Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with 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

In this episode you will discover:

• Math IS Language - It's in Our Wheelhouse Math has syntax (order of operations), semantics (number meanings), and involves memory and executive function - all areas SLPs already assess and treat. If you can help with language, you have transferable skills for math therapy.
• Start Simple with What You Have You don't need special materials or extensive math training. Use a deck of cards, dice, and real-life examples like restaurant receipts. Make numbers "friendly" (round $18.72 to $20) and let clients show you multiple ways to solve problems.
• Address Your Own Math Anxiety First Most SLPs feel uncomfortable with math, but clients need this support for life participation (paying bills, calculating tips, telling time). Acknowledge your discomfort, start with basics you DO know, and remember - if you avoid it, you can't help your clients who want to work on it.

If you've ever felt your palms get sweaty when a client asks for help with numbers, this conversation is for you. Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong, a faculty member at Central Michigan University where I lead the Strong Story Lab.

I'm today's host for an episode that might just change how you think about math anxiety - both your own and your clients'. We're featuring Tami Brancamp and Dave Brancamp, who are doing pioneering work at the intersection of aphasia and mathematics. Before you hit pause because you're having flashbacks to algebra class, stay with me! This research shows us that the language of math is exactly that - language - which puts it squarely in our wheelhouse as SLPs.

We'll explore how to support our clients with aphasia who are struggling with everyday math tasks like counting change, telling time, or balancing a checkbook. And yes, we'll tackle the elephant in the room: addressing our own math insecurities so we can show up confidently for our clients.

Let me tell you about our guests. Tami Brancamp is an associate professor at the University of Nevada, Reno School of Medicine and founder of the Aphasia Center of Nevada. Her research focuses on identity in aphasia and rehabilitating everyday math skills. Dave Brancamp spent over 15 years as a junior high math teacher and later became Director of Standards at the Nevada Department of Education. Together, they co-founded Aphasia + Math, where they're exploring how language and mathematics intersect for people with aphasia.

Okay now let's get this Aphasia + Math conversation started!

Katie Strong: Tami and Dave, welcome to the podcast. I'm so excited for you to be here today.

Dave Brancamp: Thank you.

Tami Brancamp: We are both super excited to have a chance to talk about things that are different, right?

Katie Strong: Right. I do have to say, I don't know if it was a rash, but I did get a little bit nervous coming into the conversation, because I think I may be one of those SLPs that feel a little bit uncomfortable with math.

Tami Brancamp: Well, this SLP also is uncomfortable with math, so we can be uncomfortable together. And we'll let the math dude guide us through some of the things.

Dave Brancamp: And it will be fun. By the time you're done, I want to see that smile that you have on your face.

Katie Strong: Well, let's jump in and have you share a little bit about how you came to researching aphasia and math.

Tami Brancamp: Well, I have loved working with people who have aphasia since the beginning of my graduate studies. And then probably, like most of us, there's a few clients who've really hit your heart. One of them, I don't recall her name, and that's okay, but she had a stroke, had aphasia. She had had great recover physically, and her language was quite good, some anomia. But she's a banker, and she could not process numbers, and she was angry. I'm a newbie, I didn't understand the emotional piece of stroke survivor, aphasia. can't do my job well. But she was angry, and I felt so helpless. I didn't know what to do to help her. You know, I could pull a workbook off the shelf or something, but it didn't feel right. You know, she could do calculations, but couldn't do her job. And I always felt so very, very helpless over the years.

And the other part that came to start looking at this was teaching in a speech pathology program, undergrad and grad. And in class, maybe we're doing an averaging or something to get a score. I'm not sure if we start talking math, and I would see these students, and their eyes would just like, pop up, like, “Oh my gosh, she's asking me to do math.” And like, deer in the headlights. So I'm like, “What is this?” Every semester, I would do kind of an informal survey when we would do a little bit of math, and I say, “Okay, so how many of you don't do math? Raise your hand or are afraid of math?” And it would be at least two thirds to three quarters of the class every single semester, and I'm like, “Okay, there's something here.” Like, if I'm afraid of math, how am I going to help my clients remediate that in an efficient way? Right? I'm going to avoid it. If I can, I'll go do other things that are important.

So those were, like, the two big things, and then happened to be married to a math dude. And I wondered why are we not combining our skill sets? Because I would come home and I would share with Dave. I'm like “Dave, the majority of my students are afraid to do math or uncomfortable doing math.” And it's not complicated math. We're not talking quadratic equations or things I don't even know what they mean anymore. And we would talk about it a little bit, and we talk about math attitudes and perceptions and how we develop our math skills. And I'm like, “There's something here.”But I was never taught, how do you remediate number processing? Calculations? right? But yet, I would have multiple clients say, “Hey, Tammy, I can't do numbers.” “Yeah, how do I do this?” And there really wasn't anything the literature that told me how to do it. So, I would talk to Dave, and then, just over the years, I'm like, “Okay, we need to do something with this. We really do.” And I don't know what that means, because I'm not most comfortable with math, it is not my passion. We're very opposite. I think I shared like, Dave has math and fun in the same language, and then in the same sentence, I'm like, “they don't go together in my brain.” So we're very, very opposite. But you know, you can speak for yourself how you grew up and you had to learn how to embrace math, and having good teachers helped when we were younger, and having poor teachers or teachers with different attitudes also left a lasting impression. But when you think about it, whether it's, you know, cooking, driving, banking, living, going to grocery store, restaurants, everything we do all the time, it all involves numbers to some impact, you know, to some effect. And our folks with aphasia, again, not everybody, but the majority of them, will still have an impact with acalculia, difficulty processing numbers and calculating and transcoding, you know, saying, saying the numbers. So, we started to look at it.

I did have a had a gift of time with Audrey Holland. So that was my beautiful, like, for many of us, a mentor, you know, she had her three-pronged stool, like the different parts of aphasia. And Dave and I started dividing it up, like, what were the parts we thought involve, you know, aphasia and numbers. And we did think about the math and language math skills, making it fun, but also those influencing elements, like attitudes and perceptions. So, we started just like, “How do we look at this?” Because it's really overwhelming just from the beginning, you know, and just pulling that workbook off the shelf didn't do it for me. You're allowed to speak on that. (Laughter)

Dave Brancamp That's one of my passions, obviously, the whole math side. But pulling a workbook is an unfortunate because if someone starts to practice something wrong, they'll repeat that practice, and now it's very difficult to get them to correct a habit, basically that you've formed. And sometimes it's like that nails on a chalkboard? That's what it feels like to me when I hear it. I'm like, “Oh, don't do that.” Because if they're doing it wrong, like, 20 times, 10 times, even then it performs a habit that's real hard for them to go, “Well, but I thought I got them all right.”

Katie Strong: Yeah.

Dave Brancamp: Because I think we can all go back to math and you come up unless it was something really, really difficult in at least in our early years of math. We all came up with an answer. And that's how it feels on a worksheet that might have like just adding single digit numbers, if you make an error, you won't know until someone either corrects it or asks you, “How did you get there?” And to me, that's where it became more important. And then I had to learn how to do what do you call it? aphasia friendly language, you know? So, math folks usually speak in short sentences, so that helps. But we'll run a whole bunch of sentences together. If I give you the best example. I know we're going to talk a little bit about that math perception quiz, the difference between us on that question, I think it says “I would prefer to do an assignment in math rather than write an essay.” I'm the person to give me that math assignment. 100%. Tammy is like, give me the essay!

Katie Strong: And I have to say I'm right there with Tammy.

