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- Episode 135: From Technical Manuals to Poetry: In Conversation with Mark HarderThis 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.--------40:22
- Episode 134: Inner Speech and Aphasia with Mackenzie FamaLyssa Rome talks with Dr. Mackenzie Fama about the experience of inner speech for people with aphasia.--------37:56
- Episode 133: Diversity Beyond Race with Jose CentenoIn 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--------54:09
- Episode 132: Group Treatment with Dr. Liz HooverLyssa 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 neurogenic communication disorders. 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 Liz Hoover about group treatment for aphasia. Guest info Dr. Liz Hoover is a clinical professor of speech language and hearing sciences and the clinical director of the Aphasia Resource Center at Boston University. She holds board certification from the Academy of Neurologic Communication Disorders and Sciences, or ANCDS, and is an ASHA fellow. She was selected as a 2024 Tavistock Trust for Aphasia Distinguished Scholar, USA and Canada. Liz was a founding member of Aphasia Access and served on the board for several years. She has 30 years of experience working with people with aphasia and other communication disorders across the continuum of care. She's contributed to numerous presentations and publications, and most of her work focuses on the effectiveness of group treatment for individuals with aphasia. Listener Take-aways In today's episode you will: Describe the evidence supporting aphasia conversation groups as an effective interventions for linguistic and psychosocial outcomes. Differentiate the potential benefits of dyads versus larger groups in relation to client goals. Identify how aphasia severity and group composition can influence treatment outcomes. 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. Elizabeth Hoover, who was selected as a 2024 Tavistock Trust for Aphasia Distinguished Scholar, USA and Canada. Liz Hoover is a clinical professor of speech language and hearing sciences and the clinical director of the Aphasia Resource Center at Boston University. She holds board certification from the Academy of Neurologic Communication Disorders and Sciences, or ANCDS, and is an ASHA fellow. Liz was a founding member of Aphasia Access and served on the board for several years. She has 30 years of experience working with people with aphasia and other communication disorders across the continuum of care. She's contributed to numerous presentations and publications, and most of her work focuses on the effectiveness of group treatment for individuals with aphasia. Liz, welcome back to the podcast. So in 2017 you spoke with Ellen Bernstein Ellis about intensive comprehensive aphasia programs or ICAPs and inter professional practice at the Aphasia Resource Center at BU and treatment for verb production using VNest, among other topics. So this time, I thought we could focus on some of your recent research with Gayle DeDe and others on conversation group treatment. Liz Hoover Sounds good. Lyssa Rome All right, so my first question is how you became interested in studying group treatment? Liz Hoover Yeah, I actually have Dr. Jan Avent to thank for my interest in groups. She was my aphasia professor when I was a graduate student doing my masters at Cal State East Bay. As you know, Cal State East Bay is home to the Aphasia Treatment Program. When I was there, it preceded ATP. But I was involved in her cooperative group treatment study, and as a graduate student, I was allowed to facilitate some of her groups in this study, and I was involved in the moderate-to-severe group. She was also incredibly generous at sharing that very early body of work for socially oriented group treatments and exposing us to the work of John Lyons and Audrey Holland. Jan also invited us to go to a conference on group treatment that was run by the Life Link group. It's out of Texas Woman's University, Delaina Walker-Batson and Jean Ford. And it just was a life changing and pivotal experience for me in recognizing how group treatment could not be just an adjunct to individual goals, but actually be the type of treatment that is beneficial for folks with aphasia. So it's been a love my entire career. Lyssa Rome And now I know you've been studying group treatment in this randomized control trial. This was a collaborative research project, so I'm hoping you can tell us a little bit more about that project. What were your research questions? Tell us a little bit more. Liz Hoover Yeah, so thank you. I'll just start by acknowledging that the work is funded by two NIDCD grants, and to acknowledge their generosity, and then also acknowledge Dr. Gayle DeDe, who is currently at Temple University. She is a co- main PI in this work, and of course it wouldn't have happened without her. So you know, Gayle and I have known each other for many, many years. She's a former student, doctoral student at Boston University, and by way of background, she and I were interested in working together and interested in trying to build on some evidence for group