships, partnering with the person with aphasia. And in the case of Aphasia-Friendly Reading, the clinician partnering with the care partner also. The U in pulse is for uniqueness. So, the clinician should be prepared to help the person with aphasia tell their unique story. The L is for listening. The clinician needs to learn how to really listen. And S is for supporting the person with aphasia in telling their stories. For example, using communication ramps in Supported Conversation for Adults with Aphasia strategies to support communication. And then finally, the E impulse is for explore. So as a clinician, be ready to go off-road with your client to explore the story that they want to share. And as a clinician, know that it's okay, even it's great for you to do that. Katie Strong: I love that. I love that. Erin, I guess that leads us into sharing that we do have a paper that came out in 2024 called Person Centered Stories on the Main Stage in Intervention, which highlights examples from three different story projects, including Aphasia-Friendly Reading. So, we'll link that to the show notes as well. Erin O'Bryan: Yes, and this year at ASHA 2024, Katie, you and I are going to be also giving a talk about this work called Elevating Person-Centered Stories to the Main Stage in Aphasia Intervention. And we are looking forward to presenting this work hopefully to an audience of clinicians. Katie Strong: Yes, yes, we hope to see folks in Seattle for sure. Well, I want to bring back both Harold and Erin into this conversation. And I think one of the things that I've recognized through this collaboration that you and Harold and Rosella and later on I got to be a part of is that we really are all better together. And I was hoping each of you could take a moment to share how this work has changed your thinking or maybe some ideas about sharing with others about what you've learned from this collaboration. Harold Regier: Well, for me, one of the things that I think I really learned from this is that we care partners need the therapist and the therapist needs us care partners. And there are more ways in which we can work together than perhaps sometimes we have done it when we have just been sitting there. And so, I really, I'm so pleased to be able to feel that that we care partners are more involved or can be more involved in the whole therapy process than what so often we have been. But I think that one of the things that the therapist needs to help us understand is when is it appropriate for us to be part of the process and when it is not appropriate for us to be part of the part process. It's not a matter of us being there all the time and sometimes being in the way. So, I think that kind of very frank candid conversation with us would help us understand that. And I certainly understood better that that the role of the care partner in terms of helping the person with aphasia be able to communicate better is very different from the role of the therapist. I never tried to be the person who was the teacher, trying to let Rosella know how she should do better and how we might be able to improve our reading. We just did it and it came out the way it came out. But then when I see how Erin was working with other clients and the persons with aphasia and the family members together identified the stories that they were interested in putting together, and the therapist helped put that together into words that they then could repeat or share together and in a storyline, that that is the place where I think we can be so much more collaborative with the therapist in a process like that. So I just always was telling myself, "Don't be a therapist. Don't be a teacher. Don't try to say, well, you can do better than that. Just simply do what is natural." And then I wish that the therapist would take the other role and really work hard to help the person with aphasia do better with their reading and their performance. We didn't do our reading for production. We did it for fun, as you were saying earlier. And then we did it because we wanted to share that fun and that experience with others. And that was so very, very satisfying for us. Those are some of the thoughts that have come to me in terms of the relationship between therapist and care partner. Katie Strong: Thanks Harold. Yeah, Erin, any thoughts? Erin O'Bryan: I've learned so much from this collaboration. From Harold, I learned what a difference it makes when a care partner puts so much time and thought into supporting their partner with aphasia's communication and her quality of life. Also I've seen how much Harold has done and I hope that me you know as a busy professor stopping and taking the time to tell him that I saw so much value in what he was doing at home with Rosella reading those videos together. I hope that this helped him realize that it was valuable to share. And I'm thrilled to say that Harold has been going around the state of Kansas giving talks about aphasia at colleges and senior living facilities. He's doing so much and I love to see that. And from collaborating with you, Katie, I've learned the importance of making the story sharing a really beautiful celebration honoring the person with aphasia and you know bringing special things like favorite food treats, beverages, flowers, and especially inviting the people that are important to the person with aphasia. We've now had five or six story sharing celebrations. It seems like everyone is more beautiful than the last. I've learned so much about that. And I've also learned that qualitative research helps me capture the meaningfulness of these projects and the meaningfulness as we're working with people with aphasia and that this research can be so fun and rewarding. Katie Strong: I love that. I love that. As I was listening to you, Erin, respond to Harold, it just sounds like together we can validate one another. The work that you're doing, you were doing with Rosella, Harold is very validating and then Erin bringing it into the lab to test it out and it's all beautiful. It's, it really is. And I guess as I reflect on this thought about what I've learned is to reiterate, Erin, something you said, that listening to family members or care partners and the ideas that they have to engage their loved ones in communication activities are so powerful and taking that time even if you are busy to listen and think and validate and see how that connects to the existing evidence-based literature. I think is really powerful. But I also think that there's this collaboration and the combination of care partners and clinicians and researchers. And of course, the person with aphasia at the center of all of that, making a powerful team to develop innovative methods of storytelling is really one of my big takeaways from all of this. Erin O'Bryan: Yes, that's wonderful. Harold Regier: I would like to give kudos to the therapists who worked with Rosella over the many, many years. Ten years of aphasia therapy, four of which were one-on-one, six of which were part of a support therapy group. Those therapists were such relational people, such encouraging people, and also knew the techniques that work in therapy. So, I wanted to say that those years were very, very meaningful, very, very helpful, and helped us with the day-to-day kind of living with hope, with the expectations that things can continue to get better. Katie Strong: Thank you, Harold. Yeah. Erin, any other thoughts as we wrap this up today? Erin O'Bryan: Well, I just wanted to say that I would never recommend that all intervention involve the care partner because I understand that it's good for the person with aphasia to get one-on-one time with the clinician. But don't forget that that care partner is often with the person with aphasia almost 24/7 and we may only see them one or two hours a week. So, it's so important that we do more to really educate the care partner about how to acknowledge the competence of the person with aphasia and really how to support their communication. So that's why I really want us to do more with in involving the care partner and in intervention. So, I'll get off my soapbox. Thank you, Katie, for letting us share about this project that I love. Katie Strong: I'm so delighted that we could have this time together today. Harold, thank you for your generosity and sharing your ideas and Rosella's stories with us and this beautiful work of Aphasia-Friendly Reading and Erin for your work in the lab and bringing it to the clinic. On behalf of Aphasia Access, thank you for listening. For references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I'm Katie Strong. Thanks again for your ongoing support of Aphasia Access. Contact information for Guests – Harold Regier hrregier@cox.net Erin O'Bryan, PhD., CCC-SLP erin.obryan@wichita.edu Resources Aphasia Institute's Introduction to Supported Conversation for Adults with Aphasia (SCA™) eLearning. https://www.aphasia.ca/health-care-providers/education-training/online-options/ Chapey, R., Duchan, J. F., Elman, R. J., Garcia, L. J., Kagan, A., Lyon, J. G., & Simmons-Mackie, N. (2000).Life Participation Approach to Aphasia: A statement of values for the future. The ASHA Leader, 5(3). https://doi.org/10.1044/leader.FTR.05032000.4 Cherney, L. R. (2010). Oral reading for language in aphasia: Impact of aphasia severity oncross-modal outcomes in chronic nonfluent aphasia. Seminars in Speech and Language, 31, 42–51. https://doi.org/10.1055/s-0029-1244952 Cherney, L. Babbitt, E., Oldani, J., & Semik, P. (2005). Efficacy of repeated choral reading for individuals with chronic nonfluent aphasia. [Clinical Aphasiology Paper] http://aphasiology.pitt.edu/1548/ Kaye, R., & Cherney, L. R. (2016). Script templates: A practical approach to script training in aphasia. Topics in Language Disorders, 36(2), 136–153. https://doi.org/10.1097/2FTLD.0000000000000086 O'Bryan, E. L., Regier, H. R., & Strong, K. A. (2023). "I wasn't just sitting there": Empowering care partners through the Aphasia-Friendly Reading approach. Aphasiology. https://doi.org/10.1080/02687038.2023.2272956 O'Bryan, E. L., & Strong, K. A. (2024). Person-centered stories on the main stage in intervention: Case examples from the My Story Project, Aphasia! This Is Our World, and Aphasia-Friendly Reading. Perspectives of the ASHA Special Interest Groups. https://pubs.asha.org/doi/10.1044/2024_PERSP-23-00272 Regier, H. (2021). A Decade of Aphasia Therapy: Aphasia-Friendly Reading: A Technique for Oral Communication. Independently published Available on Amazon Strong, K. A. & Shadden, B. B. (2020). Stories at the Heart of Life Participation: Both the Telling and Listening Matter. Chapter 5. In A. L. Holland & R. J. Elman (Eds.) Neurogenic communication disorders and the Life Participation Approach: The social imperative in supporting individuals and families (pp. 105-130) Plural Publishing. Strong, K. A & Shadden, B. B. (2020). The power of story in identity renegotiation: Clinical approaches to supporting persons living with aphasia. ASHA Perspectives, SIG 2, 5, 371-383. https://pubs.asha.org/doi/pdf/10.1044/2019_PERSP-19-00145 Youmans, G., Holland, A., Munoz, M. L., & Bourgeois, M. (2005). Script training and automaticity in two individuals with aphasia. Aphasiology, 19(3/4/5), 435–450. https://doi.org/10.1080/02687030444000877
Episode #122: Communication Access, Justice, and Ethics with Elissa Larkin (00:34:17)
Interviewer info Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer. In this episode, Lyssa Rome interviews Elissa Larkin about her work to increase communication access within her hospital system via communication partner training programs and her dual role as a speech-language pathologist and bioethicist. Guest info Elissa Larkin, M.S., CCC-SLP, HEC-C is a Bioethicist and Research Speech-Language Pathologist at the Center for Aphasia Research and Treatment at Shirley Ryan AbilityLab. Elissa earned her Master of Science in Communication Disorders with bilingual certification (Spanish) at Arizona State University and completed advanced training in bioethics at Northwestern Medicine Center for Bioethics and Medical Humanities, subsequently earning national certification as a Healthcare Ethics Consultant. Elissa's areas of professional focus include applications of ethical frameworks to promote patient rights and shared-decision making in rehabilitation practice, Life Participation Approach to Aphasia-centered research and treatment, and interprofessional education models to increase communication access and equity for all patients. Elissa received the 2023 American Speech-Language-Hearing Association Louis M. DiCarlo Award for Recent Clinical Achievement for her work in communication access education and advocacy. Listener Take-aways In today's episode you will: Understand the theory behind implementing communication access strategies at the institutional level in a variety of practice settings. Learn about some techniques to effectively teach supported communication to colleagues from different disciplines. Describe the impact on patients and rehab professionals of communication access. Edited Transcript Lyssa Rome Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech-language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication disorders in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Elissa Larkin. Elissa is a bioethicist, certified healthcare bioethics consultant, and research speech language pathologist at the Center for Aphasia Research and Treatment at Shirley Ryan AbilityLab. She's also certified as a bilingual English/Spanish SLP. Her areas of professional focus include applications of ethical frameworks to promote patient rights and shared decision-making in rehabilitation practice, Life Participation Approach to Aphasia-centered research and treatment, and interprofessional education models to increase communication access and equity for all patients. Elissa received the 2023 American Speech Language Hearing Association Louis M. DeCarlo award for recent clinical achievement for her work in communication access education and advocacy. Elissa, I am so glad to be talking to you today. I'm really excited for this conversation. Elissa Larkin Thank you so much. Lyssa, I'm very excited too. Lyssa Rome I thought we could start by having you introduce yourself a little bit more. Elissa Larkin Okay, sure, as you said, my name is Elissa Larkin. My pronouns are she/her/hers. In terms of positionality, I am a white, cisgender, middle aged woman, and before we really jump in, I also want to acknowledge and describe the context I work in—as a very resourced research and rehabilitation hospital. I want to explicitly recognize that because a number of things I'll share were made possible by very generous mentors and institutional resources that I know are unique and not necessarily available everywhere. I'll try to offer examples from my experiences, and really hope there will be things people can pick and choose pieces from that may fit where they practice. Lyssa Rome Yeah, and having spoken with you about this, I think that there are things that clinicians in a variety of contexts will be able to take away. So you have this really interesting background in bioethics. It's unusual for people in our field, and I'm curious, how did you get there? Why did you decide to do that bioethics training, and how has that informed your practice? Elissa Larkin Thank you. What a wonderful question to start with, and I'm grateful for the way that path unfolded. In my clinical practice, as an SLP, I think it was often issues of justice that motivated me the most, alongside my patients and families. We have a very active and engaged ethics department within our hospital, and so I got to partner with the ethicists at times on cases where there were issues that arose for some of my patients with communication disabilities. I was fascinated by how the process worked and how much patient rights and preferences were really centered very genuinely. At some point, I had the opportunity to do more training in a program that was designed for practicing clinicians—it was like, part time, over two years—arose, and I jumped at it. It was a wonderful grounding, kind of a broad overview and foundation of bioethics, principles and philosophies, theories, frameworks. And I felt like with each reading and class, honestly, Lyssa, I just there would be aha moments where it was like, "Oh, there's a name for that thing that I've been experiencing." Or, "Oh, this method of approaching a really complex, gray situation really helps make sense of it and gives you more of a place to start." I think sometimes in clinical practice, we can feel really swept up in all of these complex things happening. And we want to do something, but it's hard to know where to start or how to even make sense of everything that's going on. I just felt like the clinically oriented ethics training program really helped me with that. And then the more I studied it, the more I wanted to do something with it. It happened that when I finished the program, the ethics department within my hospital had someone retire from a part-time position, and so I threw my hat in the ring for that, and they hired me for the part time role. They took me on, basically, and provided me kind with an on-the-job fellowship for more of the clinical bioethics practice. And it's just been a really meaningful learning process. Another piece I think that is important for me is that the program, the Donnelly ethics program here, was founded in 1995 by a physical medicine and rehab physician who's also a disability rights advocate. That very much informed the shape of the program and just how it was embedded in our hospital system, how it operates, and certainly how I was then trained. And so it just really aligned with my own philosophy as an SLP, and there's just been a lot of dovetailing. As I said, the bioethicists on the team before I joined, none of them were speech pathologists. One has a legal background. There was a neuropsychologist, and then a PhD bioethicist, more academically trained. But they would partner with primary SLPs when the patient needed communication accommodations. Once I came onto the team, there was also a lot of openness. They really embraced my expertise, and I've gotten to work on most of the cases where a patient needs communication accommodations. And they've also really embraced learning these strategies themselves, implementing them. None of my colleagues go to consults now without a clipboard and a Sharpie. Lyssa Rome Wow, which is just living the dream. Elissa Larkin Yeah, they're doing it. You know, they're really embracing it. Lyssa Rome You've talked just now about how communication access is a part of the ethics work that you do, right? And it's part of what you think about as a bioethicist. And so I'm wondering how that ties into the work that you've done in trying to broaden access within your hospital system, and maybe you could talk a little bit about what you have done to broaden that access? Elissa Larkin Sure. Yeah, so communication partner training has become really central to my practice, and this is a place where I think mentorship is a really important part of my story. I work in the Center for Aphasia Research and Treatment. Leora Cherney is the director of the center, and she has been a mentor to me since before I joined the center, when I was a full-time clinician on the floor. She's someone who makes herself very available to SLPs throughout the organization, and so she provided guidance and support when I was learning about communication partner training and wanting to figure out a way to address things more broadly, as you said. I think for a long time we have been giving our colleagues fish. You know, it's like we share a patient who has communication needs, and they ask us for advice and modeling to accommodate that one patient's needs. And we do that, and it helps that one patient. And at some point I realized I wanted to teach people to fish. And so I started thinking about how to do that, and I sort of had this incremental from sort of like mini shoestring projects with a colleague on the floor. We both went to a Supported Communication for Adults with Aphasia, presentation that our colleague, Edie Babbitt, also a generous mentor, gave for our institution as a course. She had gone to the Aphasia Institute and done the Train the Trainer certification. And my colleague and I walked out of there and said, we have to do something like this on the floor. We have to do it more than how we're just doing it in a mini way, within the one hour we get for family education before someone discharges. We need to do something more dedicated. So my colleague Julie Carpenter and I developed this one-hour training for patients and their care partners, family, friends, whoever could come. We offered a full hour just focused on that, and that sort of began my process. Once we had success with that. We could, I mean, you could see the care partners learning to fish. I wanted to learn more. I wanted to learn how to do it better. I wanted to learn what was behind these trainings in theory. And so I asked for support from the hospital to also go and do the Train the Trainer certification at the Aphasia Institute. And they said, "Yes, as long as in return, we'll ask you to also do a webinar for us." My grandmother was a career middle school teacher for over 30 years. She always said, "The best way to learn something is to teach someone else." So I think the combination of preparing and delivering that webinar and going to the Aphasia Institute and learning just what I was looking for: the theory that was behind things, what they've learned over time, really from experts, and learning their system, helped really grow my knowledge and skills and sort of overall mindset of how to tackle this problem, this big problem, and maybe a bigger way take a little bigger chip out of it. One of the things that in that Train the Trainer experience that really struck me was they challenged all of us to think about the communication environments where we practice and the systems they're in, and look for opportunities to embed communication partner training. And for me, when I did that, I thought about our clinical ladders program, or professional development structure. You know that clinicians kind of enroll in and take these different electives to grow their skills, but it's in this sort of structured, supported way within the hospital. We already had a champion model, which is an implementation science model, a way of spreading knowledge and skills more broadly, sort of clinician-to-clinician. And I thought, what if we could have a champion program for communication strategies or communication accommodations? And I started working on that. And again, I went to Leora, who was very supportive and helped me think through how to structure it, and we pitched it as a pilot. In 2017 Edie Babbitt also mentored me in that program. We sort of thought through a curriculum of, how could I try to take what I learned from the smaller communication trainings I'd done and do it in a broader way and over more time. So it's a year-long program for rehabilitation clinicians, and it started with four clinicians, a small group, but we had all allied health disciplines, represented SLPs, OT, PT, and all levels of care within our organization. We had two inpatient clinicians, an outpatient clinician, and someone from our day rehab program. Throughout the pilot, the things that I really tried to center in the curriculum were practice—hands-on practice—opportunities to reflect: How did that go? What might you do differently? You know, we video record it, watched video recordings, discussed. And then also, opportunities for clinicians to apply it in their own practice and reflect on that too. So, you know, the idea was kind of, I did the initial Supported Conversation for Adults with Aphasia training in the beginning, and that was sort of foundational. And then each time there were two months or so in between meetings, and their job was to take what they learned in the meeting and go put it in a practice with their patients. And they kept a log of just like once every couple of weeks, one example where they used communication accommodations with patients. And how did it go? What was the clinical context? What did you do? How'd it go? And that was the fuel for the discussion to start the next meeting off, we'd all come back and share. I borrowed a phrase from a community member with aphasia who runs his own community group. He always starts with thorns and roses. And so that's what we would do in Communication Champions. You know, "What's been challenging and what's going well?" And then also we would problem solve together. If someone brought a challenge and said, "I could really use help," we would talk about it. For me, something that was really rich about the experience was I learned a lot too, of course, especially from hearing how clinicians in other disciplines would tackle the problem. Once they have foundational knowledge, sometimes they approach something differently than I would as an SLP, in a way that I thought, "Oh, yeah, I think that'll work better. That totally makes sense." We all learned a lot through that part of the process. So I think the program gives that foundational knowledge. They put it into practice. Halfway through, their job changes to focus on mentoring others. So they do a case study presentation to all their teammates, and kind of launch themselves as a Communication Champion. So they're presenting about a patient, hopefully the whole team kind of knows, so it's really relevant and engaging, is the idea. And they emphasize the communication accommodations they used in clinical practice and the impact that it had. And then they tell their teammates, "I'm in this program, I'm learning these skills, and I can be a resource for you." And then the program really ends in helping the trainees get to a point where they're then thinking more broadly. We go from the examples of communication accommodations for patients with aphasia to other diagnoses, because people are in the program from all over the organization, we're working with very different patient populations, sometimes so accommodations for a person with locked in syndrome, accommodations for someone on a vent, all the different varieties, cognitive-communication accommodations, and then they think about the communication environment where they practice. There's a wonderful article by Robin O'Halloran and colleagues from 2012. It's a metasynthesis of surveys done of various stakeholders, including patients with aphasia in an acute care setting and providers, as well as family members I believe, and collecting their input on communication facilitators and barriers. And then, you know, they came up with these six different categories. And so we read the article, and then the champions look at the environment where they work, because we know it can vary a lot across just one organization, which says a lot about how varied our patients' experiences can be, as well. And they break it down, what are the facilitators in my environment? What are barriers? And then we talk about it—is there any low hanging fruit? Are there any barriers that you could address that would be pretty easy to remedy, and are there any that would be really impactful to address? And some of those trainees actually have gone on to do a project to address some of those barriers. We added a Communication Champions level two, where once you complete the program, if somebody wants to do basically an independent project, they can request support. And, you know, I provide mentorship if needed, I just support them however I can. And there have been some really neat things that have come out of that, too. Lyssa Rome It's amazing. It sounds like you've developed a really rich program, and I'm curious about how it's been received, what kind of feedback you've gotten from the people that you've trained in the hospital. Elissa Larkin Thank you. Yeah, every cohort I end with direct feedback from the trainees about the program, all aspects: "What went well? What could be better? Anything else we should add?" And one thing that consistently people have said is that the practice is really valuable. We have actually partnered with community members with aphasia. I've neglected to mention this is all over Zoom at this point, which makes it accessible for people from all parts of the hospital and for our community members. So the practice, rather than role plays with each other, our community members with aphasia, Zoom in and have conversations and give direct feedback. "You did a good job speaking slowly." "Could you write more for me?" Things like that. And the clinicians have said that is not only really helpful, it helps them build confidence, and it feels really meaningful. And the community members have been so generous with their time, and they have also said they feel like not only is it fun for them, they also find it meaningful to feel like they're training clinicians who are going to work with other people with communication disabilities and maybe make things more accessible for them. So that's been, I think, a really important part of the program, and I'm so thankful that our community members are always up for being a part of it and giving their time that way and expertise for that matter. Lyssa Rome What about other examples of how this has played out for the people who you've trained? Elissa Larkin Yeah, I have to say, clinicians have shared some really powerful examples of what this has changed in their practice, and some of them might seem kind of simple like I had an occupational therapist inpatient who worked on a primarily neuro rehab unit, mainly with stroke survivors. She told me about this bathing session that she had with a patient with aphasia, and she was so excited to show me all the communication supports that she had created ahead of time, to walk the patient through what to expect, what the steps were, what her expectations were, to leave room for questions, all ahead of time. And then she said they had this extremely successful session. I said, "What made it so successful? What did that look like for you?" And she said, "Well, the patient did what I knew she could do. The communication didn't get in the way. It felt really accurate. And it was an important piece of her getting ready to go home, which was also really important to this individual. And so that, to me, was really meaningful." I've actually had some prosthetist orthotists join the program as well. So, you know, they're making braces for patients and other kinds of things, and they have had some great stories about just really getting it right. One clinician said that he was working with this patient with aphasia, and he was writing all these options down, and he brought all these examples to show her, and he said she was really particular. She was a very put-together person, and she ended up choosing this, like, hot pink brace. And when he confirmed, like, "This is what you want?" She was just all lit up like, "Yes, this is exactly what I want!" You know, that is meaningful in his practice. He was so proud and excited to tell me that. And actually, a couple of other people from the P&O department did the program last year, and this year, they're working on making the documents that they use in their department more accessible. So they've taken this on. Their manager totally is supporting it, and I'm kind of just supporting them. So to me, those are the signs that make me feel really hopeful, that the champion part of it is working. You know, I wouldn't even know that those barriers are there. That's not my field of practice, and for them to not only identify these issues, but start to feel like they can address them and improve things for their patients, and then have examples where it works. It's just been really exciting and rewarding. Lyssa Rome It's amazing to think about, sort of the ripples out from the work that you're doing within the hospital, and then also, ultimately, to patients and people who are in very vulnerable… I mean, you give the OT example choosing a brace, those experiences are so central for patients, and to be able to have such a broad impact by training people from so many different departments is really amazing. Elissa Larkin Thank you. And you know, just listening to how you put that, it made me think about again, some of the ethics terms that now bubble up for me are dignity. There was so much dignity preserved there and even uplifted for that patient during her bathing session. The personhood. The autonomy. And getting your brace exactly how you want it—if you're going to wear this every day, that's a big deal. I think, to be seen, to feel like you can advocate for yourself and your own care, because you're working with a provider who knows how to accommodate your needs. I think in our field, there have been leaders who have planted these seeds of talking about communication ramps, really looking at the parallels between physical accommodations and communication accommodations. That's another thing in the Communication Champions program: Clinicians have said, "That really makes sense." A PT shared—she practiced in day rehab—and she said, "One day, it just dawned on me that the paper and the marker that is my patient's least restrictive device for communication, right? I would never ask them to walk without their walker. Why am I asking them to have a conversation with me without their tools?" And those are the times where it feels like, "Okay!" I love that word ripples. I feel like there's a lot of empowerment happening in all directions. That's my hope, that the clinicians feel empowered, that when patients are interacting with providers who have this knowledge and these skills, and it's that the patients feel empowered too. And we know that it's complex. It requires ongoing adaptation. And so I hope that in talking about communication partnership, when clinicians are using the knowledge they have and they're trying, patients can partner with them. That's what we want. That's how we want it to be. You know, we're working for them. And we're working together, hopefully. Lyssa Rome Well, as you're describing that, it becomes so clear to me how ethics, how justice, and how access, are so deeply intertwined. So it's really clear that in both the ethics programs, and your work as a bioethicist in your hospital system, and the Communication Champions program, you're implementing those ideas, those sort of foundational values that I also hope are central to my practice. I mean, I think it's definitely something that I aspire to. And it's really impressive to me how you've put them into practice. Elissa Larkin Oh, thank you. I aspire to them too. Every day. All of this is nothing if not humbling, which is where we want to operate from anyway. Yeah, I'm thinking of one more little story. It might make me emotional to talk about it. Lyssa Rome Take your time. Elissa Larkin Yeah, thank you. It's a happy story. It's just… We have a program in our hospital for patients with locked-in syndrome, who've had brain stem strokes and the majority of whom are totally dependent communicators, mainly communicating with their eye movements, right? And I got to meet a patient with locked-in syndrome somewhat recently, who had a complex situation where he hadn't appointed a power of attorney for finances, and at that point he really needed someone to be able to help with those things. We were asked to do a capacity assessment to see if he could appoint someone. Normally, we don't actually do financial power of attorney, but this was a disability rights issue. It was like, if we can't do it here, then he's not going to probably have another opportunity where the resources are there to complete it. So I partnered with a neuropsychologist who hadn't worked with people with locked-in syndrome before, but she was very familiar with the assessment process, and we were really careful about how we planned the questions and the structure and the flow to give this person his best shot at demonstrating capacity. In the beginning, I was doing all of the communication with him and the spelling and the choices. But the neuropsychologist—we met with him three times—and by the third time, she held the board and was asking questions directly and helping spell things out. She actually, at times, I think, had a better angle for his eye movements. And it was just, he was just right on. They were in sync, and he totally demonstrated capacity. He indicated who he wanted, and had very clear rationale. And so when we told him it was clear and he was going to be able to complete this and our team would help him do this and put it in place, he just let out the biggest sigh. And you know, in terms of communication that said so much. You can imagine all the other ways that could have gone, and what an impact that would have on that individual's life, who absolutely deserves to be able to choose who they want to help was such an important thing. And you know, we thanked him for working so hard to communicate with us and being so patient as we learned his communication system. And then he also had a smile, like he was able to just do this spontaneous smile. You know, those two pieces of communication were just really meaningful. And after a debriefing with my colleague, she said she felt like she learned so much. She feels empowered to use communication accommodations, to reach out if she's working with someone who has different needs and she isn't sure. And that's how I want it to be. That's what I hope for. I hope everybody in the hospital, at some point, has access to training like this. Our security guards, they totally want to be able to do the same thing, right? Admissions folks. Everybody, wants to get to know our patients, to communicate with them in an equitable way. And I do think that having access to training is the answer, and having it tailored. Lyssa Rome What a moving story and how fulfilling that must be—both for the clinicians in other disciplines and SLPs too, I guess, who have learned how to provide access. It makes me wonder, as you think about what you've learned from having done this work, what would you like listeners to take away from having heard about the work that you've been doing? Elissa Larkin Well, my first thought is you're probably already doing more than you are giving yourself credit for. I think advocacy is kind of built into our practice in some beautiful ways. And I also think everyone should maybe do that same exercise that the Aphasia Institute folks suggested: thinking about the communication environment where we work, and thinking about the systems that are in place, and where there might be opportunities to offer our expertise. I think that there have been a number of times where colleagues of mine have been so receptive. And, you know, I think there's a lot of trust already between us, the folks that we work with. And so I think if we can find opportunities to offer communication, accommodation, mentorship. I also think the other piece that I've learned that is so important is—and this is in literature, too, I just have found it to be very true in practice—is tailoring. I have done communication partner training for our campus security, campus safety team. And I used very different examples for them. I talked to them first about when this comes up, what it looks like. It's got to be relatable. And I think that part of the brilliance of the SCA model and other models too, that include role play, is giving people a chance to put ourselves in the shoes of someone who has a communication disability makes all the difference. Then you get it, "Oh, that was really hard. And if I can make that easier for someone, I want to." And then you got them. Then they're listening. Then they want those strategies. They want to learn the accommodations. So I think offering our expertise, tailoring, and I think also, thinking about what scope feels reasonable. I talked about teaching people to fish. I also think giving people fish is really important—don't get me wrong. I worked with a chaplain team also, and one of the chaplains said to me… I asked him, "Do you have any advice if colleagues of mine want to provide communication training to their spiritual care colleagues?" And he said, "You know, I would start with a shared patient and one chaplain, and then get that person to convince their colleagues to listen. And, you know, maybe you can give them some certain tools, or you could just even meet with them." But I think all those small steps of bridge-building can be really impactful. I've been thinking a lot about just disability rights history, and I think communication access is at a certain point in its evolution in terms of awareness. And I think all of us can contribute to raising that. It's going to take time and just a whole lot of us chipping away as we can, growing, learning, along with people with lived experiences, and advocating together. Lyssa Rome Well I hate to stop the conversation, but that's a really great note to end on. I just really appreciate your sharing these really powerful stories with us, knowing that, I think clinicians in a really broad variety of clinical settings can take some of this and put it into practice so that we can also bring justice and access to the people that we're working with. Elissa Larkin Thank you. I agree. Lyssa Rome Elissa Larkin, it has been so great to talk with you. Thank you so much for sharing all of this with us. Elissa Larkin It's been a pleasure to talk with you, Lyssa. Thank you for the opportunity. Lyssa Rome And thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations. I'm Lyssa Rome. SRAlab Center for Aphasia Research and Treatment link: https://www.sralab.org/research/labs/center-aphasia-research-treatment SRAlab Donnelley Ethics Program link: https://www.sralab.org/services/donnelley-ethics-program Leora Cherney was awarded the 2023 Aphasia Access (inaugural) Sandra O. Glista Mentorship Award (alongside the amazing Robin Pollens) Aphasia Institute Supported Conversation for Adults with Aphasia (SCA) training Dr. O'Halloran's article: O'Halloran, R., Grohn, B., & Worrall, L. (2012). Environmental factors that influence communication for patients with a communication disability in acute hospital stroke units: a qualitative metasynthesis. Archives of physical medicine and rehabilitation, 93(1), S77-S85. Dr. O'Halloran's related tool: https://www.pluralpublishing.com/publications/inpatient-functional-communication-interview-screening-assessment-and-intervention The Communication Environment Survey Tool (CEST) The CEST is Copyrighted. You are welcome to use, copy and distribute the CEST for clinical and/or academic purposes, with the following restrictions: You may not retitle the tool or remove or obscure the SRAlab name or logo, copyright notation or the reference information. You may not state or imply ownership or authorship of the CEST, apply your organization's name or logo to the tool, or charge fees for access to the tool. You may not modify, enhance or otherwise create derivative works of the CEST without the written permission of SRAlab. If you wish to post the CEST on a clinic or academic intranet, please contact our legal counsel at econway@sralab.org for permission to do so.