Tami Brancamp I think so, as speech pathologists, we learned about the pedagogy of language and language development. We can analyze it. We can treat it. We can assess it. And then I talked to Dave, and he goes, “Well, there's this whole math I know there's a math pedagogy, and there's this whole developmental progression of how we learn math.” But “Really, okay, well, I've never learned that, right?” “No, you learn this before you learn that.” We lived it, we just weren't overtly taught it. Or how you know, if there's an error in a calculation, that means that there's some challenges in this part of your developmental math abilities. Like, “Huh, okay, well, that kind of sounds like language to me, a little bit.” They do go together.

Katie Strong: Yeah, yeah. So, I love to maybe ask a little bit about this. As we've pretty clearly stated, many SLPs feel uncomfortable with math and their own math skills.

Tami Brancamp: Yeah.

Katie Strong: And we, probably many of us, have avoided it in our own education.

Tami Brancamp: Yeah.

Katie Strong: So I love this idea that there's the language of math, and I was wondering if you could talk a little bit about that and why it should fit right within our scope of practice as SLPs.

Tami Brancamp: A long time ago, I remember how many years ago I came across an article by Seron 2001 in Aphasiology. And he or she, I actually don't know, stated that math should be part of the SLPs practice. I started looking at 20 years later, and it still wasn't (a part of our practice). So, something's really amiss. What are we missing? When we talk about the language, there is a syntax in math. Dave calls it order of operations. And I don't even know what the PEMDAS.

Dave Brancamp: PEMDAS.

Tami Brancamp: PEMDAS, right?

Dave Brancamp: You what scares most people about that? Parentheses, exponents, multiplication, division, addition, subtraction. The left to right. I mean, that's the part people left off.

Tami Brancamp: But, ah, yeah, that kind of sounds familiar, doesn't it?

Katie Strong It does. It's ringing a very faint bell.

Dave Brancamp: It's like, oh no, we're not going to do that.

Tami Brancamp So there is a syntax. There's an order of operations, how we put mathematical equations together. Just like how we put sentences together. There's semantics, right? There's word meaning. We have a little sign for you. It won't translate audio, but we'll talk about it. So, in math, and you use the word or the number, the orthographic representation 2, right? Yes. And then we spell it TWO. We also spell it TO and TOO. And then, if you say, “Okay, we also have a two in the number 12, right?” They have to be able to transcode that and a two in the number 20, the two zero. The two in all those locations has different meaning, right? So, it does have semantics.

The other parts, I think, were important, was memory and executive function. Executive function permeates mathematics in so many ways. So, when we think about our stroke survivors, those are areas that are and can be impacted. Information processing. How much can they hold in memory of being presented with language, and in this case, language and numbers.

So, I think for me, it just, it really is integrated. I also thought, too, when we were looking, I was looking at the neuroscience of it, and there's some shared neuro space that works for math and language. They're not fully disassociated, so I found that really fascinating as well.

Katie Strong Yeah, it really is, as I've been thinking about our conversation and just looking into things a little bit, it really makes sense. And even just thinking about just thinking about a word problem in math, certainly, there's that language component that may be a little less intimidating for SLP clinicians that aren't typically working in practice. But I so appreciate you both bringing this conversation out into the light and doing this work, because I can think of a significant number of clients that I've worked with that have also expressed challenges in all sorts of different ways of math. And sometimes I've been able to maybe support it a little bit, and other times I haven't. And I, you know, whether it's me just avoiding it and saying, “Oh, we could work on all of these other things or we can work on this math thing”  or, you know, it's just frustrating, I think, to not have really the tools to be able to know how to support it.

Our podcast, really focuses on the Life Participation Approach to Aphasia, which really emphasizes a person-centered approach. Like I'm the client I want to choose what I want in my life and what I want to work on. And so, I'm just wondering if you might be able to talk through a little bit about how math skills fit into LPAA framework.

Tami Brancamp: Yeah, we were talking about that, and there's one particular client who has multiple PhDs before his stroke. He has family, adult children. And he's like, “Tammy.” And we were Dave and I were piloting some work together. And he's like, “Guys, I want to take my family to dinner. I want to pay the bill and the tip.” I'm like, “Okay, dude, I got an app for that.” And he's like, “No, I want to do it myself.” So that, to me, is life participation. If a person is fine with an app, let's make it so and work on something else.

Katie Strong: Yeah.

Tami Brancamp: But his case, it was so important to him. I'm like, “Okay, here we go.” How do we how do we work on figuring out the tip? Now, does it have to be an exact percent? No, Dave likes to teach it more like there's some more strategies to get to the tip.

Another client I wanted to share, and sometimes too, when we think about assumptions. So, the data on how many people with aphasia also have math difficulties, numeracy difficulties is wide ranging. It's so big. So you can't even really say what percent. But I also had an assumption. I have a gentleman who I've worked with off and on for a very long time. He's nonfluent aphasia and also has apraxia of speech, and so we're working a lot on his language and his speech. And I said, “So how's your math?” “It's fine. You know, I own my own business and I have somebody help, but it's fine.” I'm like, in my head, hmm, I don't think so. I wonder, because the severity of his aphasia and his ability to transcode so like, see a number and then say the name or say the numbers he wants to say, was really impacted. So, we were doing a pilot study during the pandemic online, and so Dave and I were working with this one gentleman. And I think you why don't you do the story because I don't remember you gave him homework or something. A home program.

Dave Brancamp: There's a math game called Krypto.

Tami Brancamp: Oh, Krypto.

Dave Brancamp: So you put five cards down. And each one has its value, you know. And so your listeners just so they know, like when the Jack would fall, that would be 11, and so the Ace automatically took a one, the Queen would be, you know, 12, and the King 13. So five cards different values, or they could be the same value didn't matter, and then one more card became like a target. You had to figure out an equation. So, some big, nice math term there to that you'd add, subtract, multiply, divide to equal this last card.

Now they could do with just two cards, three cards, four cards or five would be ideal. So, they had some room for success. And this gentleman, we had some hard numbers that were there. And, you know, he had done a couple, and was rolling right through. And I kept looking over at Tami and I am like, "He's got his math. His math is really good.”

Tami Brancamp: His ability to calculate.

Dave Brancamp: And then we hit one that was really hard, and we're both looking (each other). And the next thing, you know, this gentleman, not to scare anybody, but makes a complex fraction, making a fraction over another fraction to solve. And you can see right now, right Tammy. Tammy is like, “What are you doing?” I'm like, “Yeah, yeah, no, let's go for it. Let's go for it.” And next thing you know, we were able to solve it by doing two complex fraction with another number. And he solved the problem. And I looked at Tammy said, “This man has no math problems.”

Tami Brancamp:  And I said, “Boys, I'm out. I'm out. You all just continue playing with your numbers. Have a good time.” That's not a comfort zone for me. It's also not the focus we're doing with aphasia in math. But it was something he was capable to do, and I also could see within him, he was super excited that he could do this.

Katie Strong: Yeah

Dave Brancamp: And he wanted to show his wife. He wanted to show other people, he was like, “Look at this. Look at this.” You know, I was like, “Yeah, there's a lot happening.”

Tami Brancamp: But he could not read the equation. Okay, so there's the aphasia language issue.

Katie Strong: Right.

Tami Brancamp: Transcoding. He could do the calculations without difficulty.

Katie Strong: Amazing.

Tami Brancamp: But those are the those are really fascinating. And while we were piloting, we had a group of, I don't know, five or six people with aphasia, and each one had their own. They're all on the non-fluent side, but everybody had their own combination of language difficulty and number processing difficulty. We did notice what one client we worked with who had more cognitive impairment along with language and hers, her processing was much more different than pure aphasia and the acalculia issues. So, it's really interesting to see. It's definitely not cookie cutter, right? Just like aphasia therapy.

Katie Strong: Right.

Tami Brancamp: Every person's got their unique strengths and challenges. And I'm going to say similarly, I think with the math. Where in the brain was the injury? What is their background? What are their interests and passions? All of that plays in just like in aphasia.