treatment. I think we drank the Kool Aid early on, as you might say. And you know, just looking at the literature, there have been two trials on the evidence for this kind of work. And so those of us who are involved in groups, know that it's helpful for people with aphasia, our clients tell us how much they enjoy it, and they vote with their feet, right? In that they come back for more treatments. And aphasia centers have grown dramatically in the last couple of decades in the United States. So clearly we know they work, but what we don't know is why they work. What are those essential ingredients, and how is that driving the change that we think we see? And from a personal perspective, that's important for me to understand and for us to have explained in the literature, because until we can justify it in the scientific terms, I worry it will forever be a private-pay adjunct that is only accessible to people who can pay for it, or who are lucky enough to be close enough to a center that can get them access—virtual groups aside, and the advent of that—but it's important that I think this intervention is validated to the scientific community in our field. So we designed this trial. It's a randomized control trial to help build the research evidence for conversation, group treatment, and to also look at the critical components. This was inspired by a paper actually from Nina Simmons Mackie in 2014 and Linda Worrell. They looked at group treatment and showed that there were at least eight first-tier elements that changed the variability or on which we might modify group conversation treatment. And so, you know, if we're all doing things differently, how can we predict the change, and how can we expect outcomes? Lyssa Rome So I was hoping you could describe this randomized, controlled trial. You know, it was collaborative, and I'm curious about what you and your collaborators had as your research questions. Liz Hoover So our primary aims of the study were to understand if communication or conversation treatment is associated with changes in measures of communicative ability and psychosocial measures. So that's a general effectiveness question. And then to look in more deeply to see if the group size or the group composition or even the individual profile of the client with aphasia influences the expected outcome. Because if you think about group treatment, the size of the group is not an insignificant issue, right? So a small group environment of two people has much more… it still gives you some peer support from the other individual with aphasia, but you have many opportunities for conversational turns and linguistic and communication practice and to drive the saliency of the conversation in a direction that's meaningful and useful and informative. Whereas in a large group environment of say, six to eight people with aphasia and two clinicians, you might see much more influence in the needed social support and vicarious learning and shared lived experience and so forth, and still have some opportunity for communication and linguistic practice. So there's conflicting hypotheses there about which group environment might be better for one individual over another. And then there's the question of, well, who's in that group with you? Does that matter? Some of the literature says that if you have somebody with a different profile of aphasia, it can set up a therapeutic benefit of the helper experience, where you can gain purpose by enabling and supporting and being a facilitator of somebody else with aphasia. But if you're in a group environment where your peers have similar conversation goals as you, maybe your practice turns, and your ability to learn vicariously from their conversation turns is greater. So again, two conflicting theories here about what might be best. So we decided to try and manipulate these group environments and measure outcomes on several different communication measures. We selected measures that were linguistic, functional, and psychosocial. We collected data over four years. The first two years, we enrolled people with all different kinds of profiles of aphasia. The only inclusion criteria from a communication perspective, as you needed some ability to comprehend at a sentence level, so that you could process what was being said by the other people in the group. And in year one, the treatment was at Boston University and Temple University, which is where Gayle's aphasia center is housed. In year two, we added a community site at the Adler Aphasia Center and Maywood, New Jersey, so we had three sites going. The treatment conditions were dyad, large group, and then a no treatment group. So this group was tested at the same time, didn't get any other intervention, and then we gave them group treatment once the testing cycle was over. So we call that a historical control or a delayed-treatment control group. And then in years three and four, we aim to enroll people who had homogeneous profiles. So the first through the third cycle was people with moderate to severe profiles. And then in the final, fourth cycle, it was people with mild profiles with aphasia. This allowed us to collect enough data in enough