Episode #121: Supporting Individuals with Aphasia and their Whānau to Hold Hope, Engage in Therapy, and Promote Wellbeing: A Conversation with Felicity Bright (00:54:13)
Welcome to the Aphasia Access, Aphasia Conversations Podcast. I'm Ellen Bernstein Ellis, Director Emeritus of the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences, and a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration and ideas that support their aphasia care through a variety of educational materials and resources. Brief topic intro I'm today's host for an episode that will feature Dr Felicity Bright. We'll discuss her research looking at factors impacting wellbeing, engagement and hope. Guest bio Felicity Bright is a registered speech language therapist and associate professor in rehabilitation at Auckland University of Technology in Aotearoa, New Zealand. Her research examines cultures of care, and in particular, how the cultures and practices in rehabilitation respond to the needs and priorities of patients and those who support them. She has a particular interest in stroke and in the needs and experiences of those with communication impairment through her work, Felicity seeks to support practitioners services and rehabilitation organizations and to provide better person centered care. Listener Take-aways In today's episode you will: Explore how qualitative research promotes the nuanced study of meaningful clinical practice Consider cultural differences in well-being and what this might mean for how we work with people with aphasia and their support networks Reflect on the importance of having discussions with patients about hope and well-being Discuss how culture and organizations impact healthcare practice for individuals with aphasia Show notes edited for conciseness Ellen Bernstein-Ellis Felicity, welcome to our show. Thank you for agreeing to be our guest today. Felicity Bright Thank you for having me. It's great to be here. Ellen Bernstein-Ellis Welcome Felicity. We're going to start today with an icebreaker question. The one you selected for today is, "Do you have a favorite book or movie about aphasia? Felicity Bright It was hard to choose one. Actually, I was just looking at my bookshelf and I went back to myself as a fairly new speech and language therapist quite a few years ago now. One that was really transformative for my practice was Talking about Aphasia by Suzie Parr and Sally Bing. It's a classic, but it was a beautifully written book that really opened my eyes to the experiences of people with aphasia beyond all the technical work that we'd learned in university and so on, but it brought to life the humanity of the people who have aphasia, and really helped me rethink why I do what I do, and what the real impacts of aphasia can be for people. Ellen Bernstein-Ellis Yes, that's a beautiful book that brings that all to the forefront. And I want you to say the title and author again, in case I spoke over you a moment ago, Felicity Bright The book is Talking about Aphasia and the authors are Susie Parr, Sally Bing and Sue Gilpin with Chris Ireland, Ellen Bernstein-Ellis We'll put that (i.e. citation) into the reference list on our speaker notes. So thank you. And as we start today's interview, I was wondering if you'd like to share your path from clinician to researcher, because we've had several guests who have started in clinical work and then came to their doctoral work and research a little bit later. So, I'd love it if you could share that with our listeners. Felicity Bright Sure. So I worked as a speech and language therapist in New Zealand. We are speech language therapists. I worked in a range of neurological settings, from acute stroke neurosurgery, did a little bit of ICU, did some rehab in inpatient services and in community, and really enjoyed that work, but I'd always had a long standing interest in research. I was a bit of a geek, you know, When I was in training, that was, that was me, I was the geek. And so I'd always kind of expected at some point I would go down the research track. It was prompted after I had my first baby, and my work required me to either go back full time or to not work. And so at that point, I chose to not go back to work full time, and a research job came up at Auckland University of Technology, and I'd followed their work for a while. We don't do speech therapy here, it was rehabilitation research, and I was offered an opportunity to be a research officer doing interventions as part of a randomized control trial with people with traumatic brain injury. And so that kind of gave me the space to bring together some clinical work, but also some research work. It gave me the opportunity to do my Masters alongside this with my fees paid. So that was fantastic. And it really solidified for me that I was quite happy and enjoyed being in that kind of clinical research space. And so I've been in the university now for 15, nearly 16 years Ellen Bernstein-Ellis Wow, that's a great story. So now you have a 15 year old, right? Felicity Bright I have a 16 year old who is now taller than I am. Ellen Bernstein-Ellis Well, thank you for sharing that. I'm just really looking forward to a discussion around some, what I consider critical but hard to define and challenging to research topics. like engagement, wellbeing and hope. I want to start by asking, how did you end up researching a topic like engagement or hope? You did say during our planning meeting that you research things that you're bad at, which made me laugh. So that sounds like some courageous and reflective exploration. So maybe talk a little more about that. Felicity Bright Yeah, I am a bit of a selfish researcher. I research the things that I find tricky and a little bit hard, because for me, I want to learn how can I do better at this? How can I help my students learn how to be better in these areas? How can I help clinicians not make the mistakes that I've made. I guess trying to be a better clinician has been at the heart of a lot of the work that I do. And you know, when I was working full time in clinical practice, I had patients who would stick with me where I just felt I let them down. They had such a short window of rehabilitation access. They were living with stroke for the rest of their lives. They maybe had eight or 12 weeks of speech therapy. There were just times when I really felt I missed the mark for them, when they didn't get the best rehab they could have had. And it was when I was working in the university in this randomized control trial of goal setting interventions after traumatic brain injury that it started to help me reflect on some of the why I was maybe having some of the challenges I was having. So in this trial, which was quite prescribed because it's a randomized control trial, I was noticing that patients seem to be engaging with these interventions a lot more than the people who I worked with in clinical practice, and that kind of surprised me a little bit. I also noticed that-- we were using Mark Ylvisaker's approach to goal setting around what is meaningful identity based goal setting--and people were identifying hopes and goals and dreams that would have left me panicking as a speech and language therapist. What do I do about this? But it made me realize, actually, I didn't need to panic about that, and there were ways to engage with people about their hopes and dreams that honored those hopes and dreams, that kept them alive. But also, I could see ways that I could work with this. I could bring my speech therapy hat and help people. And so it highlighted to me that maybe the things that I had perceived to be difficult or issues, didn't need to be and there were ways to think about these things differently and ways to work differently to better support people. So working on this trial, and I did some quite structured reflection around that with some of my colleagues, writing in auto ethnography around this, gave me the opportunity to reflect on these areas, but also highlighted that there was the real opportunity to do more nuanced and more detailed research that would bring to life different ways that we could support people to hold hope, to engage in rehabilitation that is meaningful and that might be able to produce some quite tangible suggestions to support clinicians and to support the people with stroke who we work with. Ellen Bernstein-Ellis I just want to say that these intangible, some what we call intangible topics that you've tackled, you always seem to end with tangible suggestions, and that's what I have found so inspiring. And we're going to circle back to hope in a few more questions. But, I just want to say, not only has my clinical thinking been informed and inspired by your research topics, but I've also just learned so much from the variety of qualitative methodologies that you've used in your work. I was wondering if you could share how you developed your expertise in qualitative research, maybe even offer some tips to people wanting to develop their own skill set. And okay, maybe I'm being a little selfish interviewer. You just said selfish researcher, but I found this challenging, and I've been trying to dip my toe, or I've fallen in head first, trying to develop my skill set around qualitative research. What's your advice? Felicity Bright I was really fortunate. I came into research, into a team that had qualitative expertise and that used a variety, but not a wide variety, of different qualitative approaches. And it was a team, and still is a team, that has really high standards for methodological rigor. So to us, it's really important to do research that is robust and rigorous and that anchors back to the underpinning theory and philosophy that underlies each of the approaches that we use. But I was also really lucky in my research that I had supervisors and bosses who really supported innovation, who didn't tell me, no, this is how we do things, who didn't expect me to come into a study and do it just as they had told me to do. But they created the space for me to explore when I was working as a clinical researcher, but also as a master's and as a PhD student. Really had no issues when I said I'm going to go to the library, and I would just sit in the library and read qualitative textbooks and come back with a completely hair brained idea, but that actually turned into something that was really interesting and meaningful. So the Voice Centered Relational Approach that I've used a number of times came from sitting in the library one afternoon and just reading Feminist Research Methodology books. And I think one of my tips would be read outside speech and language therapy. There's amazing work that is happening, not just in the health disciplines or education spaces, but I love reading health sociology journals. I get notifications of a number of different journal types that alert me to different work. One of my recent projects I used Applied Tensions Analysis, which I'd never heard of, but I had a notification come across for a paper about domestic violence settings and kind of how services work. That's not in my area of research or clinical expertise, but there was something within that abstract that made me go, oh, there's an idea there that is similar to the ideas that I'm trying to get at in my stroke research. And so reading widely, I use Twitter a lot as a way of, kind of coming up to date with different research. I use trial and error. I've tried things and got them terribly wrong. I tried Grounded Theory for about a year for my Masters, and it was atrocious. But also I found that doing research with people with aphasia pushes you to be innovative. A lot of the methodologies as they are published don't necessarily quite fit with the types of interviews or the types of data that we have, and so for me, that's provided an opportunity to test and do things differently. Ellen Bernstein-Ellis I mean, that's an inspiring response and encouraging support. So thank you. During our planning discussion, you also referred me to the Life Thread model and the 2008 article by Ellis Hill, Payne and Ward. What a wonderful article. So thank you for that. I was particularly taken with its implications for clinical practice and how it might guide us in asking questions in a better way to help us understand the social realities of our clients, to prioritize that. To understand how important the social reality is for our clients. Could you please share with our listeners some of the core concepts of the Life Thread model and how it's informed your work? Because I do see the connection there. Felicity Bright Yeah, I came across this, Carolyn Alice Hill, who developed it, I think, as part of her PhD, was a collaborator of one of my PhD supervisors, and so Cath put me onto it. But the Life Threads model is about identity. And Carolyn's work was in stroke, and she was kind of talking to how identity changes and develops over time. And the Life Threads model talks to how our lives and our identities are made up of many threads, and those threads, they can change over time. But when there's a traumatic event like a stroke, it can cause some threads to break or be frayed, and that can be really challenging. We know there's a lot of work around aphasia and identity construction and identity loss, that's come around. But also what we know is that stroke can also prompt people to think about what are the threads that they want to continue post stroke. Maybe there are some threads, I found in my hope research, where people are saying,"I don't want to be that person anymore. That's not something that I value", and for them, sometimes the stroke could be an opportunity to rethink what are the threads that I now want to bring into my life as I weave this new identity of somebody post stroke, but still continues threads that have come through from before the stroke. We know from the hope research that I was doing that it was often really hard for people to see these threads. It kind of felt like there was a pre-stroke life and a post-stroke life, and that there was quite a disruption. Those threads were cut. And so for me, it prompted questions about how do our conversations as clinicians help people identify the threads that are important for them to thread through their life. What are the new threads that they want to pick up on? You know, some of the work I've done, and we will talk about this a bit later on, around life after stroke, has highlighted how actually a lot of the conversations that happen between clinicians focus around things like tasks and activities and doing things, but there isn't necessarily a lot of conversation about identity or about what is meaningful and what do people want to carry through, and how can clinicians support that? And I would say that if we can kind of tune into the threads that matter to people or that people want to matter in their lives, it gives us a chance to tailor therapy to be much more personalized, more meaningful and more engaging, and I would suggest, probably leads to better outcomes for people. What we know from quite a bit of the research, not just my research, but other work, is that people are often doing this identity work on their own, without support. And we know that it's really hard, because our identities are social and they're relational, and they occur through connection and through communication, all of these things that are disrupted by aphasia, often. And so I think the Life Threads model really prompts us to think how can we as clinicians, support people to engage in conversations about identity, and how can we overtly, really attend to supporting identity within the work that we do. Ellen Bernstein-Ellis Wow, that's beautiful. And yes, I think there's been, fortunately, a growing understanding of the importance of looking at the lack of support for this identity work with us with our clients, and I can really see how the Life Threads model has played an important role in your thinking and research. I recommend our readers to the article because it has some great examples of how to maybe flex the way you ask questions to help understand the narrative better. So I think it's, a marvelous article, I just want to take a moment and let our listeners know about the fabulous interview that you did with Michael Biel on the ANCDS podcast where you discussed engagement and ways you might incorporate Goal Attainment Scaling to help our clients establish meaningful goals. I'll put the link to that, along with the citations to all of the work we're discussing today in our show notes. That also gives me a chance to say I don't have to cover everything today, because he did a really good job on those topics. But at the end of that podcast with Michael, you highlighted what was coming next, and that was your work on wellbeing. You've been exploring, and this is a quote by you, "what does it look like to explicitly attend to holistic, long term wellbeing?" Can you discuss some of the takeaways from your 2024 article, Psychosocial Well being After Stroke in Aotearoa, New Zealand, a Qualitative Meta-synthesis with your co authors, Ibell-Roberts and Wilson. Maybe we can just start by talking about the term psychosocial wellbeing. That's an important one to understand, but it can vary depending on one's cultural context. Just to start with that, so yeah, good luck with all of that! Felicity Bright It's a massive question, and it's funny, I started with the term psychosocial wellbeing, and I really intentionally used the language of psychosocial to kind of move away from thinking about just psychological wellbeing, which tended to be framed more from a mood perspective. And so I really wanted to be attending to some of the emotional, and the social, and the relational elements of wellbeing. But actually, I've now dropped the psychosocial because what we found is, when we talk to our people with stroke in the community, as part of our research, that term is completely meaningless to them, but the term wellbeing is something that resonates. Wellbeing is a really, firstly, a really nebulous term, but it's also really multifaceted. And I guess the place we've come to is, we view wellbeing as kind of quite unique to an individual, but it's deeply relational, and it's influenced through connection with people, with their cultures and with their communities, and all of those areas need attention. Now, in this piece of work that you referred to, Qualitative Metasynthesis, we were looking across the literature in Aotearoa, New Zealand, when we look at all the work that's been done, looking at life after stroke, and living life after stroke, what do people say about wellbeing and that highlighted that there were a number of features. Now, one thing I want to flag is that within New Zealand, we have an indigenous population, the Māori population of New Zealand, who have been here for centuries before Pakeha came and colonized New Zealand. And one of the things that's been really important in our work is to really make sure that we are upholding the voices of Māori, who are often either not included in research, or are involved in research that is not particularly culturally safe, or where their perspectives are kind of subsumed within the wider perspectives of the dominant Pakeha, or European culture. And so one of the things we've been really lucky to do with this is to have my colleague BJ Wilson, who was leading the Māori stream, so she engaged with our Māori data and literature uniquely. So we upheld that in its own right. That's context, because I'm going to talk to two different ways of thinking about wellbeing, one that was general from all of the literature and one that was specific to Māori . So when we look across all of the New Zealand literature, including the Māori literature, we kind of saw there were probably four key areas that seemed to matter for wellbeing. Having strong connections with family, with old, pre stroke friends, but also with new friends, people who had also been through stroke and had some similar experiences. The sense of self that was connected, where people had a sense of being connected to who they were before the stroke, who they are now, and have an idea of who do I want to be in the future? And there was a sense of coherence, sense of thread that went between those identities. There was, when they experienced wellbeing, a general sense of stability in the present. So things were okay now. It didn't mean that things were perfect. Some of the literature has suggested that people have to have positive emotions if they're going to have a sense of wellbeing. But actually, this qualitative meta synthesis, and the following qualitative work we've done has suggested, no, life is never 100% positive for any of us, but it's about having a balance of, yes, maybe there are some hard times, but also there are some good times as well. That overall, there's an equilibrium of emotions, Ellen Bernstein-Ellis Right the duality, like be able to hold the duality Felicity Bright Absolutely and kind of be okay with it, recognize that each of them has a time and a place. People also, when there was a sense of wellbeing, had a vision for the future, kind of a sense of moving towards that. So, yes, they were okay in the present, but they also had a sense that the present is not my future for the rest of my life. I can see a life that is meaningful and enjoyable, and I'm taking steps towards it. But when we looked at the literature from Māori, and this was the analysis led by my colleague, Bobby-Jo, it also came through ideas like whanaungatanga and ngā hono. So whanaungatanga talks to the notion of connections, and ngā hono talks to connections and kind of belonging as well. And that was a sense of connection to whānau. So that is to people's wider kinship networks, not just blood relations like a family would be, but to kinship networks who are meaningful to the person. Having a sense of connection and belonging in their community, but also to places of meaning. So not just people, but to places. We also notice an idea around ko ahau, so being connected to their identity as Māori, to their cultural identity, in a sense that their cultural identity was recognized and was valued and supported by those around them, including healthcare professionals. Ideas of mana and wairua. So mana talks to the inherent standing and value that an individual has. And we all know that in a healthcare context, actually, that can be diminished because you become a patient in the healthcare context. But actually, for wellbeing, having that mana recognized and valued and upheld was really critical. And when one's personhood is understood and respected, that also helped with the sense of wairua, I guess, the spiritual essence of the person. And finally, was the notion of rangatiratanga, which is about autonomy and control and the ability to make decisions for oneself. We can see that while there were similarities between our Māori and our non-Māori groups, there were also cultural differences. So for wellbeing, for Māori, had wider integrations with their sense of whānau, their family and kinship networks, and for their culture and wellbeing was unique for each whānau within the research. Ellen Bernstein-Ellis I'd like to take a moment and have you elaborate a little bit more on that concept of the relationship of whānau to wellbeing, and how the whānau may be impacted by the stroke and subsequent aphasia. So often our family and support network does not receive direct attention. And here, you're elevating it quite a bit, so maybe you could speak to that a bit more. This is really top of mind for me, because I just went to a think tank meeting and hearing the stories of the care providers saying, I'm not sure I mattered in this equation of my spouse's health care rehabilitation.It just really struck me to hear that. So please, let's talk a little bit more about those values. Felicity Bright Yeah, absolutely, for all of the people in our wellbeing research and in the previous hope research and so on that I've done, kind of people's whānau, their family and their social connections were absolutely critical to their recovery. And what came through, when we were looking at Māori experiences, was particularly also the intergenerational aspect, like sometimes within stroke services, we might think about the partner a little bit, not always particularly well. And I'll talk to that in a minute. But actually, we could also hear within our Māori whānau, kind of the impacts for generations above and generations below, like the disruption to relationships between grandparents and grandchildren, and how the grandparent who may have aphasia, would usually have a really critical role in passing on family knowledge, or passing on Matauranga, kind of Māori cultural knowledge. But actually, because of the way the stroke affected them, they couldn't do that and take that role on, and so that impacted not just on the relationship, but also kind of on the identity and how Māori culture could be passed on through a whānau unit. But we've also heard exactly what you talk about. Our services are focused around the person with stroke rather than their whānau, but our services are also really short term. And so what we can see from the research is that the family and the whānau become the connectors and the supporters. They are the consistent people. They hold, usually, deep knowledge of the person that often the healthcare professional doesn't hold. And we're doing some work at the moment around communication access in stroke units. And even in the context of really significant aphasia, we're hearing about how whānau, even though they don't know about aphasia, they don't know about communication strategies. But because they know how to read the person, they know their non verbal communication, they are actually really powerful translators, and hold the expertise that, actually, we don't hold as Speech and Language Therapists. But we also know that the whānau are key in helping people access supports outside the healthcare system, and they do a lot of that navigation work that they are left to do because the healthcare system doesn't do it very well. And like you say, that's really challenging when the whānau's well-being is impacted themselves, you know, but that isn't seen consistently, and it isn't acknowledged. They very quickly become the carer, rather than, this is this person's wife and they've been married for 45 years. Or this is this person's husband, and they've got three young children at home. What is this going to mean for their relationship as a couple, for their relationship as parents? And so the families are talking to us about the exhaustion and the grief and the shock and the loss. The relief that the person is alive, but again, the duality, there is relief, but there is also distress from the way that the stroke is impacting. And so we would really be calling for much more focus on everybody's wellbeing in this context, because if the wellbeing of whānau is not there, that impacts also on the wellbeing of the person. And I think we need to be shifting how we think about who is our client, whose needs do we serve, and what is our role in supporting the social and relational context around the person Ellen Bernstein-Ellis That's beautiful. You really highlighted that role, the role of the whānau. And you also identify, Felicity, some other key contributors to wellbeing, and then how those might really impact our clinical goal setting, and I know that's always such an important aspect of how we think as clinicians. You have to document because we're in a system, which we'll talk about. Maybe you can share some other factors that you identified. Felicity Bright Yeah, so I would be encouraging people to think about what are all the things that seem to support people's long term wellbeing? And those are things, like the relationships they hold within their family, but also within their social networks and within their work networks and so on, Thinking about the different emotions that people might be experiencing. Thinking about hope and what supports people to hold hope, and what do people hope for. Think about the connections that matter to people, the connections to people. The cultural things that matter for people's wellbeing. The connections to community activities and roles and so on. And think about the things that matter and are meaningful for individuals that usually fall outside our traditional SMART goals that we use in New Zealand, you know? Is it smart, specific, measurable, achievable, realistic, time bound? What is it? I would be saying our goal should be focusing on what makes a good life for this person. And I would be encouraging you, if you're a clinician, looking at the goals that you're setting for the person. Where is the good life in those goals? Is that up front and center and documented on the page that everyone can see it? That's something I learned through my goal setting research. That was my first research job, the importance of taking people's words, putting their words on a page, and keeping the words where everybody could see it. So where are the things that support wellbeing and that constitute a good life in our goal setting? Where are they in the interventions that we're doing? And I would be really encouraging people to reflect on how they are making the links explicit between the therapeutic tasks and the things that really matter to people. Because we know from the engagement work that when people can see the link between what they're doing in therapy and what matters to them in life, it is much more likely to be engaging and is much more likely to support them to persist, even when it's difficult, because they can understand this is why I'm doing this thing. Ellen Bernstein-Ellis Right? Oh, that's beautiful. That really leads nicely into another 2024 article that you've put out focused on wellbeing. And that's The physical wellbeing is our top priority: Healthcare professionals' challenges in supporting psychosocial wellbeing and stroke services. That article examines what seems to be a mismatch between knowing as clinicians that wellbeing is important, right, and being able to specifically address it within our clinical context. So, we say that we want to, and we know it's important, but the ability to get there, it's quite challenging. I was wondering if you could highlight some of your findings and key recommendations. And I think one of those actually addresses the graduate curriculum. I think that is really going back to the beginning, right? So, please share some of the wonderful work from that article. Felicity Bright So the context for this work is, this is part of a bigger program of research I'm doing around wellbeing after stroke. And this isn't specific to people with aphasia, but we do have people with aphasia in the research. This research came from this issue-- we've got decades of literature that says that wellbeing is important. We've got a body of literature that says clinicians know wellbeing is important, but we are persistently not addressing wellbeing, and we've got decades of patient experience data that says this is an unmet need. So I was really interested in understanding, why have we got this persistent mismatch between what is known what matters and what is done, and so using an approach called institutional ethnography to try and get into the cultures and the structures that contribute to this, the rationale behind that is I didn't want to be creating solutions that were going to be completely unattainable in the healthcare context. And so I wanted to understand what's going on in the structure of the healthcare system, and how might we be able to work with that or push against that, to create different ways of thinking about how we work to deal with this persistent issue. So this project, this part of the research, we were looking at, why are clinicians not seeming to address wellbeing? And so we interviewed over 30 clinicians, I think, within this research for a whole range of healthcare disciplines. What came through really consistently was everybody wanted to support wellbeing. Everybody thought it was important, but there were a number of factors that made it difficult, and we traced as to why that was so. Firstly, we can look back to when the person first comes into the service. They come into the emergency department. There's often a code stroke that's called. It's a time of really busy early biomedical focus around investigating the stroke, doing assessments. The first couple of days are about intervening to prevent another stroke or to prevent complications. And dysphagia assessment is a classic in New Zealand. Dysphagia assessment is usually prioritized over communication assessment because it is seen to have particular risks and contribute to particular complications. And so we've got this really early biomedical focus as people come through the first few days. Then the focus shifts a little bit to assessments and treating impairment in function. And when we were interviewing clinicians, they were talking about wanting to give people the best chance of recovery, and that linked to ideas around neuroplasticity and the importance of early intervention for maximizing neuroplasticity and brain remodeling. There was a real focus on addressing the practicalities like toileting and dressing and what was needed to get people home. And there was a view often that emotions could wait. We need to do the practicalities first. We can do the other stuff later. This was a time of focusing on helping people survive, get through and get home, and it was in the context of really busy wards. You know, sitting and watching nurses work, they are flat out. They are understaffed, and they have very limited time to be doing these aspects of work. But all of this contributes in this wider healthcare system that in New Zealand, and I suspect internationally, is short staffed, underfunded. We've got more demand than we've got beds. There is a really strong focus on getting people home. Now that's not inherently bad. A lot of our people that we speak to want to be home. Home is a more healing environment for many people than being in hospital. But when the focus is on getting people home, and that is usually about, is the person physically safe to be home, what can happen is other forms of work and other impacts of stroke can be devalued or be forgotten. And what we could see is people were doing work to support wellbeing within this, but it was kind of a particular form of wellbeing work. They would acknowledge a person's emotions, if they came up through interactions. They would be responding to the emotional cues that people gave off that they were maybe feeling a bit uncertain or a bit upset. They talked about the importance of listening to the person, but that was often couched in a 'I can listen for so long, but then I need to get on with my session', because the assessment, the treatment, the moving people forward wasn't important, and they would look to others to help. But the problem is, I would say this, this did a really good job of dealing with the tip of the iceberg, the emotions that were on the surface. But if we think back to what I've just said about what matters for wellbeing, relationships, connection, sense of self, hope, those things are not addressed. What we saw was that wellbeing was other to the core work of any individual discipline. That didn't work for anybody. Didn't work for our patients that we spoke to. It didn't work for our clinicians as well, because we could also see the moral injury and the burnout that comes when you can't offer the services that you know people are wanting and needing. And when we think about what do we do about that? Well, yeah, it's tricky, and I don't have any great answers, but training and education is one thing. So when we think about wellbeing as seen as other to the core business of the disciplines, we need to look at, what is it that we're teaching our students? What are we saying is core work of speech therapy or of physiotherapy or of nursing. I've got the privilege of chairing the accreditation body for speech therapy in New Zealand, and we are rewriting our accreditation framework at the moment that essentially dictates what programs need to teach. We now have a requirement that programs are teaching about psychosocial wellbeing, and that programs are assessing students on how they're addressing psychosocial wellbeing. We need to look at how pathways for care develop, and where is wellbeing within policies, processes, structures, documentation, Basically, it's nowhere. But we also need to look structurally, and we can talk a little bit more about structures and organizations and cultures, because I think what this work reflects is a wider issue around the cultures and the organization of care that can make it really challenging for clinicians to work in the ways that they do. Ellen Bernstein-Ellis Oh my gosh, it's a beautiful, beautiful response. I think my favorite quote, and there were many in that article, but the one that said "people with stroke live with the impacts of a stroke system that is designed around biomedical short term care for a lifelong condition and deserve services that support them to thrive, not just survive." I think it's what we need to bring back into the curriculum for our students to understand. And all of this ties into the importance of understanding how cultures and organizations, like you just said, of care, might impact the therapy we provide to our clients. Why do cultures and organizations of care matter? You're alluding to that. I think we've just started to reflect on that. Felicity Bright Yeah, I've often felt there's a real risk with the research that I do that we could end up pointing the finger at clinicians of not doing things as well as they could or as well as they should. But actually, we need to understand why is this? Why does it make sense for clinicians to prioritize dysphagia over communication? Why does it make sense to prioritize getting people home, over spending the time on addressing their wider wellbeing? And I've been really lucky to work with Deb Hersh and Stacey Attrill, we did a piece of work that looked at this in the context of how speech therapists enacted therapeutic relationships. And we started by delving into why do people work in the way that they do? We started to see the cultural elements. So the needs, for instance, your allegiances to colleagues, to be a good team player, to maintain your legitimacy. And particularly for speech therapists, who often have a slightly tenuous role in stroke teams. Physios and OTs are important, but speech therapists often have to kind of fight to kind of have their voices heard, and so that can lead to speechies behaving in particular ways. We can also see how cultures of safety impact on what people prioritize. So Abby Foster has done some beautiful work around the cultures of aphasia care and acute care, and highlighting that actually the priority for physical safety and managing dysphagia risk is privileged over the culture of or a need to think about what is the risk associated with communication and poor communication and people not having communication access. If we understand why people work as they do, and if we understand how the cultures and the structures work, then we can start to unpack them and think about what are the ways that we might be able to do things differently. You know, these cultural factors are very real, and none of them are inherently wrong, like it's not a bad thing that we're trying to prevent people getting aspiration pneumonia. That's really, really important, but we need to understand how these things shape practice and the unintended consequences that they might have for what is not valued and for what work isn't prioritized, and what outcomes don't actually seem to really matter in these contexts. And when we start to make these visible, then that opens up space to think about, how might we be able to do things differently, where we can maybe hold all of these things. And you know, in my work that I'm doing around wellbeing, that's the next phase of our work, is working with clinicians to think about, how might we be able to do things differently, so that it's not one or the other, it's not a dichotomy. But how do we create space for all of these things to be viewed as important and to be prioritized? Ellen Bernstein-Ellis You've started to dig into that already, because you have yet another 2024 article that you co-authored with Kayes, Soundy and Drown, Limited conversations about constrained futures: exploring clinician conversations about life after stroke in inpatient settings. And that examines how clinicians talk about the future with their clients. It analyzes 300 hours of observation of clinical interactions, along with 76 interviews with people with aphasia and 37 clinicians. I just want to say that's an astounding undertaking. So, as I read it, it felt like almost an extension of your 2013 and 2020 articles looking at hope, because you connected how what we say can impact how our clients see their future possibilities. Can you share some of the themes you constructed from all of that amazing data collection? I mean, I'm sorry, I thought 15 interviews were a lot, so then I saw this, and I'm like, oh my goodness, amazing. Felicity Bright It was a pretty massive piece of work, but it was a real privilege to be able to sit and just observe interactions. And I'm so grateful to our people with stroke, many of whom were like two or three days post stroke, and they had the stranger come along and sit there and observe them for 12 hours, but also to our clinicians, who were quite vulnerable in that process of having somebody observe and analyze what they were doing. But at the same time, I think that work is really valuable for looking at what is going on. What we could see is that the conversations that were being had tended to focus on quite a short term future, and we termed this theme constrained temporal horizons. When clinicians were talking about the future, the vast majority of those conversations were about the immediate future. For doctors and nurses--for nurses, it was often what needs to happen in this shift. For allied health and for doctors, it was what needs to happen before you discharge from our service into the next service. And for some allied health, it might be the first few days at home, but there was a view that talking about the longer term future beyond that should be done by other clinicians who might have more knowledge of what life could look like at that stage. We also found that the talk about quite a constrained future was in the context of actually very limited talk, in the first place. So when we think about communication access, for instance, we think, oh, people with aphasia aren't getting very good communication. Actually, lots of people with stroke are not getting very good communication. Again, thinking about cultural factors, but actually communication is not happening well in stroke units, or, I think within the wider healthcare system. You know, we've got a very task focused, medically focused situation. And so the conversations that were happening were on topics that were led by healthcare professionals, on the topics that they felt mattered-- the tasks they needed to do, the body structures and impairments. The goals that were set were about what needs to happen before somebody gets home. There was little talk about emotions. There was little talk about how you're feeling about what's going on, or what it might be like for you or for your family when you go home. And so this talk about the emotions and so on and future possibilities was left to patients and to families to raise. And instead, the conversations tended to focus on what the healthcare professionals saw as essential topics for the episode of care. We certainly did see some conversations about the future. So I don't want to be disparaging, and I also want to acknowledge the very partial nature of research. I did not see every single interaction. I know that a lot of these quite personal conversations often happen in things like the shower, when the nurses or the OTS are helping the person shower. That's one of the few private spaces on the ward. And so I want to acknowledge that my analysis is based on a limited data set, and it isn't based on all the conversations that happened, but certainly there was a trend towards limited conversations. We did see that clinicians would open some doors about the future. So they would talk about possible prognosis in the context of things like upper limb prognostic testing that is offered in some hospitals in New Zealand. We would see clinicians talk about what was meaningful to people, particularly in a context where the patient was struggling to engage, but often when the clinicians were talking about this wider future in this context, it was done to try and plant seeds about what the healthcare professional thought was realistic, and it was done to try and help the person engage in rehabilitation in the context of maybe struggling to engage at the best of times. So I think what we could see was that conversations were limited. They were limited conversations about short term, constrained futures that didn't necessarily set people up with hope for the future, with a sense of possibility, with a sense of even starting that process about what matters, to thinking about what matters to me, what do I want life to look like? Ellen Bernstein-Ellis Wow, and that really just circles us back to that concept of hope. Your work in hope has just been so meaningful to me. I've been really honored to be the guest lecturer speaking about aphasia to our counseling course that's taught by Dr Shubha Kashinath at Cal State, East Bay. And I've included, from the beginning, your work on hope. I just feel it's critical to give our students ways to understand and think about this construct and the role they can have in offering some hope building clinical interactions. I'd like to close this interview by having you discuss some of your first work that I had the honor to read, and some of the hope affirming strategies that you suggest in your 2020 article. Because I just think that's really a gift. Felicity Bright One of the things that really fascinated me in this work was how our people with aphasia in the research talked about how they look at their clinician and they are reading them to see, are you somebody who's going to give me hope or not? And if they didn't feel their clinician was going to support their hope or was going to help give them hope, or was going to disparage their hopes, they would shut down and they wouldn't share. And so I think, one of the things is to be reflecting on yourself. What are the messages that you are giving about how you are a safe person to talk to, about whether you are somebody that they can engage in these risky conversations about? I think there's a couple of things as well. We need to recognize that just because somebody says they hope for something doesn't mean that they expect it to happen. We all have unrealistic hopes and expectations. You know, psychologist colleagues talk to me about how actually having unrealistic hope is part of being psychologically adjusted, and why should that be different for people with stroke? Who are we to say that we hold the expertise. Now, that's not to say that there aren't challenges. So sometimes you might need to do a bit of a balance of, oh, is this something I need to engage in a conversation about? You know, an example is, if somebody is going to invest quite a bit of money in something that actually, there's no evidence to support and could potentially be problematic. There's a really good guideline I found from Christy Simpson, who's an ethicist, who talked about what are the positive effects that this hope has for people? What would be the impacts of taking it away, both positive, but also, what are the negative things that it would do? And so actually engaging in a bit of a risk analysis to think critically about what is holding this hope doing for somebody. Linked to that in the latest paper we did around recalibrating hope, it really highlighted to me the importance of trusting people to often recalibrate their own hopes. So I went back to my original participants from my 2013 research a couple of years later, and I looked at their experiences of hope over that time. And what we found was most of them recalibrated their hopes. They hoped for different things over that time, and they had done that as they engaged in different activities, as they tried things, as they considered their progress, as they rethought what mattered to them. And so that really highlighted, to me, the need to trust people, but it also highlighted the need to think about, how do we support a context that supports people to do that recalibration. Those who were more likely to recalibrate and hold both hope and realism together were people who had social networks, who were engaging in meaningful activities, and who had a sense of purpose and possibility. One of my participants didn't have that. They had lost their social connections. They had no activities in which they were engaging in what was meaningful, and their hope had shrunk. And so it talks to me again, those earlier conversations we've had about well being, thinking about what's meaningful, what supports wellbeing, that's exactly the same thing that supports hope. How are we supporting people's social wellbeing? How are we supporting their relational wellbeing? How are we helping them connect to what is meaningful and what is possible, not just to their impairments, and maybe what is not working so well. I think it's really important to be explicitly thinking about, what is it that helps people bring joy, have joy? What brings them peace in the present? And how can we help them have that sense that things are okay, even if they're not perfect, but also help them have that sense of looking to a future that's possible. Ellen Bernstein-Ellis Okay, we only have a minute or two left, but I'm going to throw this last question out to you. Felicity, if you had to pick only one thing that we need to achieve urgently as a community of providers, of professionals, what would that one thing be? This is almost like your elevator pitch. You got 60 seconds here. So, so Felicity Bright So my one thing, in a long, complex sentence, is that speech and language therapists need to reprioritize communication and supporting people to live well after stroke and aphasia, and they need to consider how we model to our colleagues and to our patients and families, and how we support cultures of care that value relationships and relational work, that value and support communication, and that value and support wellbeing. Ellen Bernstein-Ellis Oh my goodness, well said, Felicity. Thank you so much for the honor of having this interview today. I know it's going to be impactful to our listeners, and I want to thank our listeners as well. For references and resources mentioned in today's show, please see our show notes. They're available on our website@www.aphasiaaccess.org and there you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy, and if you have an idea for a future podcast episode, email us at info@aphasia access.org. For Aphasia Access Conversations, I'm Ellen Bernstein-Ellis, and thanks again for your ongoing support of Aphasia Access. Thank you, Felicity. Felicity Bright My pleasure. Thank you for having me. References and Resources AUT Centre for Person Centred Research: https://cpcr.aut.ac.nz/our-research Biel, M. (Host). (2016). An interview with Felicity Bright: The patient's engagement and experience with you, the speech pathologist (No. 2) [audio podcast episode). ANCDS. SoundCloud.https://soundcloud.com/ancds/ep-2-an-interview-with-felicity-bright-the-patients-engagement-and-experience?utm_source=www.ancds.org&utm_campaign=wtshare&utm_medium=widget&utm_content=https%253A%252F%252Fsoundcloud.com%252Fancds%252Fep-2-an-interview-with-felicity-bright-the-patients-engagement-and-experience Bright, F. A., Ibell‐Roberts, C., Featherstone, K., Signal, N., Wilson, B. J., Collier, A., & Fu, V. (2024). 'Physical well‐being is our top priority': Healthcare professionals' challenges in supporting psychosocial well‐being in stroke services. Health Expectations, 27(2), e14016. Bright, F. A., Ibell-Roberts, C., & Wilson, B. J. (2024). Psychosocial well-being after stroke in Aotearoa New Zealand: a qualitative metasynthesis. Disability and Rehabilitation, 46(10), 2000-2013. Bright, F. A., Kayes, N. M., McCann, C. M., & McPherson, K. M. (2013). Hope in people with aphasia. Aphasiology, 27(1), 41-58. Bright, F. A., McCann, C. M., & Kayes, N. M. (2020). Recalibrating hope: A longitudinal study of the experiences of people with aphasia after stroke. Scandinavian Journal of Caring Sciences, 34(2), 428-435. Bright, F. A., Kayes, N. M., Soundy, A., & Drown, J. (2024). Limited conversations about constrained futures: exploring clinicians' conversations about life after stroke in inpatient settings. Brain Impairment, 25(1). Ellis-Hill, C., Payne, S., & Ward, C. (2008). Using stroke to explore the life thread model: an alternative approach to understanding rehabilitation following an acquired disability. Disability and rehabilitation, 30(2), 150-159. Foster, A., O'Halloran, R., Rose, M., & Worrall, L. (2016). "Communication is taking a back seat": speech pathologists' perceptions of aphasia management in acute hospital settings. Aphasiology, 30(5), 585-608. Parr, S., Byng, S., & Gilpin, S. (1997). Talking about aphasia: Living with loss of language after stroke. McGraw-Hill Education (UK). Simpson, C. (2004). When hope makes us vulnerable: A discussion of patient-healthcare provider interactions in the context of hope. Bioethics, 18(5), 428-447
Episode #120: Navigating Social Media with Dr. Melissa Brunner (00:47:25)