Katie Strong: I love bringing up though their prior experience with math too is so important. We think about that from a language standpoint, but we really don't consider that. Or I will speak for myself, I don't typically consider that when I'm learning about somebody and their strengths.

Tami Brancamp: Yeah.

Dave Brancamp: You think like to go back to your language, like the word “sum” S-U-M, is what we'd use in math for adding, but it has the same sounding as “some” S-O-M-E and so right there, there's some language difficulty that could come out. So often we will have flash cards with the plus symbol so that they and can associate words and just so that you feel better on it, too.

Most of us, when we'd heard subtraction probably used an unfortunate phrase of what's called “takeaway”.  Well, that's not what happens from a mathematical point. So, us in the math side, cringe and are like, “Oh well, the numbers don't get taken away. They're still there.” They got, you know, replaced is what we would call them. And so the word of difference, you know, where you live in a different town than we do, so that's what we associate but difference is how we do subtraction. So those little, simple nuances that I had to also remember too because I taught junior high, which most of them were fairly comfortable with their, you know, at least their basic skills. And I'd heard those terms where suddenly, you know, Tammy would bring up to me, “You're gonna have to help us out with that” because that it's easy for you to say that it's causing a problem and that makes us then, you know, have those moments of pause that you're like, “Oh yeah, you're right. I've got to do that.”

Tami Brancamp: Just a little aside on that with we just finished a pilot study with two groups of people doing online intervention. So that background of knowledge, you know, say you got 10 people in a group, and you could see the people who go, “Oh yeah, I remember that. I remember that math language.” You're getting, the nodding like, “Oh yeah, that's right.” And then there's others who have like, “I don't understand what he's saying.” The look. So, it's really fascinating to make sure that we pay as much attention to that background as we do in language.

Katie Strong: Yeah. Interesting, interesting.

Dave Brancamp: I don't know if you want to go down that path, but like when we hit time, you know, which is an element that folks aphasia really want to work with, right? And yet, it's a whole different concept mathematically, because we are used to in almost all the countries we work with of things from, you know, basically what we call base 10 or zero to 100 zero to 10, we can play time is in elements of 12. And so, like you might say it's a quarter past, you know, like one, that's not a 25 it's written as 1:15. And you know, what does that mean? And, oh, I don't know. I don't know how I'm supposed to be at the bus stop or the doctor appointment or whatever they may be going to.

Katie Strong: Right, right.

Dave Brancamp: And a lot of our groups found that to be a huge help, you know. And as much as we all laugh, you probably at least most of us remember when we were in elementary school having little clocks that we might play with.

Katie Strong: Right

Dave Brancamp:  We call them our Judy clocks from when we were as teachers. But it's like, as simple as those are, those are what you need to bring back and go, “Let's take a look at what you know, because it's a quarter of the circle, and that's where it got its name from.”

Tami Brancamp: But it's one over four, like 1/4 one quarter.

Dave Brancamp: But that's not how we'd write it in time. It's actually whatever the hour is and the 15, and you're like, “Where'd that come from?” So, it was very fascinating to watch,

and especially when we did some work with some of the clinicians, are just like, “Oh, you're kidding. I didn't even think about that.” It's because we knew it. we transition it naturally and not thinking, “Oh my gosh, my brain now has to re-picture this”. So.

Katie Strong: It is fascinating.

Tami Brancamp: And that you can see how much language is involved.

Tami Brancamp: Huge. Huge.

Katie Strong: Yeah, well, I'm excited to talk about the projects and research that you've been doing. You gave us kind of a teaser about these online groups. Should we start there?

Tami Brancamp: Maybe, we aren't there. We haven't analyzed all the data…

Katie Strong: I'm curious.

Tami Brancamp: Yeah, that'll be a teaser. We are working with our partner, Carolyn Newton. She's in London, and she is at University College London. She's done some work in mathematics and aphasia, and also her doc students, so we're working with them. They did all the assessment with my students. And then Dave and I did intervention. We had two groups. We had, like, a Level 1 and a Level 2. Everybody had aphasia. And we did group intervention primarily because Dave and I have been working with Lingraphica and Aphasia Recovery Connections Virtual Connections.

Katie Strong: Yep.

Tami Brancamp: Since March of 22, we've been doing it every single month.

Katie Strong: Amazing.

Tami Brancamp: We had some time off. Yeah, but you know, what's so crazy is that we average about 38 people who come on to do the session.

Katie Strong: Wow!

Tami Brancamp: Oh, I know, with a range like 19 to 50 people.

Katie Strong: That is amazing, but such a testament that people are interested in this topic.

Tami Brancamp: That's what made us keep pushing forward. Because if that many people show up, there's an interest and there's a need.

Katie Strong: Right.

Tami Brancamp: You know? But how do we how do we help is the challenge. We are in the process of analyzing, did we could that group in the way that we did it, like twice a month over three months? Would that impact change? They could hold it at the end of the treatment. And then we also did 30 days later, so we'll see. And then we also did some we did the math, attitudes and perceptions.

Katie Strong: I took it so maybe give people a little bit of background on what this is.

Tami Brancamp: Yeah. So this is a we looked at a lot of different tools, and this one is called, what is it called Attitudes Toward Mathematics Inventory. And it was designed for adults, college age, students and adults. There's a lot for children. But this is like, really, you know, what do you think about math in terms of you like it, you don't like it. Is it important? Not important. And so there is a lower number means that you are less confident, less familiar.

Dave Brancamp: You might not like it. You might not like it as much.

Katie Strong: And it might give you a rash.

Tami Brancamp: (Laughs) It might give you a rash!

Dave Brancamp: I'm sorry.

Tami Brancamp:  Right, all the things that it does. It's up to a point of 200 Do you want to share what your score was?

Katie Strong: Well, I didn't calculate it. I just did the ABCDE, but I'm gonna guess it's in the lower like 25th.

Tami Brancamp: Yeah.

Dave Brancamp: So let me ask you, what was your last math class?

Katie Strong: It was a statistics class in my PhD program.

Dave Brancamp: And how did that class make you feel? Were you like, “Oh, I'm so excited to go!” or like, “Oh my gosh, I just got to get this done.”

Katie Strong: I wanted to get out of there as quickly as I could. I tried hard, and I just kept, I think I kept telling myself it was hard and I couldn't do it, and it just and it was.

Dave Brancamp: So, if you think about that, for us as adults, right? Or anybody, even kids. Take our kids. Whatever your last class is, it sits with us. It's a memory we carry. And then math has its unique way of, kind of building on itself. And then it can bridge to a couple different areas and what have you, but it builds. And if your last class wasn't the most pleasant. You didn't score well, or you didn't have a teacher that you could relate with, or whatever it was, you probably don't have a real fun feeling of math. So that leads to our perceptions, right? And it's and you know, using this we've done this with some of your students as they go through soon to be clinicians, and as soon as they took it and then had us talk, they you almost want to say, “Let's take it again”, because our feeling is of that last class. But when you find out, what we'll probably do is adding, subtracting, multiplying, maybe division, not likely. But what we call basic life skills, it may change how you took the test or take the inventory, because, you know, like for me, it's still, it will never change the fact of giving a math problem over an essay. I'll give you guys the essay. I'll take the math problem. But it's just, you know, is it important your everyday life? Well, how often do you do your statistics on an everyday life? That was your last class right? Not a lot, maybe some. But it's, you know, it's becomes an interesting whatever sitting with us probably has a feeling. If we come in with a bad attitude toward what we're going to teach or share with you, no matter whether they have aphasia or if it's just us in a general setting, they're going to know you don't like this, then why should I spend time with it so we that's the My purpose is make it so that they enjoy even if it's difficult, we're going to enjoy it so that otherwise, you know, I'm already behind because you don't like it. So why should I like it?