size to be able to look at overall effectiveness and then effects of heterogeneity or homogeneity in the group, and the influence of the profile of aphasia, as well as the group size. And across the four years, we aim to enroll 216 participants, and 193 completed the study. So it's the largest of its kind for this particular kind of group treatment that we know of anyway. So this data set has allowed us to look at overall efficacy of conversation group treatment, and then also take a look at a couple of those critical ingredients. Does the size of the group make a difference? And does the composition of your group make a difference? Lyssa Rome And what did you find? Liz Hoover Well, we're not quite done with all of our analysis yet, but we found overall that there's a significant treatment effect for just the treatment conditions, not the control group. So whether you were in the dyad or whether you were in a large treatment group, you got better on some of the outcome measures we selected. And the control group not only didn't but on a couple of those measures, their performance actually declined. And so showing significantly that there's a treatment effect. Did you have a question? Lyssa Rome Yeah, I wanted to interrupt and ask, what were the outcome measures? What outcome measures were you looking at? Liz Hoover Yeah. So we had about 14 measures in total that aligned with the core outcome set that was established by the ROMA group. So we had as our linguistic measure the Comprehensive Aphasia Test. We had a primary outcome measure, which was a patient reported measure of functional communication, which is the ACOM by Will Hula and colleagues, the Aphasia Communication Outcome measure, we had Audrey Holland and colleagues' objective functional measure, the CADL, and then a series of other psychosocial and patient reported outcome measures, so the wall question from the ALA, the Moss Social Scale, the Communication Confidence Rating Scale in Aphasia by Leora Cherney and Edie Babbitt. Lyssa Rome Thank you. When I interrupted you to ask about outcome measures. You were telling us about some of the findings so far. Liz Hoover Yeah, so our primary outcome measures showed significant changes in language for both the treatment conditions and a slightly larger effect for the large group. And then we saw, at a more micro level, the results pointing to a complex interaction, actually, between the group size and the treatment outcome. So we saw changes on more linguistic measures. like the repetition sub scores of the CAT and verb naming from another naming subtest for the dyad group, whereas bigger, more robust changes on the ACOM the CADL and the discourse measure from the CAT for the large group. And then diving in a little bit more deeply for the composition, these data are actually quite interesting. The papers are in review and preparation at the moment, but it looks like we are seeing significant changes for the moderate-to-severe group on objective functional measures and patient reported functional measures of communication, which is so exciting to see for this particular cohort, whose naming scores were zero, in some cases, on entrance, and we're seeing for the mild group, some changes on auditory comprehension, naming, not surprisingly, and also the ACOM and the CADL. So they're showing the same changes, just with different effect sizes or slightly different ranges. And once again, no change in the control group, and in some cases, on some measures, we're seeing a decline in performance over time. So it's validating that the intervention is helpful in general. What we found with the homogeneous groups is that in a homogeneous large group environment, those groups seem to do a little better. There's a significant effect over time between the homogeneous and the heterogeneous groups. So thinking about why that might have taken place, we wonder if the shared lived experience of your profile of aphasia, your focus on similar kinds of communication, or linguistic targets within the conversation environment might be helping to offset the limited number of practice trials you get in that larger group environment. So that's an interesting finding to see these differences in who's in the group with you. Because I think clinically, we tend to assign groups, or sort of schedule groups according to what's convenient for the client, what might be pragmatic for the setting, without really wondering why one group could be important or one group might be preferential. If we think about it, there are conflicting hypotheses as to why a group of your like aphasia severity might have a different outcome, right? That idea that you can help people who have a different profile than you, that you're sharing different kinds of models of communication, versus that perhaps more intense practice effect when you share more specific goals and targets and lived experiences. So it's interesting to think about the group environment from that perspective, I think, Lyssa Rome And to have also some evidence that clinicians and people at aphasia centers can look to help make decisions about group compositions, I think is incredibly