Interviewer info Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer. In this episode, Lyssa Rome interviews Dr. Liss Brunner about how clinicians can incorporate social media into their work with people with acquired brain injuries. Guest info Dr Melissa 'Liss' Brunner is an early career researcher, lecturer at the University of Sydney, and a certified practicing speech pathologist with over twenty years of experience in supporting adults with swallowing and communication difficulties. Liss has clinical and research expertise in acquired neurologic disorders, particularly working with people who have experienced a stroke or traumatic brain injury (TBI). Diverse research experiences have enabled Liss to build specialist skills in qualitatively driven social media and digital health mixed methods research. Liss's doctoral research laid the necessary groundwork in understanding the complexity of the issues surrounding people with TBI using social media and how it may (or may not) be addressed during their rehabilitation. Listener Take-aways In today's episode you will: Understand how people with acquired brain injury use social media. Learn about barriers and facilitators for safe social media use after brain injury. Describe how speech-language pathologists can target social media use in rehab for people with acquired brain injury. Edited Transcript Lyssa Rome Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California and I see clients with aphasia and other neurogenic communication disorders in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Melissa or Liss Brunner. Liss is an early-career researcher, lecturer at the University of Sydney, and a certified practicing speech pathologist with over 20 years of experience in supporting adults with swallowing and communication difficulties. Liss has clinical and research expertise in acquired neurologic disorders, particularly working with people who have experienced a stroke or traumatic brain injury. She focuses on qualitatively driven social media and digital health mixed-methods research. Her doctoral research laid the necessary groundwork in understanding the complexity of the issues surrounding people with TBI using social media, and how it may or may not be addressed during their rehabilitation. Dr. Liss Brunner, welcome to the Aphasia Access podcast, I'm so glad to be talking with you. Dr. Liss Brunner Thanks so much for having me. I'm really, really excited to be here and talk about one of my favorite things. Lyssa Rome Great. So I want to just start by asking you what made you want to study social media use among people with acquired brain injuries? And why is it important to study that? Dr. Liss Brunner I suppose I want to start by asking you a question, Lyssa, if that's alright. Okay. So, I mean, do you use social media? Lyssa Rome I do use social media. Dr. Liss Brunner And what are your favorite types of social media? And why do you use them? Hope you don't mind me asking. Lyssa Rome That's fine. So I primarily use two social media platforms. I use Facebook for professional reasons. There's a lot of networking amongst speech pathologists on Facebook. I also use it because I get some exercise classes there, so that's kind of nice. And then I also use Instagram, which I primarily go to to find out about knitting and sewing patterns, and to look for gardening ideas. So it's sort of more hobby-based for me. Dr. Liss Brunner Perfect. I love that. I mean, I use Facebook also, but it's mainly to stay in touch with like high school or uni friends and my family. And I also use Instagram, and like you lots of hobby-based stuff. I love watching videos around food. Always makes me hungry, but I still love it. But I also love seeing what people are reading. So I will also quite often post what I've just read and get ideas for books that I could be reading and things like that. And I use it a little bit professionally as well to share what I've been doing and what I've been working on. And I use Twitter or X, as it's now known, probably more so professionally. So I do a lot of sharing about the work that I'm doing in there. But I use a whole heap of other platforms, as well, and kind of all for different reasons. If you think about it, over 60% of the world's population, actually, are active social media users. And we've just talked about how we use more than one platform. The average is actually seven different social media platforms for people who are active users. And so I got interested in supporting others in using social media, because I realized how integral it was starting to become, in my own life, and for the people around me. After a brain injury, we know it happens like that in a split second. And it can happen to anyone at any age. And so after those brain injuries occur, people lose lots of their friends. And, you know, their relationships just aren't what they used to be. They're quite often strained. They're not as fun as they used to be. And it can be really hard and devastating, not just for that person, but everyone around them, as well. And so family and close friends can find it really challenging to stay connected in a really meaningful way. And you don't really realize how important that is until it changes. And so, in rehab, I really like to support people to build up their social communication skills, with different people, different places. And I really believe that these days, one of those places we need to consider is social media. It's great to stay connected, you can make new friends, you can practice your communication skills in different ways, you can just kind of be included. So you know, you can tell everyone what's going on in your life after injury, or you can ignore that and just talk about other things like gardening and food and stuff. You can use social media to be what you want it to be. So that's kind of why I got into it. And why I think it's important. Lyssa Rome It sounds like you've just described both how people use it before their injury, but then also some changes in use after their injury, for example, and think of in the States—I don't know if this is also true in Australia—there's Caring Bridge and Go Fund Me and other sorts of websites where people are sharing information about their rehab process and about what's going on with someone who's had a brain injury or another kind of illness. Tell us a little bit about how people with acquired brain injuries are using social media. Dr. Liss Brunner Yeah, absolutely. I think this is one of the most interesting things to me is that I've interviewed lots of people after a brain injury about how they use social media. And just like many of us, they use a variety of platforms, they have individual preferences, they use them for different purposes. Some prefer Instagram, others prefer Facebook, others prefer online gaming with their friends. Many of them use social media for making and maintaining relationships. So that connection, others use it for altruism, so supporting others in need and sharing their experiences and strategies after a brain injury. But others also use it for advocacy, and activism. So sharing their experiences after brain injury to raise awareness, and reduce stigma that can be associated with it. Others are really active in contacting politicians and advocating for better support services and infrastructure. So they use it for a multitude of reasons. And it's quite often deeply personal, the way in which they do so. Unfortunately, I did also find out that quite often, people kind of relearning to use social media, sort of through trial and error. So they don't necessarily get lots of support to do it. they've encountered lots of challenges in using it well, so they can have some difficulties with cognitive fatigue, or even just navigating the different social media platforms because they're quite often apt to change, so to speak. Lyssa Rome RIght. Yeah. It sounds like they're both some real benefits to people with acquired brain injuries, but then also some risks involved. So maybe you could tell us a little bit more about some of those risks and some of the benefits for people with acquired brain injury using social media? Dr. Liss Brunner Yeah, absolutely. I mean, I'll start with the good stuff. So there's lots of advantages to using social media. I mean, obviously, we can use it to create connections, we can totally use it for the entertainment factor—I do all the time. But it's also a huge source of information and news can be an absolutely wonderful platform for sharing information and advocating for awareness. As I've said, I think it's a really great way to share your thoughts and connect with others if you're feeling particularly isolated. And I know that for people after brain injury, who have difficulty with their social communication, there's lots of advantages in particular. So some people may talk a lot more after their brain injury and some people may feel that they talk a bit too much. And so, you know, platforms like Twitter, or X, that have a shorter amount of space for you to make a post, that might mean that they have an opportunity to really work on limiting how much they say. And likewise, for those who have the opposite issue, and they kind of are more likely to struggle to find things to say, the same platform could be seen as a bit of a relief, because there's less pressure to write really long posts. So, you know, I think there are functions of the different social media platforms that can be really advantageous for people who have difficulties communicating. For people who have difficulties concentrating in fast-paced conversations in person, the asynchronous approach of social media can be again, provide less pressure, they don't have to think and respond in the moment, they can actually take their time to do that. So that can provide a bit of relief as well. And I find in general, people are way more tolerant around incorrect spelling and grammar and things like that in social media. And you can type words, you can add pictures. I love using GIFs and memes and emoticons. So, you know, all of these things can be used to make communication easier in these platforms. So lots of advantages, I think that we could kind of really draw on to support people. But obviously, there's also that downside, that darker side of social media, there's lots of risks. And it can be a really tricky space to navigate with and without a brain injury. And there's lots of concern, particularly from clinicians and family and friends around the real and sometimes perceived risks of using social media after a brain injury. So I've spoken to lots of clinicians and family members over the years. And they often tell me about how they're really worried about people being fairly vulnerable online, that they're at risk of being exploited, that they may ruin their own reputation by some of the things that they're saying online. And quite often, as clinicians, I suppose we can act as gatekeepers in a way. And so there's often this really big focus on our duty of care in the clinical context, because we want to prevent harm, we want people to do well and not actually be hurt more. And so we can be really risk averse, I suppose. There can be this real sense of responsibility for minimizing all of the risks. And so there's lots of issues around people getting fixated on social media, and that might lead to cognitive fatigue. It could be that they're having negative mental health or emotional effects of what they're seeing in social media. They could start withdrawing from in-person interactions because they're spending a lot of time online. I mentioned reputation management. So potentially people would say something online that will influence how other people perceive them. So whilst people are in post traumatic amnesia after a traumatic brain injury, they may regret posting something. Others have reported that their family members tell them that they're saying inappropriate things online and that's negatively affected their relationships. And sometimes it's affected their employment opportunities down the track as well. Others have had difficulties managing their finances and security due to difficulties with disinhibition and impulsivity. And so there's lots of concerns in particular around things like cyber scams and, and things like that. Lyssa Rome It sounds like the risks that a lot of us are faced with when we're using social media platforms. But even more so right, because of some of the issues specific to people with brain injuries that you've just described? Dr. Liss Brunner Absolutely. Lyssa Rome I'm wondering what kind of barriers and facilitators there are to successful social media use? You mentioned clinicians, reluctance, or sort of concern about the risks? What are some of the other things that we should be thinking about? Dr. Liss Brunner Yeah, absolutely. I mean, there's lots of barriers. But there's also lots of facilitators as well, which is good. I've spoken about some of the risks, but some of the other barriers are sometimes quite immediate. So some people might have physical barriers to using social media. So their vision might have changed, their hand mobility, and fine motor control might have changed, or they might not be able to independently go and get their device. And so they might need someone to go and get it for them. Others may not have devices, or reliable internet access, particularly if they're in a hospital, sometimes internet access is restricted. So there's those actual accessibility issues. In terms of the changes in cognitive communication, I think, a lot of what we can see in in person interactions—so when people are having a face to face conversation—those sorts of changes we see after a brain injury can often be influencing their online interactions just as much. So for example, after a traumatic brain injury, inattention, and being easily distracted, can be quite an issue for many. And so you might see this where someone will start responding to a post, but they'll get distracted, and they'll send, you know, a message that they either didn't mean to send or it wasn't complete, or it gets misinterpreted. And it can just unravel quite quickly. Sometimes, you know, emotional control changes quite often after an acquired brain injury. So managing your feelings can be really challenging. So some people can get really overloaded by the amount of information in their social media feeds and timelines. Or they might get really overwhelmed when they're seeing negative or sad posts. Like, obviously, we're seeing lots of sad things and disturbing things in the news, in particular, online at the moment, there's lots of conflict around the world. So being able to manage your feelings can be really challenging if you're not conscious about the influence social media posts can have on you. Sometimes, you know, there's issues in impulse control. And so some people will get sent friend requests and they will click accept without thinking, Oh, actually, do I know this person? Or do I want to have this person as a friend or, you know, posting before you think about what you're saying and how someone's going to take that and what the potential repercussions might be? It could be that, you know, people have difficulty finding the right words and that they may put words in that they're not wanting To say, and again, that can get misinterpreted. The other thing is that there's lots of information. And so it's quite hard to find and constantly changing. And I feel like that can increase the demands on people's memory, and how they sort through and organize information. So that can be overwhelming and challenging as well. On the flip side, there's lots of facilitators that we can harness for good to combat some of these things. And during my PhD, I identified five factors that influence social media use after a brain injury. And sometimes these things are barriers, and sometimes they're facilitators. So I think it's really quite helpful to think about things in this way. And so the first factor is purpose. So it's really important to think about, if someone is motivated to use social media, what's motivating for them? It could be that they are wanting to practice their communication. It could be that they are wanting to connect. They might want to find a romantic partner. They might want to figure out who they are now, after their brain injury. It could be just to fill in time, right? So purpose really influences how someone uses social media. The second factor, I think, relates to knowledge and experience. And so it's not just that person with a brain injury, but also the people around them. So some of the barriers can be that people aren't really clear on how to support people to use social media. And that could be because of their own experience and ability, and confidence. So all of those things can really influence how you use social media. The big one, that third factor is caution, I think, you know, it's really critical to be aware of the risks, which I've spoken about, and how to navigate them. The fourth factor is networks. And so it's really kind of thinking about who is your online network of people? So who do you want to contact? Who do you maybe not want to stay in contact with? And increasing opportunities to have really successful interactions with those people. And the fifth concept is really around support. So trying to find structures that influence success in social media interactions. So giving people practical supports and resources, whether that's an actual person, or whether it's a training program, or practice, with someone setting them up with a PR so they can have someone to practice with regularly. I think they're the five different factors that really influence how someone who's going to use social media, and whether they use it well, safely. And meaningfully, I suppose, because that's what you want it to be. The other thing that I think is really important, from a clinician perspective, in terms of facilitating use is to kind of be proactive. So rather than being reactive, and just only stepping in when problems happen is actually being a person that can support people with brain injury to use social media and asking those questions. So I feel like some of the research that I've been doing is really kind of been critical to try and find guidance for clinicians on how to do that, and how to have those conversations. So I spoke about those five different factors. I reckon if, for example, you were wanting to think about someone's purpose in social media, really, you just need to identify what platforms they want to use? Why do they want to use them? What's going to be really meaningful for them? So writing that down and thinking: Okay, who are you connecting with in that? Why do you want to use it? How can we make that better for you? So it's a really nice way to just start those conversations. Lyssa Rome When I think about clinically sort of getting to know someone, part of it is who are you communicating with? Like, who are you having conversations with? And if we think a little bit more broadly, you know, it's not just conversations in person or over the phone. And so to take an inventory that really reflects the person's actual communication across all different kinds of settings, is really important. I'm curious how people with acquired brain injuries are using these different social media platforms, you sort of mentioned some of them along the way, as you've been discussing the risks and the benefits, etc. But I just wonder if you could say a little bit more about that. Dr. Liss Brunner Yeah, I mean, we've been doing a few different little studies looking at how brain injury is spoken about, and who's using it in different platforms. So we've done a study, study looking at Twitter, it was Twitter, then it's now called X, I suppose. But back then it was Twitter. And we kind of really just explored what was being said about brain injury. And actually, I found there were actually lots of people with brain injury using the platform to connect with others to share issues around their health, life after their injury, raising awareness, and also as a source of inspiration and hope. So both giving and receiving those messages. So that was really nice. And then we've recently actually just completed some studies where we looked similarly, at YouTube and Instagram. And in both platforms, it was really clear that this is a space where people are sharing their stories of change. And because of the inherent functions of the platforms, they can share content that they make, or reshare, and a lot of it is quite visual. It really gives that person who's sharing the content, a lot more control over how they tell their stories. And I love seeing and hearing how people use social media to tell their stories. We're all so different. And even though there are similarities amongst the stories that people are telling about their brain injury, there's so much personalization and individuality. It's fantastic to see. In some of the interviews that I've done, you know, one person told me about how they use Instagram to share their photos of the world so that they were a photographer before their injury. And since their injury, they see the world differently. And they're taking very different photos. So I think everyone's using different platforms the way in which they want to, yeah, it's super interesting. Others have made using social media their vocation, so as a way of connecting with others who've had a brain injury and sharing, you know, tips and ideas to support recovery. And so that's kind of their job, and it's giving them that sense of purpose. Not just in using social media, but purpose in life and giving back and being able to feel like they have a sense of belonging and contribution. So, yeah, I find it super interesting. I love it. Lyssa Rome Well, and one of the reasons that I was really drawn to your work and wanted to talk with you on this podcast is that it seems like at its heart, what you've been studying and working on is promoting and enabling life participation for people with acquired brain injuries for whom social media is an important life activity—either was already before the injury or is now after the injury. And, to me, it's just, it's so meaningful for people and to sort of turn our attention toward social media in this way, I think is great. So it makes me wonder, to what extent are rehab professionals, speech language pathologists and others, addressing social media use with their clients or their patients? Dr. Liss Brunner This is a really hard answer to give. Because I'm speaking generally. And I know that, you know, we are very individual as clinicians as well. But when I used to talk about this, you know, I started more than a decade ago in this space, I would ask clinicians when I was talking at presentations, who's worked with clients on using social media, and I would maybe have one person put their hand up. Now, when I ask that question, the response is actually very different, and I would say, you know, the majority of people would indicate that they've worked on using social media in some way, shape, or form. But I feel like we don't necessarily have lots of guidance on how to do that well. And so lots of clinicians have said to me that they feel kind of lost when it comes to using social media. Not everyone uses social media and some of us have our preferred platforms that we feel comfortable with and don't know anything about some of the other platforms, right? Some of us say using social media is just a bit of fun. And it's, you know, a bit of a distraction from real life. So we have lots of attitudes and beliefs around it. And there's lots of challenges in addressing social media, because as I said, the platforms are constantly changing. And it's really hard to stay up-to-date. And so lots of people are really uncertain about all of those factors, and then they are, we've also got all of these medical and legal responsibilities, and we don't know where our boundaries are, in terms of navigating risks— whether we should be gatekeepers, or whether we should be just supporting people with information and education and coming in and supporting them if problems happen. Lots of people just basically want guidance, was what I heard. They want to know when to introduce the use of social media. They want to know when to let go of control of how people use it, and how to encourage really positive interactions. I feel like a lot of people have told me that because they're so uncertain, they tend to be mostly restrictive, rather than proactive. And so that restrictive practice occurs in lots of different ways. So it could be encouraging, and helping families to keep devices at home and away from people who have a brain injury. It could be that they give people the devices, but they limit the internet connectivity, so they can't use them functionally. Or it could be that they manipulate the privacy settings. So it allows people just to lurk and watch other people's posts, but doesn't let them post and interact. And so, you know, there's often issues where family members are encouraged to monitor social media posts for appropriate content and things like that. And I find that's, you know, not ideal for anyone, really, no one wants to have to do that. And no one wants that to happen to them. And it can create lots more barriers to autonomy. I'm pretty sure if my parents were telling me what to do and what not to do in social media, I'd not have a great response. And I also feel if I tried to tell my kids what to do and what not to do, they'd probably go straight out and do what I told them not to do. Because as if I would not because I'm old. Right? And not cool. There's probably another word for cool now that I don't know. You know, I think it's, it's really personal. It's tricky to navigate. And as clinicians, we've got to be really clear about what our attitudes and beliefs are and how they influence what we perceive as appropriate or inappropriate and how we navigate those conversations. I love referring people to the Mark Ylvisaker and Tim Feenye paper that's about Dobermans and Poodles. Because it really does push people to think about how we interact and influence people in our rehabilitation practices. So I think as clinicians, we want to be proactive, but we're just not quite clear on how we should do it. Lyssa Rome In one of your papers, you wrote about how we as speech language pathologists can move from a sort of paternalistic attitude toward supporting the autonomy of our clients with acquired brain injury. And it's something I think about a lot, not necessarily just in this context of social media, but in all other kinds of ways. And I'm wondering if you could say a little bit more about that, and about how SLPs and other rehab professionals should be thinking about including social media training and the work we do? Dr. Liss Brunner Yeah, it's really tricky. Because, you know, we don't want to be restrictive. We don't want to be gatekeepers, we want to be supportive. And I feel like sometimes when we don't have guidance, from our evidence in the research or practical resources, we can flounder a little bit, particularly when we know there are so many risks associated with something like using social media. I think we can probably all acknowledge that restriction isn't the answer, because it doesn't set people up for real life. It doesn't give them opportunities to learn from mistakes, which is what we would do a lot of the time in real life. I think one of the things that we can really do is harness the knowledge and skills of the person themselves, to help us as clinicians to know more about how they want to use social media, which platforms they're interested in, particularly if we've got no clue about how to use it ourselves. And so this could be a way to really educate ourselves, and kind of have more of a collaborative approach with that person. So you can set goals together, you can identify what's going to look like successful social media is to that person. How can we use what they did before their brain injury to guide us in terms of, is this something you want to get back to? Or do you want to do something different now? Those sorts of things. We can look for ways to provide them opportunities for participation, and give them some instructions on what might work really well. Let them go and try that. Give them education and really constructive feedback, so that they're working towards those positive interactions and trying to mitigate those risks in that really proactive way. Obviously, I think we need some policy around this, and guidance so that we can actively support people. But I think probably one of the first things that we need to do is address social media goals in rehabilitation. And these can be informed by other successful brain injury rehabilitation approaches, you know, so we've got lots of information on functional rehabilitation, we know that more meaningful rehab is motivating and more likely to have better outcomes. And we could adopt strategies that have been used in rehab that support other activities that we feel are higher risk. So always I think of return to driving. You know, we support people, occupational therapists, support people to return to drive and I think that's inherently really dangerous. But we do it because we see it as a really important goal for people to return to after injury. I kind of feel that social media is kind of in a similar vein, we know there's risks, let's put education and practice in place to support them to do well. Lyssa Rome Speaking of education and practice, you've created a training program for people with acquired brain injuries on how they can start to successfully use social media. So can you describe that and tell us a little bit about that program? Dr. Liss Brunner Yeah, I mean, I worked as a clinician for many, many years before I got suckered into research and fell in love with it. And so I always want to think about the practical implications of the research that I'm doing, I want to provide resources and guidance. And so I was very lucky to be able to work with the team at Sydney Uni, and the University of Technology in Sydney, and brain Injury Australia. We were able to source some funding through a grant, which was fabulous. And we had this larger project called the Social Brain Toolkit. And part of that was developing social-ABI-lity. And so it meant that we were able to work with people who've had a brain injury, some family members, some clinicians, and other researchers to design this social-ABI-lity program. And essentially, it's a free online training program on how to use social media after brain injury. Very simply, it's designed so that people with a brain injury can do it themselves, or they can do it with family or a friend or a clinician to support them. It takes about two to three hours to work through everything. And there's four modules, and so the modules are: What is social media; staying safe in social media; how do I use social media; and who can I connect with in social media. And we've really used metacognitive principles to support people to make a plan for using social media in a way that really suits them. And so we wanted to give them ideas on staying safe. When using social media and cyber safety, even those, there's one module on staying safe. Cyber safety is actually threaded through all four modules, because it was such a priority for everyone that we spoke to. And it just provides people with opportunities to learn about using social media, and really promoting the idea of finding social media buddies and building up a support network in social media. So there's written info, there's videos, there's questions to work through, there's a printable worksheet, so people can write down and keep the messages of the four modules. And things like that. We've run a pilot study, so that people could test out the prototype. And they found it was quite valuable. They thought it was really engaging and functional. They also told us what they didn't think was working. So we tweaked it, and hopefully made it better. And then we actually piloted that again, because we knew that just the training by itself was probably not going to achieve the best outcomes possible. We wanted to know whether group intervention would help. So we kind of got people to do the social-ABI-lity program, and also a peer practice group. So we set up the social-ABI-lity plus a social media practice group kind of thing. We set up some Facebook groups, because Facebook is one of the social media platforms that lets you set up a group and have private conversations. But you also don't necessarily have to be friends with everyone. So it meant people could keep their distance if they wanted to. In this study, we ran two groups for 12 weeks. And we basically just gave them stuff to talk about and connect with in this Facebook group. We also added in occasional meetups on Zoom so that people could meet each other face-to-face, even though it was online. So, you know, at the same time, they could have conversations and get to know each other in that way and see each other's faces. And the two groups found that this was really beneficial. So they had more confidence in using social media and they were just thinking about using it in a very different way. The other thing that we thought about though was we know that there's just this connection between people who've actually lived the path, rather than, you know, being directed by someone like me who hasn't raised this difference in connection. And so we wanted to know whether having a peer moderated group would actually change things. And so we've recently just run a peer-moderated group. And so we kind of sweet-talked two of our previous participants who were quite active in the groups and said, "Do you want to be part of our research team? Would you like to moderate a group? And we'll see what happens." And so we negotiated with these two awesome people. And they ran the group for eight weeks. So we shortened it a little bit just to make it more feasible and test it out. And before we started the group, we met with our two peer moderators, and said, "What do you feel comfortable doing? What don't you feel comfortable doing?" And we negotiated our roles before we even started, and even though they weren't significant changes in confidence, or any of the quantitative data that we collected in terms of quality of life and things like that, the conversations that people had, were just, I'm going to use one of the moderators words "profound." They were so different, they were more poignant, and deeper, the conversations that they had in these peer-moderated group, and the reflections that all of the participants had really showed that they connected on a really different level, which was quite lovely. Again, they found it was all feasible and engaging. But there was something about that added element of the peer moderators that made it extra awesome for the people involved, as well as for the peer moderators themselves, they just found that they had improved confidence and improved sense of self for being involved in it. So it was that sense of giving back that really made that group scene, which was really lovely. Lyssa Rome I think that that's so exciting. And it makes me wonder what else you're working on? And what's coming next. Dr. Liss Brunner Yeah, I mean, there's so many ideas, and it's just a matter of actually making them happen. Lyssa, at the moment, were actually designing a social media communication assessment tool that we hope will really help not just clinicians, but also people with brain injury, to start this process of figuring out their purpose in using social media and what their goals might be. And so we're designing it with people with brain injury and clinicians around the world. So that hopefully, it will be really relevant to everyone to just start those conversations. So we hope to have the first version of this available to share freely, hopefully, by the end of the year—next year, definitely. But I'm really excited to see how that pans out. That's the first next step. Lyssa Rome Yeah. I think that that is really exciting. And it it, it reminds me of something else that you've written about, which is how SLPs can almost assess their own social media use or think about it, and step back and think about it in order to better help their clients in their social media goals. And I'm wondering if you could explain a little bit about that for our listeners. Dr. Liss Brunner This is some work that I actually really loved doing. I think one of the things that can really support how we're able to assist others in using social media is to be really aware of our own use of social media. And I think in this particular paper that you're referring to, it's like we use the metaphor of a garden. And we kind of encouraged people to think about their own use and purpose of using social media. And we used this very arty based approach to thinking about our professional social media identity. And so we kind of describe this process of visualizing your own social media garden. And so it's a metaphor you can use to think about your purpose and build a strategy around how you're going to achieve that. And I think it can be used to get kind of like this real understanding of what social media really means to you, and identify aspects of your own professional identity that are important and could be enriched through using social media. So I think, you know, if you're interested in not just how you use social media professionally, but also how you can help people clinically, in this paper, we really tried to provide another resource to outline strategies for using different techniques to build up your professional and clinical practice. Lyssa Rome For me, as a clinician, I think one of the takeaways from this conversation and from reading your articles, which we will link to in the show notes, is this idea that we should be reflecting on our own social media use, and our own assumptions about social media use and its risks and its benefits. What other takeaways should listeners be thinking about—things that they can implement in their own clinical practice? Dr. Liss Brunner I couldn't agree more, Lyssa. I think reflecting on your own social media use is really powerful. I think it's a really good place to start. And I think then you can just start by having the conversation with people asking about why they use social media. Which platforms are you interested in? What do you want to get out of using social media? Who do you want to connect with? Just having those conversations, I think will give you very rich data to start making some decisions, having ideas around what goals could be targeted. I think, as you said, we'll put the link to some of my papers. But certainly the facilitators that I've mentioned in the AJSLP paper, can be kind of those five factors that can really guide you in thinking about the different aspects to consider around social media use. So you can kind of use that as a bit of a guide, until we're able to create and trial new resources to support that further. I think there's probably three key resources that I typically recommend that people check out if they want to support people to use social media. I think the obvious one that I'll point out is the social-ABI-ity program. And we'll pop the link in there. I think the other thing that I'd like to mention is another free online training program called Cyberability. And this has actually been designed by some colleagues here in Australia at Monash University, led by Dr. Kate Gould. But it's been built in collaboration, again, with people with brain injury, but who have also been scammed online. So they've got that lived experience. And they contribute their strategies and tips and what they've learned from going through that experience in this training. So I'll make sure that we get the Cyberability training link for you as well. The other resource that I find really useful here in Australia, is that we've got the Australian eSafety Commissioner website. And it's actually been supported by our government to provide lots of advice and resources on staying safe online. And I think, for kids in particular, I can be really handy. So I don't particularly work with kids. But I find that some of the resources there are really good if you do work with children. And there's actually an eSafety guide. And so it actually lists all of the different social media platforms and talks about how to protect your information and report harmful content on those particular platforms. So I think that's a really handy tool for people to know about as well. Lyssa Rome Those seem very useful. Thank you for bringing those to us. And again, we'll link to those resources. I am so glad to have had this chance to talk with you and I'm really looking forward to all of the exciting things that you're working on now. Dr. Liss Brunner, thanks so much for being a guest on this podcast. Dr. Liss Brunner Thank you so much for having me, Lyssa. It's been wonderful. I could talk about this stuff forever and a day. So I'm really pleased that we've had this opportunity. Thank you. Lyssa Rome And thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome. Additional Resources Contact Liss: melissa.brunner@sydney.edu.au eSafety Commissioner: www.esafety.gov.au/ eSafety Guide to Staying Safe Online: www.esafety.gov.au/kids/I-want-hel…ing-safe-online Cyberability - free training on how to stay scam safe after brain injury: www.cyberability.org.au/ social-ABI-lity - free training on how to use social media after brain injury: abi-communication-lab.sydney.edu.au/courses…I-lity/ Brunner, M., Hemsley, B., Togher, L., Dann, S., & Palmer, S. (2021). Social media and people with traumatic brain injury: a metasynthesis of research informing a framework for rehabilitation clinical practice, policy, and training. American journal of speech-language pathology, 30(1), 19-33. https://doi.org/10.1044/2020_AJSLP-20-00211 *Email Liss for a copy* Brunner M, Rietdijk R, Summers K, Southwell K, Avramovic P, Power E, Rushworth N, Togher L (2024) 'It gives you encouragement because you're not alone': A pilot study of a multi-component social media skills intervention for people with acquired brain injury. (Invited paper for a Special Issue on SLT/P clinical management of traumatic brain injury across the lifespan), 59, 543–558. https://doi.org/10.1111/1460-6984.12806 Brunner M, Rietdijk R, Avramovic P, Power E, Miao M, Rushworth N, MacLean L, Brookes AM, Togher L (2023). Developing social-ABI-lity: an online course to support safe use of social media for connection after acquired brain injury. AJSLP (Invited paper for a Special Issue of Select Papers from the International Cognitive-Communication Disorders Conference), 32(2S), 924-940. https://doi.org/10.1044/2022_AJSLP-22-00099 Brunner M, Rietdijk R, Togher L (2022). Training resources targeting social media skills: A scoping review to inform rehabilitation for people who have an acquired brain injury. JMIR, 24(4), e35595. https://www.jmir.org/2022/4/e35595/ Brunner M, Bryant L, Turnbull H, Hemsley B (2022). Developing and sustaining a social media ecosystem in speech-language pathology: Using innovative qualitative methods to visualise and cultivate a social media garden. IJSLP (Special Issue on New perspectives, insights, and practices: Qualitative research innovations in Speech-Language Pathology), 24 (5), 558-569. https://doi.org/10.1080/17549507.2022.2069860 *Email Liss for a copy* Ylvisaker, M., & Feeney, T. (2000). Reflections on Dobermanns, poodles, and social rehabilitation for difficult-to-serve individuals with traumatic brain injury. Aphasiology, 14(4), 407–431. https://doi.org/10.1080/026870300401432 University of Sydney profile Acquired Brain Injury Communication Lab website Twitter/X @LissBEE_CPSP Mastodon @LissBEE LinkedIn Instagram Facebook
Finding the person in front of aphasia: A conversation with Lauren Bislick (00:40:28)
Welcome to this Aphasia Access Aphasia Conversations Podcast, a series of conversations about aphasia, the LPAA model, and aphasia programs that follow this model. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Conversations Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am the host for our episode that will feature Lauren Bislick, in which you will hear about friendship, yoga, mental imagery and aphasia. These Show Notes accompany the conversation with Lauren but are not a verbatim transcript. In today's episode you will hear about: the value of friendship in our lives and Mission SPEAK, ideas for creating an accessible yoga program for person with aphasia, and the value of mental imagery. Dr. Janet Patterson: Welcome to this edition of Aphasia Access Conversations, a series of conversations about the LPAA model and aphasia programs that follow this model. My name is Janet Patterson, and I'm a research speech language pathologist at the VA Northern California Healthcare System in Martinez, California. Today I am delighted to be speaking with Dr. Lauren Bislick, a newly minted Associate Professor at the University of Central Florida, in the School of Communication Sciences and Disorders. Lauren is also the director of the UCF Aphasia House, and the director of the Aphasia and Related Conditions Research Lab. Across her work efforts, Lauren investigates the diagnosis and treatment of acquired apraxia of speech and aphasia, the value of mindful body practices such as yoga, friendship development, and interprofessional education and practice. In 2023, Lauren was named a Distinguished Scholar USA by the Tavistock Trust for Aphasia UK. The Tavistock Trust aims to help improve the quality of life for those with aphasia, their families and care partners by addressing research capacity related to quality-of-life issues in aphasia. Congratulations on receiving this honor, Lauren. Aphasia Access collaborates with the Tavistock Trust for Aphasia in selecting the awardees and is pleased to have the opportunity to discuss their work and the influence of the Tavistock award. Welcome Lauren, to Aphasia Access Conversations. Dr. Lauren Bislick: Thank you, Janet, and thank you Aphasia Access for having me. Also thank you to the Tavistock Trust for the review team for nominating me and for selecting me. I'm truly very honored to be a recipient of this award. Janet: It's a well-deserved award. Lauren, as we said, you were named a Tavistock Trust, Distinguished Scholar USA for 2023. You join a talented and dedicated group of individuals in this award. How does receiving the Tavistock award influence your clinical and research efforts in aphasia? Lauren: First, I'll say again, I was truly honored to receive this award and was definitely surprised. The nomination announcement occurred at the Clinical Aphasiology Conference, and they didn't give us a heads up that the announcement was coming through, so I was very surprised. I think in terms of how this has influenced my clinical and research efforts as an academic, and as a clinician. I think a lot of people can relate to that feeling of imposter syndrome, and so receiving this award has helped me push that feeling to the side a little bit in some aspects of my work and of what I do. It's also allowed me to feel very proud about what I've been able to do. but more so through my collaborations and my students and the community that we have at UCF. It's allowed me to grow connection. Since receiving this award, people have reached out to me to talk about collaboration or wanting my help in terms of more of a consultant role. It's allowed myself and my lab to reach a larger group of people and has definitely supported that emphasis on quality-of-life work, which is not necessarily the training that I focused on when I was in my doctoral program. That's been something that I've come into in my time as an assistant faculty member or a junior researcher. It feels very good to be acknowledged for that and for these lines of work being supported. Janet: And well deserved, for certain. Lauren, I would like to begin by asking you about your recent work investigating the role of friendship for persons with aphasia. I believe in the power of friendship and community during joyful times, and also during sad times in one's life. One of the unfortunate consequences of aphasia can be the loss or diminishing of friendships, or the communication skills important to developing and sustaining friendship and community. How did you become interested in this aspect of aphasia? And what conclusions have you drawn from your research? Lauren: Thank you for this question. One of the things that I talk about frequently in both my aphasia course and the motor speech disorders for our graduate students, is how individuals with acquired communication disorders, whether it be linguistic, or motor based, is that their social circles get smaller, and we know that's a problem in life. Friendship is an essential component of quality of life, and as you said, whether celebrating the good things or you're going through a hard time you need those friends. This is an important area that I believe gets overlooked although now we have a couple of different groups looking at friendship and aphasia, which is wonderful. I actually have to thank Dr. Elizabeth Brookshire Madden for pulling me into this work. She is at Florida State University, and I like to call us aphasia sisters. We went through the same doctoral program, and she was one year behind me. We became very close during that time, both as friends, but also in the work that we do. [Aphasia Access note: Elizabeth Madden was selected as a Tavistock Distinguished Scholar USA in 2024.] One of the other faculty members at Florida State University, Michelle Therrien, does work on friendship, but in the pediatric world. This grew out of conversations between Liz and Michelle, where they started talking about how we can look at friendship and aphasia. Clearly, we all believe it's an issue, but it hasn't been well investigated. That was shortly before the team Project Bridge Conference, which is really what helped initiate this kind of area of research for our group. Liz and I met at the 2018 Project Bridge conference and started facilitating a friendship group; she took the lead in this area. I got pulled to the yoga group, which we'll talk about later. Liz talked with a number of care partners of individuals with aphasia, and started discussing their social groups, and then friendship. Leaving that conference, she had some really great ideas about where to go next and what was needed in the area of friendship. From there grew her team of myself, Michelle Therrien, Sarah Wallace, at the University of Pittsburgh and Rachel Albritton, who's also at FSU. In our first study, we did a survey with SLPs trying to ask if SLPs see friendship as being an issue? You know, is this us projecting, or is this something that clinical speech-language pathologists are seeing as an issue? If so, are we addressing it in the field? What that initial study showed us was that, yes, SLPs report that their clients are experiencing loss or difficulty with friendships. They also reported that there are barriers, there aren't assessments that ask about friendships, and there aren't interventions. So, while they see this as an important thing, and something that SLPs believe that this was within our scope of practice, they need a little more guidance as to how to support people with aphasia in terms of maintaining friendships, and then also developing friendships. Following that study, we then spoke to people with aphasia and also spoke to caregivers of people with aphasia to get their perspectives and their lived experiences. What happens to friendship, immediately after a stroke? In that acute phase? What happens to friendship during that chronic phase? And then where are they now? What we found through these conversations is that many individuals reported that their friendships had changed after they acquired aphasia, both in the acute phase and the chronic stages. The same could be said for caregivers as they are navigating this world as caregivers. They are experiencing changes in their friendships. With aphasia being a chronic condition, this is something that people are living with for the rest of their lives. Friends can kind of be there in the beginning, and that acute care phase where they send messages or come by to say hello and show their support. As they realize that the communication impairment isn't going away, they don't know what to do and may get a little uncomfortable, feeling bad that they don't understand their friend with aphasia, or they don't know how to support them in their communication, or this problem isn't disappearing. This is me projecting, but I believe that's what's happening and what we're seeing is that people with aphasia, and their caregivers are reporting this loss. They also are reporting gaining new friends as they become ingrained in social groups. They meet other people with aphasia or care partners of other individuals with aphasia and develop friendships that way. They are also reporting smaller social groups, smaller groups of friends from their pre-aphasia life, dwindling for a lot of people. We think from our research what we're finding is that we really need interventions that target friendship maintenance and development. Some of that may be as simple as providing education, inviting friends into the therapy room. We do this with care partners, we can also offer this to friends to see how we are interacting with your loved one with aphasia. We can provide key tools to support communication; I really think a big piece of it is education. We've got to find the best way to navigate this in the clinical world. I think that's the next step not only for our group, but for the other groups that are looking at Friendship. Janet: Lauren, you make some very good points in those comments. I wonder, do you have some brief thoughts or very specific ideas about how as clinicians, we can act in ways to optimize the friendship activities of our clients, or their care partners, recognizing though, that everyone has different styles and needs for friendship? It's like you say, we should not be projecting our desires and our styles and our needs onto our patients, but rather listen to them and figure out what their needs and desires are? Lauren: Number one, right there, is listening to our clients, listening to their loved ones, what do they need? As I mentioned before, I think education is a really big piece of this. That may mean just having some materials as a speech-language pathologist that you can send home with family members that they can give to friends, right, so not just materials for that care partner, or the person with aphasia, but materials for friends. Here's something that will educate you a little bit on what aphasia is, there are some ways that you can successfully communicate with your friend with aphasia, here's what to expect. I think some of it is people just don't understand. They don't live in our world clinically, working with people with aphasia, working with people with communication disorders. For some, it's that they've never been exposed to, and so there's a discomfort with the unknown. I think education is huge. Also inviting friends. If you're going to have a counseling session with a care partner, and a person with aphasia, and their loved one, would they like friends to be at that table? Ask them. They may not, they may want it just for them and to be quiet and personal, but they may have some really close friends that they know they're going to lean on and want to be there. Opening the opportunity to invite other individuals and also inviting friends to support groups. Bringing friends to support groups, I think, would also be a space where friends then can observe interactions among people with aphasia, as well as their loved ones, and can have an opportunity to interact with other people with aphasia. So those are a few things that I think we can do right now. There are through many of the different resources like ARC [Aphasia Recovery Connection], for example, there are opportunities for education, communication partner training, and those are things that we can also plug friends into Janet: Those are some very good ideas, Lauren, very good ideas. You have also worked to address the isolation felt by people with aphasia, and severe acquired communication impairment through your lab's Mission SPEAK program. Can you tell us more about this program, please? Lauren: Absolutely. Mission SPEAK stands for Mission to Promote Socialization, Participation, Engagement, Advocacy and Kindness, for people with severe acquired communication disorders. This grew out of a lack of participation among some of our community members who had more severe communication impairments. They felt that they were just unable to be successful in a group setting, and tried some of the aphasia support groups, but didn't feel like they were being heard, or that they had equal opportunity, or were just frustrated by it. It didn't feel right for them. And so, I started thinking about, well, how can we provide an opportunity for individuals who feel this way, or maybe they're just more introverted which could be another piece to why they don't want that large group. How can we provide opportunities where they're still getting to practice communication in a safe space, develop friendships, and just be able to interact to combat those feelings of isolation that people with aphasia and other acquired communication disorders report. Mission SPEAK is a program where the students in my lab, both undergraduate and graduate students, some are CSD, some pre-med, some in their med programs, where they have the opportunity to meet with an individual with aphasia or another acquired communication disorder on a weekly basis to have a conversation. It's all via Zoom. These meetings can take any shape that the person with aphasia or the communication impairment and the student want to go with it. We have some individuals that meet to actually practice what they're learning in therapy and so the clinician has connected with my students to say 'Hey, can you go over this homework with them or allow them opportunities to practice' and sometimes the clinician will hop on to Zoom as well. We also have opportunities such as one of my students and one of our friends with aphasia are reading a book together and so they do shared reading. In another pair we have a young man who really just needs interaction, so he meets with two different students, and they just have conversations over shared interests. Sometimes his mom is there to help support communication. We see as time goes on that as the individuals are getting more comfortable with each other, and the students are getting more comfortable, there are emerging areas where there are overlapping interests, or maybe the student is learning from the person with aphasia say, about sports, for example. We have one group where our friend with aphasia is a huge sports fanatic. He was meeting with two young women in our undergraduate program who knew very little about some of these sports and so he's taught them. It's really fun. Again, they meet at least once a week. We have one individual that at one point was meeting with three separate students three times a week. The friendships that form from these smaller groups are something special. For some of these folks it's intergenerational, for others they are peers. What you see is that the students don't want to give up this opportunity. I have some students who have been meeting with their friend with aphasia for over two years now. They've gone from their undergraduate programs through their graduate programs, and they've just developed a friendship and don't want to let go of it, which I think is phenomenal. This is something that I would like to see open up as chapters across different universities. Students want these interactions so badly and there are so many people with acquired communication disorders that need an outlet, and that would benefit from this safe space to work on their skills to just have fun. It really can be whatever they want it to be. Janet: What a great idea. You've got my brain spinning. And I've been making notes about some clients I've been thinking about who would benefit from exactly what you're saying, just the opportunity to have an interaction and conversation. Wonderful. Lauren, another avenue that you've been interested in is the practice of mindfulness, especially yoga practice. How do you see yoga practice supporting the LPAA philosophy of living well, with aphasia? Lauren: Love this question. I have to backpedal just a little bit to answer it to say, I was never a yogi until I started my doctoral program. If you know me, I'm 5'11". I'm tall and I grew up playing all the tall-person sports and pretty much was of the mindset that if you're not huffing and puffing and soaked in sweat, then it wasn't exercise or it wasn't beneficial. Well, I was wrong. In my doctoral program, I was dealing with imposter syndrome. I'm also a first-generation college student. Being at that level, and with all the different hurdles that a doctoral program offers, I was really feeling that imposter syndrome and anxiety that surrounds it. Somebody suggested starting yoga, and it's what got me out of bed in the morning, and really grounded me to face my day and feel as confident as I could in my skin during that time. After doing it for a few years, I just had this aha moment of, wow, I would love to bring this to the aphasia community. It's helped me with my anxieties and my areas of self-doubt and has just allowed me to also be present. I can only imagine for some folks with aphasia the anxiety that they may have surrounding communication, or just feeling okay with where they are in this part of their journey and that acceptance piece. Then I pushed it off. I said, well, I can't do that now I have to wait until I get tenure, I've got to focus on this very systematic treatment development program. I can't do more things. Then in 2019 when I was an assistant professor, just my first year at UCF, I went to Project Bridge again thank you, Jackie Hinkley. While I was there, there was a small group that consisted of Dr. Amy Dietz and her friend with aphasia, Terry, who were at a table, and they were promoting yoga for aphasia. I was walking around, and I saw that table and I thought it was amazing. I went over there to have a conversation with them. Amy Dietz had just finished a small pilot project looking at methodology of how we make yoga accessible. And so I talked with Amy and I talked with her friend with aphasia, Terry, about their experience, and then more people started coming to that table; Susan Duncan, who is aphasiologist and a speech-language pathologist and a yoga practitioner, and then also a person with aphasia, Chase Rushlow and his mom, Deanna Rushlow. All the whole rest of that conference, we hung together, and started planning out the trajectory of how to bring accessible yoga to people with aphasia and to the aphasia community. Chase had experienced yoga, post stroke, and as a person living with aphasia with his mom, they shared their story about how it brought them together, and how it grounded him, how he found Zen. It was so fruitful being able to have these conversations with people with aphasia, and also their care partners, and them telling us what yoga has done for them. Not only did we all have our own experiences with yoga from myself, Amy and Susan, but then we also were getting this feedback from the rights holders, right from our patient stakeholders. And so this group moved forward. Sorry, I had to backpedal there a little bit. Since that time, I'm so proud of what we have done as a team and what has unfolded. I was very fortunate to meet a yoga therapist named Karen Cornelius here in the Orlando area and together, we've been able to build an accessible adapted virtual yoga program for people with aphasia. It started as kind of this feasibility study with our own aphasia community group here in Orlando, getting feedback from them, figuring out how to make the language accessible, what visuals are helpful? What do people with aphasia want from a yoga practice, were there things that they liked, or things that they didn't like. We've had this really long but very informative process of delivering yoga from a yoga therapy perspective, caring experience, and then figuring out what to spend more time on and how to present things verbally and visually. Now I feel like we have this ongoing, strong, adapted yoga community that we're able to offer. We offer it every Friday at 11am. And we have participants from all over the US. We still have a strong group from Florida, from the Orlando area, but we've got people that participate from California, we've got folks from in the middle of the state, we've got people from Kentucky, we've got people from Pittsburgh, we have people from up north. And we also have a participant from Bermuda. It's amazing to see all of these individuals who would have never met each other otherwise come together so that they can have a yoga practice. For some of these folks, they participated in yoga before their stroke, and then had a really hard time getting back into it afterwards because of the language impairment, the language barrier really. Yoga is a very language heavy practice. The modifications that we've made have been really helpful in making it accessible. But then we've also brought in others that never looked at yoga before and experienced it for the first time and have heard their report that they reap the benefits of it. What we're seeing in both our qualitative research, and also in our quantitative research is that people are reporting reduced stress after participating in at least eight weeks of yoga, better sleep quality, and increased resilience. Some have discussed better pain management, so they feel like their pain, although it's not gone away, that they are able to go about their daily life without pain taking as much in terms of resources from them as it did prior. The biggest thing to I mean that sticks out is people are talking about self-acceptance. Yoga has helped them accept where they are right now in their journey. The last thing I'll say along these lines is there is something so powerful about having individuals come together in this group and there's conversation that happens at the beginning and at the end, just like you would if you walked into a yoga studio. I think it's that they're all working on a common goal, in this hour, and very little of what's being done is focused on communication, the effort is taken away. They're really just sharing a space with each other, enjoying that space, doing something that's making them feel good. And they're not having to think about their impairment. There's something really special with this group. This work has now been funded by Orlando Health, which is our one of our big hospitals in the area. We're working with an interprofessional team and actually bringing yoga therapy into the inpatient rehabilitation program. This has been really neat, because Karen, the yoga therapist, and I are working with an interdisciplinary team of speech-language pathologists, physical therapists, occupational therapists, and recreational therapists. We'll have a group of individuals and all of these different professionals in the same room, and we're getting feedback from the professionals about what they like, what's facilitating this program for them, and what are the barriers. At the end, they will be the ones running this program, and they are very committed to keeping it up and running. We're also of course, getting the feedback from the people with aphasia and other brain injury survivors in this group, as well as their caregivers that are coming in and participating. I think now I can say I've done a good chunk of research in my life, and this area is the most fun and the least amount of work. Everything has happened organically. There has not been a moment where it feels like this really is work, or I don't want to do this. It's all just unfolded so beautifully. I feel so fortunate to be a part of this, I'm so thankful that Project Bridge pushed me into this, in a sense, when I thought I had to put it off for years and years to come. It's been a lot of fun. For our listeners, we have an ongoing yoga program on Friday mornings at 11 am EST, that is run by a yoga therapist who is amazing, and well versed in aphasia. I welcome people to join us. Janet: I am moved by your story, Lauren, both your individual journey through your doctoral program and finding yoga to help your own self, and then taking that into the aphasia community. Several times you've used the phrase, 'your journey through life' or 'your journey of life'. And isn't that true? We're all on a journey, and it changes year to year, or decade to decade, if you will. It's exciting to know that you're finding a way to connect people with aphasia to a larger community that focuses on yoga, for example, rather than focusing on the impairment that they have living with their aphasia. Thank you for that. It sounds like it's a great success, and I hope it will continue to be so good for you. Lauren: Thank you. Janet: Lauren, another area of investigation, you're examining the benefit of motor imagery and home practice, for enhancing treatment outcomes in persons with apraxia of speech. This is a little bit different from yoga and mindfulness. But yet at the same time, it's about what people can do in their own selves, I think to improve their communications and improve their interactions with others. Will you describe this work and your current findings, please? Lauren: Absolutely. And you really did hit the nail on the head because it does overlap a lot. It's different in that we are working on the impairment here, but the motor imagery piece grew out of what I was seeing with yoga. Many of our participants have hemiparesis, for example, or they might have apraxia of speech or more severe aphasia. When they are unable to produce a certain movement, or unable to say a certain mantra, we tell them just to visualize. If you can't move that arm that is fine, or if you can't move it to the extent that you want to that is okay, just imagine that arm moving. Just imagine or hear yourself saying this affirmation. Based on what we were doing with the yoga I started digging a little deeper into the research on motor imagery and mental imagery, and that's where this idea arose. Surprisingly, there hasn't been a whole lot of work using motor imagery for rehabilitation of apraxia of speech. There's been a little bit of work in the area of stuttering, and motor imagery is used significantly in sports medicine, athletic training for professional sports, and musical training, and also rehabilitation of limb and gait, but really very little about speech. And so, I found a hole. My thought was maybe this motor imagery piece is a start, it's something that people can do at home without much support, and maybe it will impact their performance, either that day or in a therapy session a few days later. I wrote a grant and it was funded through the National Institutes of Health. The grant focused on looking at the impact that motor imagery has when combined with behavioral speech treatment. My thought moving forward was that I got my Ph.D. not only because I wanted to know more and wanted to create treatment programs, but I wanted to prove to insurance that healing the brain post stroke, or rehabilitation of speech and language post stroke, is not the same as healing a broken bone. It takes a lot more time. It's ongoing. In my time, I have not seen a change in insurance. In fact, I think it's gotten worse. So my thought into this is we've got to give clinicians and people with communication impairments the opportunity to work more from home. What can they do on their own to bolster the impact of those few treatment settings that they actually are getting, if they are treatment seeking individuals. The idea is, the hope is, that through motor imagery, what we're doing is priming the neural network. Patients can go home with targeted stimuli that they're working on, for example, and just imagine themselves saying it accurately, thinking about how the articulators are moving, visualizing themselves being successful. Hopefully, we're priming those networks. Then when they go into that treatment session, those networks are primed and perhaps we see a boost in performance. The hope, the long-term goal, of this is to build a home practice program that can be accessible to people in the comfort of their homes, easily and free of charge. The speech-language pathologist can also interface with the program to put stimuli into it, for example, so that it can support what they're working on in therapy. We're still in the early phases, but we just completed our first qualitative interview after somebody has completed the whole program, and they really liked it. I thought people were going to be bored with motor imagery because we're not yet allowing them to say anything. In the motor imagery piece, we really want to focus on what does imagery add, but they really enjoyed it. Our first participant, what he said was that at first he didn't like it, he thought it was weird. After we went through practice for a few weeks, he would come into the therapy session and we would do a probe and afterwards if I commented that he did really well on that today, or in the treatment session itself, or if I was seeing a lot of success with certain targets, he would say 'the homework, the homework'. My thought was that he felt like the homework is helping. He was encouraging and felt like it was helping. We've only run a few people through, so right now, it's preliminary findings, but what I'm seeing is a benefit when they are going home and having this opportunity to practice. Even though it's not verbal practice, it's motor imagery, I'm seeing a change when they come into the session. The study itself is funded for three years, and we have the opportunity to provide free therapy for 18 individuals with co-occurring apraxia of speech and aphasia. I'm excited to see what that group data look like, but right now, and with just the conversations that we're having with the folks that are coming through, I feel very optimistic about this program. It will definitely need to grow, I don't want it to be only motor imagery forever. It's a good first step. Janet: That is very exciting to hear. I look forward to reading the results as you have more and more individuals with apraxia of speech move through your program. Lauren, as we draw this interview to a close, I wonder if you have some lessons learned that you would share with our listeners, as well as some Monday morning practices, that is actions that we can take on Monday morning to improve our interactions with persons with the aphasia or apraxia of speech. Lauren: So I think first, and this is reflecting on what I do, I know many individuals out there, whether you are clinically working with the population, or you're doing research, you're in an area where you are giving. We are giving to support a community. The same thing that I tell our caregivers is to do something for you first, that will allow you to continue to give to others. What is something can you identify, something every day. When there's a little bit of something that you can do for yourself that just fuels you to be the best clinician, the best researcher, the best partner, parent, the many hats that people wear, to your community. That may look different for everyone. For some people, maybe it is meditation, for others maybe it's yoga, maybe it's running, maybe it's baking, everybody has their thing, but identify that certain something that gives you the energy and maybe the groundedness to serve your community. One thing we've touched on, and if you're listening to this podcast, you know this, but listen to our friends with aphasia. Their perspectives give us so much more than we could ever pretend to know. I've learned so much from my friends with aphasia, even moving forward and in my research - thinking that I know what people want, talk to them, and then the realization this actually isn't an issue, this other thing is. Seek better understanding, otherwise, we're going up the wrong ladder and putting our efforts in the wrong area. Building community through shared interests, that's what I'm trying to do a bit, and also incorporate student involvement; use your resources. With Mission SPEAK we really are trying to build community through shared interests. It's really neat to see how this unfolds. Even when you have a person with a communication impairment or a person with aphasia, who is maybe 30 years older than the student that they're meeting with, there are shared interests. And it's so neat, what they learn from each other and how this partnership grows, and this friendship grows. Then you also have peers, folks who have acquired communication impairments that are close in age with our students, and that takes on a life of its own as well. Try to match people up based on shared interests, or at least having someone that is really eager to learn. Also being open. Building community through shared interests supports what we've done with yoga. Here are folks that are finding peace and community and enjoying this activity together. It could be anything doesn't have to be yoga. One other is interdisciplinary practices. When we're thinking about our friends with aphasia, not just thinking about the aphasia or stroke, when we're working with our more acute care friends, or those that are still on that rehabilitation trajectory. Stroke Survivors are dealing with more than aphasia, and I think sometimes we can lose sight of that. Making sure that there is an interdisciplinary team or you're offering interdisciplinary supports, asking what else do they need. I find that I've learned so much from my colleagues in physical therapy and occupational therapy. I work closely with an assistive technology professional who has just unlocked for me the world of supports that are out there that help people live well with aphasia, and also with hemiparesis. Supports such as for cooking with hemiparesis, supports for a computer adapted need, supports many things, such as positioning, seating, getting out there and playing sports, again, in an adaptive community. There are so many things that have happened, I think, over the last decade to make things more accessible for people post stroke. Educate yourself on what's out there. Janet: Those are great ideas. Thank you so very much. And thank you, Lauren, again for taking the time to speak with me today about the Tavistock Distinguished Scholar Award, and about your work in aphasia. Lauren: Thank you very much for having me. Janet: You are so welcome. I would also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcasts. For references and resources mentioned in today's show, please see our show notes. They are available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, please email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I am Janet Patterson, and thank you again for your ongoing support of Aphasia Access. Lauren, thank you for being with me today and congratulations on being named a Tavistock Distinguished Scholar on behalf of Aphasia Access and the Tavistock Trust. I look forward to learning about your future accomplishments, and seeing how you help people with aphasia and apraxia of speech on their journey of life. References Madden, E. B., Therrien, M., Bislick, L., Wallace, S. E., Goff-Albritton, R., Vilfort-Garces, A., Constantino, C. & Graven, L. (2023). Caregiving and friendship: Perspectives from care partners of people with aphasia. Topics in Language Disorders, 43(1), 57-75. https://doi.org/10.1097/TLD.0000000000000301 Therrien, M.C., Madden, E.B., Bislick, L. & Wallace, S.E. (2021). Aphasia and friendship: The role and perspectives of Speech-Language Pathologists. American Journal of Speech-Language Pathology, 30(5), 2228-2240. https://doi.org/10.1044/2021_AJSLP-20-00370 Resources Aphasia Recovery Connection (ARC) https://aphasiarecoveryconnection.org Aphasia and Related Conditions Research Lab and Mission SPEAK https://healthprofessions.ucf.edu/communication-sciences-disorders/aphasia-and-related-conditions-research-lab/ Project Bridge Project Bridge - Research Community in Communication Disorders