Katie Strong: And I love that because, I mean, I know that, like hard work

can be fun. I mean, in a therapy situation, hard work can be fun, but thinking about this from a math standpoint really is kind of a game changer for me.

Tami Brancamp:  One of the things, and I think we'll come back to the research a little bit. But Dave likes gamification. I don't really like to play games, right?

Dave Brancamp: You're getting better!

Tami Brancamp: But you have to, you know.

Dave Brancamp: I will pick up like dice. We try to do things that we figure our folks could find rather easily. You know whether you have dice from a Yahtzee game where you can go pick them up and a deck of cards. Almost everything I do with them are one of those two. It might take a little more looking, but I'll we often use what are called foam dice so they don't make all that noise, because sometimes too much noise can be very bothersome. And then using, like, the whiteboard or something to write with helps so they can see, because sometimes you'll be playing a game and they'll have no idea of the math that's involved and why there might have been, like, a strategy or so on.

Tami Brancamp: When we do work with people using cards and dice to generate the numbers, we have activities we do and we make it aphasia friendly, but we'll also discuss, maybe after the fact, “All right, so how did you do? Where was it difficult? I want you to recognize that you were working on executive function here. You were giving it strategies and thinking and multiple steps ahead.” So that they can recognize it isn't a kid game.

Katie Strong: Yeah, just a game.” Yeah.

Tami Brancamp: It’s not just a game. It's making it fun and a little bit more lighthearted. If we can lighten it, but still make it skilled intervention, I'm not in there to play games and win. But having a give and take, a little competition, some laughter, some humor, while we're doing the intervention. To me, that's a lovely session.

Dave Brancamp: One of the things Katie, we found, too, is there's not a lot of good tests out there for math to diagnose the problem. You can find out by taking the different tests, and you and Tammy know the exact names, but they'll say, “Well, Dave has a problem doing math.” But now where do I start? Is a whole different game, because they build, as we said earlier, and if I don't start at the right spot the building block, I get a sense of failure immediately, because I can't do it, whereas you need to just keep backing up, just like you do in language, you keep backing up till you find my starting point. And that's one of the areas we'll maybe talk about later, is those things we're trying to figure do we work on finding a better way to assess the math, to truly know what's Dave or your client or whoever, whatever they're doing, because sometimes it could be simply the language, like we had with the one gentleman who has great math skills.

Katie Strong: Right.

Dave Brancamp: And others could be I can't even tell the difference between these two numbers, which is larger or smaller. And so now we have to start back at what we call basic number sense. It can be anywhere in that game, and it's like, well, they can't add. Well, do we know they can't add? Or do they just not recognize that six is smaller than eight.

Tami Brancamp:  Or how did you let them tell you the answer. If you only get a verbal response versus writing response, or, you know, selecting from four choices, you know. All of those give us different information when you're when you're having to blend a language disorder and a numeracy disorder.

Dave Brancamp: Because that one gentleman, he struggles immensely with anything with a two in it, so 20s, just…so you could easily say, “Wow, there's no way this man has math skills.” I mean he's doing complex fractions. He just couldn't tell you it’s one over two. It was be like, I don't know what that is called.

Katie Strong: Fascinating.

Dave Brancamp: We enjoy the game part. And one of the pieces in this last research we did that was a new thing, right? We didn't even think of it prior was what we call a home program. Taking the game we did, putting it in friend aphasia friendly language with pictures so they could practice them.

Katie Strong: Okay.

Dave Brancamp:  Because we would not see them for like a two they was every two weeks. So, some could practice. I would say our Level 1 -  our folks working on foundational sets practiced more than are more advanced. Which was very fascinating.

Tami Brancamp: What we were doing in this research, the most recent one, we would encourage people to, you know, take a photo, take a screenshot of the work we're doing. But we also did it too, and then we put it into a page with an explanation, and then we would send it so that they could, ideally practice with a family member or a friend, or by themselves. You know, that's also a variable for people, right?

Dave Brancamp: And what we found in it, they needed more pictures. In our first attempt, we didn't put as many. So we would ask them, “since you wanted this, did that help?” “Not really.” They're honest.

Katie Strong: Yeah.

Dave Brancamp: We appreciate that. And they're like, Well, what? Why didn't it like, well, it, even though we tried to make it as aphasia friendly language, it was just too much word

Tami Brancamp:  Too many words.

Dave Brancamp: Too many words. So then we started asking, “well would more pictures help?” “Yes.” So we did that. So they helped us. It was amazing to watch.

Tami Brancamp: So that research project will we can get to down the road once we figure out what was going on. What we did share with you was the survey that we did with speech language pathologists from the United States and the United Kingdom. So we thought, well, Carolyn's there, and we kind of look at math a little bit similarly. So we had 60 participants who completed the study. We want to know, like, do you treat people with aphasia who also have math difficulties? If so, what are you doing? Dave and I still wanted to look at the attitudes and perception, because I still believe that's an influencing factor. But we also wanted to get a good sense, like when you are working with people with aphasia, who have number difficulties, what difficulties are you seeing? And then what are you doing? What do you use to assess?  And what are some of the barriers? So it gave us a nice overview, and that one's out for review currently. Anywhere from like, how many of you work on numeracy difficulties? About 35% responded with rarely, and 40% responded with occasionally, and 17 said frequently. And also, there was no difference between the countries.

Katie Strong: Oh, interesting.

Tami Brancamp: Yeah, I thought so too.

Katie Strong: But I also think too, you know, I mean, there really isn't a lot out there instructing SLPs on how to do this work in an evidence-based manner. So that makes a little bit of sense.

Tami Brancamp: It did, because I still felt the same way for myself, like, “Where do I go to learn how to do this?” Okay. I'm married to a math teacher, so I'm learning right? It's a lot of give and take. And Carolyn, our partner, she's very good about when we're talking about this she's like, “But not everybody has a Dave on their shoulder.” Like, “No, they do not.” Because even today, I'm still a little cautious, like if I had to go do all this solo, I have some holes that I want, and those are the things I want to help us create for future training opportunities and education continuing ed that would help clinicians who really want to do this and they have a client who wants to work with it, right?

Katie Strong: I hope that's a large number of people, because I think, you know, I think that this is really a significant challenge that I hear so often from support group members or people that I work with who have aphasia.

Tami Brancamp: I really think that's why we keep going, because we hear it from our we hear it from our clients.

Katie Strong: Yeah.

Tami Brancamp: We're not hitting it as much in acute care, for sure, rehab, you might get a little sample that is going on, but it's usually that outpatient. And then the longer term, like the they have some of the big needs met. And then we've got time to maybe look at math. But for some people, math should have been math and language together could have been hit earlier. But who's to say, you know?

Dave Brancamp: Well, you would know it best because I've asked when we first started this there would be like one, Tammy would give me one of her classes, and I would talk to them about math and absolutely deer in the headlight looks, “Oh my gosh, what are you going to do?” to by the end realizing “We're going to make this as fun as we can. We're going to use dice and cards, and we're going to do pretty much what we call foundational adding subtracting skills that they were welcome”, but you already have so much in your course to do that we just don't even have time. So that becomes this very interesting, because, you know, one of the big questions Tammy always asked me is, “Well, how can I know this pedagogical, or the reason behind?” I know they'll be able to hear but, I mean, I've done this now for 30 plus years, so there's a lot in my head that I have to figure out, how do we do this? So I can see this is the problem by how they addressed it without them having to take a whole other set of courses.

Tami Brancamp: Yeah, we can’t. There is surely not room for whole courses. So it's got to be embedded in existing coursework, or continuing ed opportunities after training.

Katie Strong: Or both, right?

Tami Brancamp: Yeah, I think both. Some of those barriers that we found people saying was, you know, there's not training on it, which I agree.