helpful. Earlier, you mentioned that one of the goals of this research project has been to identify the active ingredients of group therapy. And I know that you've been part of a working group for the Rehabilitation Treatment Specification System, or RTSS. Applying that, how have you tried to identify the active ingredients and what? What do you think it is about these treatments that actually drives change? Liz Hoover I'll first of all say, this is a work in process. You know, I don't think we've got all of the answers. We're just starting to think about it with the idea, again, that if we clinically decide to make some changes to our group, we're at least doing it with some information behind us, and it's a thoughtful and intentional change, as opposed to a gut reaction or a happenstance change. So Gayle and I have worked on developing this image, or this model. It's in a couple of our papers. We can share the resources for that. But it's about trying to think of the flow of communication, group treatment, and what aspects of the treatment might be influential in the outcomes we see downstream. I think for group treatment, you can't separate entirely many of the ingredients. Group treatment is multifaceted, it's interconnected, and it's not possible—I would heavily debate that with anybody—I don't think it's possible to sort of truly separate some of these ingredients. But when you alter the composition or the environment in which you do the treatment, I do think we are influencing the relative weight of these ingredients. So we've been thinking about there being this group dynamics component, which is the supportive environment of the peers in the group with you, that social support, the insider affiliation and shared lived experience, the opportunity to observe and see the success of some of these different communication strategies, so that vicarious learning that takes place as you see somebody else practice. But also, I think, cope in a trajectory of your treatment process. And then we've got linguistic practice so that turn taking where you're actually trying to communicate verbally using supported communication where you're expanding on your utterances or trying to communicate verbally in a specific way or process particular kinds of linguistic targets. A then communication practice in terms of that multimodal effectiveness of communication. And these then are linked to these three ingredients, dynamic group dynamics, linguistic practice and communication practice. They each have their own mechanism of action or a treatment theory that explains how they might affect change. So for linguistic practice, it's the amount of practice, but also how you hear it practiced or see it practiced with the other group participant. And the same thing for the various multimodal communication acts. And in thinking about a large group versus the dyad or a small group, you know you've got this conflicting hypothesis or the setup for a competing best group, or benefit in that the large group will influence more broadly in the group dynamics, or more deeply in the group dynamics, in that there's a much bigger opportunity to see the vicarious learning and experience the support and potentially experience the communication practice, given a varied number of participants. But yet in the dyad, your opportunity for linguistic practice is much, much stronger. And our work has counted this the exponential number of turns you get in a dyad versus a large group. And you know, I think that's why the results we saw with the dyad on those linguistic outcomes were unique to that group environment. Lyssa Rome It points, I think, to the complexity of decision making around group structure and what's right for which client, maybe even so it sounds like some of that work is still in progress. I'm curious about sort of thinking about what you know so far based on this work, what advice would you have for clinicians who are working in aphasia centers or or helping to sort of think about the structure of group treatments? What should clinicians in those roles keep in mind? Liz Hoover Yeah, that's a great question, and I'll add the caveat that this may change. My advice for this may change in a year's time, or it might evolve as we learn more. But I think what it means is that the decisions you make should be thoughtful. We're starting to learn more about severity in aphasia and how that influences the outcomes. So I think, what is it that your client wants to get out of the group? If they're interested in more linguistic changes, then perhaps the dyad is a better place to start. If they clearly need, or are voicing the need, for more psychosocial support, then the large, you know, traditional sized and perhaps a homogeneous group is the right place to start. But they're both more effective than no treatment. And so being, there's no wrong answer. It's just understanding your client's needs. Is there a better fit? And I think that's, that's, that's my wish, that people don't see conversation as something that you do at the beginning to build a rapport, but that it's worthy of being an intervention target. It should be most people's primary goal. I