Grief and loss: leaning into a much-needed discussion in conversation with CeCelia Zorn, Tania Riske, and Nancy Petersen (01:01:23)
Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature three voices, one of a partner of an individual with primary progressive aphasia, CeCelia Zorn, who also happens to be a former professor in the department of nursing at the University of Wisconsin – Eau Claire; along with Tania Riske, an SLP at the Mayo Clinic Health Systems Eau Claire, and Nancy Petersen, a social worker with expertise in grief and bereavement from Ability KC in Kansas City. Each of them have both professional and personal experience and expertise with grief and loss. June is aphasia awareness month, so we wanted to take this opportunity to share the lived experience directly. Today's episode will address grief, death, and loss: leaning into a much-needed discussion. Biosketch: Our first guest, CeCelia Zorn, Ph.D., met her husband Wayne in high school in rural northeastern Wisconsin. Wayne died from the consequences of primary progressive aphasia last August, 2023. Since that time, CeCelia has continued her work as an advocate for families living with primary progressive aphasia and more recently about grief, death, and loss as a care partner. Cecelia brings multiple perspectives to our conversation about grief, death, and loss. She is a registered nurse and a lifelong writer. She has been an award-winning university professor for 32 years. CeCelia reads voraciously, plays pickleball, and is relearning how to play the flute – taking individual lessons, playing in community bands and auditing university music history class. She volunteers at the local free clinic and is an active member of the Board of Directors for Wayne's former memory choir. On a daily basis, CeCelia strives for a life enriched by kindness, joy, perseverance, curiosity, patience, and collaboration. But she will be the first to tell you, "some days are easy but some days you just crash. Yet everyday it counts because I remind myself, life isn't waiting for the storm to pass it's about learning to dance in the rain." Tania Riske, MS, CCC-SLP is a speech-language pathologist at Mayo Health Systems – Eau Claire. She initially entered the speech language pathology field through her volunteer work with the Chippewa Valley Aphasia Group and graduated from the University of Wisconsin – Eau Claire Communication Sciences and Disorders program. Currently, she serves as an adjunct faculty member at UW Eau Claire, teaching undergraduate courses such as anatomy and physiology of the speech and hearing mechanism. Tania continues to enjoy treating patients with aphasia and their families within the LPAA Paradigm. Developing plans of care, counseling individuals' unique lifestyles, goals, interests, and priorities. Tania is an avid trail runner and equestrian. CeCelia, Wayne, and Tania were my guests for Episode 49 – Primary Progressive Aphasia: A conversation with Wayne Zorn, CeCelia Zorn, and Tania Riske. Nancy Petersen, MSW. Nancy grew up just outside Tulsa, OK and has an undergraduate degree in Speech Language Pathology from Oklahoma State University. She received a Master of Social Work from Jane Addams School of Social Work at the University of Illinois at Chicago, where she worked in urban hospitals and neighborhoods. Nancy is currently a Community Liaison for Ability KC, assisting patients as they transition from acute care to an intensive outpatient complex neuro-trauma rehab program. Her job also involves providing conferences and education to the medical and general Kansas City community. In her 30 years in the helping professions, she has learned much working in a variety of areas including nursing homes, hospice care, a suicide hotline, senior home care and case coordination. She has served on both the local and national Board of the Funeral Consumers Alliance providing education and advocacy relating to consumer protections in the funeral industry. Nancy is also involved with the Children's Mercy Hospital Rare Disease Patient Family Advisory Council, as well as the Ethical, Legal, and Social Integration (ELSI) Committee for the CMH Genome Project. Nancy has been married to Jimmy for 24 years and has an 18-year-old son with a rare disease, 21-year-old daughter, a cat, a dog and many wonderful friends. Take aways: Avoidance. We avoid difficult conversations and miss opportunities to engage our clients and their families in important discussions about loss and grief. Culture. There is a culture in the US of avoiding or sugar coating conversations about grief, death, and loss; using euphemisms to describe death. Prolonging. We (as a society) are often guilty of prolonging life at any consequence and failing to consider quality of life. Loss. Loss and grief do not exclusively apply to death and bereavement. They apply, as we know, to identity and loss of a whole host of pieces of our lives and identity, particularly following stroke and aphasia. PPA and degenerative loss. This loss is something we know is going to happen and open conversations about loss may help to open the door to bigger conversations about death and dying. Interview Transcript: Jerry Hoepner: let's just kind of settle into a conversation. I really appreciate having the 3 of you here together. I know you all fairly well, but having the lens of a speech language pathologist, the lens of a social worker, and the lens of someone with the lived experience themselves is just a great way to have a conversation about a complicated and challenging conversation sometimes one that maybe people want to avoid. So, I'm just excited to talk to all of you. I'm going to open it up on the front end with a really broad question. I want to be careful, you know. I don't want to make you relive moments and things like that, but I also know that you are here because you want to be advocates for teaching and conversations about death and dying and grieving, and all of those processes. So, wondering if the 3 of you are willing to share a little bit about your personal background and experiences with grief. CeCelia, go ahead. CeCelia: Yup, yeah, I happy to start. Thanks, Jerry, for kind of pulling us all together. I really appreciate the opportunity to be part of the conversation. The thing that comes to mind when you pose that question is my family history around dying and grief and death and I'm so fortunate to have had that family experience. I think it was sort of a balance between the emotional side of dying and death, and the practical side of dying and death, and our family held both of those at the same time. It wasn't just the emotion, and it wasn't just the practical aspects, but it was sort of, I don't know, running down a river of white water with one foot in each canoe, and I remember specifically, at my dad's death bed. There were 7 of us kids, and we of course, mourned his passing and were extremely emotional about that, and stayed with him 24, 7 for 3 weeks, etc. Etc. And but at the same time we were talking about. Should we have spaghetti or ham at his funeral luncheon? So, sort of the practical aspects of how is this all gonna come together in a few weeks when we knew the funeral was coming? So, for me, that's a strength that has carried throughout my life. And I I just am so appreciative of that. And I can only speak to my experience. Perhaps other families have had similar experiences, or one versus the other, or neither. But I just wanted to sort of throw that out there. That sort of ability to handle both things sort of in the same at the same time, has been a source of strength for me. Jerry Hoepner: Wow! Thanks for sharing that, CeCelia. And I'm not sure that that is the experience of a lot of people that ability to do that. I want to take a step back, and mention something I should have mentioned. CeCelia. You kind of wear a couple of different hats, so you were a nursing faculty member for many, many years you have that holistic care, nursing perspective on grief and death as well, and then you also wear that lived experience hat as well. If I can use that metaphor in dealing with your husband. Wayne's death related to primary progressive aphasia. So just so. Our audience is understanding those perspectives. I think that's important. And to go back to what you just said, everyone has a different experience, and I'm not sure that everyone does process those things in parallel. Jerry Hoepner: Nancy, I'll invite you to share a little bit next. Nancy Petersen: Well, I'd be happy to. So, background is I have a master's in social work from Jane Adams at University of Illinois, at Chicago my experiences over the time figuring out what I wanted to be when I grew up, and what I ended up doing where I worked at a suicide hotline. For 3 years. I then worked in hospice for a number of years, including pediatric hospice while kind of in my life. At the same time my father died when I was 20, very unexpectedly at 52. I have worked in kind of every different version of the helping profession and nursing homes and pediatric settings and am currently working in complex neuro trauma rehab I was on the National Board for the funeral Consumers alliance when all of a sudden, my son was diagnosed with a rare progressive, neurodegenerative disease, 6 years ago and we're dealing with what that means and what that looks like. What that does to a 13-year-old when they get diagnosed with something that will limit his life. And so have kind of truly become aware of the difference between someone who talks about life and things that people need to know and what how things should be in an academic way, and truly have learned what it feels like to live that you know, your parents are important, but kids are different. They hit different. And when you kind of start living that deeply, what I have learned becomes a lot closer to home, it just hits really close to home. So that's kind of my background. I did a lot of I wrote a section for Jerry's book about you know, one of the textbooks about death and dying, and what I believe about it. I'm kind of curious having not read it for a while. How my! Just how the changes in what has happened in my life. And Clark was sick then. So, it's not brand new, but even then kind of the differences of what happens over time when you're living kind of a situation like that. And I just looked at something. I wrote a while back a presentation called Death as a 5-letter word and it has some interesting things in it as well. So, I think the topic of death has no answers. And the talk of bereavement has no answers, and very often people who are bereave, who are bereaved, or who are getting ready to, who are bereaving before the death, want there to be. And I think that's one of the biggest, although obvious. When you stop and think about it, that's one of the biggest issues that you're going to run into families is they want an answer to make it better. And it's very hard to explain to people they have to live it. That's part of the problem, and the issue with grief is that you can't step around it. If you do, you'll find yourself in far worse situation than if you live through it. So, I think for caregivers or those around you. There's a lot more to say about what to do for someone or with someone who's experiencing it. So, I try to look at it from all the different perspectives to see what sometimes nonsense I can spout. That sounds intelligent, because truly it is such an individual, it is so utterly individual. And there aren't right ways and wrong ways. People think there's a good way or a bad way, or they think there's a right way. And what happens is what happens. And the biggest problem is making sure that you know when it's kind of out of hand or when you need external kick assistance. You need to understand how long it lasts. You need to understand what happens in that and that it's okay. So much of what's going to happen that feels difficult or feels odd or feels out of place is normal. And maybe that's our goal is to normalize people's reaction to it is to normalize their own personal journey as not being something. Then you have to compare to anyone else's. Jerry Hoepner: Yeah, that's such an important point. And again, really emphasizes the fact that all 3 of you are experts with multiple lenses. And I guess everyone is at some point in their life. You know you. You bring your personal background to it, your professional background to it, and then your experiences with life and death and grieving, and all of those things. So, really, I mean, I think we're really fortunate to have this conversation with 3 individuals who have such a broad lens, and are able to view death and grieving from multiple lenses like you all are. Yeah, thank you for sharing that. Tania. I'll let you jump in next. If that's okay. Tania Riske: Yeah, that'd be great. Well, as a clinician, I think I really first sort of became interested in and in investing in conversations about grief because I saw a lot of patients who were facing terrible diagnoses and care partners who are trying to figure out how to sort that out and not having the opportunity to do that. Your neurologist was maybe going to be interested in providing analysis and checking in with you every few months, and maybe adjusting your medications. Your primary care provider was keeping an eye on your blood pressure and your cholesterol. And there just really wasn't a person or a provider who was acknowledging that there was going to be partings happening, that this you know, that this might be a diagnosis that was going to lead. Brief or certainly significant life changes. So it wasn't being talked about. It wasn't being supported, and that really started to make me feel like there was a that was a gap that needed to be filled, the conversations that needed to be opened and had and continued, it wasn't just a one and done kind of conversation, using it to be ongoing conversations and support. And as things change, the conversation maybe changes a little bit, and the resources change. So, I became really interested in the role of speech, language, pathologists, and other providers also in supporting brief and just. Incidentally, as this became a bigger part of what I was thinking about and taking up more headspace for me and making me really think about how I was practicing and how it's impacting patients and families. Incidentally, I lost an adult child. So, I have some of my own grief that I'm dealing with as well, and you can hear that coming up me a little bit right now. But it really shapes how I think about grief and how it's impacting families, and what they might need, or what they might want. And when I was hearing Nancy talk about there being no real answers, and gosh! Families want answers so badly and helping them explore through their grief. And what's right for them and supporting that. And when CeCelia talks about that practical versus the emotional standpoint having one foot in each canoe. I don't think that's an experience that a lot of families have. I think that that's such a lovely perspective and strength that you have, CeCelia but I don't think a lot of other families have that. So as a clinician, investing in families and helping them to have those conversations and recognize that there's not right or wrong answers. But the questions are very fair and very valid, and just be able to support that in a way that feels authentic and feels genuine and caring, and not filled with trite comments and superficial responses. And let's move on from this because we've got other things to talk about, I think, is really important. Jerry Hoepner: Yeah, thanks for sharing those perspectives. Tania. And one thing that I want to highlight for this particular podcast is, we're working with individuals with communication impairments who have maybe additional barriers to talking about death and dying. So, I mean beyond the challenges that we have with what that all of us have in everyday conversations about death and dying. That's just an additional layer. From the standpoint of sharing education with them, but also decision making and planning that becomes so much more challenging in that context. Nancy Petersen: Well, and more importantly, it may isolate them even further from those around them who could support them, who were having enough trouble, just having regular conversations with them. And now we need to have a conversation that's frightens them, that they don't know how to do and I will never forget one of my that I just read said that people who are trying to support people need to remember they're not expected to be Yoda like you. You aren't. You don't have to have the answers, and we for some reason think that is such an important thing that if you talk to someone about something difficult. I said. If you know suddenly, if you someone you know, has cancer, you're supposed to be able to talk to them about cancer treatment. I mean, I don't. The people that helped me the most in the most difficult situations in my life have been the ones who said the least and I don't know why that is hard for people to grasp or be okay with. Hmm. I think part of it is that we are really bad at silence in general and we feel like everything has to be filled. And I am one of those people who, when I get anxious, I just talk more so when I'm being silent is a learned skill, and that is something that many of us is skilled. Many of us don't have. Tania Riske: I think you're right on with that, Nancy. It's so hard to be quiet and listen and I think especially many of us who are in clinical or provider fields tend to feel like it is my job and my responsibility to try to fix this or make it better. But that's not true. But, boy, it's that's what we want to do. Nancy Petersen: Right. Even I have put in that situation, and knowing, you know, it's kind of the same thing about having a sick child, I know the right thing to do but I don't. My emotions. I'm not always. I don't always react with my brain. So, you have to have a lot of self-talk to say. Now, remember, you don't have to know everything, and quiet is good, and they know their own answers, and even with a degree in speech, I mean my undergrad in speech, pathology, so I only know enough to be dangerous. But my I mean social work teaches you to let people find their own answers, and it's still so difficult to do in a really serious situation to not want to fix and to not want to help and it's hard to believe that help is less in situations such as serious grief. CeCelia: And maybe it's not necessarily just sort of pure silence, but it might be reframing. Nancy Petersen: Reflection. Yeah, I agree. CeCelia: You know. Help me understand what you're thinking, or help me understand what you're feeling, rather than sort of tolerating the silencing. When this person is done talking. Then I can go on to some real things, but sort of reframing that silence in a new way might be helpful in some situations. Nancy Petersen: Certainly, active listening is/can be good. I mean, it can be very helpful in many situations. What I kept getting was, what can I do? when I was in that situation, all I wanted to say was, if you can't make my dad well, there's nothing you can do, and it almost angered me that people would ask, What can I do? Because there was only one thing I needed done, and nobody could do it. So, you kinda I would much have preferred, and I did prefer my friends, who were very active listeners, or who sat and padded in my leg or my arm, you know, and you also have to kind of figure out. Are they in the middle of the death, like are they? Is the death actively occurring right then, in which case silence might be helpful. But then, when they want to talk about it. When someone wants to really talk which happens inner, you know, it's interspersed in all of that that reflection and active listening and reframing and making sure you understand what they're saying can be, I think, most helpful. Tania Riske: Oftentimes I've really seen my role as inviting the conversation, opening the door and making it a safe space for that conversation. Even if a patient or family isn't ready to have a conversation about grief that either they're experiencing or they're anticipating they may be or they're going to experience in the future. To know that first of all, I'm acknowledging that, and then also really trying to create that safe space with an open door that we can go to that conversation and that this is this is an okay place to start thinking about what might be coming, what we're afraid of. So, I think starting the conversation early is also important. Nancy Petersen: Well, and here's one of the we. I'm sorry, CeCelia, do you wanna. CeCelia: I was just gonna sort of concur with you, Tania, in terms of, in addition to that sort of the idea of repetition and patience that it's not just a one-time shot. Okay, this happened on Tuesday, 3 weeks ago, and now I don't have the space to do that. But sort of the need to repeat that open door, and maybe I wasn't ready 3 weeks ago. But by God, I really need to do this again. So please be patient with me, and please repeat this opportunity. So, the idea of repetition and patience seems important. Nancy Petersen: And one of the differences is, a lot of people don't always have a Tania that they see regularly in life to do this and what the thing that I have seen happen so many times is that the person who so …, we get a lot of rehab and we do what we do. But sometimes we'll get people who have glioblastomas, and they want rehab and I'm not sure the patient wants rehab and that yes, getting stronger is helpful. And yes, that gives them more energy. And maybe they just had a reception, and maybe they really can build up a little bit, but it's so much the families who are in denial that want them to get better, and they'll grasp. But any straw to try to make their need to understand and accept what's happening to put it off just a hair longer. And when I worked in hospice specifically we would walk in. They actually even took the word Hospice off our name tags because families were insistent that we not tell the patient they were dying. What was always most amusing was that the patient always knew they were dying and would ask me not to tell their family they were dying. So, the conversations that weren't getting put off were grief related, and fear of death related so intensely. Both desperate to protect the other member of their family, the other group and we did a lot of trying to get to the elephant in the room trying to get to the thing that everyone knew was happening. But people get there so differently that it's very difficult, as the social worker put in the middle of that pers that situation, to figure out who's ready or what their reactions gonna be. If we decide to talk about this and how to handle that reaction because we would get I mean, we changed our name tags. We got so many families angry that we were supposedly letting their dying loved one in on the little secret they were dying and instead of us saying, It's not a secret. The word. Hospice is not going to come as a great surprise to them. We just took it off. Tania Riske: Wow! That's really interesting. I do see on a routine basis what you're talking about, where families do not want death dying hospice any of those words uttered around their loved ones, and sometimes vice versa, too, but almost always it's families protecting their loved one who is dying. But to take it to that extreme of. We can't even have this on a name Tag, because it's just saying too much angering. Too many people is really fascinating, and I think very telling about just our whole thought process around death dying and grief. Nancy Petersen: Our death, denying culture. What do you possibly mean? Having worked in it, I literally would sit at a table at an exposition. You know, when we're trying to talk to people about Hospice, and people would literally go away from our table and around like Hospice was somehow catching. Tania Riske: Wow. Nancy Petersen: And say, I'm not dying. I don't. Don't talk to me about it, and like literally avoid and it would catch me. So I mean I just I was always amazed at the number of ways people would avoid talking about something. That's one of the very few things you must never. You can't avoid. No matter how far away you walk them from my table. What it does instead is make you ill prepared for when it does come. Hmm, okay. CeCelia: Wonder if we need to reframe the language that we use to describe people's reaction. You know, thinking about the negativity associated with some of the labels. I'm just. I'm just thinking about the word denial and avoidance aren't very positive words in my book. And yet we continue to label people in denial and avoidance. And I wonder if we could think about the meaning of the language, and how that might help people I don't know. Just raising the question. I don't have any answers, but. Nancy Petersen: Well, I think there's a part of me that says, if you soft pedal it, you're not doing them any favors now, that's my belief, and I have been in working with death and dying my whole life. So, I know that I'm not your average person, but I blame society. I blame the way we talk about things in advertisements, the way we talk about things on the news. We don't even use the word die. We don't use the word death. We don't use the word, you know. We come up with all these euphemisms of passed on or lost. I think personally, they are not benefiting us. I don't think so personally softening the language. Now, if I'm dealing with a family that can't handle what I'm not trying to force this sudden societal change down everyone's individual throat. But what I am saying is that in general we probably need to. You know, when you talk in different cultures about death. It's something they talk about constantly. When you look at, look at the native Americans. Death is part of the circle of life. It's what there is. And we talk about. You know, vitamin water like it's gonna be the Fountain of Youth, and we're never gonna have to die if we take enough pills that are vitamins, and we drink this magic water, and we Yoga or Pilates that we suddenly have this option and America is known for I mean, I went and studied Hospice in England, and they were vastly different in how they approach death and how they handled pediatric deaths. Jerry knows not to get me started about that. We literally act in this country. We do not let children die, we will not, no matter how much we know. That's we can't stop it, we will not people die. I saw a 95-year-old woman with advanced Alzheimer's getting a feeding tube put in and I, who did not know where she was in the hospital. She was terrified. She didn't know what was happening. It was a horrible situation, and I thought, well, probably the best thing we need to do is put a lot of food in her that sounds like the best ending for this and it just the whole thing sums up our inability to understand that if we talked about it more we might have a better reaction to it when it was time because when I've been around hundreds of people who were actively dying. They're very comfortable talking about it and they're very. They're anxious to talk about what they want and what's meant things to them and what they want to hear, and I would have family. Say, mama, don't talk like that. I don't need to hear that. I can't hear you talk about you dying right now. Don't talk to me about things like that. We're going to go make dinner, and we're just going to have a great dinner together, and push back on the dying person's desire to speak their truth and their what they wanted to talk about at the end of their life. And that doesn't. That didn't work either. Tania Riske: I agree with that, Nancy, that we are really a society, that life at all costs prolong life at all costs, and I hadn't thought about that before in light of the fact that maybe that is tied into sort of our belief system in our conversations or the conversations and the beliefs that we don't have about death dying and grief. That because we don't talk about it, it's not Ok to talk about it that facilitates that we must prolong life no matter the costs. Not thinking about quality of life but instead, thinking about prolongation of life, and those are 2 very different things. Nancy Petersen: And I see it all the time I was with the family, Father had a massive stroke. Daughters adored him, wanted him at no matter what Dad needed to get better. And so, they were pushing it better, and the dad looked at me with aphasia after a massive stroke. And I'm doing all this talking about our program, and they're so excited. And he looked at me and said, Why. yeah. Tania Riske: There it is! Nancy Petersen: Wasn't long before they let him die. They stopped coming and pushing for all of this, because he knew that the kind of stroke he had had was not going to work well with Rehab, that he had had a massive stroke and did not want to live like that, but his family was absolutely unable to manage that until he finally, after months of coming here and pretending to get better and stronger for them. And that's the other thing is, you're trying not to be mean to the family that loves you so much. They don't want you to die. But you know, let's not even get into the amount of money we're spending in Medicare, keeping people alive who have no, who, if given the choice, would never choose to live like they were living. I guarantee you they would not. And we can get into the ethics of that. When I was in Hospice we had a 36 year old man who had a ventilator and we had a 92 year old woman who was unable to explain on a ventilator who didn't, couldn't talk. The 36-year-old, said, I want to die. I am of... I have no psychiatric illness. I am not. I cannot live on a ventilator. The rest of my life. I do not want this. I've done it for 2 years. I am not living this way. and people were horrified, would have nothing to do with taking this man off of ventilator, but had no issues, taking a woman who couldn't speak off of ventilator because of her age. Now she couldn't tell you if she wanted to die or not. But that was comfortable. But taking a 36-year-old, who could talk and make a conscious choice, was horrifying and I think that for me just summed up the way that we go, that we look at death and handle death, and think we somehow have some obligation to keep people alive or never, or the pain of discussing it needs to be prolonged. I don't know if it's life that needs to be prolonged. I don't. I don't know what that is, but it may be death in this culture is a failure. And it's framed that way in some of the words like lost the battle. Yep, yep, for sure. So, it's we do it like it's war. Jerry Hoepner: How do we open that dialogue, Tania? I know you and I talked about the PLISIT model, and that as an opening for conversations. But what do you think all of you, in terms of how do we open that dialogue? Nancy Petersen: I always. I'll open it with funerals. I don't know why it works sometimes, but funerals are a practical money situation. So, if you talk about funerals in a joking way, or in a kind of a, you know. By the way, we're all here at Thanksgiving. We've never talked about this. What do you want or not want? And if you can start a conversation with something that is less than so, you're going to die sometime. Why don't we talk about that instead, it's when you die. What do you want it to look like? And it feels less threatening. I think in many cases and it can start a conversation in a non, and I know it sounds weird to say funnels are non-threatening, but sort of a practical situation that people are always told to take care of their business before they need it. So, I don't know. I think sometimes jokes or humor, or practicality sometimes are less off putting. Tania Riske: Well, and for me as a clinician. I have to be in a certain place of having built a certain amount of report before we can jump into that, you know. I don't have the sort of built in, automatic family dynamics that you might when you sit down at that Thanksgiving dinner. So, having some rapport, and really knowing a little bit more about the patient or and or their family and the relationships. But for me, I it really requires me to consciously be bold and not use the euphemisms, not just avoid and skirt around, but to really be bold and open. That conversation of first of all, acknowledging that in the case of a degenerative condition, that that is where we are heading, we are ultimately heading toward death and opening that door for conversation, about losses that are anticipated. And whether it's changes in what a person can and can't do physically, cognition, health, opening the door to those conversations and re, and making sure that I revisit that and going back to that PLISIT model where really sort of the first step in that is granting that permission to have the conversations. Maybe it's not today. Maybe it's not in a month. And frankly, with some families and patients, maybe it's never but always being intentional about opening the door and keeping the door open. How does that resonate, CeCelia? When you hear these sides of the conversations where we're thinking about it from that provider standpoint. And you are. You've had the lived experience. How does what we're saying resonate with you. CeCelia: Right. I wonder if the idea of loss isn't just dying in death. In my experience, it was a lot of different loss for 9 years. So maybe framing the conversation around loss for Wayne's loss of speech and loss of cognition and loss of toiling abilities and loss of hygiene skills and how that evolved it's not just dying as loss, but it's a loss of everything over 10 years, and maybe I don't know. Maybe reframing that loss and not in not in terms of denial or avoidance. I still have issue with labeling people in that way. I don't think that fosters an acceptance. So, in addition to that, maybe reframing loss might be I think, was important to me. Nancy Petersen: And I absolutely please don't think that I was speaking to you. I was speaking in general about the denial I, or avoidance of death, as a rule, to someone who is not in a situation of actively managing that or even thinking about it. I was talking in general to people that are out getting freebies off my table at an exhibit hall who don't even wanna start the conversation because it's something that isn't happening to them. The other thing I want to say to you is, there are other losses that you're experiencing, that I talk. I've always talked about the loss of the husband that you had until he got sick, the loss of the ability to travel with him, the loss of conversations that you would have. So it's not just the losses of him, which, of course, you worried for him and those losses, but also to understand what you were losing, what everyone was losing. And I say this to people sometimes when I say grief can happen any time and grief is something that we should look at. We're going through all the time. If you lose a job if you lose, you know your home, you know. I just moved from my big house to this small house that my son could navigate, and there was loss involved in that. Not being a choice I wanted to make, and that being forced upon us, and that being the house, we hope to be in forever. So, people experience losses constantly and I don't think we give that enough thought. We're in America. We just seem to go and go and go. We're on the move forward wherever that is, and we don't. Maybe part of this is that we don't. We're not introspective all the time about loss and about, you know, when I talk to family sometimes, it's they haven't even sort of. They haven't put towards the losses that they've experienced. And those are losses, you know. That's not. Did you lose him when they died? But those are true losses. I once had to do a thing. I was gonna volunteer with Aids patients, and they gave us all these slips of paper with, we had to write down the 5 most important, you know who's the most important person in your life. What's your favorite hobby? And then they would make us take these pieces of paper and choose which piece of paper to remove from our pile, and that was gut wrenching, and all I was doing was wading up a piece of paper, so that just that activity was very hard, and made it so clear what losing parts of your life to a disease or to a situation could cause so please don't believe that I believe people that are in that situation are in denial in that respect, or that we should use that as a negative talk just that I think we live in death denial as a culture with the way we kind of act like. It's not a part of you know. We can show all kinds of medicine on TV. But if you put anything on there about a funeral or someone dying, people push back hard. We just have a problem with it. Jerry Hoepner: Yeah, so kind of related to your example of people walking around your booth to not get to not catch Hospice. Yeah. But the other thing I'm thinking about. Nancy, as you were describing. Some of those losses. I don't think people always recognize them as losses. Just to have a conversation about changes. That you've experienced like. For example, when you said the loss of you know your larger home for a smaller home that your son could navigate. I think some people would recognize that as a change until they really think about. I loved that old house I mean, I loved it, and just opening up that dialogue might be an important piece of that conversation, too. Tania Riske: A conversation that I'm having more often is conversations with patients and families, too, about loss of identity. And I think that ties into the same idea where, if your identity was, you know, I'm gonna I'm gonna live in this house with my healthy family. And you know, we're gonna do these activities. And we're gonna take these trips and and we're going to. And this is who I am and the vision that I have when that vision changes. I think there's a real loss of who am I? What does my future look like? What does this mean? And that I think that loss of identity is a really big, a really big deal, too, that we really need to support. Nancy Petersen: And we see a lot of men. And it's not only men, but we see a lot of men who, if they can't go back to their job. They've identified themselves as the breadwinner, or the a lawyer, or whatever it might be, and just that loss is almost. I mean, they think about it as a kind of death that they suddenly, you know nobody wants to be a burden, so everyone thinks of themselves as that. But when they lose their ability to do the thing that that made them who they were in their mind. We don't talk a lot about that we talk about. Well wouldn't get you. So, security disability. And, you know, like, money's gonna solve that problem. And now you can stay at home and watch TV. You don't like and not go golf anymore with your friends, and probably not be a part of those conversations that all your guys are having at poker, because you're not going anymore. Because you have. You know, you have aphasia. So you are absolutely right. And that's why I think that and why I was big about everybody who has a part of their life, who has a piece of that person, whether it's in rehab. And they're doing speech, pathology, or PT, and they're talking about it should be comfortable with having those harder discussions than you know. How about them chiefs, or whatever it is that you can have. Once well, here, you can have it a lot we win, but you know. But you know what I mean. Like you can. You need to have a conversation that gets a little deeper. Maybe you should feel comfortable having that come. Maybe you could do somebody more good if you were comfortable with that. Jerry Hoepner: Yeah. And I'm still glad you broaden the conversation to thinking about loss, not just as death and bereavement, but thinking about the application to everyone that we're working with in terms of, you know, people living with aphasia regardless of whether that's a degenerative aphasia or whether that is a stroke-based aphasia. There's a tremendous amount of loss and change, and even being able to have a conversation about that change, to be able to say those changes sound a lot like loss. I think that's an important piece of this conversation, too. Tania Riske: Over the years that I knew Wayne and CeCelia. I really had this, I think it was a very unique and awesome experience of seeing a partnership that works so well together to support identity. Even as Wayne went through changes with his primary, progressive aphasia. How they worked together and brought me into those conversations about, how do we continue to support Wayne, but also to support CeCelia as a partner and caregiver? And I think that's a part of a conversation that very often is overlooked by providers kind of circling back to when we first started this conversation. But about how do we support people as they're going through losses that affect their identity, that affect their physical health, their emotional health, their cognitive health? How do we support families, patients, loved ones. And I had the pleasure of just really seeing a phenomenal example of that. And that's not a support system that everyone has. How do we facilitate that. Jerry Hoepner: To me it feels like. It's not a support system until you open that door. Go ahead, CeCelia. CeCelia: I was just listening. Thank you, Tania. Jerry Hoepner: Gotcha, I mean, I feel like in this situation. Tania. You made it possible for some of those conversations to be initiated. I'd be interested in CeCelia's perspective about what it took, what kinds of doors were open for that conversation? Was that something that was initiated from only Tania? Or was it initiated in both directions? What are your thoughts on that. CeCelia: It certainly was Tania and per the other speech therapy colleagues, and the aphasia community and some friends and some family. I think one question that I heard that was or comment, and I heard it several times over the course of the years was being asked like, what are you experiencing, or what are you hearing other people say? That's painful for you and sort of letting that guide the conversation when people said such and such that was really painful. But when people said other things that you might think would be horrible, it wasn't horrible at all. So maybe kind of looking at, or listening, or asking for, What are people telling you? That's painful? I don't know if that sort of addresses your question, Jerry. Jerry Hoepner: Yeah, I think so in terms of initiating those conversations about. you know what's happening in your world. And how are you responding to that it actually made me wonder to what extent was Wayne a part of those conversations. To what extent was he involved in that process, especially early on. CeCelia: Well, Wayne wasn't a real chatty guy, but of course, in my heart of hearts I I you know, being married, and so on for decades. I knew what was painful for him, even though he wasn't able to say it, and I knew what was supportive to him. So, from Wayne's perspective, he would never have. It just wasn't part of him to say, well, this is really a crack of crap sort of a thing, you know. He just wouldn't say that so it hang out. Jerry Hoepner: Was it helpful for him to be there when you were having these conversations with Tania. CeCelia: Oh, absolutely just because of the inclusion of the 3 of us you know, and Tania was so skilled in in pulling out a picture off his iPad or whatever, and it wasn't just a picture of him golfing, but it was digging deeper around his golfing, for example. So, it was a springboard for conversation. That Tania would just do over and over and over again, and of course Wayne saw it as golfing, and the fact that oh, he wasn't really golfing 18 holes anymore. And he wasn't, you know, golfing a 92 or an 88, or whatever. And Tania's questions about so what's a birdie, and what's a bogey? And you know Wayne wanted to be helpful at all that. But of course it opened up a whole door of conversation from Tania's professional position in what was happening with his identity. It ends, it. Jerry Hoepner: Go ahead, Tania. Tania Riske: I was gonna say, thank you for really highlighting that, CeCelia, because that was. I guess how I learned so much about Wayne. So, I felt like I could help to better support his identity. So when I, when we were talking about pictures, that was my favorite, because I could see such a peek into what? Who he was? Which was so much better than if I would have brought in, you know, some pre created or commercial therapy products that told me really nothing about Wayne. So that was really something that was just such a great tool. But tool is such an inadequate word for that. It was just. It worked so well for me to learn about Wayne and for Wayne to be able to school me a little bit, too. Sometimes. CeCelia: And it's just an example, I think, of starting where the person in the family are at in in the pictures. Of course, that was, as you said, tool, or whatever it's called. It was like this is who Wayne is, and this is his life. It's like what's painful for him and for me and for us together. So, it was. It was the foundation that guided the discussion, and not something you know, sort of external, that that was sort of put upon us. If you will. Jerry Hoepner: Maybe this is a good time. I jotted a question down as we were talking from a life participation approach to aphasia. Why is it so important that people have this conversation, or that this is a part of our conversations about loss and grief and death and dying? Why is that such an important piece of the life participation approach. CeCelia: I don't know 1 one aspect that I thought about when you asked that, Jerry. It's of course going through the process, and the process never ends of dying and death. It never ends but it's so. It's sort of the day to day, but it's also sort of the memory of that. Now, when I look back 8 months later, I I those are the good things that I have. Those are the times in the bottle that I will keep forever and ever and ever. So, it's not just. Oh! Wayne was discharged. Wayne died on August 20, fifth, etc., etc. It's like, Oh, that that's been my life. So, it's that time in a bottle idea of, you know, one can go with Jim Croce idea. Jerry Hoepner: Yeah. And I think that alone is powerful, that I think some clinicians might feel like, Oh, don't even touch that time in a bottle, because that's sad when you really frame that time in a bottle as something really positive and meaningful for you. And I think that's a really good reframe on the entire lens, of talking about loss and death, and dying. Tania Riske: I feel like so much of that life participation model is also about honoring identity, honoring wishes. Honoring people as individuals, not as impaired patients who we must fix. But instead, as people with lives and dreams, and some of those dreams have just been shattered or maybe they were shattered years ago. But yet they are. These are people with identities who matter as individuals and really honoring that. And I think that's another reason these conversations are important to honor the fact that yes, there will be death, and we want to do kind of right by you and by your family and loved ones with how we approach that and also recognizing these losses that we've been talking about, now honoring those and not just throwing them away, but doing our best to continue to really celebrate honor, embrace individuals and grief anticipating grief. Bosses is all part of that. Nancy Petersen: So, I just have a question because you're typically talking about people who have a progressive situation so that it. Tania Riske: That's true. That's where my lens is a little bit focused right now. But yeah. Nancy Petersen: And so that would be an I don't want to say obvious, but a wise choice to add to those conversations. I wonder if it, I think it needs to be a conversation that's in any in any sort of situation where there has been loss. Even if it's someone who's trying to rehabilitate from a stroke like we talked about, or someone who doesn't have the path of degenerative situations. But maybe that whole thing about how we have a difficult time with loss or recognizing loss would be beneficial, because we would be in a better position when other losses occurred. In other words, that it would make believing, understanding, discussing, recognizing loss in many situations would help us. What happened with what happens when those final losses start to occur. Because I just don't think we look at Change. We try to put a positive spin on change, and there's nothing wrong with coming up with the good reasons for that change, but that we don't recognize the loss that comes with those changes, you know. Yay, Daddy got a new job in a new city, and we're leaving. And then you hear we're having trouble with the teenager, because you know, I know it's hard for her, and we're changing schools and all of this. But if you don't then recognize per loss, even if to you it seems like a lesser concern than the other things that are going on that you're telling people that those losses don't count, or that that emotion isn't important and I'm just thinking about our speech pathologists and the opportunities that they have, or that opportunities any speech pathologist would have after an event or a health event to make to make it more than just, you know. Let's talk about Bill, and how you know our story today, or whatever it is that they're doing. That's sort of the more traditional speech pathology like you mentioned Tania, the typical structured speech pathology session that they would have. Tania Riske: Nancy, that makes me so happy that you kind of bring that up, because that's something. CeCelia and I have had extensive conversations about and that I get really all worked up and excited about is really the role of speech pathologists in counseling in general, you know. Yeah, maybe it is more at times focused on grief. Maybe it's identity other times. But just that whole idea of there is lots and I think speech pathologists have a huge role in acknowledging that supporting that you know, there's lots of conversation going on right now about what kind of education do we need to provide for a speech pathologist to better enable them to counsel and counsel well, and still staying within our scope of practice. Of course, our very respectful boundaries. Nancy Petersen: Absolutely. I can tell you, I can tell you there's very little even in doctor schooling. Oh, I believe they don't get any. They just nobody gets this. So, I love Jerry's been doing and what you're doing. It's just if you have an hour with a person who's coming out of some sort of crisis or medical situation. Why not use it in a way that's beneficial in a larger scope than just working on your t's, or whatever it might be. Jerry Hoepner: Yeah. And this has just been such a fantastic conversation. And I think you've done a really nice job of tying things together in terms of the life participation approach. I mean, if I just take a step back and kind of summarize our conversation, part of what makes an effective interaction is not avoiding those difficult conversations, but leaning into them, asking the questions, creating that safe space, as Tania said, for the conversation, giving permission to discuss those tricky topics. And then just actively listening, beginning where the family and that that individual are at. So, I hopefully, I've some summarized those things. Well, any missing elements that we should discuss before we bring this great conversation to a close. Nancy Petersen: I just appreciate you guys, I don't know the 3 of you that well, and I'm trying not to. I get very excited. And on my soapbox about things that I've witnessed, and things I think we could do better. So, I just want to apologize if I don't know the kind of the framework. But I certainly learned a lot and appreciate very much what you all shared today. So, thank you for that. Tania Riske: I really enjoyed having conversation about things that are so often really kind of dismissed, or nobody wants to talk about that, Nancy. I really appreciated your frankness. I you know your honesty, and just putting out there the things that we tend to be so uncomfortable about. And I think you're so right that these conversations need to happen. And they need to happen outside of the traditional of this context that we're talking about where people are looking down the barrel at loss but also they need to happen at the Thanksgiving table. And now those they just those conversations are so valuable. But yet we do such a stellar job at not having them. So. Thanks for talking about that. Nancy Petersen: No problem. Thank you. Tania Riske: And, CeCelia, I'm always so appreciative and grateful for your willingness to be so vulnerable and to really put so much out there about your lived experience. CeCelia: Thank you. Jerry Hoepner: Well, I want to thank you all for having this conversation. It feels like we could talk for another day, but we'll bring it to a close, for now. Thank you all, and I look forward to more conversations in the future. Tania Riske: Thanks. Jerry. Nancy Petersen: Bye, Jerry. Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.