Dave Brancamp: There’s not the resources.

Tami Brancamp: Yes, there’s not the resources. And are the tests that people use. They have some sampling of math. But my question always is, “Okay, so I give this little bit of math in my aphasia test or something else like and now, what? Well, I know what they can't do, but what does that mean? And how might I support them for relearning?” I found it more helpful to look at it from a developmental perspective. I'm going to learn a, b, c, d, and I'm going to learn x, y, z, and then it helps me understand, like, “Where might I start?” Because I don't have to go down to counting dots, right? That number sense larger, less than visually. If that's not where the client needs to be. But learning where they need to be, we need better assessments for that. I don't know if that's something we're going to be able to tackle or not. I mean, Dave spent quite a big part of his professional career, developing assessments. So, it would be logical. But there's so many pieces to do.

Katie Strong: Right? It's a big it's a big undertaking.

Dave Brancamp: Well, there's so much that you gain by finding out from the client how you did the problem. It could be four plus six is what? and they write two. Well, I need to know why you think it's two. So did you think that was subtraction? Because they just didn't see the plus symbol. Well, you know? Well, then they have some good math. There's some good math there. They did the math correctly if they subtracted it. It's not the answer I'm looking for. And so could they say, you know, when you asked it if you were a person and he’s like, “Katie, so if I gave you six things and gave you four more, how many your total?” Do you know what that even meant to do? These things that just gives us clues to where your math might be and for unfortunately, for a lot of us, which makes it hard for me, I feel bad that they didn't have the experience is ones and zeros have some very powerful meanings in math that unfortunately, scare a lot of folks.

Katie Strong: Yeah, right.

Tami Brancamp: I never learned the fun stuff of math, you know. There's some tricks and some knowledge and some skills that I, you know, good math teachers will teach you, and I just didn't really learn those. So, Dave's teaching me just because I were doing this together? I don't know. I kind of was thinking like what we talked a little bit about, what does the intervention look like?

Katie Strong: Yeah.

Tami Brancamp: Gamification, making it fun, not using workbooks. We're hoping that we could utilize some of the home programs that we've created, and share those as part of the teaching.

Dave Brancamp: And like the game. I think I told you that we did with that one gentleman with Krypto. It could simply be like a target number or something of that nature, but it's fun to have when we did with our both groups with Virtual Connections, or our research groups,

other people could find out, like, you could solve it one way, Katie. Tammy could do it a different way, and I could do it a completely different way. And it was fascinating to watch the groups, like, I had no idea you could do it there. And that's what we need to hear So that people go, “Oh, you don't have to do it just one way.” Because I, unfortunately, and some are my colleagues, they forced, “I need you to do it x way.” It's like, “Well, okay, maybe to start. But now let's open the door to all these other ways you can, like, add a number or whatever.” And because it always fascinates me when we do, is it multiplication or subtraction? Now I forget, but one way Tammy is, like, “I never learned it that way. I always…” and, you know, it was just how she grew up. It was what you were taught.

Tami Brancamp: Well, like multiplication. When I'm multiplying multiple numbers, it's like, I'm kind of just adding multiples of things. So, how I get to the answer is very different than how Dave does, yeah, and we've had experiences with care partners, who we were doing some of the pilot work, who felt very strong that their way was the only way. Is this some generational differences? I suspect there's some of that, but it's also just, it's personality. This is how I know how to do it, and this is how it should be done. Well, not necessarily.

Katie Strong: It really mind blowing for me to be thinking about. I mean, I know that, like, you can teach things in different ways, but I just didn't really think about it from a math standpoint, because, probably because I know how to do things one way. If I know how to do it, it's probably one way, versus having more versatility in “If this doesn't work, try something else.”

Dave Brancamp: But like on a deck of cards at least the ones we use, they'll have, like a seven of diamonds. There's seven little diamonds on that card. Well, nothing else. Put your finger to them. There's nothing wrong with counting 1 2 3 4 5 6 7. Now, when you move over to the three, go 8 9 10, and there's your answer. They're like, “I can do that?” “I'm like, sure you can!” I can use my fingers? You know, it's, it's those, it's those little things that, unfortunately, probably for a lot of us and a lot of our clients, went through, at least in my experience, in math as we went through school, we took away those, what we call manipulatives in math, that you learn it right, bringing them back now, so that they're like, “Oh, I can do this”” So they can see it, or they can write it in a different way, or, you know, whatever it takes to help them. That's one of the pieces that's so amazing.

Tami Brancamp: We definitely support a multi modal approach. Not just one way.

Katie Strong: Which, I think the clinicians who are listening to this conversation will feel like, “Oh, I do a multi modal approach in all of the other things that I do in my interventions.” And so, you know, that makes sense.

Dave Brancamp: And that's where we saw that piece of saying that we're trying to unite math and language. The two of those do play together. You know, it's like because you just said you spend weeks and weeks with all your future clinicians training them on all these skills and language, so many of those will play out just as well in math, except to do it in a different way.

Katie Strong: Mmm. So we've talked about what the intervention might look like, and we'll be excited to see what comes out from your projects that you're in the process of analyzing but looking ahead, what excites you most about where this field could go?

Dave Brancamp: Oh my, that's the question!

Tami Brancamp: There's a lot of work to be done. It actually is…it's fun. We are wondering, you know, how might it be if it's on a one on one, a more traditional model, right for our outpatient settings, versus small groups.

Katie Strong: I'll say this. I should have said it earlier, but for those of you listening, I'll put in a link to Virtual Connections and if you're interested in seeing Tammy and Dave's math Aphasia + Math.

Dave Brancamp: Yeah, it's aphasia plus math. It would be Level 1 or 2. They can come watch the whole thing. It’s fascinating to watch them how they work.

Tami Brancamp: They are best teachers, yep, without a doubt.

Dave Brancamp: To your last question, “So that's with the clients?” But you know, there's been and we've talked on and we've touched on, like, “how do we help our clinicians?” And then the unfortunate side of that stool that sometimes gets forgotten is, what could we do for our caregivers? Does this help? Because we've all been taught differently. so sometimes you might look at one of the gamifications we did and went, “Oh, I can't do that. That's not how I add.” We have a very set format, or do they understand the language? Do we make it clear enough. So, you know, we're I think that's a great question, because then we get torn to just time in the day to say, “But I want to still work with my clients, but we need to help clinicians so they can help us, and don't forget the caregiver in there.” I know it's not an easy answer. It's not the it's nothing nice and smooth, but it's kind of the one that we've been really what is to what are we doing.

Katie Strong: And probably also why it this hasn't, there aren't tons of resources already developed, right? That it is complex.

Dave Brancamp: Well, and I will tie back to our attitudes. What we found, we were fortunate enough to do….

Tami Brancamp: IARC. The International Aphasia Rehab Conference. we presented there.

Dave Brancamp: So some of our beginning there's an awful lot of interest out of Australia and Europe. But Australia and Europe, and I'm not trying to sound bad or negative, but they take look at math very differently than like England and the United States for sure does. That's a natural like thought, we don't accept the term. “I don't do math well.” They don't like to say that. There's an increased interest, at least in those two areas of the world, to when we but we gotta strengthen this, this is important. So, we've found that very fascinating, that some of our folks who've drawn an interest and set out of this come out of the main countries of Europe, or from Australia, because they don't mind talking about a subject that we often go, “I’m good at this, right? Let Dave solve it.” And it's like, well, but I don't have the skill set that all of you SLPs have.