think, right, when we ask, what is it you'd like? "I want to talk more. I want to have a conversation." Audrey Holland would say it's a moral imperative to to treat the conversation and to listen to folks' stories. So just to think carefully about what it is your client wants to achieve, and if there's an environment in which that might be easier to help them achieve that. Lyssa Rome It's interesting, as you were saying that I was thinking about what you said earlier on about sort of convincing funders about the value of group treatment, but what you're saying now makes me think that it's all your work is also valuable in convincing speech therapists that referrals to groups or dyads is valuable and and also for people with aphasia and their families that it's worth seeking out. I'm curious about where in the continuum of care this started for the people who were in your trial. I mean, were these people with chronic aphasia who had had strokes years earlier? Was it a mix? And did that make a difference? Liz Hoover It was a mix. I think our earliest participant was six months post-onset. Our most chronic participant was 26 years post-onset. So a wide range. We want, obviously, from a study perspective, we needed folks to be outside of the traditional window of spontaneous recovery in stroke-induced aphasia. But it was important to us to have a treatment dose that was reasonable and applicable to a United States healthcare climate, right? So twice a week for an hour is something that people would get reimbursed for. The overall dose is the minimum that's been shown to be effective in the RELEASE collaborative trial papers. And then, you know, but still, half, less than half the dose that the Elman and Bernstein Ellis study found to be effective. So there may be some wiggle room there to see if, if a larger dose is more effective. But yeah, I think it's that idea of finding funding, convincing people that this is not just a reasonable treatment approach, but a good approach for many outcomes for people with chronic aphasia. I mean, you know, one of the biggest criticisms we hear from the giants in our field is the frustration with aphasia being treated like it's a quick fix and can be done. But you know, so much of the work shows that people are only just beginning to understand their condition by the time they're discharged from traditional outpatient services. And so there's a need for ongoing treatment indefinitely, I think, as your goals change, as you age, and as your wish to participate in different things changes over a lifetime, Lyssa Rome Yeah, absolutely. And I think too, when we think about sort of the role of hope, if you know, if there is additional evidence showing that there can be change after that sort of traditional initial period, when we think that change happens the most, that can provide a lot of hope and motivation, I think, to people. Liz Hoover yeah, we're look going to be looking next at predictors of change, so looking at our study entrance scores and trying to identify which participants were the responders versus the non-responders that you know, because group effects are one thing, but it's good to see who seems to benefit the most from these individual types of environments. And an early finding is that confidence, or what some people in the field, I'm learning now are referring to as actually communication self-efficacy, but that previous exposure to group potentially and that confidence in your communication is inversely correlated with benefits from treatment on other measures. So if you've got a low confidence in your ability to communicate functionally in different environments, you're predicted to be a responder to conversation treatment. Lyssa Rome Oh, that's really interesting. What else are you looking forward to working on when it comes to this data set or other projects that you have going on? Liz Hoover Yeah. So as I mentioned, there's a lot of data still for us to dig into, looking at those individual responders or which factors or variables might make an impact. There is the very next on the list, we're also going to be looking very shortly at the dialogic conversation outcomes. So, it's a conversation treatment. How has conversation changed? That's a question we need to answer. So we're looking at that currently, and might look more closely at other measures. And then I think the question of the dose is an interesting one. The question of how individual variables or the saliency of the group may impact change is another potentially interesting question. There are many different directions you can go. You know, we've got 193 participants in the study, with three separate testing time points, so it's a lot of data to look at still. And I think we want to be sure we understand what we're looking at, and what those active ingredients might be, that we've got the constructs well defined before we start to recruit for another study and to expand on these findings further. Lyssa Rome When we were meeting earlier, getting ready for this talk, you mentioned to me a really valuable video resource, and I wanted to make sure we take some time to highlight that. Can you tell us a little