The transformative power of mentoring: A conversation with Robin Pollens (00:33:44)
Dr. Janet Patterson: Welcome to this Aphasia Access Aphasia Conversations Podcast, a series of conversations about aphasia, the LPAA model, and aphasia programs that follow this model. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Conversations Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am the host for our episode that will feature Robin Pollens, in which you will hear about the transformative power of mentoring. These Show Notes accompany the conversation with Robin but are not a verbatim transcript. In this episode you will hear about: 1. the presentation of the Aphasia Access, Sandra O. Glista Excellence in Mentoring award to Robin Pollens, 2. stories about mentoring from Robin's career as a speech-language pathologist, and 3. the power of a mentoring relationship to affect the relationship with people whom you mentor, from whom you receive mentoring, and with whom you share mentoring opportunities. I am delighted to be speaking with my dear friend and longtime LPAA colleague, Robin Pollens. Robin is an ASHA certified speech language pathologist and held the positions of adjunct assistant professor in the Department of Speech, Language and Hearing Sciences at Western Michigan University, and clinical supervisor and coordinator in the Aphasia Communication Enhancement program. She also provided clinical speech-language pathology services through home health, and skilled nursing outpatient clinics. In addition to her focus on LPAA, Robin is passionate about graduate education in speech-language pathology, palliative care, interprofessional collaboration and ethics, and has written and lectured nationally and internationally on these topics. In 2023 Robin was awarded the Sandra O. Glista Excellence in Mentoring award from Aphasia Access. 2023 marks the inaugural award given to both Robin and Leora Cherney from the Shirley Ryan Ability Lab in Chicago. The "Sandy" is awarded by Aphasia Access and recognizes an exceptional mentor who has demonstrated unwavering commitment, unparalleled guidance, and profound impact on the professional and personal development of others working in the aphasia community. The award is named in honor of Sandy Glista, one of the founders of Aphasia Access, and is a testament to her enduring legacy, and a reminder of the transformative power of mentorship. Welcome Robin, to this edition of Aphasia Access conversations. Ms. Robin Pollens: Janet, thank you. Thank you so much for all that intro, and it's nice to be here to talk with you today. I want to also right now, thank Aphasia Access for this honor. It was especially meaningful, towards the end of my career, to receive a mentorship award and to hope there's something that I did, or I said, or I wrote over the years that was meaningful to somebody else. I also appreciate that I'm sharing this inaugural award with a wonderful friend, Leora Cherney, and that this award is named for my close friend and collaborative partner, Sandra Glista. It's a real honor to have received it and an honor to talk with you today, Janet. Janet: The feeling is mutual about talking with you, Robin, and the honor is certainly well deserved. Robin, as I mentioned earlier, you were honored with the Sandra O. Glista Excellence in Mentoring award. This award recognizes your commitment to mentoring individuals who are part of the aphasia community, including clinicians, researchers, persons with aphasia, and their care partners, students and others. Through Sandy Glista and this award, we are reminded of the transformative power of mentoring. Robin, how do you envision the value of mentoring to individuals and to the Aphasia community? Robin: When I received this award, it set me on the road to reminiscence. I remember being in, I think, undergrad, studying Speech and Hearing Sciences and I had not yet done any clinical work. I had the opportunity to sit and observe a grad student doing an aphasia assessment with a patient. I was sitting behind this two-way mirror and I'm watching, and my mind is going, "okay, she holds up this card; and then she writes something down; and then she has someone point." That's what my mind was doing. Sitting behind the two-way mirror with me happened to be a visiting professor from Australia named Anne. She turned to me and said, "Look at all of that empathy". And I went, in my mind, "Empathy, what does that have to do with it?" Then I looked through the mirror, and I saw that this grad student was talking softly and looking kindly in her eyes, and kind of patting the client when she got frustrated. I thought, "Oh, I guess that's part of this." So I'm thankful for her (Anne) and I feel like she was my first mentor. She only said one sentence to me, but it set me on a path for what it means to be an SLP. I know that recently, like in the last five years, there's been more discussion in our field about the importance of counseling, and mental health and people with aphasia. When I would be watching a grad student doing therapy, and I'm supervising, sometimes I would see them having what I would call a counseling moment. I would make sure to let them know later, saying perhaps, "I saw when the patient was frustrated, you stopped the task and you talked with them kindly. They told you about some things that were happening, and you gave an empathic comment." This is the way that I think about mentoring, that it's a pathway to learning or growth that comes out of your own experience, and then it goes on to others and recreates. I can go on and on with stories. Janet: Please do tell stories, Robin, because I'm fascinated by stories. I have another question though, Robin, as you continue to tell me your stories, you've led right into the question that's on my mind. People may think of mentoring as one way, such as the experience that you had sitting behind the mirror and watching the graduate student. I see mentoring as an interactive relationship that goes multiple ways. I would love to hear more of your stories and learn about your thoughts about interactive mentorship. Does that make sense to you? Robin: Yes, I do like that framework that you just said, Janet. And when I knew I was going to be doing this discussion with you today, of course, I went online, and I looked up mentoring to see what kind of definitions I might find. I actually found a website that I liked; it was Art of Mentoring. The definition for mentor they used was a coach, a connector, or even a challenger to help their mentees reach their full potential. The mentee will lead the relationship, inviting the mentor into their own inner dialogue to assist in working through, and I really liked that. I think that's ideally how the relationship can work. So, for example, when I was supervising the students in the ACE program, when it got to be in the middle of the semester, we would have a midterm conference and I would always say, "Tell me about your goals for yourself for the rest of this semester, how would you like me to help you?" The answers were so varied, there were some people that were very focused on the clinical learning tasks, they might say something like, I'm having trouble being in the conversation and keeping track of data, or this patient's talking so much, I don't know how to navigate the session to get everyone involved. So, there were clinical skills. Whereas there were other people that would say something like, I get so anxious before the session, I'm so nervous, it takes me a while after I met it to really be able to focus on what's happening. Those are two very different kinds of goals, and I wouldn't have known as their supervisor and mentor for that situation if I hadn't asked, and if they hadn't, let me know. So, I do think that that's important. I also think sometimes we have to seek out our own mentors; that's part of the relationship. In the beginning of my career when I was in my clinical fellowship year, I didn't have one of these strong clinical fellowship, amazing experiences that some people did, I was in a public school, and I had someone who was my supervisor. During that time, I was able to get a position in a different city, working in the hospitals, and another supervisor agreed to keep following me as the supervisor. In the hospital, I had some new patients that had had injuries, and I wasn't sure what to do. My supervisor didn't know anything about that, and I ended up going to a conference in Braintree, Massachusetts, and they were talking about this new thing called Rancho Los Amigos Scale, and I learned about it and brought it back. Sometimes throughout our careers, I think you need to actively seek out a mentor. I think I remember that Aphasia Access started a program where if you wanted to be a mentor, or you have a mentor, you can let them know; I think that's great, because there's always things that go on as your career continues that you may want to get some guidance for. Janet: What I'm hearing you say, Robin, if I can paraphrase your words, is as an individual, a good thing is for one to be open to mentoring opportunities, whether you provide them or acknowledge them, when you see a student or a colleague performing in an empathetic manner, or for your own self seeking out someone to give you assistance. The mentoring could be a large role, such as in a CFY, or a lengthy one such as a two- or three-year relationship, or it could be a very short-term kind of mentorship. This seems to me to be what you're saying, make yourself open to learning and interacting with all sorts of people, because they can have an influence on your life, and presumably, you on theirs as well. Robin: You summarized that great Janet. Yes, and I know that when I was working in home care quite a long time ago, I remember feeling in awe of the family members, the amount of care and the total concern, and they modified their life to care for their loved one. All of a sudden, I remember that feeling, and then fast forward two decades later, when some of my family members had illness, and I was in that role. I was drawing upon what I learned from them, which in turn, I share with our families of the people with aphasia when they're having medical situations. So hopefully, we're just all doing this for each other, throughout our lives. Janet: What's the phrase "together, we're more powerful", that's not it exactly, but our thinking together and the little pieces of information about mentorship or actions about mentorship, that you can recall from 15 or 20 years ago, that can help you today, are just as important as the word someone says to you this afternoon, about how you can be a better clinician, or you can give guidance to someone who is seeking it from you. Exactly. Robin, in your position at Western Michigan University, I know you have mentored numerous students, and we could probably talk for months or years about wonderful stories. Some of them, most of them, I'm sure are successful, but there probably were a few that were less successful mentorship relationships. I know that you've mentored students, what I'm interested in learning from you is have you also mentored persons with aphasia or their care partners? Robin: Yes, and I think there are different ways to mentor somebody with aphasia. I think the piece of it I'm going to pick up on has to do with helping them express their identity, helping them to reach their level. And again, I think for me, the roots of it came actually long before I knew about Life Participation Approach to Aphasia, it wasn't really articulated yet. I remember working in home care with a woman in her 40s. She had her stroke, and she had severe aphasia. But also, all of a sudden, she could no longer work as a crossing guard. That was her work, as a crossing guard for the elementary school. She also was no longer part of her caring circle at church, she was the one that greeted people, and sent get-well cards. I think that one really struck me because I was also on the caring circle at my temple. So, we ended up in therapy focusing on reading and writing, but in the context of being able to write sympathy or get-well cards. She made a dictionary of phrases you could write and things like that. So, fast forward to being in the ACE program, which was created by myself and Sandra Glista, to be a place where goals were addressed, not only the impairment level, but also the participation level, and there's certainly countless examples there I can think of, even from way back in the beginning, because it's in the article that we wrote. There was an organization in our city called Senior Corps, and it's actually in many states still. We trained some of the volunteers to communicate with people with aphasia, and then matched them with some of our people with something they wanted to do. So, one of the people ended up being, with his conversation partner, part of a bowling league, an accessible bowling league. He was young, he'd always been in sports, and he was just sitting home so that was his identity. Another person was matched with a woman who ended up going into a first-grade art class in elementary school once a week and helping out in that art program with her conversation partner. So, these were things that we started saying, we're working on communication, but we're also in some way guiding them towards a meaningful and participatory life. So that's one way, I hope that I've been a mentor for some people with aphasia. Janet: I bet you have been a mentor for a lot of people with aphasia, because I can just visualize you thinking, and tapping into all the information from your former mentors, as you try to find ways to help an individual with aphasia, and his or her care partner or friend, take that step to being able to do whatever it is that they'd like to do, as well as they can possibly do it. I'm glad that you've had all these mentoring opportunities, and I think you're a leader in this field. Robin: Thank you, Janet. I'd also say I think a way to be a mentor with someone with aphasia is also just having an authentic relationship with them, when their communication changes so much and people don't know how to communicate with them, and they don't know how to communicate with others. Being someone that they know they can talk with, they can relate with and laugh with, I think that in and of itself is a valuable way for interacting with somebody who has a sudden change in their communication. Janet: You're talking about accepting someone for who they are, meeting them where they are, and together, you have a relationship that is built on trust, so that that individual would be more willing to accept from you, ideas that you suggest. They may be wacky ideas at the moment, but they certainly work in the long run. That relationship helps you both accept information from each other. I'm really curious, you've told us several stories about mentoring, and we'd love to hear many, many more. Can you think of a favorite mentoring experience you've had in some part of your career? Tell us one about one of those. Robin: Sure, I'll name the one that I just got to go through. That was mentoring the next coordinator of the Aphasia communication Enhancement Program, which is Alison Mezcal. I had the great pleasure to stay for a semester while she was there, and we were able to do all of the coordinating. I already knew that she was a great clinician, she already knew the ACE program, she had been our student 10 years before. But the coordination piece, which is scheduling, and contacting people and planning, and all that would be new. So, we got to do it together over the semester and that was so satisfying to be able to do that. I also literally cleaned out the office and all the files and all the things so that it was ready for the next person. I know many people don't get to leave their position with the opportunity to do that, to directly mentor the next person, and it was a great pleasure. Janet, on the mentoring website, they talked about their logo, and it was two geese flying in, here's what they said, "The geese at the front of the flock improve the aerodynamics to make it easier for the followers to fly; the geese at the back honk to encourage the front geese to keep pushing forward." And they are constantly shifting position, meaning the mentor could be leading from behind or in front, and sometimes just flying alongside. And that's what I had the opportunity to do with Allison. So that was a great pleasure. Janet: That was a great story, Robin. I just imagine the warmth it brought to your heart as you watch this living thing that you and Sandy created many years ago, move on to the next generation. But you know, I thought about something else, too, that this is part of, I think, what might be thoughts that a mentor has to consider. So, you've invested a lot in your ACE program, quite a bit over the years, and your heart and soul are in that, and you have mentored the next generation beautifully. But now you have to step aside. The next generation may have different ideas or may take it in a slightly different way, or may do things that you never even thought about. So, part of what a mentor has to do I would imagine, is also take a deep breath and know that you've done the best job you can. But then step aside and maybe your job now is to be at the back of that flock of geese and keep honking as the program moves forward under a new leader and a new director. Robin: Excellent. Yes, and that's very fun. I have great confidence and hope, and in a couple of weeks Alison and I are meeting for coffee, and I want to sit back and just hear all about the things that she's creating. Janet: That's wonderful. You are indeed a wonderful mentor, Robin, you've been a great mentor to me over the years, sometimes you knew it, sometimes you didn't, as a result of the conversations we've had, and through the different projects that we've done over the years. Let me turn to a slightly different topic now. We've mentioned this a couple of times already, that for many years you worked with Sandy Glista, who is a dear friend to both of us. I believe that being honored through this award, receiving the "Sandy", it must bring warm thoughts of your days working together. Please tell our listeners about how Sandy's friendship and collegiality have influenced you during your career. Robin: I would say in the beginning, which would be the late 1990s, I'd say Sandy initially was a mentor, the kind of mentor that many people spoke about. In this regard, she was a connector, she connected people together. Well, she connected me to you, Janet, when you and myself and Ellen and Glenn did a project years ago on Cybersafety for people with aphasia. I was doing homecare and Sandy was working on a project with keeping elders communicating. She invited me to be involved in this project and start having some Western students intern with me. Then she invited me to do a presentation on a topic she was starting out investigating, interprofessional education, which was a new thing. We were in a college, and we had OT and social work and all the different disciplines together. They did a presentation, I brought in my team, my home care, OT PT, social work team, and we proudly presented a case. It was after that, that she was going to be going on sabbatical and she asked me if I would take her place in working with people with aphasia at Western, and that's when I began actually working at Western, in 2002. Once she came back, we started talking, and creating and planning this new version of an aphasia program and for a couple of decades, we were collaborative partners. We would add to each other, fit to each other, enjoy being together, and have a wonderful creative experience, creating these ideas that we had and seeing them happen. If we did anything such as write something or present something, it was always Sandy Glista and Robin Pollens, or Robin Pollens and Sandy Glista, whether they were even present or not, because the ideas germinated from both of us. So, if you ever have the opportunity to have a work relationship like that, it's a real gift. Janet: Our listeners can hear, I hope, the joy in your voice, as you're talking about that relationship you had with Sandy. I know that was a very special relationship for the two of you. I can see because I'm looking at your face right now, I can see the joy in your face. Recalling the close times and close work that you and Sandy had together, I'm sure that there were some disagreements or seeing things from different perspectives, but your last statement saying that it was a wonderful working relationship and you you'd like to see everyone have that kind of close, creative relationship, is admirable. So, thank you for that insight. Robin. I'm also wondering who were some of the mentors that you and Sandy drew upon? Robin: When Sandy went on sabbatical, she visited national and international aphasia centers, and she brought back the inspiration and the sense of community that she experienced there. I was reading the World Health Organization ICF with its impairment, activity, and participation parameters, and I could envision how we could use this concept to create goals for clients, and to create participation groups where clients could work on their impairment-based goals in the context of an activity of choice. Sandy and I studied relationship centered care, which came out of the Fetzer Institute here in Kalamazoo, and we envisioned a program where family members or care partners were part of the mission of a program. Finally, in our collaboration, we created a sequential way to educate the students through the semester to be able to provide this type of SLP treatment. On the first page of the article we published in 2007, you'll see a long list of people who inspired us. Those were ACE program mentors and as ACE continued, Elizabeth Nadler, Marie Koss-Ryan and Suma Devanga added their creativity supervisors. And I would add that once Aphasia Access was formed, there were many people in Aphasia Access, who became our collaborative mentors. So, thank you to everyone. Janet: Robin, you said something about interprofessional education and interprofessional practice, and it kind of got lost in a sentence, and I'd like to circle back to that and acknowledge that you and Sandy were visionaries in this area. Nobody else was talking about interprofessional practice, or publishing about it, or making it happen. You and Sandy were at the forefront of that. I remember those papers that you wrote, talking about the value that each one of the rehab professionals could bring to the treatment of the patient and how they we can all reinforce the goals for the patient, the various goals. So, we all owe you a debt of thanks for that, as well. Robin: I didn't realize that was that different. I just realized that we had the opportunity since we were at Western and there were the other professionals there, that each semester, we ended up creatively finding ways to coordinate with OT, or bring in a social worker or whatever it was. I have enjoyed watching the growth of this area of interprofessional over the last years and seeing how it's appreciated. Janet: I think it's very important. A previous Aphasia Access Podcast, #84, was with Mary Purdy, who talked about interprofessional collaboration and related a specific story where she and a physical therapist work together to achieve the particular goal of one of their clients. Another podcast, #78, with Michelle Gravier, Albert Mendoza, and Jennifer Sherwood described an interprofessional exercise program. I'm so glad that there is a greater appreciation for interprofessional education and interprofessional practice these days. So, Robin, as we bring this conversation to a close with thoughts, or as I like to call them Monday Morning Practices, do you have ideas that you could share with our listeners, things that they might either think about in the long term, or that they might do on Monday morning when they see their clients? Robin: Well, I almost feel teary as I'm answering this, but I'm going to work through this teariness. I'm thinking about beginnings. And I'm thinking about endings. And so, I'm thinking about making sure that in the beginning, if someone's in the hospital and has new stroke or new aphasia, whatever it is, that you are giving them hope, as described as important in the article way back by Avent, Glista and others, and I can't talk without giving a story, Janet. I'm remembering in homecare, seeing a new patient with severe aphasia, not much talking. The wife left the room while I was in the session, and I noticed a deer's head on the wall. So, I took out a piece of paper and I wrote down some written word choices, you know, baking, gardening, hunting, whatever. I said, "Tell me, I want to learn about you." And he pointed to hunting, so we ended up having the whole conversation using supportive communication strategies and written words. At the end of the almost hour, his wife came in the room, and I said to her, "Oh, I just was hearing about the time that he and his brothers went up hunting up by Lake Michigan, and they had that rainstorm, and then the roof was leaking." She looked at me and said, "How did he tell you that?" So, I took out the piece of paper, and I showed her our conversation, basically, with words and drawings. He had already gone through acute care, and inpatient rehab so I said to her, "Didn't anybody show you this along the way?" And she said, "No." So that's one of the messages that I often like to express - the importance in the beginning of giving the family a method to be able to communicate because that's a way of giving hope. I can also quote another colleague of mine, Marie Koss-Ryan, who did some acute care pretty recently: same thing - she went in the room, new stroke, new severe aphasia. He was trying to read his menu to order breakfast and couldn't do it. So, she took out her iPad, pulled up a page of juices, and said," What kind of juice do you like?" and he pointed to tomato juice. A little while later the tray came and then his wife came for the day visit and she saw the tomato juice, and she burst into tears? Marie asked what was wrong, and she said, "How did somebody know he drinks tomato juice every morning for breakfast." She took out her iPad and showed her how you can pull up pictures. To me that's giving hope through a way to communicate. So that's the piece from the beginning. And I can't help but mention just briefly, to also remember if you are working in palliative care and end of life care, to also show up as a speech-language pathologist that can help people to be able to communicate as best as they can, even if it is at the end of their life. Janet: Those are, are very important points, I think, to start us off to remember the power of communication. And then also to know that there are lots of messages people wish to convey towards the end of their lives. How can we help them convey those messages? Robin, this has been an amazing conversation. And I know that you and I will have many more opportunities to talk to each other. I just wish we had many more days right now to listen to the stories and share the thinking and the insights and the bits of mentorship we have received from each other and from people in our clinical worlds. So, thank you so much for speaking with me today. I am proud to call you my friend and my colleague, and again, congratulations on receiving the Sandra O. Glista Excellence in Mentoring award. I know Robin, that when I asked you to be interviewed for this podcast, you were initially reluctant, as is your style. I'm so glad that you finally agreed because the messages that I'm hearing in our chat today, they're far beyond you and me. They're about the power, the transformative power, of mentoring, no matter who you are, or who you mentor. So, I thank you, and on behalf of Aphasia Access, I want you to know how humbled I am by your long-standing commitment to mentoring. I believe that even though you are retired from Western Michigan University, you have many future mentees that will also be humbled by your long-standing commitment to aphasia, to people with aphasia, to their care partners, and to mentoring. Robin: Thank you, Janet. Thank you very much. And I guess I will say this ended up being a gift that you gave me to be able to do this. I mean, we should all do it for each other to give them a chance to reminisce and tell their story and get perspective and life. So, thank you. Janet: You are more than welcome, Robin. I would also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcasts. For references and resources mentioned in today's show please see our Show Notes. They are available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, please email us at info@aphasiaaccess.org. For Aphasia Access Conversations, and again thanking you Robin Pollens, I am Janet Patterson and I thank you all for your ongoing support of Aphasia Access. To engage in further conversation about mentoring, Robin can be reached at robinpollensslp@gmail.com Reference List APPENDIX B: Rancho Los Amigos Scale-Revised. (2011). Continuum (Minneapolis, Minn.), 17(3 Neurorehabilitation), 646–648. https://doi.org/10.1212/01.CON.0000399079.30556.03 Avent, J., Glista, S., Wallace, S., Jackson, J., Nishioka, J., & Yip, W. (2005). Family information needs about aphasia. Aphasiology, 19(3–5), 365–375. https://doi.org/10.1080/02687030444000813 Glista, S.O. & Pollens, R.D. (2007). Educating clinicians for meaningful, relevant, and purposeful aphasia group therapy. Topics in Language Disorders 27(4), 351-371. https://doi.org/10.1097/01.TLD.0000299889.62358.6f Pollens R. (2003). Home care. Hom Healthcare Nurse, 21(5), 348. https://doi.org/10.1097/00004045-200305000-00015 Pollens, R.D. (2020). Facilitating client ability to communicate in palliative end-of-life care: Impact of speech–language pathologists. Topics in Language Disorders 40(3), 264-277. https://doi.org/10.1097/TLD.0000000000000220 URL The Art of Mentoring https://artofmentoring.net/what-is-mentoring/ Aphasia Communication Enhancement Program, Western Michigan University https://wmich.edu/unifiedclinics/vanriper/aphasia Fetzer Institute https://fetzer.org/ Aphasia Access Podcast Conversation #84 Interprofessional Practice and Interprofessional Education: In Conversation with Mary Purdy https://aphasiaaccess.libsyn.com/interprofessional-practice-and-interprofessional-education-in-conversation-with-mary-purdy Aphasia Access Podcast Conversation #78 A Llama, a Resistance Band, and Neil Diamond Walk Into a Bar - An Interprofessional Exercise Program for Individuals with Aphasia: A Conversation with Michelle Gravier, Albert Mendoza, and Jennifer Sherwood https://aphasiaaccess.libsyn.com/a-llama-a-resistance-band-and-neil-diamond-walk-into-a-bar-an-interprofessional-exercise-program-for-individuals-with-aphasia-a-conversation-with-michelle-gravier-albert-mendoza-and-jennifer-sherwood
Episode #116: Understanding Auditory Comprehension with Janet Patterson (00:39:03)
Interviewer info Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia and other neurogenic communication impairments. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer. In this episode, Lyssa Rome interviews Dr. Janet Patterson about evaluating and treating auditory comprehension deficits for people with aphasia. Guest info Janet Patterson, Ph.D., CCC-SLP, is a Research Speech-Language Pathologist at the VA Northern California Health Care System in Martinez California, where she was formerly the Chief of the Audiology and Speech-Language Pathology Service. Janet has also held leadership positions in the Academy of Neurologic Communication Disorders and Sciences, and ASHA Special Interest Group 2, Neurogenic Communication Disorders. She is an ASHA Fellow.
Episode #115. Next STEPS: In Conversation with Professor Ian Kneebone (00:44:54)
Show Notes - Episode Next STEPS: In conversation with Professor Ian Kneebone Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Professor Ian Kneebone from the University of Sydney Technology. Biosketch: Ian Kneebone Professor and Head of Discipline (Clinical Psychology) at the Graduate School of Health at the University of Technology Sydney. He is a chief investigator at the Aphasia CRE and has led and co-facilitated much of the work on optimizing mental health and wellbeing for individuals with aphasia. His work on illuminating the stepped care model as a guide for clinicians working with individuals with stroke has helped speech-language therapists and other rehabilitation disciplines to better understand their roles in psychological care after stroke and specifically aphasia. He previously joined the Aphasia Access Conversations Podcast with me for Episode #34. We're excited to have Ian joining us again, as so much work has taken place in the area of psychological and psychosocial interventions for individuals with aphasia in the past five years since that previous podcast conversation. Professor Kneebone and his colleagues have been at the center of that work, including developing and evaluating the ASK trial, the Kalmer relaxation program, collaborative goal setting, Reducing Emotional Distress in Stroke (REDS)and low intensity psychotherapeutic interventions, among others. In addition to Professor Kneebone's large-scale investigations about psychological interventions, Ian is a clinician at heart, also very engaged in hands-on clinical work, where he directly collaborates with speech-language pathologists and other disciplines. I'm privileged to discuss these topics with Ian today. Take aways: Need for psychological care for people with aphasia: People with aphasia have higher rates of depression, anxiety, and other psychological needs. People with aphasia are twice as likely to be anxious or depressed as someone with a stroke without aphasia. Stepped care model provides direction: The stepped care model helps us to define scope of practice and where we fit in, based upon our level of training. It also provides guidance for psychological care that all speech-language pathologists/speech-language therapists are trained to implement. Behavioral activation: This is a direct connection to the Life Participation Approach for Aphasia (LPAA). Increasing engagement in personally relevant activities is at the heart of both approaches. Ian discusses where solution-focused brief therapy and acceptance and commitment therapy fit into the stepped care levels: With additional training, good evidence is developing for these approaches. There is a need for ongoing psychological supports in the chronic phase of recovery: Increased mood state is associated with better physical and communication outcomes AND dealing with the physical and communication issues can improve mood state. Shifting to "compensation" can make people with aphasia feel like they're not going to recover further: We need to make sure that we have conversations about those shifts so that people don't misperceive that shift as the end of progress. SLPs/SLTs need to train mental health professionals to use supported communication techniques to support their interactions: SLPs/SLTs may need training on how to teach other disciplines to support communication. People with aphasia should be involved in co-design work to address psychological interventions. From a research perspective, we need to involve people with aphasia and from an intervention standpoint, we need to involve individuals with aphasia. Interview Transcript: Jerry Hoepner: Today, it's my pleasure to introduce Professor Ian Kneebone. In Kneebone, is professor and head of discipline in clinical psychology at the Graduate School of Health at the University of Technology Sydney. He is a chief investigator at the Aphasia care and has led and co-facilitated much of the work on optimizing mental health and wellbeing for individuals with aphasia. His work on eliminating the step care model as a guide for clinicians working with individuals with stroke has helped speech language pathologist and speech language therapist and other rehabilitation disciplines to better understand their roles in psychological care after stroke, and specifically aphasia. He previously joined the Aphasia access conversations podcast with me for episode 34. We're excited to have Ian joining us again. As so much work has been done and taken place in the area of psychological and psychosocial interventions for individuals with aphasia. In the past five years since that previous podcast conversation, Professor Kneebone and his colleagues have been at the center of that work, including developing and evaluating the Ask trial, the calmer relaxation program, the collaborative goal setting, project and low intensity psychotherapeutic interventions among others. In addition to Professor knee bones, large scale in investigations about psychological interventions, Ian is a clinician at heart, also very engaged in hands on clinical work, where he directly collaborates with speech language pathologist and other disciplines. I'm privileged to discuss these topics with Ian today. I'm excited to dig into this conversation. And I'm really interested in talking a little bit about your perspectives about kind of the intersection of speech language pathology, and psycho psychotherapeutic interventions, psychological care, those big topics in general. And I know that in our past conversations, we've discussed a little bit about just the profound need for psychosocial psychological interventions for individuals with aphasia and the kind of the lack of access to care for mental health providers, to individuals with aphasia. So maybe we can start out a little bit by just sharing your thoughts on the role of speech language pathologists in addressing communication-based psychological supports for individuals with aphasia and their families. Ian Kneebone: Well I think the first thing is to say that the whole stroke team should take responsibility for psychosocial issues and challenges, both from a prevention point of view, but also an intervention point of view. Where there's the potential to do so. Particularly with people with aphasia, the speech pathologist, or speech language therapist's role is a real standout one. And we know frequently that this work, because of the communication problems, often falls to Speech, Language Therapists to, you know, by their own admission, feeling unprepared to do it. So, I think there's certainly the will there from speech language therapists to be involved in this work, we just need to provide the right training the right scope of practice, and to get things going. So, this this gap in services is filled. You know, you were talking about the rates of psychosocial issues, but we do know that if you've got a stroke, and you've got a phase, you're afterwards, you're twice as likely as someone with without aphasia after a stroke to be anxious or depressed and have very, very high rates. Even clinical levels of depression are common. I guess it's not surprising anyone who works in the area will know that, but it's still very sobering to restate that statistic. Jerry Hoepner: Yeah, it sure is. Just speaks to the tremendous amount of need and, and obviously, we know the tremendous amount of unmet needs for people with aphasia and their family members as well. Just because of how we're barely scraping the surface of this issue, I think, but making some good progress in those directions, you've done some really foundational work on the Stepped Care Model for stroke and even other populations as well. How can SLPs draw upon that model as a way to help them to understand scope of practice issues, to understand where they fit and kind of guide their interventions? Ian Kneebone: Well, I think Stepped Care has been really useful. And I've gotten great feedback on this not that I invented step care by any means. But certainly, the improving access to psychological therapies model from the UK started this off in mental health. But the opportunity is to convey and allow people to know where they can work and what's appropriate, and when they might need to refer on or co-work with, with another profession. And the Stepped Care Model really does that. So, people are able to say, Well, I'm involved in this group, it's designed to prevent things like depression and anxiety, which are very common, as we just said, and I'm able to learn these skills or apply these practices to improve outcomes and prevent this. But you know, at some point, when these levels of symptoms of such and particularly questions of risk, risk of self-harm, risk of suicide, those sorts of things, when commonly people would refer on to mental health professionals. And I think the unique ability of speech language therapists to provide supportive communication training for mental health practitioners and so on, means that the role goes beyond just prevention, and to actually intervention. But also, to say that the model where people stepped and matched to the level of care they need, means that, you know, there is a scope of practice beyond prevention for speech language therapists, and that's those therapists who choose to train in psychological practices and psychotherapies. So, we do know, for instance, there's some strong work going on at the City University in London, where they're looking at training Speech, Language Therapists in a particular sort of Solution Focused therapy, which is very well regarded as an evidence base. And that's provided by speech language therapists, with the right training and the right background, to develop the competencies and know how to manage risks, and so on. So, the Step Care Model allows people to see where they're at in terms of their scope of practice, when they're on or when, if they want to, what skills they might need to practice at a at a high level. Jerry Hoepner: Yeah, that's really well, well explained. And that's actually a really nice segue into my next question, because I know, the Step Care Model that you presented back in 2016 identifies some specific psychological interventions. So, you talk about motivational interviewing, cognitive behavioral therapy and a number of other approaches. I'm just interested is their kind of a plan in mind or a process in mind that will help to identify other interventions and kind of where they fall to give mental health professionals, speech language pathologists, and other disciplines, kind of a sense of where those other interventions fall. So, things like dialectical therapy and so forth? Ian Kneebone: Well, there's a range of therapies that we've found useful for people with, with mental health problems, and obviously, it's the application of those to people with aphasia that's the point of interest. And we do now have very promising work going on cognitive behavior therapy for people with aphasia, we've just completed a case series, which is just been accepted by Neuropsychological Rehabilitation, looking at modified CBT for people with aphasia, which is really exciting. We're doing stuff on behavioral activation, which is very promising for people with aphasia and relaxation therapy, we've just completed some case series work, looking at that. And that's really exciting because that was co-designed by people with aphasia, and then then then launched based on that very solid foundation. The more interesting or the very interesting work is being done on some of these, what we call third wave Cognitive Behavior therapies, which are things like Dialectical Behavior Therapy and Acceptance and Commitment Therapy, for instance. And a lot of that's been leveraged off the brain, the general brain injury literature now where people like Dana Wong, who's from LaTrobe University here has done some seminal work looking at modifying for people with cognitive and communication problems, Acceptance and Commitment Therapy. Reg Morris from Plymouth University in the UK has done some great founding to work with some of his PhD students and looking at Acceptance and Commitment Therapy for both carers and people with aphasia after stroke, you did mention before, it's easy to focus on, of course, the client or the patient with aphasia, but you know, the need goes beyond that, because the ripple effect of the, of the impact of the communication and, you know, the disabilities that commonly come with stroke as well goes to a person's social circle and familial circle, and including those people in therapy is, is an important part of the investigation as well. Absolutely. Jerry Hoepner: It's so common, we have partners who are socially isolated as well, just because they're the primary communication partner for that individual with aphasia, and whatever restrictions to participation, they feel, right, it's just all connected. Ian Kneebone: When I teach my clinical students, I often say like, you no, you've got an identified person who's been referred to you, but you've got to realize that nearby, there's going to be someone who's just as anxious and depressed, if not more so. But at that point, and that we do know, there's a reciprocity between anxiety and depression, that person with aphasia, and, and a significant care person. So, it's really important to include those people in therapy if you can, but being mindful of not including it in a way that adds to the significant burden and challenges. So it's got to be done in a really appropriate way without asking people for things that they're not able to provide, because they're just coping with things like role changes, financial issues, and you know, the loss of the person as the relationship they had with them on account of communication. Jerry Hoepner: Absolutely. And, as you were talking about that, it makes me think about how that changes over time as well. So those initial kind of burdens, that might be a tough time for them to engage in those kinds of conversations, because like you said, they're just trying to keep their head above water and trying to make it through everything else, all those other role changes and additional roles they've taken on. But I wonder about your thoughts in the chronic phase as, as both the individual with aphasia and their partners start to make those adjustments, if maybe that's an opportunity for some of those interventions. Ian Kneebone: Those often talk about that that phase is life after stroke. And that's usually about 12 months later, when we know pretty much how people's rehabilitation has proceeded. And people are pretty much aware of how they will be functioning on into the future. And as you say, I think there's a there's a sort of a crisis point when someone's having their stroke. And there's that kind of acute phase where people are adjusting, but the important thing at that time, people think well, my personal, my personal looking after, or I'm going to get better and so on. But it's when that realization happens. So, we find these sorts of emotional difficulties can occur early or later after, after a stroke, with or without aphasia, of course, and that, you know, it's important that people's needs be met, on into the future, the recovery phase in life after stroke. Because many people when we've done this in our qualitative interviewing and surveys by places like the Stroke Association, UK, that people often the 12 months, a lot of the care, a lot of the treatment or drops away. And then as we were talking about the feeling isolated, and well, this is all I'm going to get, and so on, people are really challenged at that time, and we need to be able to provide, you know, supports and therapies on into the future for those individuals. You know, depression, anxiety content, you know, is pretty consistent at any time after a stroke. And when we're really bad at predicting, I think, you know, who's going to be affected at what state so we're going to be going to be vigilant, and we have to be, you know, particularly vigilant, I guess, I'm probably preaching to the converted with your audience here, but that we know that people are anxious and depressed out of stroke effects, their functional outcomes, and including the communication outcomes and so on, you know, if somewhere, you know, I remember seeing someone with a with a swallowing problem and the Speech Language Service was very concerned about this. And they had a day of good mood, and they came to a day hospital party, and now reading these party pies like there was no tomorrow's person's actual ability to swallow. Now I'm not saying it wasn't about risk was altered by their mood state and that that goes across the continuum of the areas which speech language therapists are involved with. So really important for outcomes and not just mood outcomes. You know, being depressed or anxious is distressing in itself. But you know, the ability to make a difference to people's physical and communicaiton outcomes of addressing psychological issues is considerable. Jerry Hoepner: Yeah, I like the way that you describe that as being so intertwined and interconnected. So, you can't just separate those pieces out and say, I'm dealing with the physiological issues right now. Now I'm dealing with the psychological or the psychosocial and emotional issues, because there's so interconnected and, and I want to go back to a point you made earlier, which is, so often people early on have that sense of I'm going to be this, it's, I'm not going down the road a year, I'm not going to be one of those people who needs this. So, I'm just going to, you know, nose to the grindstone kind of work through this right now. But it can pop its head up anywhere in that recovery. And, and I think there's some reality that sets in once some of those initial supports are taken away. Ian Kneebone: I mean, one of the biggest challenges I've faced when I've been in in stroke rehabilitation, and working with Speech, Language Therapists is around when people are using compensation, being asked to use compensation, as a strategy for communication and kind of dealing with all that mean, I'm not going to get any better with my speech. And, and, and, you know, people get really angry, and it's their frustration, and so on, and there's, you know, therapists going to be blamed for it. So, there's a real, real strategy there for dealing with that, and, you know, working with people to retain, retain hope. But you know, being pragmatic with well, you're leaving the hospital, now, you're going to have to communicate there in the community, you want to get out and do some of the things or at least some of the things you used to then how are we going to do this? And how are we going to approach it? But yeah, it can be quite a crisis point. Jerry Hoepner: And I Yeah, and I think part of our role as a speech language therapist in that context, is to communicate that really well in a way that doesn't set them up for oh, you're switching over to compensatory approaches that you that means you think that I can no longer improve, in terms of my abilities, but rather to convey this is one of several things that we want you to do to be more successful, and to continue to engage. That's, I mean, that's kind of for speech language pathologists who are supposed to be good at communicating those things. We don't always do a very good job of communicating those things. I was thinking a little bit about Deborah Hersch's work on transitions and discharges and how poorly we do and saying, This is what's going to happen. We've got these limitations of the system. But this is the plan, this is not something that you did wrong, this is something that we just need to work through. And when we, I think when we feel discomfort about conveying things like it's time to transition home, or it's time to transition out of therapy, that we don't do a very good job of explaining those things. Ian Kneebone: Well, I've certainly worked with a lot of members of stroke teams, allied health and speech pathologists, but one of the one of the difficulties, of course, is when we feel uncomfortable about doing it, and it's not the news, people want to hear we kind of beat around the bush. And then when people aren't clear, and you've got people with cognitive and communication problems, it's kind of a perfect storm for it to go amiss. Yeah. So, I think one of the messages I give out is people think if they just communicate it really well, it'll all be fine, and it'll go work fantastically, and people will transition really smoothly. But it's a bit of a wakeup call to realize, however well you put it, this is sometimes news people don't want to hear, and that there's going to be a reaction to that. And just to appreciate that it's not necessarily your fault. But there's the reaction that is it is people becoming aware of limitations going into the future, not the not the recovery they wanted, but the recovery they've got and supporting someone through that is a challenge when sometimes, you know, you're the target of dissatisfaction. Jerry Hoepner: Right? No, that's such an important point. Just being cautious of that as well. Because certainly, certainly that's an important thing to consider. I'm interested in the process of interprofessional collaboration with mental health professionals with psychotherapists. What are your thoughts on the best way to approach a collaboration or setting up a collaboration with a mental health provider rather than an "oh, this person's got needs beyond what I can provide? Take them off my hands." Ian Kneebone: It's just so essential. One of the struggles we've had is that you know many people in my own profession, which is clinical psychology will say, well that this person can't communicate, I can't provide them with therapy. And that's so disappointing because we know if we modify them, we can do that. But certainly, my clinical experience in collaboration is that, you know, working closely with a speech language therapist about the best ways to communicate with someone they've, you know, very thoroughly assessed, is really useful in allowing me to learn and, you know, I work in session with, with therapists, as well as you know, gaining assessments and information and talking to them about that before it. And really importantly, there's a lot of in the research we're doing about collaborating, particularly with collaborating, particularly with speech language therapists, to be able to do those sorts of prevention work and, and therapies we've, we've discussed. And that's been such a joy working with Amanda Lakute, and some other people on that work, and Miranda Rose's team in looking at optimizing mental health and wellbeing in designing, for instance, Jas Sekhon's work, we know, on teaching Speech, Language Therapists, you know, counseling skills, so that they feel competent to support people that first step on the ladder, but also dealing with how speech language therapists can obtain the skills. And also really importantly, this is bringing onboard people with aphasia, to the co-design work, to design things that we know will be effective with them rather. So, we're not doing things to people, we're doing things with people and looking at the best way of designing our interventions. And not just our research, but our clinical interventions, so that they translate well into the different environments, healthcare environments that we work in. Jerry Hoepner: Absolutely, and kind of three really important points for a speech language pathologist, one, having that training to feel more confident and comfortable with actually carrying out those level one, psychological interventions, but also having training on how to teach mental health professionals how to interact. So, training those communication support strategies is a big part of our role. And if there should be something that we're comfortable with, we should be comfortable as speech language pathologist with training others on how to use those communication supports and Ian Kneebone: Jas of course is a speech language therapist, Jas and she has got such a great course and such a nice way of delivering that in the speech, language therapy world that it's, it's so nice, and then people say, well, Ian, can't you go and teach us in counseling and like, you know, I'm happy to provide counseling training and different psychotherapies. But, you know, the role model that people like Jas provides in saying, well, this leads, not only can Speech Language Therapists use these therapies I can try and others in them because, but you also know, it's a competency within, within the scope of, of every practitioner really. Yeah, Jerry Hoepner: absolutely. And, and I think sometimes we forget about that piece, kind of think it's a given that we're going to be able to train other professionals, but I think, also, there's a little bit of that uncertainty, when you're working with someone else about expertise and roles and territory and all of those things you might kind of back off in terms of providing the thing that you are the very, you know, what is your kind of bread and butter, your biggest strength in terms of teaching those things. So, I agree, Jas is fantastic, and the work that she's done in that area has been just so helpful and moving us forward from an educational standpoint. Ian Kneebone: I guess as a psychologist, I kind of assumed a lot of that work would be the net training was available in courses but as we know, from the surveys and so on, but it has been a bit hit and miss despite the demands and like guidelines, like the Royal College in, in the UK, for people to have those roles, and then it's kind of I know, it's hard to fit everything into the into courses, because there's so much new material on different ways of intervening and assessing, but it's such a core skill that it's good to see that those who may have missed it on the way through that they're released post, you know, these master courses that provide people with to fill in that gap. Jerry Hoepner: Agreed. And again, there's a lot of a lot of training that still needs to happen yet and a lot more changes to happen in the graduate student training programs for speech language pathologists as well. Ian Kneebone: When I'm talking to you from Australia, of course, and we're no exception here despite you know the leading lights that we have in this country for speech pathology and trading and communication and counseling skills for people with aphasia we're still working on it here and I know from your surveys, that's still a challenge in the US as well. So, it's a piece of work in progress. Jerry Hoepner: Yeah, it definitely is. At least there's some awareness of it. And we're starting to make a little bit of ground, I think in terms of awareness. And definitely when we have international programs for training, speech language pathologists and speech language therapists from a counseling standpoint, but also for working together collaborating on research internationally, I think that bodes well, for our future, I think we're moving in the right direction. I want to return.. Oh, go ahead. Ian Kneebone: No, no, I'm just agreeing with you. So Oh, Jerry Hoepner: Oh gotcha. I want to return to the other point that you made about codesign, with individuals with aphasia, involved in that process. And I might have you talk a little bit about the relaxation program that you co designed the calmer program and kind of how that was set up. And what you've learned from that? Ian Kneebone: Well, we pretty much it's run by Rebecca El-Helou, who's a PhD about the completed a PhD with me, and she's done a range of work, including the Kalmer project, which is part of what we call REDS, which was Reducing Emotional Distress in Stroke program. And we just thought, like, you know, relaxation, it's, it's one of these things that we know works with the general population really well. And, but it's not offered to people after stroke generally, or wouldn't necessarily people with aphasia after stroke. And so one of the things we wanted to do by that is, you know, start developing the evidence base, and we thought, you know, really, there are all these great relaxation programs out there, but will they work with people with aphasia, I mean, the advantages, of course, they can be very communication life, because of the nature of the interventions, you know, which is about, you know, focusing attention, reducing autonomic arousal, using breathing and so forth. So, they can be very nonverbal. So, with you, this is eminently suited, and it's also something that could be online, it can be on your phone, right. And it's such a great thing in terms of accessibility. So we work with people with aphasia, because we thought like a lot of, despite the low level of communication required, that it may not suit everybody, we weren't going to assume that people with aphasia would, would take to it necessarily, and we're so pleased that we got a group I think about 10 or 11, people who were involved with us in looking and going through the, the sort of standardized programs, and then looking at how we could reduce down the communication, and how we could also, you know, just make it user friendly, and whether people needed to care or not to support them in, in getting them online to do it. And just really tightening up something and tailoring it to people with aphasia. So, we've got about two levels of communication, for instance, which people can dial up depending on their needs. And, you know, and while I say we will talk with people with aphasia, we also of course, include speech language therapists and uh Brooke Ryan, you may have heard her doing her work, she's out in western Australia at Curtin University now doing a great job in, in looking at psychosocial work with people with Aphasia out there. And, you know, certainly it was gone, guided by all the current guidelines on supporting people with aphasia, not only to do the relaxation training, but to communicate their views on the relaxation training and how we might modify it to be more appropriate. So that was great. And we also have recently done behavioral activation study, there's just been a publication in Aphasiology about behavioral activation, which is an intervention, which, at its simplest, is a getting people re engaged with their environment, doing things that they enjoy that they've got mastery over, and they value. And also looking at how it can produce an online program that would support people once again, with or without a carer, to undertake that in a really accessible way assessing accessible communicatively but also because it's online, it's available at the time of your own choosing. And we're really lucky we may not be known as well internationally is in Australia, but we had a lot of work from the Black Dog Institute here, which is developed a lot of online programs. So, we also benefited from their huge expertise in this area, in, in developing something that we hope is going to be really great for people with aphasia and, you know, just get the resource out there. I mean, some of the work we've done is trying to get, you know, health services to be out able to offer treatments but you know, getting clinicians with the time. And you know, getting resources to do that is a real challenge. So, you know, we've got to go with where people may be able to access things themselves through Stroke Association, stroke, foundations, those sorts of things, where possible, so that we can get things out there and kind of like, circumvent all the problems of resourcing in the health community, which, you know, we've got a very different approaches to healthcare in the US and Australia, but the same, the same struggle in trying to get resources to people. And so, we're just looking across the board and how we can do that in this online stuff, particularly with the assistance of real experts, like Black Dog has been a great opportunity here. And we're just like, inevitably looking for funding for the next stage where we can roll it out and provide an evidence base to how useful this might be to people with aphasia after stroke. Jerry Hoepner: I think that's so useful. And I want to kind of make the connection between behavioral activation and the Life Participation Approach to Aphasia interventions that Aphasia Access stands for. And that's just such an important part of everything that we do from a life participation approach is increasing that participation, finding ways to get people reengaged in authentic, meaningful things that they care about. So, I want to make that connection. And the way that that might look for individuals could be part of a community group, it could be an aphasia camp like we offer, and I know that Linda Worrall's group started at a camp in Australia a couple of years ago as well. So they've got a couple under their belt, or, and I think I like this extension into the accessible online format that can reach as many people as possible, even if that's like the way that gets them into the loop, because I think it's hard initially to, to invest in going someplace or becoming a part of a group, things like that. But certainly, there's something to be said about once you're in and once you have that success that comes with having the right supports and having peers who understand you, then it's a little bit easier to take that next step, I think, Ian Kneebone: Oh, absolutely. And like the across this kind of leisure rehabilitation is something our occupational therapies, therapists colleagues talk about, and the behaviors talk about environment enrichment and so on. And, you know, battle activations, all in that ballpark, and really important for people, as you say, it's certainly part of, you know, Miranda Rose and her team are doing work on community aphasia groups, which are kind of exciting, because they're led by people with aphasia, once again, because of the resources, issues that happens with, you know, trying to fund these sorts of activities. And, you know, there's, that's certainly an important part, and also meeting in the group, as you know, is a valuable, enjoyable experience, both in terms of the support from right from people, you know, looking at what other people are doing, and getting engaged with that, but also, you know, being on a similar journey, and the support that that can give to other people's is, is really valuable, I think, is as part of the process that leads to the positive experiences from those groups. Jerry Hoepner: Absolutely. And I, and I hope our listeners I got pretty savvy listeners, I hope they pick up on that connection as an important way to return to those meaningful activities and to have a positive effect on mood and other psychological domains. Ian Knebone: Well, watch this space because the works, you know, the initial works being done, but they're rolling it out in Australia, where they've just got some, some country-type areas involved in offering this training to people. So they've developed some really comprehensive training things for the materials for the people, the professionals that support this program, but also for the people with aphasia who lead the groups. There's a PhD should Kathryn Pettigrove, who, who you should get a podcast on, she's just amazing and excited about this work, and you may have seen her in the US recently, but such talks with such enthusiasm about it. So, I would recommend that to you and your listeners. And as the evidence comes out, and it's going to be a great model, I think for helping people to help themselves. Really. Jerry Hoepner: Absolutely. And you're right, we definitely need to get her on this podcast. I'll write that down as soon as we're done, make sure that we follow up with that terrific point. (See episode 86) Episode #86: Making Aphasia Groups Work Ian Kneebone: And she's just so enthusiastic, new energy coming into the, into this area, not that there's a lack of energy, but it's just nice to see that, you know, a few people hanging on the baton. Jerry Hoepner: Absolutely. Yeah. It's great to great to spread that out. Because there's so much to do. There's no no lack of things to do in this area, for sure. I'm interested in your thoughts. You talked a little bit about Jas Sekhon, but your perspectives on training, both future speech language pathologists who are in their training programs and existing speech language therapists pathologist who are already working clinically in seeking continuing education. Can you talk about some of the keys from your perspective to making that education successful? Ian Kneebone: The first step is, you know, there's still a little bit of work in saying this, you know, convincing people this is part of their role, because some people will, will think, Well, no, I just hand this over to the psychologists that I you know, I don't think we can, we can accept that but, but moving forward. With that, it's really integrating, you know, the right, you know, say step one type interventions like problem solving, behavioral activation, relaxation therapies, and so on, right in into training courses, because these, these are things that, you know, people say, what's a psychological therapy? How am I going to do that? Well, it because it's psychological therapy, it doesn't have to be done by a psychologist is the first point. And a lot of it's kind of manualized and fairly intuitive to professionals. And many people come and say, you know, problem solving, and I've been dealing with all these challenges in my life already. And this just makes such sense. I wish I'd kind of it just, I should have known this already. Because, you know, I'm a slight person, I've got a master's degree in speech, and language therapy. But you know, it's so useful to me as well, and handing over to my clients is just really great. I mean, we do know, there's some work that's been done in the UK looking about Peter Knapp and his colleagues at looking at problem solving as a prevention and, you know, really good RCT results on how that prevents, you know, psychiatric psychological symptoms after stroke. Jerry Hoepner: Absolutely. Ian Kneebone: So, I think it's just rolling out and getting people to be to get over their concerns about and Jazz Jazz program. If you would, then that's, you know, specific counseling skills, but also then add some of these other strategies in. And we've got some experience in doing that recently. It's with step care, Carolyn Baker, who's at Monash University here in Melbourne, has been doing some work with with both online and offline online because of COVID in rolling out these therapies with allied health practitioners, including psychologists, but also Speech, Language Therapists, and being able to do that, and the main thing is just the kind of the structural issues in, you know, adding to people's workload, and allowing the system to support the investment that will, you know, lead, as we say, not just to people coping better with things but also improve, you know, the functional outcomes after stroke. So, while that's been a bit of a mixed feast, in terms of, you know, outcomes, because it's just been so hard to get these systems to take on board the training and get, get the people through these very straightforward psychological interventions that we know will almost certainly benefit people. But we're doing that, as I say, a two-pronged approach, we're looking at the self-help co-design work that can go online and so on and be accessible that way. And also trying to, you know, train every day, healthcare workers in being able to provide these to people with aphasia. Jerry Hoepner: Absolutely, and when you say, fitting in to people's schedule, or their workload, I mean, I just think that goes both ways, because not addressing these things really limit your outcomes in terms of, kind of, like you said, the communication outcomes are going to improve as those psychosocial outcomes begin to improve. Ian Kneebone: You know, it's short sighted not to make this investment. But you know, doesn't mean it'll net. And so, you know, the logic doesn't necessarily follow, right. In terms of what happens with healthcare resources. And the other thing is, I guess, we're talking about all what suspects with therapists, fleet Language Therapists role is really important that not to throw the baby out with the bathwater is that, you know, like, if someone's communication can improve their depression and anxiety will improve as well. So, you know, as I often say, when I'm talking to training other allied health people, you know, we've all you know, you've all abandoned the session because someone said or stressed or upset and so on. But if you keep on doing that, something's got to change. You can either refer them on or do some collaborative work with somebody, but not, you know, not stopped doing the OT or the physio or speech language therapy, because you know, those things have to come along with as you were saying earlier, they're all joined up. Jerry Hoepner: Absolutely, no, that's a, that's a really great point. And they all have to happen simultaneously to be effective, for sure. Ian earlier, you were talking about Carolyn Baker's work, her recent work, and I'm really interested in the low intensity psychotherapeutic interventions from the eDelphi study. Just wondering about kind of your thoughts on what the place is for those you mentioned occupational therapist, physiotherapist, speech language therapist. Ian Kneebone: This is Carolyn's most recent work, which is the last data we kept it in the middle of this year has been rolling out training to people, you know medical nursing, speech language therapists and also psychologists in kind of first level step care for people with stroke. So, people were enrolled in the program, and some was telehealth some was not. And they would then choose one of three therapies that they thought might suit them best. And that would be problem solving behavioral activation or relaxation therapy, and then they'd have seven sessions of therapy with that. So these were people who weren't necessarily psychological therapists, although some were providing, providing these sessions within a current health system that's operating day to day with the practitioners from the current health system, rather than you know, someone coming in and doing a great RCT. But then the resources disappear, and you go away, no matter what you prove, one way or the other. And that's been a real eye opener, I mean, that there were major challenges when we started that because of COVID, because so many healthcare workers, as I'm sure there were in the, in the US were, were redirected to other tasks to do with the epidemic. But we've soldiered on, and got that it's a really great learning experience to see. See how that went, how it was rolled out. And we've got one at a time and qualitative evidence that we're going through, it's starting to sift through at the moment to look at what we can really learn from that project about how we do this going forward. I mean, I do not at the moment, it's just that that redirection of resources, particularly under COVID, was so difficult. And that was perhaps a unique time. But the resources, as I was saying earlier, are always under scrutiny and precious. So, right. It's about I think, partly getting the evidence base and so on. So we were talking about relaxation therapy recently. And I've got the irony of people saying, well, you know, you put it in a grant application to do to demonstrate the treatment efficacy, and people said, well, it's relaxation therapy, why wouldn't work? Of course it will work. And then, and then the people say, well, we can't put it in policy, because there's no evidence base. So you kind of you know, it even the same, the in the same grant round. Yeah. And so we're just doing it anyway, we're doing it with PhD students, we're doing it with, you know, startup resources that Miranda Rose in the Center of Research Excellence in Aphasia Rehabilitation in Melbourne have got hold of for us. And we're going to demonstrate the usefulness. So, people will put it in their guidelines and so on. And then the UK National Stroke guidelines, say all this great stuff about some relaxation training, we do the same, but there isn't sufficient, not sufficient numbers, significantly power to demonstrate efficacy and so on. I'm just really grateful they mentioned some of Vaour work. But then I kind of have well, yes, but and, you know, that means it's not rolled out. I used to work in a stroke rehabilitation word in Vatum, in the UK, and we had a number of Allied Health assistants, you know, physiotherapy assistants who've gone off and done all this training in how to do relaxation with people that didn't get any time to provide. So it's kind of like, oh, gosh, you know, it is hard to, sometimes to, to get this happening. But you know, I think there is saying that, but there is kind of a, it's a right time. And you were talking to me before about, you know, five, you know, psychosocial guidelines for people with aphasia, and so on that were being developed. And I think the more that we do that, the more the ability will be there to leverage those resources to people who need them. Jerry Hoepner: Agreed. I think that is a really good place to start to wind down our conversation because I think we're moving in the right direction. Still, still plenty of work to do, but I'm wondering, kind of as a as a summary are there are two or three things that you think speech language therapist, working with people with aphasia should keep in mind from a psychological intervention standpoint, and what's a good starting point? Ian Kneebone: Well, I think it's probably the three things I do is like, you know, take it on as part of your work to be aware of these, these these issues and try not to shy away from As tempting as that may be. So, the first thing is, you know, there are good instruments for now that we have screening for anxiety and depression so you can pick those up and they're well within your skill base to use. And then getting the skills and training and things like counseling if you don't have them already, or you don't feel confident in using them, and then getting access to some of these other things. So like Caroline's work, you know, we're hopefully the publish the manual shortly that can guide people, speech language therapists in using those treatments. So that will be something that's out there and a resource that people can use. And once again with it well within the competence of, you know, speech language therapists. And I think finally, you know, just using the great communication skills you've got, even when you're sort of giving people difficult news to receive that. And just being as clear as you can be, you know, how to do the communication. And, you know, kind of accepting people are going to be frustrated. But, but giving it the clarity and the justification in a way that retains people's hope for further recovery but it's pragmatic, to get them functioning as well as they can in the community, because that's so much of the key to people going forward. Jerry Hoepner: Absolutely. And that's, that's our whole goal to get them reintegrated as much as possible. Ian Kneebone: So, awareness, skills, communicating effectively regarding the difficulties and the challenges. Jerry Hoepner: Excellent summary. Well, Ian, it's been fantastic having this conversation. Great to have it again, I don't remember exactly how many years ago we talked. But it's great to have that follow up conversation. And I know our listeners will really enjoy this conversation. So, thank you for being here today. Ian Kneebone: I'm more than happy to help out and thanks for all the speech language therapists who have contributed to my work. I wouldn't be here without them. And it's great to see this interprofessional learning moving forward. If I hadn't missed out any of the great people I've worked with, I do apologize. But there's just too many of you now, which is part of the success story. Jerry Hoepner: Yeah, that's a good problem to have. Well, thank you again. Goodbye. Ian Kneebone: Thanks, Jerry. Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access. Resources: El-Helou, R., Ryan, B., & Kneebone, I. (2023). Development of the "Kalmer" relaxation intervention: co-design with stroke survivors with aphasia. Disability and rehabilitation, 45(9), 1517-1529. Kneebone, I. I. (2016). Stepped psychological care after stroke. Disability and rehabilitation, 38(18), 1836-1843. Morris, R., Eccles, A., Ryan, B., & Kneebone, I. I. (2017). Prevalence of anxiety in people with aphasia after stroke. Aphasiology, 31(12), 1410-1415. Ryan, B., Bohan, J., & Kneebone, I. (2019). Help‐seeking and people with aphasia who have mood problems after stroke: perspectives of speech–language pathologists. International Journal of Language & Communication Disorders, 54(5), 779-793. Ryan, B., Kneebone, I., Rose, M. L., Togher, L., Power, E., Hoffmann, T., ... & Worrall, L. (2023). Preventing depression in aphasia: A cluster randomized control trial of the Aphasia Action Success Knowledge (ASK) program. International Journal of Stroke, 18(8), 996-1004. Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. (2019). Counselling training for speech–language therapists working with people affected by post‐stroke aphasia: a systematic review. International journal of language & communication disorders, 54(3), 321-346. Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. L. (2022). Counselling education for speech-language pathology students in Australia: A survey of education in post-stroke aphasia. Aphasiology, 36(12), 1417-1446. Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. L. (2023). A phase II randomised controlled trial evaluating the feasibility and preliminary efficacy of an education program on speech-language pathologist'self-efficacy, and self-rated competency for counselling to support psychological wellbeing in people with post-stroke aphasia. Topics in stroke rehabilitation, 30(8), 842-864.