Tami Brancamp: In our earlier conversations, we touch on the fact that United States, it's okay for me to say, you know, “I don't do math, right?” It's okay, and it's sort of accepted in some cases, it's kind of a badge of honor in some ways. But if I were to say, “Oh, I can't read” you know, that's we one. We want to help if somebody admits it. But there's a personal sense of shame attached. So, in our country, I believe the perceptions are different. You have the person who's had the stroke, has survived the stroke, has the aphasia, and now also has the math difficulties. That's a lot to navigate, and I respect in our in our world, as a clinician, I can't address all of it. So following that Life Participation Approach, we're going to let our clients be our guide. Support, train, and look at where their priorities are. And it's never enough. There's never enough therapy, never enough opportunity to be in a group environment, because not everybody has access to that, you know, but I think, “Where can I make a difference?” Like, that's probably my question. Like, I can't fix the world, so let me keep backing it down, backing it down, backing it down. And if I can make a difference with 5, 10, 15, 20, people, Hey, and then let those ripples go as they go out and make a difference and learn. I think that, in itself, is powerful.

Katie Strong: Beautiful, and certainly is conjuring up Audrey here. Well, I've got one last question for you as we wrap it up. But you know, what would you say to an SLP, who's listening right now and thinking, I want to help my clients with math, but I don't know where to start.

Tami Brancamp:  So one of, I think one thing for me is you do know basic math. You know everyday math. You do know how to do this.  So one just start. You can get a little assessment. You can use the existing ones that are out there with our aphasia batteries or the Numerical Activities for Daily Living.

Dave Brancamp: I would say, a deck of cards are not hard, you know, hopefully they have or some dice, yeah, and use those to generate the numbers. Or bring in, like, when they want to do tips, we would often just bring in receipts of anything and just say, “Let's say something cost $18.72. Round it up to 20 and make it a friendly number.” So it's around 20, So it's a little bit easier for them to grab onto and hold, and it's okay to say, because we've done it in our own sets going through, “Oh, wait a minute, six plus six is not 13. Look at what I did here. I let me, let's check this and add it.” Because sometimes you'll hear just even, you know, like when any of us are doing something, you look and go, oops, I made a mistake.

Tami Brancamp: Okay, right?

Dave Brancamp: It's all right, hey, to make mistakes and say, that's what we all do. And then, you know, but I mean to me, it's if we can get, like, if you want to use one or two problems off a worksheet, use it as a driver to start discussion and say, “So what can we do?” And see if they can do anything. Because sometimes it's amazing what we'll find out is just knowing that 16 is a bigger number than just 12 is let them and then what's the difference between right there, you could figure out subtraction if they know it or not. And we often will in if they have a chance to look on the website or any of this stuff, we'll take out, like all the face cards, we'll take out the 10. Keep moving it down to numbers that they're comfortable with, like dice will only be the numbers one to six, yeah, but if I use two dice, I could make some interesting two digit numbers, right, that are in that range. So it's just things that make it so they can grab on. And then you can start adding and changing rules and some of the math games they may have seen, they just adjust them so that they have access points. The true rules of Krypto is, you must use all five cards in order to get a point. Well, we just change it usually is two, right?

Tami Brancamp: Like we do for everything we can modify.

Katie Strong: I love this. And I mean, I'm thinking, most clinics have a deck of cards and dice.

Tami Brancamp: In most households in general, not but in general, you're going to have access to those tools. We didn't want people to have to go buy crazy stuff. I think there's one challenge I do want to think about and put out there. So, our new clinicians who are graduating, let's say they're in their mid-20s, and I know there's a range they are doing online banking. How are they going to support an older adult?

Katie Strong: Oh, right.

Tami Brancamp: Very structured and rigid in their checking account. I think we have to think about some again, different ways. None of the students that I teach today, and even our own son, they don't have a checkbook. Yeah, they don't write checks. So that's gonna introduce another variable down the road, but in the meantime, cards, dice, numbers, gamification, simplifying, watching language, thinking about executive function, number of steps, how we how we speak, the instructions. Give the directions. It's language.

Dave Brancamp: And ask the client what they think or what they might have heard, because it's interesting what they would have, what we've learned from them as well.

Katie Strong: Thank you so much for being a part of our conversation today, and for the listeners, I'll have some links in the show notes for you to check out for some info on Aphasia + Math. Thank you.

Tami Brancamp: Thanks for having us.

Dave Brancamp: And thanks for playing with us too. Thank you.

Katie Strong: On behalf of Aphasia Access, thank you for listening. For references and resources mentioned in today's show please see our show notes. They're available on our website, www.aphasiaaccess.org.There you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [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

Take aways:

1. Learn about Hilary and Steve’s journey to enhance care for people with aphasia.
2. Learn about communication access as a health equity issue.
3. Identify systematic gaps and the disconnect between training and real world needs of people with aphasia.
4. Learn about the development of the MedConcerns app.
5. Get sneaky! Learn how the MedConcerns app can serve four functions simultaneously: 1) meeting the needs of someone with aphasia 2) serving as a tool that providers can use to communicate with people with aphasia 3) providing education to providers who learn about aphasia as they use the app 4) bringing SLPs and other providers together to meet the needs of people with aphasia

Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, Young Person’s Brain Injury Group, and Thursday Night Poets. 

I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.

I’m today’s host for an episode that will feature Hilary Sample and Dr. Steven Richman to discuss their app, MedConcerns. We’re really excited to share this with you, so I’ll jump into introducing them.

Hilary G. Sample, MA, CCC-SLP

Hilary is a speech-language pathologist, educator, and co-creator of MedConcerns, a communication support app that helps people with aphasia express medical concerns and participate more fully in their care. The app was born out of her work in inpatient rehabilitation, where she saw firsthand how often individuals with communication challenges struggled to share urgent medical needs. Recognizing that most providers lacked the tools to support these conversations, she partnered with physician Dr. Steven Richman to create a practical, accessible solution. Hilary also serves as an adjunct instructor at Cleveland State University.

Steven Leeds Richman, MD

Dr. Steven Richman is a hospitalist physician and co-creator of MedConcerns, a communication support app that helps people with aphasia express medical concerns and participate more fully in their care. With nearly two decades of experience in inpatient rehabilitation, he saw how often communication barriers prevented patients from being heard.

In partnership with speech-language pathologist Hilary Sample, he helped translate core medical assessments into an accessible tool that supports clearer, more effective provider-patient communication.

Transcript:

(Please note that this conversation has been auto-transcribed. While we do our best to review the text for accuracy, there may be some minor errors. Thanks for your understanding.)

Jerry Hoepner: Well, Hello, Hillary and Steve. Really happy to have you on this aphasia access conversations podcast. With me, I'm really looking forward to this conversation. It's maybe a year or 2 in the making, because I think this was at the previous Aphasia Access Leadership Summit in North Carolina. That we initially had some discussions about this work. And then life happens right? So really glad to be having this conversation today.

Hilary Sample: And we’re really glad to be here.

Jerry Hoepner: Absolutely. Maybe I'll start out just asking a little bit about your background, Hillary, in terms of how you connected with the life participation approach and aphasia access and how that relates to your personal story.

Hilary Sample: Sure, so I haven't been in the field long. I graduated in 2019 and began my career immediately in inpatient rehab. I have to remember. It's talk slow day, and I'm going to make sure that I apply that as I speak, both for me and for listeners. So I began on the stroke unit, primarily in an inpatient rehab setting, and I've worked there for the majority of my career. I came in as many, probably in our field do, trained and educated in more of an impairment based approach but quickly when you work with people, and they let you know who they are and what they need. The people that I worked with on the stroke unit, the people with aphasia let me know that they needed more of a life participation approach. You know I learned how vital it was to support communication and to help him, you know, help them access their lives, because most of the time I entered the room. They had something they wanted to communicate, and they had been waiting for someone who had those skills to support communication in order to get that message across. So it wasn't about drills it was about. It was about helping them to communicate with the world, so that I spent more and more time just trying to develop my own skills so that I could be that professional for them and that support. And then that took me. You know that it just became my passion, and I have a lot of room to improve still today, but it's definitely where my interest lies and at the same time I noticed that in general in our hospital there was a lack of communication supports used, and so I thought that in investing in my own education and training, I could help others as well. And so I started doing some program development to that end as well with training and education for healthcare staff.