bit about what you worked on with your colleagues at Boston University? Liz Hoover Yes, thank you. So I'll tell you a little bit. We have a video education series. Some of you may have heard about this already, but it's up on our website so bu.edu/aphasiacenter, and we'll still share that link as well. And it's a series of short, aphasia-friendly videos that are curated by our community to give advice and share lived experiences from people with aphasia and their care partners. This project came about right on the heels of the COVID shutdown at our university. I am involved in our diagnostic clinic, and I was seeing folks who had been in acute care through COVID being treated with people who were wearing masks, who had incredibly shortened lengths of stay because people you know rightly, were trying to get them out of a potentially vulnerable environment. And what we were seeing is a newly diagnosed cohort of people with aphasia who were so under-informed about their condition, and Nina that has a famous quote right of the public being woefully uninformed of the aphasia condition and you don't think it can get any worse until It does. And I thought, gosh, wouldn't it be wonderful to be able to point them to some short education videos that are by people who have lived their same journey or a version of their same journey. So we fundraised and collaborated with a local production company to come up with these videos. And I'll share, Lyssa, we just learned last week that this video series has been awarded the ASHA 2025 Media Outreach Award. So it's an award winning series. Lyssa Rome Yeah, that's fantastic, and it's so well deserved. They're really beautifully and professionally produced. And I think I really appreciated hearing from so many different people with aphasia about their experiences as the condition is sort of explained more. So thank you for sharing those and we'll put the links in our show notes along with links to the other articles that you've mentioned in this conversation in our show notes. So thanks. Liz Hoover Yeah, and I'll just put a big shout out to my colleague, Jerry Kaplan, who's the amazing interviewer and facilitator in many of these videos, and the production company, which is Midnight Brunch. But again, the cinematography and the lighting. They're beautifully done. I think I'm very, very happy with them. Lyssa Rome Yeah, congrats again on the award too. So to wrap up, I'm wondering if there's anything else that you want listeners to take away from this conversation or from the work that you've been doing on conversation treatments. Liz Hoover I would just say that I would encourage everybody to try group treatment. It's a wonderful option for intervention for people, and to remind everyone of Barbara Shadden and Katie Strong's work, of that embedded storytelling that can come out in conversation, and of the wonderful Audrey Holland's words, of it being a moral imperative to help people tell their story and to converse. It's yeah… You'll drink the Kool Aid if you try it. Let me just put it that way. It's a wonderful intervention that seems to be meaningful for most clients I've ever had the privilege to work with. Lyssa Rome I agree with that. And meaningful too, I think for clinicians who get to do the work. Liz Hoover, thank you so much for your work and for coming to talk with us again, for making your second appearance on the podcast. It's been great talking with you. Liz Hoover Thank you. It's been fun. I appreciate it. 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@aphasia access.org. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations. I'm Lyssa Rome. Resources Walker-Batson, D., Curtis, S., Smith, P., & Ford, J. (1999). An alternative model for the treatment of aphasia: The Lifelink© approach. In R. Elman (Ed.), Group treatment for neurogenic communication disorders: The expert clinician's approach (pp. 67-75). Woburn, MA: Butterworth-Heinemann Hoover, E.L., DeDe, G., Maas, E. (2021). A randomized controlled trial of the effects of group conversation treatment on monologic discourse in aphasia. Journal of Speech-Language and Hearing Research doi/10.1044/2021_JSLHR-21-00023 Hoover, E., Szabo, G., Kohen, F., Vitale, S., McCloskey, N., Maas, E., Kularni, V., & DeDe., G. (2025). The benefits of conversation group treatment for individuals with chronic aphasia: Updated evidence from a multisite randomized controlled trial on measures of language and communication. American Journal of Speech Language Pathology. DOI: 10.1044/2025_AJSLP-24-00279 Aphasia Resource Center at BU Living with Aphasia video series Aphasia Access Podcast Episode #15: In Conversation with Liz Hoover--------40:39
- Episode 131: Math + Aphasia: A Conversation with Tami Brancamp and Dave BrancampIn 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 [email protected]. 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 [email protected] 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--------56:40
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About Aphasia Access Conversations
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.
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