Episode #114: Creating Equitable Aphasia Services with Dr. Teresa Gray (00:26:26)
Interviewer info Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer. In this episode, Lyssa Rome interviews Teresa Gray about creating equitable services for people with aphasia who are bilingual, non-English speaking, and historically marginalized groups. Guest info Dr. Teresa Gray is an Associate Professor in the Department of Speech, Language, and Hearing Sciences at San Francisco State University, where she directors the Gray Matter Lab. Teresa's research aims to improve aphasia health care outcomes for historically marginalized populations. Her research interests include bilingual aphasia, the mechanisms of language control in aphasia, and the role of language rehabilitation and its short-term and long-term effects on functional communication. Her team is working to develop evidence-based treatment methods for non-English speaking persons with aphasia, as well as bilingual persons with aphasia. In addition, the Gray Matter Lab hosts identity-based conversation clubs. The goal of these groups is to increase quality of life for the participants, and the lab is starting to examine why these groups are so meaningful to the participants. Listener Take-aways In today's episode you will: Understand why careful listening is important when working with bilingual and non-English-speaking people with aphasia and their families. Describe how speech-language pathologists can tailor their treatment to meet the needs of bilingual people with aphasia. Learn about identity-based aphasia groups. Edited transcript Lyssa Rome Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication conditions in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Teresa Gray, who was selected as a 2023 Tavistock trust for aphasia Distinguished Scholar, USA and Canada. In this episode, we'll be discussing Dr. Gray's research on aphasia treatment for bilingual and non-English speakers with aphasia, as well as identity-based aphasia conversation groups. Dr. Teresa Gray is an associate professor in the Department of Speech, Language, and Hearing Sciences at San Francisco State University, where she directs the Gray Matter Lab. Teresa's research aims to improve aphasia health care outcomes for historically marginalized populations. Her research interests include bilingual aphasia, the mechanisms of language control and aphasia, and the role of language rehabilitation and its short-term and long-term effects on functional communication. Her team is working to develop evidence-based treatment methods for non-English-speaking persons with aphasia, as well as bilingual persons with aphasia. In addition, the Gray Matter lab hosts identity-based conversation clubs. The goal of these groups is to increase quality of life for the participants. The lab is starting to examine why these groups are so meaningful to the participants. Theresa Gray, welcome to the Aphasia Access Conversations Podcast. I'm really glad to be talking with you. Teresa Gray Thanks so much, Lyssa. It's great to be here today. Lyssa Rome So I wanted to start by asking you what led you to study bilingualism and aphasia? Teresa Gray Sure, that's a great question. So, you know, really it was about curiosity. And so when, when I finished my master's in speech language pathology, I was working in Los Angeles at Rancho Los Amigos National Rehabilitation Center. And I was working alongside a phenomenal group of speech language pathologists and a rehabilitation team, and it was just a wonderful experience. And a lot of our patients were bilingual. Some people were monolingual, non-English speakers. And it was just a situation where I was learning more and more about how to treat this population that may not speak English, even though a lot of our aphasia materials are based on English speakers. And in addition to that, I was curious to know more how does language present after stroke? If someone is a simultaneous bilingual versus a sequential bilingual, does that affect life after stroke? What about proficiency? What about language dominance? What about age of acquisition, all of these issues that go into language presentation—I was very curious about, and there wasn't a lot of research out there. And so, of course, as SLPs, we read the literature, and we really want to know, what is best practice. So when I decided to go back for my PhD, I decided I wanted to go study with Swathi Kiran, who is a leader in the field working with bilingual adults with aphasia. And so I had that opportunity. And I moved from Los Angeles to Boston to go study with Swathi. That's when I really dove into learning more about cognitive control and what that looks like as far as like language control, and how that interacts with cognitive control and how that's represented in the brain, and what that means for our patients. Lyssa Rome And since then, I know you've moved into treatment. Can you say a little bit more about that? Teresa Gray Yeah, absolutely. So after it, yeah. So after Boston, I accepted a faculty position at San Francisco State University. And I continued with the cognitive control work. But that's when I realized, yeah, that's fascinating work. Because it's really better. It's getting to know it's learning more about the brain. And I think that's so important. It's so fascinating. But I think what's also important with our patients is how does the rubber hit the road? How are these people, our patients and their families and caregivers, and the stakeholders, how are they affected by the aphasia? And what does that look like? And so that's when I started, I expanded my research agenda and the program, and I teamed up with Chaleece Sandberg. She was already working on ABSANT, which is abstract semantic associative network training. And that's a treatment that if you train concrete words, they get better. But if you train abstract words, they get better, they improve, but we also see generalization to the untrained concrete words. So when she and I started talking about it, and you know, I bring the bilingual piece. And so we really wanted to develop a bilingual version of ABSANT. And the idea here is that when you treat the dominant language, it improves. But if you treat the non-dominant language, it improves, but you also see cross-language generalization to the untrained dominant language. And as we progressed through these this work, we really we started to realize that it's not just spreading activation that supports the cross-language generalization. There's this level of cognitive control. So to achieve the cross language generalization, we're seeing that not only do you treat the non-dominant language, but patients also need to have intact cognitive control mechanisms at play. So the direction we're moving in is that if we have patients that come to the lab for bilingual ABSANT, we also make sure that we administer some of the nonverbal cognitive control tasks to get a sense of how they're processing that information, because that informs how we interpret the ABSANT performance. Lyssa Rome It sounds like really interesting and important work. And we we've interviewed Chaleece Sandberg on this podcast. I'll put that link in the show notes. Can you can you say more about bilingual ABSANT and what you've learned? Teresa Gray Yeah, sure. So what we've learned, like one aspect that we've come across is that just like, one size doesn't fit all is the same with therapy. And it wasn't before too long that we realized that this bilingual therapy isn't a great fit for all patients. And I'll tell you what I mean, like most bilingual therapies, we're treating patients within monolingual contexts. So you'll treat English and then you treat Spanish. In my lab, one of our goals is we're really trying to be as inclusive as we can. And if a patient comes to us and speaks a language combination, let's say Russian and English, we think about do we have resources? I mean, do I have students available to administer the intervention? Can we norm the stimuli and I've been fortunate enough to have many bilingual students who speak a variety of language combinations. And being in California, most of my students speak English and Spanish, but I've also had Polish-English combinations Chinese-English, Russian-English and a few others. What I'm getting to is that a few years back we had a Tagalog-English English speaking patient, and a very motivated student who wanted to administer bilingual ABSANT. And what we found was that during the English phase, it went as usual but during the Tagalog phase, both patient and clinician reported that it was just, you know, quite frankly, it was weird not to code switch, and it felt constrained and unnatural. And so really the logical next step was to think about, well, really to question, why are we delivering a bilingual therapy in a monolingual context, we shouldn't be doing something where it's more of a code switching based therapy that really fosters the communication that the patient needs. So this was a few years ago, and at the time, we didn't have the bandwidth or resources to address this. And unfortunately, that's how research functions—it's really about capacity and resources. But now here we are, and last summer in 2023, we did start norming our Tagalog data set, and to really move forward with this, a truly code switching, or as some folks are calling it translanguaging, like this new, another phase. So we can actually look at what is most beneficial for these patients who are code switching in their natural environments. And so thus far, we have run one patient who has who has gone through this translanguaging experience. And we're quite fortunate to have two more patients on deck. And so we're pretty excited about this. Lyssa Rome Yeah, that's really exciting. And I think on this podcast, we talk a lot about life participation, the life participation approach is about making therapy as real to life as possible, and I think what you're describing is targeting therapy to the way that people actually use language. Whether you call it code switching, or translanguaging, the way we deliver therapy to people who are bilingual or multilingual should mirror in some way, their experience of speaking more than one language. Am I getting that right? Teresa Gray Yeah, absolutely. And I think it also touches on you know, I think it's important that we listen to our patients, other clinicians, family members, and if you're working with students, listen to your students. For quite some time, my students have been asking about non-English interventions for aphasia. And we all know that the majority of aphasia interventions are based on English speakers. But the thing is, if we're simply adapting English aphasia interventions for non-English languages, does that create treatment resources that are culturally and linguistically appropriate? Now, regarding the cultural piece, oftentimes you can choose stimuli to be culturally appropriate. But what about the linguistic aspects when you take a treatment and simply adapt it to another language? And I think it's important that we stop and think about this issue. And I'm in a situation where my students are thinking about social justice issues within the field of speech pathology, and we're thinking about patient access to services, and what those services are, and are they equitable across diverse linguistic populations? Lyssa Rome It seems like you're talking about really listening to and understanding and asking the right questions of all of the stakeholders—the students, the clinicians, and, of course, the people with aphasia. And, as we were preparing for this podcast, you talked with me a little bit, and I was really interested in what you had to say about, the importance of understanding client's language history and how they use language. And you had some ideas for how to elicit more information about that. Would you mind sharing that for a moment? Teresa Gray Well, one thing I've learned to ask, and I learned this from Maria Muñoz, who's down in Los Angeles. One thing I think it's really important is how we ask questions to our patients and their families. And so rather than asking someone if they're bilingual, which can be a loaded question, and people interpret it in different ways, because some folks think, well, to be bilingual, you need to be highly proficient in both languages. But really, that's not the case, right? Like, we want to know if people have exposure or if they use a language other than English. And so rather than asking you, if someone's bilingual, you can say, "Do you speak another language other than English?" Or "Do you understand another language?" And then people really start to open up. Another important way to ask questions is, you know, who are you directing your question to? Are you asking the person with aphasia about their needs and what they want to do, versus the families? Sometimes families will say, "Our 24/7, caregiver is speaking Tagalog." Let's say you're Spanish, so they really need to speak Spanish, but maybe the patient wants to get back to their, you know, a club or something, you know, some social group that they're a part of, and they want to practice a different language. So again, you know, the language history, the way we ask questions, I think it's quite important when we're gathering information so that we can develop, you know, these rehabilitation programs for patients. One way that we're addressing equitable services in my lab is that we've thought with my students and I we've thought about going back to the original ABSANT. So original ABSANT was developed for English monolinguals. And we decided to push ahead with a Spanish monolingual version. And this is quite important in the United States. This population, Spanish speakers, are growing, especially in certain areas, of course, in California. We really wanted to see we're assuming that ABSANT can be adapted to various languages. And theoretically, it should make sense. But I think it's important that we have the data that shows it. And so we've in this past year, we've started collecting data to actually show that yes, it is effective, because I think as conscientious clinicians, and in our profession, we talk about best practice. It's important that we show it. And so, moving forward, this is what we're doing and we're quite thrilled that we have the resources and the opportunity to move forward with this type of a project. Lyssa Rome It sounds like you're describing how equitable services starts with research that's more inclusive and is itself more equitable. Teresa Gray Absolutely. And I think it also it reminds me of how do we capture improvement? How do you measure success? Because right now, when we're doing research, or right now, when we're doing research, and also clinicians out there in the field, we talk about data collection, right? How are you measuring improvement? And for us in the lab, we're looking at effect sizes, but sometimes these effects sizes aren't significant. However, the patient reports that they feel more comfortable, and they're more confident at family gatherings, or out in the community, and that maybe they won't ask for help at the grocery store, but if they need to, they're not scared. And I think that is so I mean, that's invaluable. But how do you measure that? And how do we incorporate that into our data collection? And how we report improvement to the funding sources? Right? Because all of us I, you know, you can't get very far when without talking about insurance dollars and how we measure improvement to get more services for our patients. Lyssa Rome I think that that's, that's absolutely true. And I think we have to measure what's important to the person that we're that we're working with. I, I also wanted to talk with you about the identity-based conversation clubs that you have been working on at San Francisco State. Can you say a little bit more about those? Dr. Teresa Gray Yeah, sure. So we do have a few different groups, conversation groups, through my lab. And one group, it started out as just a service to the community. And so we started an English-speaking group. And at first a few years back, we were in person, but we transitioned to Zoom once COVID hit, I was very impressed with my team, because here in California, when things shut down in mid-March, within three weeks, the group was online. Around that time, maybe a few years ago, we started talking about a Spanish-speaking group, we do have many bilingual patients who are Spanish-English bilinguals, a few of these folks are more comfortable speaking in English. That's their emotional language, and it's their human right to use that language to communicate. So my lab put together a team to start hosting a Spanish-speaking group. And what we've seen is that there's just a different dynamic, when you're speaking in the language that you're most comfortable using. Jokes are different. Chit-chat is different. And we found that patients report a great appreciation for the Spanish-speaking group. In addition to the Spanish conversation group, we also have a Black conversation group that's facilitated by Black student clinicians. This group was started back in January of 2022. Lyssa Rome And we spoke with some of the members of that group on this podcast and I'll again, I'll put the link to that in our show notes. And they were the people who participate in that group. Some of the members of that group had a lot of really positive things to say about how meaningful is had been to them to be amongst other Black people who share their experience. So maybe you can say a little bit more about that group? Teresa Gray Yes. So this group, it was started based on public interest. So one day in 2021, I received a phone call from a woman whose father had suffered a stroke. And she said to me, my dad is Black. He frequently attends aphasia groups. But the majority of people are white, where's the diversity? She was essentially asking, Where's the diversity? We know Black people are having strokes. But where are they? And what resources are there for people of color who have strokes? And of course these are important points that she's raising. And, in fact, leading up to this woman's call, my students and I were, we had been talking about starting this type of a group, but I wasn't sure if there was interest. But that being said, we know when we look at health disparities, and we look at the data, we know that Black people have as much as a fourfold higher incidence of stroke than their white counterparts. But Black people are less likely to receive rehabilitation services. And that's just not right. I have, you know, in this group, like you were saying, lists of people are so appreciative, and they're so interested, and they just really value this group. And I've had some of these patients who have said to me, Look, it was the summer of Black Lives Matter, people were getting murdered in the streets, people were rioting, and there was this national discourse going on about it. And they wanted to talk about it. But their aphasia conversation groups, were talking about the weather, or sports or the things that just seemed inconsequential at that time in their lives. And I think this just gets back to the importance when we think about identity groups—what they are for these people with aphasia, and how do we facilitate and coordinate them? And especially, you know, when the majority of SLPs are white and monolingual? How do we step into this arena? And how do we support and how do we, how do we move forward with these, you know, with these groups that are so valuable and meaningful for people with aphasia? Yeah. Lyssa Rome I mean, I think it's incredibly important work. What have you learned about some of the best practices? Teresa Gray Sure, yeah. So I think it's all about, you know, being open and listening, but also learning how are you an ally? How do you ask questions? How do you make yourself vulnerable? Because if you're not sure about something, you want to ask. And, you know, sometimes with these groups, we've all left groups or situations where we reflect upon like, "Oh, I said, I said something—was that appropriate? I don't know." But again, it's making ourselves vulnerable, and asking you to going back to the group next week and say, "Hey, I heard this, or I said, this, was that appropriate?" I think it's just being comfortable with this kind of discourse. To get there, it just takes practice, which just is, you know, going through the motions and doing the work and going through it and experiencing it. Lyssa Rome It seems like that's something that you've really prioritized within your lab and with your students and in your work. Teresa Gray Yeah, and you know, and we make a point to talk about it, we talk about what it looks like, how it feels, and sometimes those are hard conversations to have. There's literature out there. There's different resources to lean on. But it's definitely I mean, we're all learning as we going as well as we're going and I think it's about having just being reflective, which which can be challenging. But I think that I think as we come through to the other side, we're growing and it's this bi-directional growth, whether it's me and my students, us and the patients, the caregivers, just having these honest conversations because I think our goals are the same, right? Our priorities are to improve quality of life. And and that's essentially what we're doing. Lyssa Rome Coming back to bilingualism, I'm wondering if you have any additional thoughts or advice about use of interpreters, or thoughts for bilingual clinicians? How can they best work with and support people with aphasia? Who are also bilingual? Or who are non-English speaking? Teresa Gray That's a great question Lyssa, because many of us, many of SLPs are not bilingual. And quite frankly, even if you are bilingual, you may not speak the language of that population where you are working. So it's so important that we partner with our interpreters. And know knowing who they are at your site. And this is tricky, because when we talk about this, one recipe isn't for everyone, because all sites are different. The way interpreters are set up in one hospital differs from the next hospital. So you need to know your system and then figure it out. Because if you want to start a conversation group, and you don't speak that language, you're gonna have to team up with the interpreter. And, and I think my advice now is, you know, it's not just about asking the interpreter about that culture or language, it's about doing your homework. So for instance, if you have Spanish-speaking groups, it's important to know what countries your patients come from. And this is valuable because holidays vary across countries, and even within countries holidays and traditions will vary. So you know, when these and these variations can feed into your group discussions. So for instance, around the holidays, people can share what they do with their families, what foods do they eat, how do they celebrate? Last year, we had a Spanish-speaking group, and it was around the Fourth of July. And so rather than talking about the US Independence Day, each participant shared what their country's independence day looked like, and growing up what their traditions were. And people really enjoyed that type of activities. As clinicians, learning about cultures, is so important. I know SLPs, you know, your time is so valuable, right? Like, our caseloads are high, but we can learn bits of information, talk to interpreters, explore topics, and then have activities. And if we go into it with open, you know, just creating a safe space where we're all learning, I think it creates this environment where people feel welcome, and they're comfortable. It's a positive environment when you have an SLP, who may not speak the language, but you have an interpreter who does. And then the participants, of course, they speak that language as well. Lyssa Rome It reminds me of what you were saying earlier about the importance of careful listening to the people that we're working with, including interpreters, right, but also particularly the people with aphasia, who we're serving. Are there any other best practices that you want to share for SLPs who are working with historically marginalized populations of people with aphasia? Teresa Gray Well, I think at the end of the day, it's important that when we go into these environments, thinking about what materials are we using? How are people responding? And creating a space that if we have open eyes, we're open to suggestions. It creates an environment where people are comfortable to share, and, and then even when people give feedback, we can also improve our practice. Lyssa Rome I think that that's at the heart of what we aim to do as, as people who believe in the life participation approach. So thank you for that. I'm wondering as you look ahead, what's on the horizon for you in terms of your research in terms of your work in your lab? Can you tell us a little bit about, about what you're working on now, or what you're looking forward to working on? Teresa Gray Well, one thing on the horizon that we're quite excited about is with our Black conversation club, it has had such a great reception, and the participants are so thrilled to be there, that we really want to dive deeper, and take a look at what makes this group so special. And so we're ramping up now, hopefully we'll be starting soon. I'm partnering with Jamie Azios, who's in Louisiana, and her expertise is in conversation analysis. And so we're teaming up to start looking at the Black conversation club, to look at the discourse and try to figure out well, what are the themes? What is the secret sauce? What is the special sauce that makes this group so powerful? Because I think, you know, when when we have the when you know, when you have data that shows that, and we can write about it and share it with our colleagues, I'm hoping this will inspire and give more of a foundation platform for our colleagues to start groups like this. Because if you have a research paper out there, it's something to hold on to. And it's something to really say like, look, this is effective. And it's worth it's, you know, it's so meaningful and valuable that we should be starting groups like this and other places as well. Lyssa Rome Absolutely. I agree. And I really look forward to that research. I think it's so important. So thank you for doing that work. Dr. Teresa Gray Thank you so much for your work, and for coming on the podcast to talk to us about it. I really appreciate it. It's been great talking with you. Teresa Gray Great, thanks so much. Lyssa Rome And thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome. Links Gray Matter Lab at San Francisco State University Jamie Azios — Aphasia Access Conversations Podcast episode (Second episode) NAA Black Americans with Aphasia Conversation Group — Aphasia Access Conversations Podcast episode Chaleece Sandberg — Aphasia Access Conversations Podcast episode Article: Beveridge, M. E., & Bak, T. H. (2011). The languages of aphasia research: Bias and diversity. Aphasiology, 25(12), 1451-1468. Article: Gray, T., Palevich, J., & Sandberg, C. (2023). Bilingual Abstract Semantic Associative Network Training (BAbSANT): A Russian–English case study. Bilingualism: Language and Cognition, 1-17. Open access: https://www.cambridge.org/core/journals/bilingualism-language-and-cognition/article/bilingual-abstract-semantic-associative-network-training-babsant-a-russianenglish-case-study/9B7FD1EDBDAB6FD042CD4714E1548005 Article: Sandberg, C. W., Zacharewicz, M., & Gray, T. (2021). Bilingual Abstract Semantic Associative Network Training (BAbSANT): A Polish-English case study. Journal of Communication Disorders, 93, 106143. Article: Gray, T., Doyle, K., & Rowell, A. (2022). Creating a Safe Space for Black Adults With Aphasia. Leader Live. Open Access: https://leader.pubs.asha.org/do/10.1044/2022-0614-black-aphasia-group/full/
Episode #113: Adapting the A-FROM to Dysphagia to Guide Whole-Person Care: A Conversation with Theresa Yao and Jocelen Hamilton (00:47:20)
I'm Ellen Bernstein-Ellis, Director Emeritus of the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Jocelen Hamilton and Theresa Yao from Stanford Healthcare. We will discuss how adapting the A-FROM to swallowing disorders can offer a person-centered approach to assessing and treating a person with dysphagia. Guest Bios Theresa Yao is a licensed speech language pathologist at Stanford healthcare and a lecturer at San Jose State University. Her clinical and research interests include head and neck cancer rehabilitation, voice disorders, dysphagia, and aphasia. She is passionate about serving people from diverse backgrounds with communication and swallowing disorders. She was a fellow for life of the Albert Schweitzer Fellowship program, and co-founded the Bay Area's Swallowing Support group. She has been actively volunteering in community groups for stroke survivors who need communication support. She has always been a strong advocate for her patients and profession. Jocelen Hamilton has practiced as a licensed speech language pathologist for 19 years. She specializes in management of communication and swallowing disorders in adults with head and neck cancer. She began her career at the University of Iowa Hospitals and Clinics, and then joined the Stanford Outpatient Head and Neck Clinic in 2020. She also previously served as a clinical assistant professor for the University of Iowa's Communication Sciences and Disorders department with a focus on supervising graduate students and helping individuals with strokes and brain injuries. Her current clinical interests center around the development of frameworks to facilitate whole person care for individuals with swallowing disorders. Listener Take-aways Think creatively about how to apply the A-FROM to other communication disorders, like swallowing Learn how dysphagia can impact the participation, environment and personal domains Consider some PROs that help to capture the impact of dysphagia on quality of life of both the patient and the caregiver Explore some ways to adapt EMRs to incorporate A-FROM or Swal-FROM into your daily notes Show notes edited for conciseness and clarity Ellen Bernstein-Ellis So I'm excited to have both of you here today. Thank you and welcome, Theresa. Theresa Yao 00:55 Thank you, Ellen. I'm glad to be here. Ellen Bernstein-Ellis 00:57 And Jocelen you too. Jocelen Hamilton 00:59 Yes. Thank you so much for having us. Ellen Bernstein-Ellis (Interviewer) Welcome both of you, again, to this podcast. And as our listeners get to know you, we like to open with a fun icebreaker question. I'm going to pose two different questions that you've selected for today. So, Theresa, let's start with you. I guess for full disclosure, I want to admit that, I will share--I don't have to admit, I am sharing that I had the honor and pleasure of being your supervisor at Cal State East Bay in the Aphasia Treatment Program (ATP). So I know that may come up today. I just want to let our listeners know that we've known each other for a while. I have been really fortunate in that relationship and seeing you emerge and thrive as such a wonderful contributor to our field. So Theresa, could you please share one experience or role that has been meaningful to you as an aphasia ambassador? Theresa Yao 03:22 Thank you, Ellen. It was great experience when I was in the Aphasia Treatment Program at Cal State East Bay. So that's actually one of the experiences I wanted to share as an opening, because I was at the Aphasia Treatment Program as a co-director for the choir, Aphasia Tones. And that was one of the best memory in my life. And I remember one time, one of our members who had more of a severe expressive aphasia, and usually has minimum verbal output, and we all know him. But whenever he starts singing, Can't Help Falling in Love, this particular song, you can hear that those beautiful words just came out right out from his mouth, fluently, beautifully. He was always so happy every time that he heard the music, and he just enjoy singing along. That was just a really amazing moment for me to realize that people with aphasia with minimum verbal output, they can still enjoy and participate in choir, and can still communicate that way. It's just showed me how powerful it was to use the Life Participation Approach to Aphasia. And in our choir at that time, we have all different levels of severity. All members join together, and then they all enjoy and engage in this choir experience. So that's really meaningful. Whenever I think of LPA, I think of him, I think of this song, and I think of Aphasia Tones. Ellen Bernstein-Ellis 04:54 Thank you for sharing that. And Theresa, it was wonderful to have you as a co-director. And see you step up to the challenge of leading the choir. And you're right, we really have a strong motto of participation at every level. And you really worked hard to make sure that happened. So thank you for sharing that. And yes, that's one of my favorite topics, so I loved hearing about that. And Jocelen, I'm also excited to ask you to share with the listeners something about one of your experiences. So would you like to share an Aphasia Access, favorite resource or moment? What comes to mind for you? Jocelen Hamilton 05:28 Yes, well, this is really neat for me to be on this podcast, because it is this podcast that is a favorite of mine, and a major "aha" for me. Ellen Bernstein-Ellis Well, thank you, just thank you. Jocelen Hamilton I worked with patients with head neck cancer for about nine years. I then did a major shift and then worked in a graduate training clinic at the University of Iowa. And during that time, previously, when I was at the hospital with a very heavy caseload and working with individuals with dysphagia. And so then switching over and working with individuals with strokes and brain injuries, that was much more communication focused. And I had this caseload I was taking over with the graduate students and learning about all the current treatment principles and treatment options and all the research that had been developed. It had been probably close to 10 years since I had worked regularly with individuals with neurogenic communication disorders. I had knew nothing about LPAA. I knew nothing about Aphasia Access, the organization. And I was thinking about this recently, of how I even came across it. But I think probably I was searching one of these treatment modalities, and a podcast came up. So I listened to some of the other podcasts and I was like, oh my goodness, this totally resonated, LPAA. And the podcasts and other resources through the website, totally resonated with me, and helped me better understand what my frustration was within an impairment only based approach, which was in my training and my background, and things like that, to like see a whole different way. So I learned as much as I could. And I tried to share all of that with my students, we were all learning together of how to implement this. So it's really neat to now be a part of this podcast and participate. Ellen Bernstein-Ellis 07:32 We're so glad you agreed. And I just want to thank you. If there was ever a wonderful plug for membership to Aphasia Access, I think you just gave it. Thank you so much. for that. Well, let's dive in a little bit more to our topic of the day. We're going to be talking about how and why you both decided to adopt the A-FROM or the Framework for Outcome Measurement of Aphasia by Kagan and Simmons-Mackie to your work with head and neck cancer patients. So I know we usually focus on aphasia, but we're taking this really important tool and talking about how you adapt it. So many listeners are, of course already familiar with the A-FROM. But can you briefly describe the social model framework for our listeners? Theresa Yao 08:16 I can start with just a brief introduction. I think everyone, if you're listening to this podcast, you are already very familiar with A-FROM, which is based on the World Health Organization's ICF model. They address a few health and social domains such as body structure, function, activities, participation and contextual factors like personal and environmental factors. And like Ellen mentioned before, Dr. Kagan and colleagues, adapted this ICF model to create a very user-friendly framework for the outcome measurement in aphasia. And this becomes the Living with Aphasia Framework Outcome Measures the A-FROM and it has the domain of aphasia severity, which is the body function or impairment level, and then also participation, environment, personal factor. So these are the core concepts of the LPA approach. Thats what we are based on using this A-FROM to adapt it to this Swallow-SWAL-FROM, we call it. The Living with Swallowing Difficulties framework of measures. Ellen Bernstein-Ellis 09:22 So let's talk a little bit more about this. Jocelen, do you want to share your story as an SLP and how you came to introduce the A-FROM into your work at Stanford in the head and neck cancer clinic? Jocelen Hamilton 09:37 Sure. So after about a year and a half of working with individuals with aphasia and applying LPAA and using the A-FROM with clients, I then changed gears back to working with people who had neck cancer and we moved to California and I joined the Stanford team and I was back into primarily working with individuals with dysphagia. I just kept thinking about how can I take this model the A-FROM and apply that to working with individuals with dysphagia. How I would previously use the A-FROM is that Venn diagram. I would just draw it on a piece of paper and start writing my notes on that as I was maybe doing an intake or working with a client. I started doing some of that model just in my note taking and looking at these different domains that might be impacted. And this was just kind of over a series of months, and even a year, where I was thinking about how to apply this and shared it with my patients. Here are some of the things that I'm seeing and what you're sharing with me that shows your participation is being impacted. Then I ended up talking with our director, Heather Starmer, about an idea of a project—like how can I move this ahead. Theresa had recently joined our team and Heather said, you might want to talk to Theresa about that. She might be interested in doing a presentation on this. And so it was great, because Theresa and I had not yet talked about our aphasia backgrounds together. It was really neat to then work together and begin to apply this with more of our patients. Initially, we kind of struggled with what the environmental domain look like for somebody with dysphagia. And it was neat to talk through different cases with each other to see how it could apply. And then that's where the Swal-FROM came from. Ellen Bernstein-Ellis 11:39 Wow, that's wonderful that the two of you were at the right place at the right time. And I always feel that the expression "stronger together" seems really fitting in this situation. But Theresa, do you want to share how you brought a life participation perspective into your work at Stanford? Theresa Yao 11:57 Yes, sure. Because I've always been a big fan of the ICF model. When I was a student clinician in Aphasia Treatment Program, I learned so much from this model, from LPAA, and from Ellen, you. And also, of course, our members in our Aphasia Treatment Program. And I just could see the huge benefit from the LPA approach in the client's life. So that's why once I started working in real clinics, I always think about this model. And when I started in at Stanford, I started working with the head neck cancer patients. I just feel like so many patients, they live with long term dysphagia, or a sore throat because of the neck cancer treatment they had. And they sometimes just can't get rid of it. They have to live with it. It's just like aphasia. They live with aphasia. And then it just clicked. I just think that it's pretty similar to the situation that you're living with aphasia, and it's that same impact on patients quality of life, on their participation. Then I just started thinking, maybe we can do something with this model to help our patients. And then, of course, Jocelen was there, and then we were just talking about her experience with aphasia treatment and LPAA. And we just clicked. That's why we came up with this (ASHA) presentation, and this idea of how to adapt this A-FROM to our Swal-FROM. And then also, we're talking about this because I also started a support group because I feel like people wanted to get connected. They wanted to engage like aphasia group. They wanted that community to be able to participate, to be able to share. So that's why I think this also helped me to try to initiate this project, this group, so that we can help more people so that they can, they can help each other. Ellen Bernstein-Ellis 13:56 I really love that you saw the power of group therapy, and you then were able to bring it into a different treatment arena. I really don't remember hearing too much about separate support groups for people with swallowing disorders. I don't know how common they are. But it sounds wonderful that you started one, Theresa. So very exciting. What do we know about the incidence of dysphagia in stroke survivors, and then people in skilled nursing, and from there, head and neck cancer? The reason I ask because I think there's overlap. I mean, you're seeing the dysphagia in head and neck cancer, but we know that it occurs frequently. Do you have any numbers to share about the incidence in stroke survivors? Jocelen Hamilton 14:39 Yes, so it's about 45% of individuals with strokes experience, some degree of dysphagia and there's been research that's shown 40 to 60% of older individuals in nursing homes have dysphagia. There's even some research out there that one in 25 adults will experience dysphagia. Then when we look at individuals with head and neck cancer, and this could be on the lower range, but one of the particular statistics is 45 to 50% of individuals with head and neck cancer experience dysphagia. Ellen Bernstein-Ellis 15:11 The importance of considering the whole person (for dysphagia tx) is really going to affect a lot of people that we might be seeing as therapists. And the two of you saw that there was a strong impairment focus in dysphagia management. Can you give an example? Theresa Yao 15:27 I can talk a little bit about this. When I was in grad school, I know that most of the things we learned was how to identify the impairment of dysphagia. We learned all kinds of treatments and exercises for dysphagia. We learned like how to modify diet, how to look for aspiration, penetration. Almost everything we learned, and also what we've been practicing in our clinical practice are heavily focused on the deficit and impairments. That's basically how we trained to assess and treat the physiological changes or the deficit. It just, to me, sounds like it's really technical. I recently just look up the ASHA NOMS, the National Outcomes Measurement System-- that's what we usually use as judgment of whether the patient is making progress or not. They use this particular functional communication measures to see there's like different levels. If you're really looking at this national measurement system, you can see that the wording and the definition of each level is pretty much impairment focus. They mention diet level, safety, efficiency of swallowing, compensatory strategies, or cues, etc. So these are really heavily focused on impairment, but you don't really see like things that relate to participation, quality of life, environment, and those factors. So the consequences that if all the clinicians are just looking at the impairments and not looking at other factors, then you are missing a lot, you're not treating the whole person. Ellen Bernstein-Ellis 17:11 Well, that's perfect, because that leads me to my next question. Why is it important to go beyond the impairment level measurement with dysphagia? Jocelen Hamilton 17:24 I would say, because dysphagia is more than a physical difficulty. That's our name for that physical impairment. But it influences more, just like we know, with aphasia, that it's not just how much they can say, what they understand in the different modalities, but how a change in this function in the body influences everything. So one of the analogies that I can relate to, that I've heard before in terms of looking at accessibility, has to do with like, physical impairments. So if somebody is paralyzed, they can't move their legs, well, the physical therapists are going to look at their legs and see the range of motion, their strength and all of that. But they're also going to think about how are they going to get into their house? And how are they going to move around? Well, sometimes what can happen with dysphagia, as Theresa already talked about, we're looking just at how does that epiglottis move? What is the airway invasion like? But then are we going to talk about well, what's going to happen? We just had the holiday with Thanksgiving and the holidays now. What are family meals going to look like? I think one of the things that sticks out to me is what would my day to day life and social life be like if I couldn't drink with ease and comfort, I couldn't eat with ease and comfort, if I needed to have special food and special liquids and special strategies? So this impacts so many things within a social realm, and personal realm as well. We'll get into that in more detail as we go. But it's not just about the change in a physical function. How does that influence the rest of our lives? And it really does. There's been research that shows about burden and quality of life and psychological health. Ellen Bernstein-Ellis 19:08 Well, this really hits close to home for me. I'm going to share with our listeners a personal story, because I've always been very passionate about our field and an advocate for speech language pathologists, but being on the other side of the table, when my husband was diagnosed with terminal cancer, did nothing but increase my own respect and appreciation for the role we play in supporting our clients and their loved ones. Through this process, specifically with dysphagia, and I want to give a shout out to my husband's speech pathologist at Stanford, Heather Starmer, (and another congratulations to her because she just was made a 2023 ASHA fellow), but I'll just always remember the day that we came in. I know that Heather was set with her treatment plan-- I could already guess what we needed to do for the day. And that plan went out the window because we both signaled, Steve and I, that he was just feeling an increasing burden of trying to manage all of the home tasks we were supposed to do for both PT and speech, and it was just really impacting how he was feeling. And so instead, Heather focused on the personal impact and the quality of life issues that we were bringing up. Steve wanted to be compliant. He wanted to be the best patient there was. But she really listened to him carefully. She brought her best counseling skills to the table that day, and helped us come up with a plan that we could manage in a way that would help us sustain his quality of life as best as possible. So I really saw, personally, I mean, I saw day in and day out how his dysphagia from his head neck cancer really impacted, hugely impacted, his participation with our family, and his quality of life. I am grateful for this work that you're doing and the passion you feel for looking at the whole person as you assess and treat dysphagia. And thanks to you, I've been reading, since dysphagia is not usually in my wheelhouse as much these days, but thanks to preparing for this particular episode, I was able to read some articles by Rebecca Smith and her colleagues that showed me that there's some amazing work being done looking at this whole topic, so thank you for that. Okay, and taking a deep breath, because that's a story I've been thinking about for quite a bit. Back into our next question. What is the speech pathologist's role in assessing and addressing health related quality of life and the associated mealtime quality of life? That seems to be talked about a lot in the literature right now. Jocelen, is that you again? Jocelen Hamilton 21:57 I'm glad you mentioned Rebecca Smith's work. There are actually three papers, I think, that that group, she and colleagues, put out in 2022. And specifically, I'll share a few quotes from their paper The True Cost of Dysphagia and Quality of Life: The Views of Adults with Swallowing Disability, but in a way, there's a call to action, and she's not the first to mention it. But for us to include social participation, and their overall well-being, as part of our dysphagia intervention. To make that routine, and then to also ask questions: How are you doing? How are the holidays? How are these social settings with eating? I like to ask patients and their family members, and ask them separately, not meaning like individually, within the same session: Are you participating in doing this, the same things that you did before your diagnosis? Or how is that looking? Are you going out to eat as much? What do you miss now that is different and you're experiencing changes in your swallowing. And it's interesting, because sometimes the partner will say that they miss going out to eat, and they need to navigate feelings like, "Well, I don't feel comfortable eating this in front of my loved one who has difficulty swallowing. I feel conflicted about I get to eat ribs, and they don't." Those kinds of things. The importance of eliciting these stories, so we can really see what are their challenges, because then we can, like LPAA teaches us, we can engage in this creative problem solving and how we can help navigate through some of these challenges. I think those are a couple of important things that we can look at to support people. Ellen Bernstein-Ellis 23:45 Thank you. And I just wanted to let our listeners know that we're putting all these references into our show notes. I took some from your ASHA presentations that I attended. So those will all be cited in the show notes. Well, to expand to the participation, environment, and personal domains, you started to think about using patient reported outcomes or PROs for assessment. Why don't we go through the domains and discuss potential tools and interventions to fill out this framework a little bit more. So what might it look like if you consider participation? Jocelen Hamilton 24:24 When we're looking at participation, we're looking at these meaningful activities may or may not involve oral intake, but looking at their current levels of participation compared to their pre cancer status. So how often, and in what ways, is someone with swallowing challenges participating? I kind of already talked about that a little bit. And how are the family members doing? Here's one of the interesting things that I've had patients share here. Sometimes, one of the swallowing strategies that a patient needs to complete is a purposeful throat clear, and a re-swallow, or some patients do naturally their throat clearing, or maybe they're coughing when they're eating and drinking. This is an area where it calls attention to them when they're doing this. And then during the pandemic, we were all super hyper aware is somebody clearing their throat? Is somebody coughing? I've had some patients where they really don't feel comfortable because it calls attention. And people ask, how are they doing? And also, another challenge being that when swallowing is hard, talking and swallowing is extra hard. When swallowing is challenging, most people need to just do that, where we take for granted that meals are a very social time. So some of those issues can be really challenging. There's also some individuals where their difficulty with swallowing has to do with loss of the bolus coming out and so there's almost changes in appearance, where they may not feel it. Their lip, their chin might be numb, and they don't know that liquids are dripping out, or they have a piece of food sitting there. So, they might be hesitant to go out and participate in different social settings. Even sometimes we have patients where they don't feel comfortable eating with their own family members, where they will eat completely separate from their spouse. Ellen Bernstein-Ellis 26:28 I am just really struck again about the overlap of some of the things in your head neck cancer patients with clients I see with aphasia. It's really striking. So should we take a moment and discuss how this might look if you consider the environment? Jocelen Hamilton 26:44 I really didn't address a PRO at all. Ellen Bernstein-Ellis 26:46 Oh, it's not too late. We can still do that. Ellen Bernstein-Ellis 26:52 Why don't you go ahead? Jocelen Hamilton 26:55 Sure. Okay. So we're looking in this interview, right, like gathering information, learning how these things are challenging for them. For patient reported outcomes, PROs, Theresa, and I both looked into different ones. And oh, this one has these questions. And this would fall within this domain. So I'll touch base on a few of them here. And then some of them, they have questions that actually apply to all of the domains. So for these, there's one the Swal-QOL, this is probably the most broad in terms of looking at all of the domains that are within this Swal-FROM. It has 10 different quality of life concepts that it has specific questions for. So for this one, there's one subset that's all about social functioning. Some of the questions, they're rating from either strongly agree five point scale to strongly disagree, One of the questions, for example, is "I do not go out to eat because of my swallowing problem." That really tells you where they're at with that participation, or "Social gatherings like holidays or get togethers are not enjoyable because of my swallowing problem." So that really hones in on that challenge. Within our specific area of practice with individuals with head neck cancer, there's a scale called the Performance Status Scale Head Neck Cancer, PSS-HN. Now you might think, how might I use this? I encourage people to be open minded, even though this wasn't validated. And some of these are not validated on individuals who have dysphagia from a different cause other than head neck cancer. It doesn't mean that you can't use it as a way to gather information, engage, and perhaps re administer. I'm also a big fan of, as people fill this out, having a conversation about their responses as they go to gather information. But with this, the Performance Status Scale, there's a specific rating scale about public eating. So zero means always eats alone. And 100 is no restriction of eating for any place food or company. So they would eat out at any opportunity. Where in-between might be one point on the scale, "eats only in the presence of selected persons and selected places", or they would eat out but there would be another option, "eat out, but be more selective about the diet textures and things they would consume in a social setting", which is common. Some individuals will specifically choose different foods when they're when they're in a social setting. There's also another PRO, the Dysphagia Handicap Index. So with this one, it's a 25 item questionnaire and it does specifically look at physical, functional and emotional aspects of dysphagia. And so a couple of questions from there that would fit with the participation domain include, "I'm embarrassed to eat in public" and "I don't socialize this much due to my swallowing problem". Those could give some insight into these areas by selecting some of those questions. Ellen Bernstein-Ellis 30:08 Well, I'm really glad you caught me. I think I was so struck about the overlap that, thank you for coming back and talking about those PRO's. Are we good? Can we transition to the environment next? What would this look like? What does the Swal-QOL look like if you consider the environment. Theresa Yao 30:29 When you talk about the environment, it can be factors such as the availability of the appropriate food textures, and oral liquid consistencies across different social settings. For example, if you go out to the restaurant, are there any easier food texture that's available for people with dysphagia? And that's one of the environmental factors. And then there's a new article from ASHA leader that just came out about dining with dysphagia. So that's actually a pilot program from University of Cincinnati that try to help restaurants to expand their menu options so that they have more choices for people with swallowing disorders. Ellen Bernstein-Ellis That's amazing. Theresa Yao Also, another factor that related to the environment is the attitude and level of acceptance or support the people with dysphagia can get from their family, their friends, or even just strangers in their eating situation. So just like Jocelen mentioned, if you're coughing or clearing the throat, what the reaction from other people will be like, -- if they're supportive, or if they're not so. Sometimes these factors can make a patient uncomfortable eating out because of those environmental factors. And then also, the attitude from people around usually can be impacted by culture. Which type of textures they prefer to consume, and how they consume. If you go to a different type of restaurant, they may have different types of food textures, that are specifically for that culture, so that's also another factor. And then also, on the broader spectrum, is the attitude from the healthcare professionals or the public, because the attitude from healthcare professionals is basically, because dysphagia is invisible, and when you are in the hospital, not everyone can see it. If you have leg injury or arm injury, people can see it. But if you have dysphagia, you can't see it. And then when the health care provider is, prescribing your pills, and if you can't swallow, how can they take the pill? They probably are not aware of this, this type of disability, so they may not prescribe you the right pills. These are the things that we can consider as environmental factors. And of course, even larger scale, there's health care policies, the service systems, that may impact the people with a dysphagia too, because insurance may not pay all the dysphagia services, or how often can people get dysphagia support or service? So those are all the environmental factors that we may consider. Ellen Bernstein-Ellis 33:21 I think the importance of this framework is helping us as clinicians to continue to think just broader and more widely about what's impacting the person in front of us. I mean, wow, you are giving us a lot of factors, from the very personal to the broader social policy. And I want us to take a moment and also talk about personal factors, that whole domain. Theresa Yao 33:41 Personal factors can also be very, very important. And a lot of things can be involved. So we know that the person was dysphagia may not be the same person, have the same hobbies or same traits, as before their treatment. So that may cause anxiety, or they may feel embarrassed because of their eating habits, or the change of their eating habits. Because we know that eating and drinking is very individualized. Some people, if they're born as a slow eater, they probably are okay with their dysphagia diet or if we ask them to eat slowly and take smaller bites, that's totally fine. But if some people are born as a fast eater, they will have a huge challenge with, if you give them the strategy to eat slow, taking small bites, because that's just not them anymore. They just feel like they're a different person and then they feel disappointed or frustrated if they can't eat as fast as they used to. And I always share this in my clinic. I see two patients with similar procedures. One person can feel really happy with their diet. They feel okay because they're always eating soft foods or soups. And then another person just with a little bit of impairment of mouth opening, they feel like it's just really frustrating because they can't bite their sandwiches and burgers. And that just makes a huge difference. But if you're only looking at their swallow study, it's the same, they probably don't have any major impairment, but the impact on the quality of life on their participation, environment, and also personal factor. It's so different. So that's why I think considering a personal factor is really important. Ellen Bernstein-Ellis 35:38 So you're giving us examples of the things we should be thinking about, you're giving us examples of some of the PROs that might help us measure. But if many of the EMRs, the electronic medical records are set up for impairment focused measures, how can you adapt the documentation to include these other domains? That's always a barrier, or can be maybe, not always, can be. Jocelen Hamilton 36:00 I think sometimes it can be a barrier. If sometimes the entry is just you have to click certain things, there's not a lot of room for free text. With the EMR that we have, we can have a set template, but we can copy and paste anything in there. So what I did is I took the A-FROM--actually, in the same paper that put out the A-FROM, they put the FROM, Framework for Outcome Measurement, and actually suggest that you could use it for individuals with TBI and called it TBI-FROM. I took that and put it into a template and have the citation for it there and then added a title. It gives a visual for other individuals reading the note of what I'm talking about. 