Jerry Hoepner: I just love the fact. And actually, our listeners will love the fact that it was patients who connected with you, people with aphasia, who connected with you and encouraged you to move towards the life participation approach, and how you learn together and how that's become your passion. That's just a really great outcome when people can advocate for themselves in that way. That's fantastic.

Hilary Sample: Yeah, it really meant a lot to me to be able to receive that guidance and know that, you know there's an interest in helping them to let you know what they want from therapy, and that was there. But a lot of times the selections were impairment based, and then we. But there was something wrong, and we needed to uncover that. And that was, you know, that was the push I needed to be able to better support them.

Jerry Hoepner: Yeah, that's really great, Steve. I'm interested in your story, too. And also how you came to connect with Hillary.

Steve: I started as a trained as a family physician, had a regular outpatient office for a number of years, and then transitioned into inpatient rehab. That's where I really started to meet some people with aphasia. For the 1st time. Hilary and I have talked a few times about my training and education about aphasia before we met each other, and it was really minimal in Med school. They had lectures about stroke and brain injury, and some of the adverse effects you might get from that. And they, I'm sure, mentioned aphasia. But I really don't recall any details, and if they did teach us more, it would just nothing that I grasped at the time. So I would walk into these patient rooms, and what I would normally do for my trainings. I would ask people all these open, ended questions to start with, and then try to narrow down, to figure out what their problems are, and with people with aphasia, especially when they have minimal or no language skills. They couldn't. I was not successful at getting useful information out, and I remember walking out of those patient rooms and just being frustrated with myself that I'm not able to help these people, and the way I can help everyone else, because if I don't know what's going on. you know. How can I? It was really challenging and I really didn't know where to go. I talked to a few other doctors, and there didn't seem to be much in the way of good information about how to move forward. Eventually I met Hillary, and we would have these interesting episodes where I would talk or try to talk with the patients and get minimal, useful information. And Hillary would come back and say, they're having this problem and this concern. And with this medicine change. And how do you do that? How and that kind of started our us on the pathway that we've taken that recognition from my end that there's a lot that can be done. And the yeah.

Jerry Hoepner: Yeah, I love that story, and it's a really good reminder to all of us that sometimes we forget about those conversations, the conversations with physicians, with other providers who might not know as much about aphasia. I'll just tell a really quick story. My wife used to work in intensive care, and of course she had been around me for years, and they would have someone with aphasia, and her colleagues would be like, how do you even communicate with them, and she would be coming up like you, said Steve, with all of this information about the patient, and they're like, where are you getting this information. The person doesn't talk.

Hilary Sample: Yes.

Jerry Hoepner: And that just emphasizes why it's so important for us to have those conversations, so that our all of our colleagues are giving the best care that they can possibly provide.

Hilary Sample: That's a great story. That was very much like almost verbatim of some of the conversations that we initially had like, where is this coming from? They don't talk, or you know they don't have. Maybe they don't have something to say, and that's the assumptions that we make when somebody doesn't use verbal communication. You know, we quickly think that maybe there's not something beneath it, you know. I have a story as well. So what led to a little bit more toward where we are today. sitting in those rooms with people with aphasia and apraxia and people with difficulty communicating. There's 1 that stuck out so much. She was very upset, and that it was. And I we had just really developed a very nice relationship, a very supportive relationship she kind of. She would let me have it if she was upset about something. We had really honest conversations and it and it was earlier on to where I was stretching my skills in in using communication supports, and she really helped me grow. But I remember being in her room one day, and she had something to share. And this is a moment that repeated itself frequently, that the thing that needed to be shared was medical in nature, you know, in inpatient rehab. That's a frequent. That's a frequent situation that you run into. And we sat there for maybe 15 min, maybe more. And we're working on getting this out. We're narrowing it down. We're getting clarity. We're not quite there yet, as I said, I'm still new, and but the physician walks in and we pause. You know I'm always welcoming physicians into the into therapy, because I really see that we have a role there. But and talk slow. Hilary, the physician, asked an open-ended question like Steve was talking about asking those open-ended questions as they're trained to do, and it was a question that the person with aphasia didn't have the vocabulary available to answer, and before I would jump in, that person shrugged her shoulders and shook her head that she didn't have anything to share with them, and I was like, but we had just been talking. You know, there's definitely something, and I think I just sat there a little bit stunned and just observing more. And you know the physician finished their assessment mostly outside of verbal communication, and left the room, and then I spoke to her, and we. We tracked down what the rest of her concern was, and clarified it, and then I found the physician who was not Dr. Richman, and I shared all the things that they had told me that she had told me, and I remember her saying I was just in there. She didn't have anything wrong. and I and I was, you know, I told her, like the communication supports that I used, and you know we got that. We moved forward with the conversation. But there were a few things that stuck out to me in that, and one was the way that the physician was communicating wasn't using. They weren't using supports. For whatever reason, I didn't have that knowledge yet. We dove into the literature to learn more later on. The second thing was that the person with aphasia seemed to give up on the provider, knowing that since supports weren't being used. It wasn't going to be a successful communication attempt. So why even bother, and that definitely fits her personality. She's like I give up on you. And the 3rd thing was that the education about that somebody has something to share the education about. Aphasia was lacking, so you know that the person's still in there. They still have their intellect, their identity, their opinions, beliefs. But they didn't have the ability to communicate that piece seemed to be missing on the part of the provider, because they were saying they didn't have anything to share. So, it was like, I said that situation happened repeatedly, and very much. Sounds just like yours, but it hit me how much there was to do. And so, hearing, you know Steve's experiences that are on the other side of that. Such a caring, the one thing that led me to want to speak to Steve is that he's a very compassionate caring physician, so it's not a lack of care and compassion. But what else was going on what led to this, and we started learning that together. It was really interesting for me to learn how Hillary's 1st assumption is. Why aren't these physicians using communicative supports or other things that we were never taught about? The assumption that the docs know all this, and there's plenty we don't know. Unfortunately, there's, you know there's so much out there.

Steve Richman: The other thing Hillary touched on that was so true in my experience, is here. I'm meeting people that had a significant event, a traumatic brain injury, a bad stroke. And we're so used to judging people's intelligence through their speech. And they're not speaking. And it's so easy to start thinking there's just not much going on up there, and I didn't have the education or information or training to know for a long time. That wasn't the case until my dad had a stroke with aphasia. And so yeah, there's still plenty going on there just hard to get it out. And even as a medical provider, I really wasn't fully aware of that. And it took personal experience and learning from Hillary to really get that. it's still there just need to find out how to help them get it out.

Jerry Hoepner: Yeah, I think that's a rather common story, especially for people with aphasia. But even for people without aphasia, that sense that the doctor is coming in, and things have to happen. And I know I'm sitting here with Steve, who is very compassionate and wants to ensure that communication. But I think there's a little bit of fear like, oh, I can't get it out in this context, and just bringing awareness to that, and also tools. So, tools in education. So those physicians can do the work that they need to do and get that knowledge that they may have never been exposed to, and probably in many cases have never had that training to communicate with someone so like you, said Steve. How are you supposed to know when they didn't train us in this? And I guess that brings us back around to that idea that that's part of the role of the speech language pathologist and also kind of a vacancy in tools. Right? We're. We're just missing some of the tools to make that happen consistently across facilities and across people. So, I'm really interested in hearing a little bit about the tools you've created, and kind of the story leading up to that if you if you don't mind sharing.