'Survivorship beyond body function domain: Dysphagia's impact on personal, participation, environmental domains', so I have that as a title. I have it as this set, we use epic, so I can do dot phrases (Smart Phrases). I can drop that into a note. And then as I go through and document, I have the subtitles of body function, participation, environment, personal factors in as I'm collecting this information. That's how I can organize my note. I don't do it every single time with every single patient. Sometimes some of our sessions are more impairment focused, like we need to for safety reasons focus on this. Sometimes it's more a whole session all about how are they doing with their personal domain? I had a patient in the clinic today, and he is depressed, and we just had this quick talk of, "Okay, what do we need to do? Can you talk to your primary care doctor? This is common, many individuals with head neck cancer have depression." But I'll organize my note, getting back to the notes, with those subtitles and putting the information in there. It also is a cue for me, because I keep needing cues and reminders to come back and broaden that focus, instead of always being in on the impairment and you monitor, document, and then monitor, as I'm reviewing back on their notes to see how they're doing across these different domains. Ellen Bernstein-Ellis 38:19 That is a beautiful example of how you can adapt something. I'm sure a lot of our listeners really appreciate you describing it so carefully, and hopefully will inspire some of them to see what they can do to adapt their EMRs. A little bit earlier, you mentioned the importance of getting perspective from both the client and the care partner. How does the caregiver or care partner experience fit into the Swal-FROM? Theresa Yao 38:47 Caregiver or care partners, they play a really important role in this whole journey with individuals with dysphagia. And I'm sure Ellen, you probably were in that role before. Most of the time, it's the caregiver making the meals for the spouse. Making the meals for the patients with dysphagia can be very challenging. Because just the texture, you have to take care, and the taste. I have caregivers talking to me. They told me that they tried their best to make all the foods but the patient didn't eat at all or didn't like it at all. Then they feel super frustrated. These are all the challenges that the caregivers may face. Dr. Samantha Shune and colleagues, they did a lot of work on this caregiver burden topic. Their study said increased caregiver burden has been associated with the degree of impact that dysphagia is having on mealtime logistics. Family members also report increased anxiety and fear and frustration, stress, embarrassment and social isolation. So these are very two critical things to consider when we're thinking about whole person care, because we can't just care for one person, the patient. But if the caregiver is also experiencing all the stress, all the anxieties, we also need to consider that factor. Researchers in Australia, Professor Nund and colleagues, they also pointed out that this specific caregiver burden is third party disability. And it's the consequence of that person's impairment, which impacts the functioning and ability of their family members or significant others. That's why we want us to fit this caregiver experience into this Swal-FROM framework. Just adding the family caregiver in all the different domains to support patients with dysphagia. And caregiver can influence four domains. But at the same time, also, we need to take care of, examine, the four domains of the family member or the caregiver--going to check their participation, their environment, and their personal factors. Those are really important, because their health and well-being can be affected by being in the journey of taking care of people with dysphagia. So they're super tied closely. That's why we wanted to fit this framework as well. Ellen Bernstein-Ellis 41:21 One of the clinical tools I've learned is available is a PRO measure called the CARES, developed by Shune and colleagues, and we'll again put the citation in our show notes. Theresa, could you describe that a little bit more?. Theresa Yao 41:37 So this is a wonderful screening tool that developed by Dr. Shune and colleagues. It's full name is called Caregiver Analysis of Reported Experiences with Swallowing Disorders. It has 26 items in the questionnaire. And then there's two parts that explore a different aspect of dysphagia's impact on the caregiver. One is a checklist on the behavior and functional changes, and one is a checklist of the subjective caregiver stress. Basically, it's a simple yes/no questionnaire. You can give it to the caregiver and they can just circle yes or no. Then from that, you can figure out what area you may address as an SLP. Or you may want to refer them to a specific team or professionals to address that, because we have limited scope of practice, we can't do everything. But if we can help them to identify the issue and then point them in the right direction, to the right team. That may help a lot. Ellen Bernstein-Ellis 42:43 In your ASHA presentation you also mentioned the Rome Foundation is a resource and another website that offers skill building around managing serious illness conversations. We're going to put both of those resources into the show notes for people, but we don't have time right now to go into them fully. But Jocelen, can you address or share what benefits you've seen by adopting this framework? Does it help with goal setting? Does it help with acceptability of recommendations? What have you seen? Jocelen Hamilton 43:12 I think it's helped me and I feel like it's helped patients and our families have a little more clarity about, okay, these are the areas that are challenging. And again, I'm a visual person, so if I write it out with them, and they're telling me things, and I'm explaining, I get excited about the diagram, and I'm like, you know, see, this seems like an area of challenge. Is there something that you're interested in doing in this area? Are you willing to talk with another person who's gone through this? So I feel like it really can give clarity, I think, for myself, what you know that A-FROM does, and Swal-FROM now is to not, I professionally can get really hung up on the impairment. And I can't always change that, right? We can't always change it to the degree that we would like. Of course, we would like everybody to have complete resolution, right? And so there can be this frustration and powerlessness with that. And obviously the patients and our family members can be experiencing that also. And with this broader view, we can say but here's what we can focus on what can we do to have you participate that would make you feel better? What can we do that would help you with your personal feelings? So I feel like it addresses things that matter and we can have more conversations about how is their day to day life being impacted? What are some small steps we can take in a direction that might help them and their families. Ellen Bernstein-Ellis 44:43 That's beautiful. Thank you so much, Theresa and Jocelen. It has been a pleasure and I've learned so much from both of you, listening to you apply this framework and look deeply and carefully at quality of life for people with dysphagia. I really appreciate it. Is there anything else you want to add? Theresa Yao 45:03 I just wanted to add a little bit. So I think it's really important as clinicians to listen to our patients and caregivers, because we need to learn from their experiences, their perspective. And, like we mentioned dysphagia is invisible. I wanted to share one of the quotes from one of the dysphagia support members. He says, "dysphagia is a label you carry with you inside." And that's really just so true, because it's hidden. If you go outside, people see like you what you can walk, you can talk, but they don't know that this disability is hidden inside. And I think it's so important to address not just the impairment, but also listen to the patient's perspective. And then help them to address all the domains. I always think that you become a better clinician because what you learn from your patient. So that's all we need to do. Ellen Bernstein-Ellis 46:08 I can't think of a better way to close this interview. Even though I could ask you several more questions, we could be here for another hour, I just want to thank you for bringing that patient's voice, a client's voice, into the discussion today, so beautifully. And let's end on that note of really learning from our patients' perspectives. So I want to thank you both. And I want to thank our listeners for listening today. And for the references and resources mentioned in today's show, please see our show notes. They're available on our website at www.aphasiaaccess.org. And there you can also become a member of our organization. Jocelen Hamilton Yes, yes, Do it! Ellen Bernstein-Ellis Thank you! Browse our growing library materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@AphasiaAccess.org For Aphasia Access Conversations, I'm Ellen Bernstein-Ellis. And thanks again for your ongoing support Aphasia Access Resources and References Ariadne Labs: Serious Illness Care Program https://www.ariadnelabs.org/serious-illness-care/serious-illness-care-program/ The Rome Foundation https://theromefoundation.org/ Chen, A. Y., Frankowski, R., Bishop-Leone, J., Hebert, T., Leyk, S., Lewin, J., & Goepfert, H. (2001). The development and validation of a dysphagia-specific quality-of-life questionnaire for patients with head and neck cancer: the MD Anderson dysphagia inventory. Archives of Otolaryngology–Head & Neck Surgery, 127(7), 870-876. Hamilton, J., Yao, T. J. (2023). Framework to Guide Whole-Person Care for Individuals with Dysphagia. 2023 ASHA Convention, Boston, MA. Hamilton, J., Yao, T. J. (2022). Shifting to Whole-Person Care for Head Neck Cancer Survivors Living with Dysphagia. 2022 ASHA Convention, New Orleans, LA. Hickey, E. and Douglas, N. (2021) Person-Centered Memory and Communication Interventions for Dementia: A Case Study Approach. Plural Publishing, Inc. Howells, S. R., Cornwell, P. L., Ward, E. C., & Kuipers, P. (2021). Client perspectives on living with dysphagia in the community. International Journal of Speech-Language Pathology, 23(2), 201-212. Kagan, A., Simmons‐Mackie, N., Rowland, A., Huijbregts, M., Shumway, E., McEwen, S., ... & Sharp, S. (2008). Counting what counts: A framework for capturing real‐life outcomes of aphasia intervention. Aphasiology, 22(3), 258-280. List, M. A., D'Antonio, L. L., Cella, D. F., Siston, A., Mumby, P., Haraf, D., & Vokes, E. (1996). The performance status scale for head and neck cancer patients and the functional assessment of cancer therapy‐head and neck scale: a study of utility and validity. Cancer: Interdisciplinary International Journal of the American Cancer Society, 77(11), 2294-2301. McGinnis, C. M., Homan, K., Solomon, M., Taylor, J., Staebell, K., Erger, D., & Raut, N. (2019). Dysphagia: interprofessional management, impact, and patient‐centered care. Nutrition in Clinical Practice, 34(1), 80-95. McHorney, C. A., Bricker, D. E., Kramer, A. E., Rosenbek, J. C., Robbins, J., Chignell, K. A., ... & Clarke, C. (2000). The SWAL-QOL outcomes tool for oropharyngeal dysphagia in adults: I. Conceptual foundation and item development. Dysphagia, 15, 115-121. Nund, R. L., Scarinci, N. A., Cartmill, B., Ward, E. C., Kuipers, P., & Porceddu, S. V. (2016). Third-party disability in carers of people with dysphagia following non-surgical management for head and neck cancer. Disability and rehabilitation, 38(5), 462–471. https://doi.org/10.3109/09638288.2015.1046563 Shune, S. Moving beyond the isolated swallow: Dysphagia in the context of the shared mealtime. https://dysphagiacafe.com/2015/03/19/moving-beyond-the-isolated-swallow-dysphagia-in-the-context-of-the-shared-mealtime/ Shune, S., Davis, C., & Namasivayam-MacDonald, A. (2021). Contributors to Dysphagia-Related Burden Among Spousal Caregivers of Stroke Survivors. Archives of Physical Medicine and Rehabilitation, 102(10), e65. Shune, S. E., & Namasivayam-MacDonald, A. (2020). Dysphagia-related caregiver burden: Moving beyond the physiological impairment. Perspectives of the ASHA Special Interest Groups, 5(5), 1282-1289. Silbergleit, A. K., Schultz, L., Jacobson, B. H., Beardsley, T., & Johnson, A. F. (2012). The dysphagia handicap index: development and validation. Dysphagia, 27, 46-52. Smith, R., Bryant, L., & Hemsley, B. (2023). The true cost of dysphagia on quality of life: The views of adults with swallowing disability. International Journal of Language & Communication Disorders, 58(2), 451-466. Smith, R., Bryant, L., & Hemsley, B. (2022). Dysphagia and quality of life, participation, and inclusion experiences and outcomes for adults and children with dysphagia: A scoping review. Perspectives of the ASHA Special Interest Groups, 7(1), 181-196.
Episode #112: Aphasia 3D: In conversation with Dr. Assunção (Maria) Matos and Paula Valente (00:52:50)
Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Paula Valente and Dr. Assunção (Maria) Matos from the Portuguese Institute of Aphasia (IPA). In this episode, we'll be discussing Paula and Maria's role in building three dimensional social, LPAA in Portugal from the ground up. Biosketch: Paula Valente is a Speech and Language Therapist, social entrepreneur and responsible for the creation of IPA. She realized that there are important gaps in the therapeutic interventions that are offered to the person with aphasia in Portugal. With the support of partners in Portugal and in another countries, and with a team consisting of a speech therapist, a psychologist, a social worker and volunteers, Paula is convinced that the path will not be easy, but it's possible. Dr. Assunção (Maria) Matos is a Lecturer at the University of Aveiro in Portugal. Her work is grounded in the WHO-ICF model and social, LPAA approaches to aphasia rehabilitation. As one of Paula's teachers, she influenced the development of the IPA and is a crucial partner in the innovative programming that they offer. Take aways: Shift to Social Approach: SLPs in Portugal moved from a medical model to a social approach in aphasia intervention, realizing the limitations of traditional speech therapy alone. Comprehensive Support Program: EPA in Portugal offers a wide range of services, including therapy, psychology, and caregiver support, aiming to enhance the lives of people with aphasia and their families. Limited Services in Portugal: EPA is the sole organization providing such extensive aphasia support in Portugal, serving the entire country, with an emphasis on online services to reach distant regions. Professional Training Focus: Assunção Matos emphasizes holistic training for speech-language pathology students, preparing them for diverse practice settings by exposing them to various intervention approaches. Fundraising Challenges: EPA faces fundraising challenges in Portugal due to limited access to funds and philanthropic support. To sustain their services, they generate revenue through clinical services, therapy programs, online courses, and book sales. They also have associates who contribute annually. Despite challenges, they are working to demonstrate the effectiveness of their approach to gain government support for sustainable funding. Interview Transcript: Jerry Hoepner: Well, it is my privilege today to have a conversation with Paula and Maria. So, we're going to just begin talking about the programming that they've started within Portugal. And I'm just really excited to have this conversation. I think this is a unique conversation for aphasia access. Because we're really get to talk about the process of building a program within a country from the ground up from scratch. So, I think we're used to stepping into this process partway through and again. This will be a really fun conversation. So welcome, Maria and Paula. And yeah, welcome to Aphasia Access. Assunção Matos: Okay, thank you. Thank you, Jerry, for the great opportunity of being here with you, sharing our experiences and our dreams. It's an honor to be here with you. Honestly, thank you. Paula Valente: I make my [unintelligible]. It's the same. Thank you very much. Jerry Hoepner: Absolutely. I have to say I was really privileged to have some conversations with Maria and Paula at the IARC Convention in Philadelphia last spring. So got the opportunity to meet there. And obviously really interested in learning more about your work and programming that you started in Portugal. So. we were talking just before this podcast about your name, and then you call it the EPA or the I.P.A. I was saying that in a in English we'd probably call that the Portuguese Institute of Aphasia. But I'll let you explain the name a little bit from the Portuguese standpoint. Assunção Matos: So, IPA is Instituto Português da Afasia the so it's exactly what you were saying in in in English. I.P.A. is known as EPA all over all over the country and it was decided to call the association like this? It was actually it was Paula's decision. Paulo, do you want to say something about it? Paula Valente: No, we just at a name to our legal name is another one, because in when we did the registration of the organization, we had to choose another name. So, our name is Afasia. It's like, if IPA. Afasia Epaphazia. So, our organization of the legal name is Epaphazia. But the trademark Is Instituto to Portuguese Epaphazia. That was the Portuguese Institute of Fascia. When we choose this name it was a little bit scary, remember, as soon, so I don't know if because we were afraid to do. To tell people this is a big thing we are a Institute is an institute is a reference is something that sounds like very credible. And we want to do that. But at the time it was the beginning, and we were like, I hope this will work. So was like, okay, let's do. Let's do, Let's do this with this big name, impressive name. And what's also a strategic name to show the people that we were doing something with something good, something with good basis and good principles, and the with and impact to the person the people with the afasia. So, we were a little bit afraid at the beginning, but with the responsibility we were taking. But I think it was the right choice. Jerry Hoepner: Yeah, I agree. I think it's a great name and thank you for filling in a little bit of that background. In full disclosure. There's no way I could pronounce the Portuguese version of that name. So really happy to have you do that? But yeah, this really speaks to that kind of building from, you know, from the ground up from scratch. Paula, I'm interested in a little bit more on that. How did the EPA or the EPA come about? Paula Valente: Okay. So, I was. I've been a speech therapist since 2008, and I did my practice with a Assunção. She was my teacher in the hospital and maybe she can tell a little bit. She influenced me at the time because when I finish that practice internship, I was convinced that my mission, my life mission, and my professional vocation was to work with people with aphasia in a socio model or in more psychosocial model, because she taught me that in the hospital. So, from there I study about that, I did my master in that field like my master. I'm sorry about my English, so try to understand me, please. My master was about partner training aphasia partner training, communication training. And from there I was convinced that I had to do more to help people with the Aphasia to live better, besides the aphasia I was working at the same time in hospital context, public one. And I was also working in a private clinic with patients with a phase. So, I saw the difference of get to work in more functional and communicative way with the people, with the, with the person, with the patient and his family, and in a medical model. So, I was seeing the differences I was studying, and I thought no, I would love to help the people with the aphasia to in Portugal, because I was also understanding better the public services to this, this to these persons to person with aphasia, and I started to feel that I could do more. Something started to make me dream about a common community program or center and at the time I had to I did the A social internship course, Intensive program training program that give tools that I needed to start making my dream a reality. So, at the time after I did that social entrepreneurship course, I said goodbye to my jobs and I started a pilot project. The name of Pilot project was Aphasia 3D. Because at the time I thought already to work in 3 dimensions, person with aphasia, family and friends and community. So, to achieve a better life with the aphasia I needed to working that 3 levels. So, the pilot project was aphasia 3D was the name but when he I did my pilot project I called was from Zoom at the time she was my teacher, but also she gave me orientation in my thesis master thesis a project and I call, and I talk. I talk with her. We had a conversation about these, and she was a big supporter. So, she at the big since the beginning, she told me. Paula, I am with you and I will help you. I will be on your side. Let's go. So, she was very, very important. Since the beginning, since everything I don't know. So, add in the final of that. Here the pilot project began and we started to invite some people with the aphasia, some family members, some friends of mine to be the social organization. I don't know. How do you say in America. But we, when we, we have to have a group of founders to register our organization to founder organization, we have just say, let me see. I think it's the Board of the Association. Yes, it's like we have the board. We have a structure and we invited people to do that with us. And then, born the organization the ONG EPA institute together the maybe I can now talk more about what we do but maybe someone can explain better how she influenced me to do that, because is also our passion. Assunção Matos: Well, first of all, first of all, I think I need to do a clarification. My name is Maria. I'm also Assunção, so when Paula is talking about this and some, I'm the same person to say and all other people from other countries, what can I say? I started as an speaking language therapist in the nineties and my first job as an SLP was in a cerebral palsy center with children and their families and indicators and in this kind of center we were very already at the time we were very focused in intervention, on communication. So, it was really common to work with the children, with their family members with the augmentative and alternative communication systems, low high technology. So, this was very common for this population already. So when I changed my job 2 years later, and I went to a central hospital with people with aphasia, my idea of working as an SLP was, you know, focused in communication, and not just in speech or language but thinking about people with the aphasia at the time. The medical model of intervention was the strongest one in hospitals in Portugal, maybe around the world. I'm not sure so when I started working with my patients, I thought I have to do more. This is not enough, so I was not happy about what I was doing, because after months and months of therapy my clients, they were just looking the same. They were not improving their functionality, or they were not doing their lives, as I thought they could do if I did something different. So, I start looking. I went to congresses. I went to the International Society. How many different alternative conferences by the time in the Netherlands, and I started looking, for no one uses AAC with the people with the aphasia So I started also looking for papers, and then I could find Linda Worrall, Aura Kagan, Audrey Holland and I started dreaming. So, policies, EPA is my dream, and I used to say that Paula did what I wanted to do, and I was not able to do because I couldn't just quit my job As she did so, I started at the same time I started teaching in the SLP course and in 2000 the ICF appeared. I'm trying to jump, not to be too boring and everything made sense to me. So, I started looking for different ways of working even at the hospital, and I started bringing the family, bringing the family members to the hospital. I started them trying to train my patients with the total communication approaches. I tried to do my best, because it's not easy in a medical context, you know, to change minds and to change in. That's why, Paula, she's saying she came to me as a student. I was doing this this kind of job. I was trying to apply what I've learned from AAC and children with cerebral palsy, and I was doing some experiences with my patients And also suddenly I met some people in in the Isaac Conference that I told you about few minutes ago and I got involved in a multinational project where we were trying to develop a specific software for people with aphasia to communicate better with a portable AAC device, I can say I'm very proud to be involved in in that project. And so that's how I started. That's how I started. Jerry Hoepner: That's fantastic. It's just been fun listening to your story kind of a microcosm of things that have happened in other countries, I think, in terms of moving from the sense of the medical model isn't meeting the needs of the people that we're serving. I heard, you know, just a little bit of some of my conversations and everyone's conversations with Audrey over the years so we shift from a very medical behavioral approach to one that is more of a social functional approach. I can just hear those same threads kind of being woven into your stories. And just really, really interesting, I mean. Assunção Matos: Sorry. Sorry, sorry, Jerry. It's just to say that in Portugal no one was then I know no one was working in this swaying, in a more social approach. And Internet wasn't like it is today. So it was really hard to get access to the papers. But I also remember buying the book beyond the fascia from the connect in London and I got in love about connect. Yes, I still have it here also. And I decided, I said to my husband, I have to go to London, and I decided to go to the connect and see how they were working, and do the training the trainers course that they were that they were well, I was trying. It was hard, but I was trying to do it in a different way, because I could see my patients after months and months of therapy linguistic therapy it wasn't enough, and I felt I have to do something else. Jerry Hoepner: So insightful. And I think so many people have come to that conclusion about social approaches and the life participation approach. That Doing those impairment-based pieces alone is just not enough right? Not that they don't have a place, but alone. They're not enough. I think it's really great. I was thinking about Paula's thesis on communication partner training, and how that must just sprung out of all of these discussions, and certainly just central to a life participation approach. The other thread that I kind of heard from both of you is this idea of the dream that you started to have to create something to fill this gap? Maria, I like the way that you said that? You know you started dreaming, and Paula made that dream happen. Paula Valente: Maria knows that I am the crazy, 2 of us is necessary courage conditions of obviously, because as the sun sounds said I was married. But I didn't have children yet. So, at the time I thought, Okay, it's now or never, because soon I will have my family, and it will be very difficult for me to do this kind of choices to quit my jobs. Goodbye, my jobs! No, so it's now, and never. My husband was still in love with me so at the time was easy to convince him that I wanted to do that. I quit my job at that time. For the beginning of EPA. I was doing voluntary work. I did all without receiving anything, so that was not easy. Choice but it was necessary. A little bit of courage and a little bit of craziness like I was. We were doing something that's in Portugal. We don't. We didn't have a big organization behind us or supporting us. So, in terms of giving us the structure or the security to do something. So, It was like doing a house from the 0 from the ground, so didn't have any money at all. So, everything was started from the 0, and it was a little bit scary. And III admit that I was a little bit crazy, but I think and persistence, because the difficulties were, and they are so almost 9 years later it years later, 8 years later, we are here but this is a big adventure, and he in still is Jerry Hoepner: Courage, persistence, a little bit of risk taking I'm not going to say that you were crazy, but those are things that help you move it along, and I can see now why you so connected with Maura Silverman and the Triangle of Aphasia Project. Paula Valente: Yes, she was the biggest, when I started. I also. II remember very well to be on the aphasia, because the book, because when I started, my internship gave me the book to read, and I was like I come from the school with a medical model mindset, like language and speech, and she gave me the beyond the feature read this. And let's think about this in your internship. So, when I started to, okay, let's think about these programs. This center I went to connect also was my first experience with the center personal experience. And then I contact there numerous centers around the world, mainly in America, of course, but also some here in Europe and Australia to learn from them, to learn from the programs, to learn about the programs, about the social, the about the business model, how they sustain their activities, how they communicate with the community, how they articulate with another organization. So I did a lot of contacts, and I talk with many people and Maura was one of the most the most easiest person. I don't know how to say that sorry was very available, and she talked and she wrote a letter of support. She was incredible, so that was very important to me at the beginning to start to organize the structure of our programs. I can explain how we work at the moment. what we do at the moment. But I want to say also that many things have changed through the years. We learn a lot with experience, with the errors, with the feedback. That person, either. Persons with aphasia and their families told us so. We learn every year we did changes about the protocols, about the instruments about the programs, about the number of persons that we involve, the number of Anyway, many, many changes were done. And I think we will. We will do that kind of adaptations along the way, because they are very important to achieve our goal better. Okay? So, we have to listen to be aware of the impact, the results. The feedback is very important to getting better. Okay? So, what we do now is, I think our better version of the programs but I think maybe in 2 years we will be doing things differently. Jerry Hoepner: That makes sense and I think you approach this whole process in the right way by connecting to those people. And you know everything you said about Maura rings true, right that she's available, and she is excited to get me going and to share my knowledge. So why, so I would love to hear about what you're doing right now. I think you said 9 years it's been so... Paula Valente: We, 1916 was the founding year. I started the pilot project in 2015. So, I quick myself therebefore. So, it's almost 10 years in this adventure. It's all. But the organization is only 8 years. So, when our main objective with our association, our mission is to improve the quality of life of people with the aphasia and their families so to do, that we have to we organize our working 3 targets out all the targets. Population. Okay, audiences. Okay, we work with people we work with. And for people with aphasia themselves we work with and for family members and friends and we have we have to work to the community to a more inclusive and community communication accessible community. Okay, so we have activities actions in the these 3 main, groups. Okay, for these 3 main groups for the people with aphasia and the families we have. Hmm, 2 responses. Okay, we have resources and information we wanted to give them the more resources, more information about the aphasia, about how to leave with the aphasia, how to recover the path that the different teams that are important to them to learn more about what aphasia is And now to leave with the aphasia So we work a lot to offer to Japanese to offer resources and information in our websites in our social networks, with lives in the Facebook, with conversations online, with the workshops, with events, to talk about aphasia, to inform, etcetera. So, we work a lot to give them resources and information free for free. Okay, that's when before EPA, It was very difficult to them to find anything in Portuguese. Okay? In the Internet, or in another ways, in books or in La leaflets, leaflets. Okay? So, they didn't have many choices, many options. So now they have. If they go to our website, to our YouTube channel, to our net, Facebook, page, Instagram, they have videos. They have aphasia friendly videos. They have informational videos. They have testimonials. They have documentaries. They have many things in English that we put legend, subtitles. So, we work a lot in this field of information and resources. Okay at the same time for people with aphasia and families, we develop programs. Okay, you call programs in America and we in Portugal, we don't call that programs but we called like therapies. Okay, it's more the term for us. Your programs for us. We call therapies. We develop different therapies to give responses to the aphasia, the necessities, communication, necessities, and the goals of people with aphasia ask us for help. More concrete, more rehabilitation help. So, at the beginning we were doing only group programs. Okay, with many different types of groups. Okay? But at some point, we saw that was not for some people that was not sufficient because they needed help to communicate better, to develop resources for themselves, to adapt better to aphasia to work some psychology, psychological problems or family problems. So, the group conversational groups, communication pho, functional communication groups, they were good, but they were not, some of them to respond to their particular needs. Okay? And we started to do individual sessions with them also. So at the moment we have like a program, a response to them. So, it's like a service. Okay? That when people with aphasia ask for our help to live with aphasia, to have speech therapy. They want to. They ask us for a specialist. So, they see if a specialist team, so they ask us to help them. So, the first thing we do is an assessment, and the that assessment includes not only the language, the impact of aphasia on the language domain, but also in the participation activities like psychological states, family members, networks social network so we have, we do a global holistic assessment and then we have a reunion. We have a session that we call decision reunion. In that decision reunion we discussed with the person with aphasia in an aphasia friendly way. So, with communication, support to conversation, communication and we show the results. We explain what the evaluation show us and we discuss in in with them their main goals and then we make together a plan and that plan is not only to do things in EPA is not that focus. So, the plan is out. What I can do at the moment to feel better, to achieve my goals. Okay, something, some things they can do with our support. But other things they can do outside. So, we also give them another options. We talk with another professionals or organizations, and we help them to make decisions and go through the process. So, if they want to do something with us, we have only three objectives in the center of the process. So, everything they do they do to achieve the objectives that were clarified in that discussion in that conversation initially and then we start doing. They can do with, not with us individual and group sessions of speech, therapy, psychology, neuro psychology, communication training. All of these approaches are personalized. They follow the pace of the evolution of the person and their needs. And we also and they are all very different. So, some of them do only individual start from start doing only individual sessions. Then they go to the groups. Some of them do only groups, some of them do groups and individual. It depends on their path, their situation, their goals, and the in the continuum of care. So, where they are okay, so with the family members is the same. They are very involved since the beginning, so we will offer to them individual or group sessions that go that will help them in their needs. So, from the beginning and along the way we are always talking with them and give them what they need. So we have also caregiver groups and communication training groups and communication training individual sessions everything to promote adaptation to aphasia, to improve the relationships, the well-being, the success of interactions. We promote also meetings with people with the aphasia, and there, another with them. Sorry. We promote. Provide also meetings with another family members and in in group sessions it makes sense. Sorry about my English. Jerry Hoepner: Totally makes sense, Paula. Well, you have a just a breadth of services that you offer, and I know those have evolved kind of over the years, but very collaborative, very person centered. It seems like, you've really thought this through. You've obviously brought upon a lot of resources to do that. A couple of things I wanted to know. One is you mentioned those video resources and other resources. We'll make sure that those are available on the show notes, so people can connect and check those out even if like. I watch some of them and just to get a little taste of what they look for obviously, I don't switch Portuguese, but just valuable just to have those resources. The other thing I'm wondering about is what's the area that you serve. I mean because it seems like you may be one of the only collaborative social programs in your area. Paula Valente: Yes, we at the moment. If you want to say something, please interrupt at the moment we serve. All the country we are. We are not a big country, but unfortunately, people with aphasia in Portugal they don't have many choices, and after the rehabilitation centers or the care the main public centers that in the acute phase they go, they get, they go there, and then they go home. When they go home, the choices to continue the rehabilitation are very few. And we in Portugal we are the only organization that are doing this work, and specifically with aphasia. We people with aphasia. So, we receive calls from all over the country and, but we are in Portugal and that is the second main city in Portugal. So, we have Lisbon. That is the capital, and then we have Porto is another big city, but in North and we are in Portugal. So, we can't see everyone in Portugal, mainly the people that live near us but with COVID we started to do many teletherapy and now we have almost 50 people with aphasia doing online services. So, at the moment, we have also online groups and individual online sessions and consultation sessions that are like a specialty consultation that we do to that families that only want some someone who helps them to decide things to understand what to do next, and that help us help them to decide what to do. So, we do a lot of consultation sessions that are more periodic and we go through. We. We've talked to them through the year to see how things are going. and to give them more information about what they should expect from the rehabilitation, from the therapist, from the communication, and give them psycho education, but also orientate them. We do a lot of that kind of in-service. Okay. So now, we have many people in our presential activities in our center. But we are the only organization in Portugal. So many people from other cities are asking for help and we are trying to go to Lisbon to create some groups and some enlistment. But Lisbon. But it's something that takes time. Okay, so it's another something that will take some time to happen. And this year as soon sound, Maria will start a group also in the university. So, it's something this kind of different points of presential group. Presential groups. I think, will be the next step to give other options to the, to the persons with aphasia in Portugal. Jerry Hoepner: Wow! What an incredible breadth of services, and literally in in terms of area. I can't imagine serving all of the people with the face that in State of Wisconsin, which is probably smaller than Portugal. So that is that's really incredible. And wow! What a service! And I want to shift gears a little bit and talk about training professionals and students, because I feel like that might be an important step for having a broader network of people that concern people with a phage throughout Portugal. Maria, are you willing to talk a little bit about some of the trainings that you've done with professionals and your connection with the university and training students? Assunção Matos: Yeah, yeah, I can only tell you about my experience. There are other schools SLP, from my perspective. What I tried to teach my students is a bit of every type of approaches, because in one side, I know that when they go to their practices, they will find some places where the medical model is still very active, so I have to prepare them in order to know how to work with people with the phase in a more linguistic approach. But at the same time, I try to tell them about social approaches and about live participation approach. And II it's not easy, because I don't have much time to do it. But I try, you know, I'm a really big fan of the ICF so I try to prepare them to know how to work according to the ICF and how to work in the different domains the ICF suggests at the same time. We have established the Protocol with the IPA at our university, the University of Avairo. So, my final students, some of them those who want to work and wishes to do their practices in the field. Some of them are going to the EPA for 16 weeks and they do their practices there, and also during that that the time they have to develop an investigation project. So, most times I try to see with Paula we share the needs of the IPA, and we try, you know, to go and to work with the students and try to do some investigation that has an impact for the EPA and for the colleagues who work there. And this is this is great work. At the same time, just to finish me and Paula, we have been doing the SCA. The supportive conversation with adults in Canada and since then, we are doing lots of lots of workshops with the health professionals in many different hospitals. I'm also trying to do some investigation about it, because we don't have it in Porto. Well, so I tried to involve my master students and we are, you know, working together, trying to change minds trying to change the settings in order to people with the face you to leave better from the beginning, when they wake up in the hospital. If they have their health professionals prepared to communicate better with them. We read it from other countries, and which really believe it. So, we are trying also to make some changes and I've started also last year. Doing some SCA work with the other students from other courses. In my university we have nursing students. We have physiotherapists. And we have radiology students. So, at the beginning of the of the year we are doing some online courses to prepare them before going to their practical settings and communicate with the people, with aphasia, or with other communication disorders. So, this is my experience. This is what we are trying to do. Jerry Hoepner: Such important work I can't imagine. I've had so many kind thought leaders and researchers and clinicians that have guided me in this process, and that it wait so much of that groundwork out. So, I just can't imagine building that from the start. And what you're doing is so important. Assunção Matos: This year we are planning to start group therapy with people with the face, you know, because I am at the moment I am 100% at university. So I left my hospital and I really miss my patients and I miss, you know, to do the to be an SLP in practice And because there are not many groups in the country, as Paulo was saying. So, we are trying to organize group therapy for people with aphasia, maybe to do also some work with their family members and the idea is to do the group therapy and trying to do some investigation at the same at the same time. Now it's better going to be the challenge for this year for me. Paula Valente: I just want to say that at the beginning we were offering some workshops and training for the professional health professionals about aphasia, about how to communicate, and other topics that are important from for them to manage better the person with the aphasia since the beginning and we started to see that the health professionals. They don't have time to do training and they don't have money they don't have. They don't want to invest in this kind of training. They want training, but they want that accessible for them so it but the accessible means free without costs and preference in their setting. So, we have to go there to give them the training, because if they have to go some an another place, they don't go. So, where LPA was finding these things and was okay, what we can do. So, one of our works was to find funding programs to fund 2 projects that are, that the main objective is train, the health professionals to communicate. And so along these lines, we did a lot of free training in settings like hospitals and rehabilitation centers, and main mainly financed by those kind of funds. Assunção Matos: Let me just highlight that we are not doing this training alone. So, we are involving people with aphasia in the training. So, we, me and Paulo, we explore the more theoretical parts and then we have people with the aphasia, with us who are the trainers in, you know, in in practice. And II also would like to highlight that this is something that we have tried from the beginning to involve people with the phase in their family members. our Vice President is a woman with the aphasia we have some family members that belong to the Board of EPA. And we from the beginning. The idea was, as Paula already said, work with them and for them and I think this is something that is really is really important. And it's very, you know, for us it's very good. It makes us feel very good about it. Jerry Hoepner: Totally agree. And I mean, it is really impressive that the amount of work that we've been certainly important work. And I get the feeling that the 2 of you probably don't sleep a whole lot. You're certainly doing a lot. I don't know a lot of good things, and you're doing them the right way. So maybe I can shift gears one more time. To talk a little bit about the business end of things. cause that's a part of building from the ground up. Would either, if you like to start talking about your model. Paula Valente: Yes, since the beginning we wanted to be a social entrepreneurship project. So, what is that? We want to solve a social problem that the public services weren't solving. So, we have innovative responses, services, resources but we also have business model near underneath that because we wanted to. We thought, and I think I'm sorry about my English. I can't I my English day. II feel like I have a aphasia because it's like II know everything. I know what I can. I won't say, but I can say it. I don't speak English every day, so I'm sorry I'm not in the academic field, so I don't have many, many opportunities to train my name, my English, what I am saying our goal is to be sustainable and I personally believe and I think that the EPA boards are completely aligned with this is that the solutions that EPA offers to people with aphasia are not only our responsibility to sustain, to provide is something that is a responsibility from all is responsibility. Okay, I, Paul, sound the board. All this, the people involved that we have the responsibility to, because we started that. So, we have the responsibility to provide the organization, and guarantee that all is working. But in the end, the solution doesn't depend only on EPA, we need the community to achieve our goal. We need the people and their families to achieve our goal. So, everyone as responsibility in this this is, I don't have anyone with aphasia in my family. I could have aphasia someday but is not only my responsibility to bring this to the community, or somebody that has aphasia is our responsibility, because in the end some of us really have aphasia. My family member, my neighbor, also is our responsibility. So, when we started this organization, the social organization. We want it to be sustainable. But we don't want it to be depending on funding on the States because many of our social organization in Portugal. They have the tradition of being funded by the States. They are. They have a lot of funding that comes from the States and that is a problem, because states they don't have many money to owe it. So, they don't do the better job because they don't have money sometimes. Sorry about my English. So, we thought, if you want to do better than the State, we don't, If they have a responsibility. We want them to participate, but they don't have the only responsibility we have the wrong responsibility. But the piece, the person with the aphasia and their families that are beneficiating from our services. From these services. From this organization they also have to compensate. And as organization, we have to be aware that to be accessible to all okay, we have to be open to different kinds of participation. So, people with aphasia will compensate will pay for some services in different ways, in different measures and that was the difficulty we had to the term to at the beginning. We have to think about how to do that. So, at the moment, we have different recipes. Jerry Hoepner: If we put maybe multiple different funders sounds like that are contributing. Is that what you mean? Paula Valente: So, we go get money from different our services, clinical services, our programs group programs, okay and individual programs. So, people with aphasia pay for part of it. If go do fundraising to pay another part and our and our objective, our goal is the community, the municipalities and the state pay another part. So, we don't have to lose our sleep. Doing fundraising is very difficult in Portugal, I think, from what I learned from other centers, our reality is different in Portugal. We don't have many we don't have access to fundings and programs and investments. And the philanthropic minds is not something very easy in Portugal, very available. So, we do fundraising in Portugal and do fundraising to help people with the aphasia. What is aphasia? What is that? So that is very, very, very, very, very difficult. So, we need to involve people with aphasia. So, they pay for their services for our services. They pay for our therapies, but they don't pay for resources. They don't pay for information. They don't pay for workshops for some of if events that we do that are open and they are invited to come. But therapy with therapists that we have to pay. They have to pay also we have services. We sell courses some of online courses. We did. In our websites, you can see mainly in Portuguese. But we have online courses with very good programs, very good professionals, international colleagues that help us to do the courses. They are another source of income, not a big one, but they help. We did a translation of some communication books from Aphasia Institute, and then we sell them to give us also some in income. So, we have members of our association and pay a contribution. Yes, like every year they pay a contribution. So, we have, some associates that do pay an annual contribution. We do a lot of fundraising and we try to develop more services to, not to people with the aphasia, but professionals that give us income to sustain the organization. So, it's a hard work. But it's in the beginning, because we, it's difficult to involve the municipalities and the States. In these solutions we have to prove that they are better, or they have major impact in in the lives of the persons with the aphasia, but also in their pockets the state pocket, because we have to prove that our support, our kind of approaches make more difference and the people with the aphasia that stay in the State. The public services consume more resources during more time And they don't go. They don't achieve their goals in the end so we are now trying to show the Government our model of work may for the in the future they maybe support some incorporate some of these approaches in their public services. So, it's another way to support. Jerry Hoepner: Yeah, that's it. I was going to say, yeah, that's a lot of work to do. I mean, you're providing all of the services you're providing a lot of the fundraising and providing a lot of education to students and professionals throughout the country at no charge in many cases. So certainly, this is a grassroots ground up kind of work. it has been a really fun conversation. And I think we did continue this conversation for hours. It sounds like, but unfortunately, we have to close it up at some point. I just want to see if there's any last thoughts that you want to share with our listeners. Assunção Matos: I just want to say that it looks like it is a lot of work but I really believe in what I'm doing. I still dream Paula is doing one of my dreams, but I still dream that in the future, if I have aphasia, I will find one of my students doing the best job with me. This is my, this is my dream. That's why I believe so much in what I'm doing in And I'm always trying, you know, to move on into and to do different things and best things because I really don't want to face the difficulties people with the aphasia yet face in Portugal, because it's different to have aphasia in Portugal, or to have aphasia in Australia, for instance and I want to do my best job so I can enjoy it in the future. Paula Valente: I just want to say it's really worth working on a live participation approach, because it really makes all the difference in the people. It's an adventure but it's worth it. And I hope that this conversation inspired other colleagues to do the same, or to continue doing the same. Jerry Hoepner: Absolutely. I think that's a great way to end. Thank you both so much. You've been just great to have this conversation with. Really enjoyed it, and I know that our listeners were will enjoy it like you said. I hope this inspires someone else to take on this kind of work. So, thank you so much. Assunção Matos: Thank you, Jerry. It was a pleasure. Paula Valente: It was a pleasure. Thank you for the opportunity. Jerry Hoepner: You're welcome. Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access. Resources: Online courses with national and international lecturers: https://ipafasia.pt/formacao/ Mobile application for communication support and functional and social interactions: https://ipafasia.pt/aplicacao-movel-da-afasia/ Info-graphic videos: https://ipafasia.pt/videos-informativos/
Episode #111: Sharing Strategies to Successfully Support Reading for Individuals with Aphasia: A Conversation with Kelly Knollman-Porter (00:52:17)
I'm Ellen Bernstein-Ellis, Program Specialist and Director Emeritus for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA's strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Kelly Knollman-Porter, who is a 2023 recipient of a Tavistock Trust for Aphasia Distinguished Scholar Award, USA and Canada. She will discuss how her interest in auditory comprehension and severe aphasia led to her work on reading comprehension. Guest bio Dr. Kelly Knollman-Porter is an associate professor in the Department of Speech Pathology and Audiology at Miami University. She directs the Neurogenic Language and Cognition lab, where her clinical research focuses on the development of supports and strategies for adults with aphasia to facilitate reading and auditory comprehension. Her research also explores the subtle reading processing differences exhibited by adults with aphasia through eye tracking technology. Dr. Knollman-Porter directs the Miami University Concussion Management Program, where her secondary research focuses on the development of assessment measures and treatments to manage the cognitive and communication challenges often associated with mild traumatic brain injury. She has over 30 years of experience working directly with adults with acquired brain injury. Listener take-aways In today's episode you will: Learn about how wanting to help clients with severe auditory comprehension challenges motivated our guest to pursue her doctoral degree after 15 years in clinical practice Consider some of the challenges SLPs face in assessing reading in clinical practice using current standardized measures and learn about some advantages of incorporating a reading questionnaire and close observation for getting a better understanding of your client's individual reading style, preferences, and needs. Explore the contribution of text to speech (TTS) to the dual modality model for supporting reading success at the book level and some of the critical factors to consider when implementing this strategy with clients. Investigate how eye-tracking technology can help us gain insight to an individual's reading strengths and patterns. Show notes edited for conciseness and clarity Ellen Bernstein-Ellis 00:10 Kelly, let me just pause and say welcome! Thank you for being here. Kelly Knollman-Porter 01:02 Thank you for having me on the podcast. I'm so happy to be here. Ellen Bernstein-Ellis 01:05 I am so excited you're here today. And as we talked, we always have a pre-meeting where we get to plan what we want to talk about in these podcasts, and as you know, I'm so excited to talk about book clubs and reading strategies. Thank you so much for being our guest today. Kelly Knollman-Porter 02:23 Thanks again, Ellen. And I have to thank you for your foundational work in the area of reading. You can look back at a lot of the articles that myself or my research team have published and we reference you quite a bit. So thanks for your work also. Ellen Bernstein-Ellis 02:39 Thank you for that kind, kind mention. I was very fortunate to partner with Dr. Roberta Elman to create the Book Connection at the Aphasia Center of California and be part of that body of work. We like to start with an icebreaker to give our listeners a chance to get to know you. I will open by asking you to share how the Tavistock Trust for Aphasia Distinguished Scholar Award has or you think will impact your work? Kelly Knollman-Porter 03:06 First of all, I'd like to just take a moment to thank the Duchess of Bedford and Nicole Campbell from the Tavistock Trust for giving me this honor. I was just so surprised and excited to hear when I was given this award. I had the lovely opportunity a couple of years ago at a Clinical Aphasiology Conference to meet both of these amazing women. I've been so impressed by the work of the Tavistock Trust. It's not just work in the UK, they have spread this out across the globe. They really have done so much to not only help people with aphasia, but also help educate the public about aphasia, help us as clinicians get connected, and as researchers get connected in order to stay abreast of more recent research that's coming out in terms of helping people with aphasia. I am just so thankful and appreciative of receiving this honor from this great organization. But how will it help me? I can honestly say that right now we're in the process of starting a new study and through the support at the Tavistock Trust, we are going to be able to provide funding to help support these research studies and hopefully get some of these funds back into the hands of our participants. I'm excited to keep that research moving through their support. Ellen Bernstein-Ellis 04:42 That's great. That was a really nice and gracious recognition. Yes, we're so appreciative of the work the Tavistock Trust has done. How about if we open by sharing a little bit about your professional journey? I think you considered yourself a non-traditional doctoral student. You said you returned to get your doctorate after about 15 years of practice. Tell us a little bit more about what you were doing when you decided to return to your doctorate. And what were your passions that inspired you to return to school? Not an easy decision, I would guess. Kelly Knollman-Porter 05:19 No, it wasn't. I can honestly say I wasn't looking for it. I was very happy in clinical practice. I worked in a hospital for 15 years before coming to academia. I loved working in the medical field. I loved collaborating with other rehabilitation professionals, dieticians and physicians. I was very happy working in these environments. But Miami University actually reached out to me. They were wanting to further develop their adult program and they said, "Hey, will you come to academia and share some of your clinical knowledge and also lead the Miami University Aphasia Support Group?" They knew I had always had a long interest in working collaboratively with people with aphasia and clinically. So they asked me to come. I have to admit, I turned them down a couple times. And then finally, I made the big plunge and said, "Why not try it?" I wasn't really seeking it out. Originally, however, I was reaching a point where I was becoming frustrated with some of the reimbursement issues we were facing clinically. When working with people with aphasia, I sometimes felt like insurance was dictating how much treatment I could provide and how long I could provide it, even though I felt like many people could continue to make progress. I just felt like my hands were tied, and I was restricted. That was frustrating to me. I have to admit, when I came to academia, I was thinking, what can I do in order to explore this further? How can I potentially contribute to the research base in order to provide evidence to show that people with aphasia can continue to make progress, not just months after diagnosis, but 5, 10, 15 years? Because as a clinician, we've all seen it, absolutely. We know that people with aphasia want to continue to actively participate in life activities. And they can, if given the opportunity and the support. So, when I made that transition to academia, I quickly made the decision to go back and get my PhD. Primarily focusing on clinical research, specifically with people with chronic aphasia, Ellen Bernstein-Ellis 07:52 I am sure that there are listeners out there who may be sitting on that fence as well thinking, Should I do it? Should I pursue this doctorate? I just want to acknowledge and honor the challenges of being a doctoral student, especially while also being the parent of young children, but I just think it should be recognized. I was wondering, what was the best advice you got from your mentors? Because I'm sure you reached points in that process where you wondered, was this the right thing? And I want to support listeners who are out there thinking, "Can I do this? Should I do this?" Kelly Knollman-Porter 08:30 It definitely required a team. When I decided to go back get my PhD, I had a 10 year old and a five year old. That just requires a lot of work, going to things after school for them and keeping your family a priority, but yet still working full time getting your PhD while commuting. And coming back, a special shout out to my spouse, who helped me keep all the balls up in the air. My family came along. I had amazing support from my in-laws and my parents, in terms of helping pick up the kids when needed. But I'm not going to lie, it was a challenge. And there were times when I wanted to throw in the towel. I wanted to say, "You know what, this is just too much for me to do right now." But I did have people that came alongside me, that kept encouraging me, saying "It's okay, stay the course, what you're doing is good, and don't lose faith." I have to give credit to Aimee Dietz. Dietz was my dissertation chair and she was very encouraging, supportive, and understanding that I was a mother and I had a life outside of PhD and work. She respected that. It was funny. She ended up getting pregnant at the same time and had her child. So I think we kind of supported each other through that. But one thing she said to me that I always remembered because she knew I loved clinical practice. I was like "Amy, maybe I should just go back to clinical practice?" And she said, "Kelly, you realize that your research is going to touch more people then your clinical practice." Not downplaying clinical practice at all. But she said, "Your research has the potential of spreading information not only across our small geographic Midwest area, but also across the country and across the world." Ellen Bernstein-Ellis 10:35 What a wonderful piece of advice. No surprise, what a lovely mentor to have. Kelly Knollman-Porter 10:39 Absolutely. I think I told you this before, there was one very difficult day that I was having. My family was sitting around the dinner table and the house was a mess. I had grading to do and I said to my husband, "I'm going to quit, I'm not going to get my PhD." And my 10 year old daughter was sitting there and her name's Anna. And she said, "Mom, what would you say to me if I told you I was going to quit something?" Ellen Bernstein-Ellis 11:11 What a wise 10 year old. Kelly Knollman-Porter 11:13 And at that moment, I realized that people were watching and other women might be watching and saying, "Hey, stay the course, persevere." I am proud enough to say that that same daughter just recently graduated from vet school with her DVM and I hope that my perseverance helped her persevere also. Ellen Bernstein-Ellis 11:36 I love that story. Thank you for sharing it with our listeners today. Your doctoral work originally focused on the treatment of auditory comprehension in severe aphasia. I know that was one of your clinical loves. I want to recommend to our listeners since we can't cover everything today, your 2018 article, we'll put it in the references of the podcast show notes, about intensive aphasia auditory comprehension treatment. Why don't you share how you became involved in reading comprehension? Because you started out in this auditory comprehension world, right? Kelly Knollman-Porter 12:13 Absolutely. Well, again, I really feel like comprehension is instrumental. There's been some work done that says people with auditory comprehension deficits, the more severe the auditory comprehension deficits, the greater risk of decreased success in rehabilitation outcomes. So I always had a passion for exploring auditory comprehension and different potential treatments to facilitate comprehension with people with chronic aphasia. But Aimee Dietz gave me that opportunity to do that. But it was interesting. During my dissertation process, I actually found out that my son had a pretty significant dyslexia. We kind of suspected it with him growing up, but then when you hit kindergarten, you really start to see the reading challenges kind of surface. And I remember talking with Amiee about reading. During that time, we were able to get my son connected to a great reading program that explored different compensatory supports to help facilitate any reading process, one of which was text to speech technology. And at that time, Amiee was collaborating with Karen Hux from the University of Nebraska on a potential reading study. And she says, "You're so interested in reading right now and you're interested in aphasia? How about combining those two loves, and getting involved with a reading study?" And the rest is history, that kind of landslide into a lot of research collaborations over the past 12 years that I've been involved with. But my son Eric did inspire that because seeing his success with text to speech with dyslexia, it made me think, why not text to speech with people with aphasia? What about that dual modality presentation? Ellen Bernstein-Ellis 14:15 That's great. I also think you're showing us yet again, how often our personal journeys inform our research and clinical paths. I think that's a beautiful example. Reading has been repeatedly shown to impact quality of life for individuals with aphasia. They tell us that so often, but it's often challenging for clinicians to allocate the limited clinical time to assessment and treatment. Reading treatment takes a while to do so. I feel like I'm asking you to address the million dollar question here. But what are your recommendations on how to manage this challenge? And what are some of the challenges in assessing reading? I've alluded to the time, but why don't you elaborate? You've done a deep dive here. Kelly Knollman-Porter 15:06 Absolutely. And it is challenging because first and foremost, I find that a lot of our standardized assessments will try to tap into assessing the reading challenges, but it really only scratches the surface. I haven't found a really great standardized assessment that I can use and rely on that really helps direct my treatment course, You have to use a variety and you have to do some that you just make up on your own based on how exactly that person is responding. But generally, if I'm going to assess, I first have to start by having a really in-depth conversation with the person with aphasia or their care partner. First of all, you have to find out if reading is of interest to them, of course,and the types of reading materials that they like to engage with. I think about people in our Miami University aphasia support group. I have one individual who would read a novel a week prior to her stroke. I had another person in our group who said to me, "Kelly, you know what? I never read books." It was not something of interest to him. You have to treat those two people very differently. You have to find out what their interests are. That's always where I start--with just an interview and talking with them about aphasia. And then I talked to them about their interests in terms of "Are you comfortable with technology? Are you not comfortable with technology?" I actually give them reading tasks. When I assess reading, I of course, start at the word level, and then creep up to the sentence level and add more complexity and length. But when I give them a paragraph to read, I don't just look at, did they get the answers correct or incorrect? I'm not only looking at accuracy per response, but how long does it take them to process that multi sentence information? So for example, if I gave them a four sentence paragraph to read, I watch them very closely to see how they're attacking that reading task. And that doesn't take that long out of your assessment time. I watch where their eyes are moving. I watch to see if their eyes are regressing back within a sentence while they're reading. And if I notice that they're really struggling, I also say to them, "Tell me, what are you having difficulty reading right now? Can you point to the words that you're struggling with? Can you point to the words potentially that you're skipping? Tell me about this process, and try to tell me how it's different from the way you read before." And sometimes we underestimate what people with aphasia can tell us about their reading experiences. I have found that a lot of the people that I have worked with can be very specific about what they're having difficulty with. Now, there's always that small population that might not have the awareness. But it's still the majority of them that can. I was just working with a gentleman last week, and I was like, "Show me what you're having difficulty with." And he pointed to the words that he struggled with, and that helped me understand. Are you having more difficulty with content words? Are you having more difficulty with verbs? Are you having more difficulty with articles? What is it about this process that's making it hard? Because many times people with aphasia can read that paragraph very slowly and very carefully and end up with a high percentage accuracy in terms of performance, but if it's taking them five minutes to read a four sentence paragraph, it is too fatiguing, it's too much. And they're going to end up avoiding getting back to reading things that they want to read for pleasure. Ellen Bernstein-Ellis 19:18 Right, because the burden is too high. Kelly Knollman-Porter 19:21 Because the burden is too high. I really feel like if we can look at these things clinically, we just need to take a little bit of time to talk to the people and actively watch how they're attacking that reading task. Ellen Bernstein-Ellis 19:37 If I circle back briefly to the impact reading has on quality of life, your 2015 article does a beautiful job of describing the contribution of access to reading to the quality of life. This was a qualitative study that interviewed six individuals with aphasia to hone in on their individual reading preferences and supports. But before you describe these results, I'd like you to share with the listeners your reading assessment survey. You just talked about listening carefully and asking questions. I think that's harder than you're making it sound. But you've given us this tool that is an amazing springboard. Many of us probably have just informal tools, lists of questions that we've developed on our own over time. But in that article, you actually attach this beautiful, clinical tool. How did you go about developing this initial reading survey that you do? Thank you for including that in the article. That was wonderful. Kelly Knollman-Porter 20:46 Oh, absolutely. A special shout out again to my research team, Karen Hux, Sarah Wallace, and Jessica Brown. We spent many hours of our meeting time creating this questionnaire. Ellen Bernstein-Ellis 21:02 But that's great, these great clinical minds all coming together, embracing this questionnaire, planning to put it together, that's beautiful. Kelly Knollman-Porter 21:10 Absolutely. I have to encourage everybody to try to get to be a part of a research team. We're stronger together than we are in isolation. I have the utmost respect for each of these women. They have taught me so much. We each brought to the table unique strengths. All four of us are unique in our own special way. And like I said, I've learned so much from them. But we bring that when we're creating our research studies. We always start with a rough draft. And then we question each other. We say, well, I've seen this clinically, or I think about this from a research perspective. I definitely brought to the table my clinical experience in working with people with aphasia, but then Sarah did also, so too Jessica, and so too Karen. Just working through what we saw were challenges that people with aphasia might experience and what we've found clinically to develop that questionnaire. Ellen Bernstein-Ellis 22:11 So, you created this questionnaire with a variety of sections that helps someone systematically go through understanding that person's reading preferences and strengths and try to get a sense of what their profile is, right? That's your starting point. And then you take it from there. Kelly Knollman-Porter 22:28 Exactly. What do you like to read? Do you like to read text messages? Do you like to read novels? Where do you like to read? How do you like to read? Do you like to hold a book versus do you like using technology? What are all the different ways that you personally like to read? I can honestly say one thing that we learned from the qualitative study, I know I'm jumping to that, was everybody has their own unique reading experiences. There's not going to be a one size fits all approach to the assessment or the treatment of anyone with a reading challenge. You will not find a cookbook approach to this. You have to do it on an individual basis. And if you do, I think the outcomes are going to be stronger. Ellen Bernstein-Ellis 23:20 Let's circle back to that 2015 article, we'll jump back and forth. Could you describe some of the key takeaways from that study? Maybe you could explain why you think that dual modality model, which we started to allude to earlier with text to speech, is so important to supporting reading success? That's part of my takeaway from that 2015 article. Kelly Knollman-Porter 23:45 I wish I could tell you that in 2014, when we were initially planning this qualitative research study that we were thinking about TTS. I was from a distance, but we weren't actively looking at text to speech (TTS) at that time. But one thing that my colleagues and I felt we had to do first, if we were going to explore reading research more, we had to go to the people with aphasia to learn what they wanted. So, before we took our own personal opinions about what we thought people with aphasia needed in terms of reading, we thought we should start with a qualitative study and find out what they wanted and what they needed. And you know what, that was such an important starting place for our research. Because again, we found each of the people that I interviewed had their own unique needs, but yet every single one of them passionately wanted to read. They wanted to get back to reading and they wanted to read books. They wanted to read books about romance and they wanted to read about horror stories. I'll never forget one of our participants. She told me that she liked to read Stephen King novels. She laughed and says, "Kelly, you couldn't handle that." And it's true. I don't like those scary stories. But, they wanted to read. They want to learn more about aphasia, but they just want to read what everybody else is reading. Ellen Bernstein-Ellis 25:23 You want to read what your peers are reading. I will always remember this story where one of our book club members at the Aphasia Center of California was so excited at a book club meeting because he had taken the book that we were reading, I think it was Shadow Divers at the time, to the golf course. No one usually approached him and chatted with him. But he actually had a couple guys come up when they saw the book and engage with him in discussion. So it became this beautiful bridge of connection. I can't communicate as well, but they had this awesome commonality to share. It was just what they were interested in. So that example of just wanting to do what your peers are doing because there's such joy in being part of that reading community. One of my favorite parts of that 2015 article is also the clinical reading framework that's on page 19. It helps a clinician start to think about how to implement reading supports and strategies. I think that is a beautiful contribution. Could you describe that model for our listeners? Kelly Knollman-Porter 26:30 Sure, of course, you start with the questionnaire, you start with asking them what they want to read and what they like to read. And then you do an informal assessment. And then, as we walk through that framework, you establish personally relevant goals, based on their unique reading needs and experiences. But then as you're considering treatment, you have to think about lots of different avenues that you can potentially go down. And that's going to be based again on their needs. Specifically, are they interested in technology? If they're not interested in technology, then that's going to take you on one route, but if they are interested in technology should you consider text to speech? If they're not interested in technology, will picture support facilitate their understanding of the written text? So basically, looking at personalizing the treatment approach. And going through a process of trial and error, looking at the length of the reading that should be used, or the complexity of the reading materials, and again, gearing treatment towards their unique personal needs. That's kind of what it's all about. Ellen Bernstein-Ellis 27:50 You really provide a very clear framework, and I think that always helps us with our clinical thinking-- to know what questions to ask and how to break it down. A wonderful follow up to that 2015 article, is the 2022 article that compared comprehension, processing time and modality preferences for individuals with and without aphasia when reading books using text to speech. Could you start by explaining or describing what motivated your work to be at the book level? So often, we start with words and then sentences, but here, you took this big, big leap and started at the book level. Kelly Knollman-Porter 28:31 I'm going to swing back to my 2015 article real quick, if that's okay. Because I have to admit, one of the participants in that study gave us direction to go the TTS route first. So, of those people that we interviewed in that initial qualitative study, only one of them was reading more after his stroke than before his stroke. And this gentleman, he was in his mid 40s at the time, and very into technology. I remember when we were doing the interview with him, he was adamant. He was like, "Kelly, text to speech works!" So of the six people that we interviewed, he was the one that inspired us to start looking at text to speech more-- that eventually led to all these other studies. Because he said, "I've read a novel." He laughingly told me that he read Fifty Shades of Grey, and he also was able to get online and, through text to speech, order things through Amazon or different mechanisms like that. We started exploring text to speech technology and the degree to which it could help from a dual modality presentation. So that kind of got us on that track. My colleagues and I explored the use of text to speech at the sentence and paragraph level to see if it helped. We really had mixed results, I have to admit. We were finding that sometimes it helped some people, but it didn't help all people. And we were almost getting a little frustrated with what we were finding, and we were feeling that we were hearing from clients. I have to admit, I've run into clinicians all over the country and they're like, "Yeah, text to speech works." But we weren't seeing those strong outcomes with our research. It was right around the pandemic time. I said to my colleagues, "We're gonna have to take a big leap here with our research, instead of just looking at the sentence and paragraph level, why don't we just jump to books?" We know that people with aphasia want to read books. We have a feeling that the text to speech might help them at the book level. We know that this research is going to get a little muddy, there's going to be a lot of variables that we can't control for, but let's try to do a study based on what people with aphasia want. So we took this big leap of faith and did this book study. And this one was where we decided to control many factors in terms of having them read a certain section and then using text to speech and then read another section and then use text to speech for another section. There was a lot involved in it. But that's ultimately why--because people with aphasia told us that they want to read books. Ellen Bernstein-Ellis 31:45 I know we're going back and forth. But these topics are all integrated. Let's take a moment and ask you to talk a little bit more about text to speech and what you've learned about using it for individuals with aphasia. You started to again allude to some of the things, particularly the variability across people. There are pros. And there's cons. Before we dive in, I want to refer our listeners to this nugget, this beautiful little gem, that I found just last week. It was in the March 2023 ASHA Leader, and it's with your co authors Sarah Wallace and Karen Hux. The article lays out some of the considerations to take when introducing a client to text to speech technology, like how to do it in a systematic way, how to explore and allow for the individualization that is necessary, that practice is necessary. It's a great clinical perspective article. We'll put the link in our show notes. But what do you want to say about the lessons learned with text to speech? Kelly Knollman-Porter 32:47 Absolutely. It takes practice when you're considering using text to speech with a person with aphasia. First of all, you have to see if they're interested in using technology. If they have access to technology, that's your first question. And then, can they access the device physically? So lots of things have to be taken into consideration. If they show interest in using the technology, you need to sit down with that person with that technology that they choose. If that's an Android device, if that's Mac device, if it's a laptop, if it's an iPad, if it's a smartphone, you have to bring their device to the table and see to what degree they can access the necessary text to speech applications that are needed in order to use it successfully for reading tasks. If they cannot access it, then you need to take a step back and create an instruction manual to help with pictures and aphasia friendly formatting, in order to give them a step by step method to access that technology. So often, we start to use technology intuitively. We think everybody else should be able to use it that easily. But we have to make sure that the person can turn the device on. A lot of older people also have decreased circulation in their fingertips and sometimes when touching the app, they can't get it to trigger, so they have to warm up their fingers before accessing it. Ellen Bernstein-Ellis 34:33 I'm so glad you mentioned that because I can actually personally relate to that one. Because these nuances are so important. , I don't know if they're nuances, these challenges that you may not realize until you actually sit down and work with the person. Kelly Knollman-Porter 34:48 Absolutely. So when I know someone is interested in this, I always start with pictures--a detailed instruction book that shows you step by step what you have to touch in order to access that TTS system. I put it in a binder with a plastic coat covering over the top, so that they can have that manual sitting right there by their device. And then we practice with it. We say, "Okay, now I'm going to show you how to access this text to speech technology. Now you show me if you can do it using your manual." And we go back and forth. We're not even to the reading part yet. You have to first access the system. If they show that they can then access it, then we actually get into playing with the different TTS features. So anything, from the speed of the voice presentation on TTS is crucial. You have to find that ideal speed for that person that's not too fast, and not too slow. That's going to help their processing. So, playing around with the speed. Also playing around with a voice. Do they want a male voice? Do they want a female voice? Do they want one with an accent? You'd be surprised people are very particular about the voice that they want. And then, also exploring the use of highlighting. Do they want to have highlighting? At the single word level? Do they want each word highlighted as it's read? Or do you want the full sentence highlighted? Or do you want no highlighting, because some people don't like the highlighting. So there's a whole sequence of steps that you need to go through in order to determine if someone is going to be able to access the TTS system, and then, if they're going to be able to use it successfully. And that does take time. And it takes experimentation and setting up a system for a person, letting them try it on their own. And then having them come back and ask, "Okay, what did you like? And what did you not like? Can we change this at all?" So it can be adaptive, it might change over time. We don't want to just give one structured TTS system to all people. It won't work. Ellen Bernstein-Ellis 37:17 I think that dovetails beautifully with my next question, which is, if we circle back to that 2022 article, I was struck by some of the variability across participants and that you were able to embrace that as a researcher and look at what that means. The variability across people reinforced your approach of taking a strength-based model approach when assessing reading performance for your clients. Are there other outcomes you want to highlight from that study? Kelly Knollman-Porter 37:49 Absolutely. One thing we found overall, is that for the group as a whole, TTS technology helped them process the written materials faster, without compromising comprehension. I'm gonna say that again, so they could access and process the written information faster, without compromising comprehension. For some of them, that was huge, right? Because they were able to read that book with less time, and hence less fatigue-- Ellen Bernstein-Ellis 38:27 ---that reduces that burden we were talking about earlier, right, that sense of fatigue and burden. However, so keep going. I'm sorry. Kelly Knollman-Porter 38:34 So we found it helps process the information faster. But as a group overall, we found that it did not improve their comprehension. And that's been kind of the thorn in our heel, more like, why is this text to speech not facilitating comprehension? Because if you look at the theory on dual modality, if you're presenting something auditorily and through writing, that should facilitate comprehension, right? But we weren't seeing that with all participants. Now, some of that could be the varying degrees of complexity of their unique type of reading problem that they had. Then we did have a couple people that actually did show improvements in comprehension. We had one participant that had a 20% increase in comprehension with TTS compared to the read only condition. We had another person with like a 10% increase. So this works for some people, in terms of facilitating comprehension, but not all. So we felt like we're getting close, but we're still not quite there. And that's why we're needing to continue to do more research. Ellen Bernstein-Ellis 39:50 I just want to take a pause. This research was all done during COVID. I want to thank you for how clearly you describe the training and materials needed for this study in that article. I have watched some of my colleagues trying to do research during COVID. They did some incredible things. Looking at that article made me wonder how did you do that? I want to shout out your tenacity in accomplishing this during COVID. I think you mentioned that it gave you multiple "front porch opportunities" to solve tech challenges, because you had to go to the house of your participants, literally sit on the porch and try to fix the iPad, or the Kindle, or the whatever, and hand it back to them. So thank you for just hanging in there during a time when it was really hard to do research. I'm looking at the time, and I want to make sure that we get to your eye fixation behaviors and processing time in individuals with and without aphasia article. I've just covered a lot at the moment. Was there something you wanted to reflect on in terms of your "porch moments" before we jumped to the eye fixation study? Kelly Knollman-Porter 41:11 I think as a speech language pathologist, it's kind of in our blood that we have to be very adaptive and flexible. Sometimes you have to jump in the car and drive and sit on the porch, especially. This is another challenge with using technology, if an update happens, and it totally changes the formatting of an application you're using all the time. Now, if a person with aphasia cannot always adapt to that, I would get a call, "Hey, Kelly. Something's popping up here. And I can't get rid of it." So I would just hop in the car, and I'd say, put everything on your front porch. I will be there. I'm just going to sit on your front porch, and I will deal with the update. Ellen Bernstein-Ellis 42:02 That could be cold in Ohio. I'm picturing you sitting there with gloves and in a coat trying to fix things. Kelly Knollman-Porter 42:11 Yeah, that was about it. But that's our skill as speech language pathologists. Ellen Bernstein-Ellis 42:17 You showed a lot of dedication. You keep giving a shout out to your team and your lab. Kelly Knollman-Porter 42:24 I have a special shout out to Mackenzie Pruitt, who worked on that study. She was a masters level student, and she was right there in the trenches with me. I have a great team. Ellen Bernstein-Ellis 42:35 I want to go back to this eye fixation behaviors study. While we're not likely to be able to assess eye fixation in daily practice because the equipment and technology is beyond what we would have in our clinics or private practices, but your results really hold clinical significance for understanding reading, processing strengths and challenges. Do you want to describe some of the highlights from that study? Kelly Knollman-Porter 42:59 I think one of the biggest frustrations when you work with someone with reading challenges is you really are not 100% sure how they're processing the written text. We're assessing them, we're watching them, we're seeing their response to the questions. But what are you having difficulty with? You can ask questions, you can watch their eyes clinically. But one thing that eye tracking technology has that I'm grateful for is, it showed me how people with aphasia process written text. And we wanted to specifically not just look at the word level, there's some great research out on word level processing and sentence level processing. But we wanted to take a big leap and look at multi sentence processing. So what are those eyes doing? What did they fixate on? What are they regressing to, and again, I'm going to give another shout out to Drew Bevelhimer. He was also a master's level student that was working in my lab at the time, who, again came alongside me to help get this eye tracking technology going. This really did show me how unique the reading challenges that people with aphasia have when reading multi sentence information. We specifically looked at how often they had within word regressions, like within a longer word within sentence regression--so when their eyes look back to another word within the sentence, and then how often they look back to a previous sentence. And one thing that that really showed us is with the use of text to text to speech technology, their numbers of regressions significantly decreased. So they did not have to regress as much while reading, which again, resulted in a decrease in processing time. Another thing that this study showed, which I and my colleagues thought was really interesting, we actually brought in a group of neurotypicals to do this study also. When we used the default text to speech voice rate, we actually found the opposite results with neurotypicals. When using text to speech, set at that default speed, like right around 150 to 180 words per minute, they actually had more regressions with text to speech than in the read only condition. Ellen Bernstein-Ellis 45:39 So, you have to match the speed with the person. Is that where this is headed? Kelly Knollman-Porter 45:43 That is exactly where that's headed. It really reinforced to us how you have to consider the speed of that text to speech voice. Because if you do not have the appropriate speed, it can actually have some detrimental effects in causing more regressions. That's one thing, looking to the future, that my colleagues and I are going start looking at-- exploring how to get that synching better in terms of the eye movements with the rate of speech. Ellen Bernstein-Ellis 46:17 So is that is next in your research, where you're headed, Kelly Knollman-Porter 46:21 That's where we're headed., Ellen Bernstein-Ellis 46:23 I'm going to look forward to that. I just want to say that your body of research on reading and reading comprehension, and supporting and using strategies and understanding the patterns and challenges that people with aphasia have and how they get them back in the game to support them. I just think it's such a valuable contribution. I really appreciate this beautiful body of research. And there was another March 2023, ASHA Leader article, besides the one on text to speech, that describes how reading impacts return to work. It's an article that tells a story about your efforts to support a teacher who was working to return to the classroom. I'll put that link in the show notes too, because it's a beautiful collaborative, "we're going to do this as a team" story. And it wasn't easy. But it was very much supporting the individual goals and journey of your client. Do you have any parting advice as we wrap up for clinicians who are going to assess and work with reading with their clients? That's what this whole show has been about. But what else do you want to add we end? Kelly Knollman-Porter 47:36 Don't be afraid to explore reading. I know it seems intimidating and overwhelming, because it is challenging to figure out what's specifically the problem, but I can honestly say that if you invest some time in it, the outcomes are going to be worth it for your clients. I look to some books studies that I've done here within our Miami University aphasia support group and, and I have many members that prior to the book club study that I did, had not picked up a novel for 15 years since their stroke, and through adaptive materials, and again, shout out to Roberta Elman's work in the Book Connection materials that her and her group have created. We've used them a lot here at Miami University. But through those adaptive materials that she's created, she's opened up a world of opportunity for people with aphasia to be able to access books. Giving people that opportunity to get back to reading materials that they'd like to read is just really rewarding. Ellen Bernstein-Ellis 48:55 Thank you so, so much for this conversation and for all the work you're doing. And we'd like to close with one kind of broader, big picture question. Kelly, if you had to pick only one thing that we need to achieve urgently as a community of Life Participation providers, what would that one thing be? Kelly Knollman-Porter 49:23 When we talked about this question, I was slightly discouraged because my ultimate reason for going and doing research was to provide research that will lead to greater reimbursement of services for people with chronic aphasia. I hate to say it, but here are 15 years later, that's still my big takeaway point. We need to find better ways of helping people with aphasia in the chronic phases get reimbursement for services that they so desperately need. We also need to talk to clinicians across the country. We have to be very careful in terms of how we give services to this population. They can still make progress. They can still make gains. We just need the support in order to make that happen. I'm just going to throw one other thing out there. This pertains to the ASHA Leader 2023 article for the teacher that was trying to get back to work. We need to find more opportunities for people with aphasia to still have part-time jobs without losing their benefits, because they're caught between a rock and a hard place. If I go back to work a little bit, I'm going to lose my benefits. I remember in that article, Christine Bowles, who we interviewed, shared working full time is too hard, but I still have more to give. I still have more to give. I'm not done yet. I'm only in my 40s. Why can't we give people with aphasia more opportunity to work without losing benefits? Ellen Bernstein-Ellis 51:09 Thank you for that message. I think it's critical and one that a lot of people face and think about. So thank you for bringing that up. And for participating today. It's been a wonderful opportunity to talk about your work. Your passion and excitement comes across so much. And I'm going to thank our listeners for listening today. And I just want to remind that our references and resources mentioned in today's show, just see our show notes. They're available on the website, www dot aphasia access.org. And there you can also become a member of our organization and support the podcast and all the other great work that's being done by aphasia access, and you can also browse our growing library of materials and find out about the Aphasia Access Academy. And if you have an idea for a future podcast episode, email us at info at Aphasiaaccess.org. For Aphasia Access Conversations. I'm Ellen Bernstein-Ellis. And thanks again for your ongoing support aphasia access References and Resources The reading intake questionnaire discussed in this interview, is accessible here: https://aphasiaacc.memberclicks.net/assets/docs/Reading%20History%20Questionnaire-Knollman-Porter-AphasiaAccessPodcast.pdf To see examples of adapted book club materials mentioned in this episode, go to: The Book Connection on the Aphasia Center of California website: https://aphasiacenter.net/the-book-connection/ Hux, K., Wallace, S. E., Brown, J. A., & Knollman-Porter, K. (2021). Perceptions of people with aphasia about supporting reading with text-to-speech technology: A convergent mixed methods study. Journal of communication disorders, 91, 106098. Hux, K., Knollman-Porter, K., Brown, J., & Wallace, S. E. (2017). Comprehension of synthetic speech and digitized natural speech by adults with aphasia. Journal of Communication Disorders, 69, 15-26. Knollman-Porter, K. (2023). Navigating a Job's Language Demands After a Stroke. Leader Live. The ASHA LEADER, 28(2), 42-46. Knollman-Porter, K., Bevelhimer, A., Hux, K., Wallace, S. E., Hughes, M. R., & Brown, J. A. (2023). Eye Fixation Behaviors and Processing Time of People With Aphasia and Neurotypical Adults When Reading Narratives With and Without Text-to-Speech Support. Journal of Speech, Language, and Hearing Research, 66(1), 276-295. Knollman-Porter, K., Brown, J., Hux, K., Wallace, S., & Crittenden A. (2022). Reading comprehension and processing time when people with aphasia use text-to-speech technology with personalized supports and features. American Journal of Speech-Language Pathology, 31, 342-358. Knollman-Porter, K., Dietz, A., & Dahlem, K. (2018). Intensive auditory comprehension treatment for severe aphasia: A feasibility study. American Journal of Speech-Language Pathology, 27(3), 936-949. Knollman-Porter, K., Hux, K., Wallace, S. E., Pruitt, M., Hughes, M. R., & Brown, J. A. (2022). Comprehension, Processing Time, and Modality Preferences When People With Aphasia and Neurotypical Healthy Adults Read Books: A Pilot Study. American Journal of Speech-Language Pathology, 31(6), 2569-2590. Knollman-Porter, K., & Julian, S. K. (2019). Book club experiences, engagement, and reading support use by people with aphasia. American journal of speech-language pathology, 28(3), 1084-1098. Knollman-Porter, K., Wallace, S. E., Brown, J. A., Hux, K., Hoagland, B. L., & Ruff, D. R. (2019). Effects of written, auditory, and combined modalities on comprehension by people with aphasia. American Journal of Speech-Language Pathology, 28(3), 1206-1221. Knollman-Porter, K., Wallace, S. E., Hux, K., Brown, J., & Long, C. (2015). Reading experiences and use of supports by people with chronic aphasia. Aphasiology, 29(12), 1448-1472. Wallace, S. E., Hux, K., Knollman-Porter, K., Patterson, B., & Brown, J. A. (2023). A Mixed-Methods Exploration of the Experience of People With Aphasia Using Text-to-Speech Technology to Support Virtual Book Club Participation. American Journal of Speech-Language Pathology, 1-24. Wallace, S. E., Knollman-Porter, K., & Hux, K. (2023). How Text-to-Speech Aids Reading for People With Aphasia. Leader Live 28(2), 52-53. Wallace, S. E., Hux, K., Knollman-Porter, K., Brown, J. A., Parisi, E., & Cain, R. (2022). Reading behaviors and text-to-speech technology perceptions of people with aphasia. Assistive Technology, 34(5), 599-610.