Hilary Sample: Absolutely. 1st I'll share. There's a quote, and I'm not going to remember who said it. Unfortunately, I'll come up with it later, and I'll make sure to share with you. But that healthcare is the medium by or I'm sorry. Communication is the medium by which healthcare is provided, or something to that extent. We need communication in order to ensure equal access to health care. And like you said that gap, it's really big, and it's a systemic issue. So, leading up to us, coming together, we had those experiences on both of our ends. I realized that I wasn't a physician. I already knew this, but I also I was trying to provide communication support to enable them to communicate something on a topic that I'm not trained in. In order to really give what it's due right? I don't know what questions that Steve is going to ask next, you know I tried, but I and I tried to listen, but I didn't always have, you know. Of course, I don't have that training, so know your limits right. But I did. The general overarching method that I was using was we'd have concerns to choose from, including the question mark that enabled them to tell. Tell me that you're way off, or you didn't guess it, or it's not on here. And then narrow choices that I try to come up with, and we'd move on like that. And anytime somebody appeared to have a medical concern. There's those general topics that you would try to see if it's 1 of these things. One of these concerns, and then those would generally take you to a series of sub questions, and so on, and so forth. So, I recognize that this was repeatable. I also, at the same time as I shared, was recognizing that communication supports weren't being used. And that doesn't. That doesn't end with, you know, a physician that's also nurses nursing aides. That's therapists, including SLPs, and you know, so I'm doing a thing that can be repeated. Why not stop recreating it every time I enter the room and make it into something that I can bring with me a prepared material that I can bring with me and ideally share it with others. So, I again, knowing my limitations, know what I have to bring to that equation. But I knew that I needed to partner with someone that cared just as much but had the medical knowledge to inform that tool. So at 1st it was a print little framework that I brought, and what happened is, I came up to Steve, and I let him know what I was thinking, and he was open and willing to work together on this, and Hillary showed me these pictures that were kind of showing some general medical concerns, and brought up the whole concept and we initially were going for this pamphlet booklet idea, you know. If you have this concern, you go to this page to follow it up with further questions, and then you go to this other page to finalize the subs. We realized there was a lot of pages turning involved to make that work, and we eventually turned it into an app where you could take your concern, and we start with a general Hello! How are you? You know? Kind of what's the overall mood in the room today. And then what medical concerns do you have? And then from those concerns, appropriate sub questions and sub questions and timeframes, and the stuff that you would want to know medically, to help figure out the problem. And then go ahead. I'm sorry.

Jerry Hoepner: Oh, oh, sorry! No, that's terrific. I appreciate that that process and kind of talking through the process because it's so hard to develop something like this that really provides as much access as is possible. And I think that's really key, because there's so many different permutations. But the more that you get into those the more complex it gets. So, making it easy to access, I think, is part of that key right?

Hilary Sample: One thing that I'm sorry. Did you want to say? Yeah, I'll say, okay, 1. 1 part of it. Yes, the accessibility issue. Every provider has a tablet or a phone on them, and many of our patients and their families also do so. It made it clear that it's something that could be easier to use if that's the method somebody would like to use, but also having a moment where my mind is going blank. This is gonna be one of those where we added a little bit. This is what you call a mother moment.

Jerry Hoepner: Okay.

Steve Richman: The one thing that was fascinating for me as we were developing this tool is I kept asking why? And Hillary kept explaining why, we're doing different parts of it. And at this point it seems much more obvious. But my biggest stumble at the beginning was, why are these Confirmation pages. Why do we have to keep checking, you know? Do they mean to say yes? Do they mean to go ahead? And that education about how people with language difficulties can't always use language to self-correct. We need to add that opportunity now makes so much sense. But I remember that was a stumbling block for me to acknowledge that and be good with that to realize. Oh, that's really important. The other thing that Hillary said a lot, and I think is so true is in developing this tool. We're kind of developing a tool that helps people that know nothing about communication supports like myself how to use them, because this tool is just communication supports. You know, I hear these repeatedly taught me about the importance of layering the clear pictures and words, and the verbal, and put that all the well, the verbalizing, the app is saying the word in our case, so that could all be shared and between all that layering hopefully, the idea gets across right and then giving time for responses.

Jerry Hoepner: It sounds like the tool itself. Kind of serves as an implicit training or education to those providers. Right?

Hilary Sample: And there's the idea that I was missing when I had a little bit of.  So yes, all of those strategies. They take training right? And it takes those conversations. And it takes practice and repetition. And there's amazing, amazing things happening in our field where people are actually undertaking that that transformation, transforming the system from above right.

Jerry Hoepner: Right.

Hilary Sample: But one thing that a big part of this work was trying to fill the gap immediately. I know you and I had previously talked about Dr. Megan Morris's article about health equity, and she talks a lot about people with communication disorders, including aphasia. And you know there's and she mentions that people cannot wait. The next person pretty much cannot wait for that work to be done, though that'll be amazing for the people that come down the line, the next person, what can we do for them? So we also need to be doing that. And that's where we thought we could jump in. And so I think the biggest you know. The most unique aspect of MedConcerns is that, or of the tool we created is that it kind of guides the clinician, the healthcare provider, through using communication supports. So you know, when I go in the room I offer broad options, and then I follow up with more narrow choices, always confirming, making sure I'm verifying the responses like Steve talked about, and or giving an opportunity to repair and go back and then that I summarize at the end, ensuring that what we have at the end still is valid, and what they meant to say. And so that's how the app flows, too. It enables the person to provide a very detailed, you know, detailed message about what's bothering them to a provider that has maybe no training in communication supports, but the app has them in there, so they can. It fills the gap for them.

Jerry Hoepner: Absolutely. It's kind of a sneaky way of getting that education in there which I really like, but also a feasible way. So, it's very pragmatic, very practical in terms of getting a tool in the hands of providers. It would be really interesting actually, to see how that changes their skill sets over time but yeah, but there's definitely room for that in the future. I think.

Hilary Sample: We could do a case study on Dr. Richman.

Steve Richman: whereas I used to walk out of those patient rooms that have communication difficulties with great frustration. My part frustration that I feel like I'm not doing my job. Well, now you walk out much more proudly, thinking, hey, I able to interact in a more effective way I can now do in visit what I could never accomplish before. Not always, but at least sometimes I'm getting somewhere, and that is so much better to know I'm actively able to help them participate, help people participate. I love writing my notes, you know. Communication difficulties due to blank. Many concerns app used to assist, and just like I write, you know, French interpreter used to assist kind of thing and it does assist. It's it makes it more effective for me and more effective for the person I'm working with. It's been really neat to watch you know, go from our initial conversations to seeing the other day we were having a conversation kind of prepping for this discussion with you and he got a call that he needed to go see a patient and I'll let you tell the story. So we're prepping for this. A couple of days ago. I think it was this Friday, probably, or Thursday, anyways, was last week and I'm at my office of work and again knock on the door. Someone's having chest pain. I gotta go check that out. So I start to walk out of the room. Realize? Oh, that room! Someone was aphasia. I come back and grab my phone because I got that for my phone and go back to the room. And it's interesting people as with anything. People don't always want to use a device. And he's been this patient, sometimes happy to interact with the device, sometimes wanting to use what words he has. And so I could confirm with words. He's having chest pain. But he we weren't able to confirm. What's it feel like? When did it start? What makes it better. What makes it worse? But using the app, I can make some progress here to get the reassurance that this is really musculoskeletal pain, not cardiac chest pain. Yes, we did an EKG to double check, but having that reassurance that his story fits with something musculoskeletal and a normal EKG. Is so much better than just guessing they get an EKG, I mean, that's not fair. So, it would have been before I had this tool. It would have been sending them to the er so they can get Stat labs plus an EKG, because it's not safe just to guess in that kind of situation. So, for me, it's really saved some send outs. It's really stopped from sending people to the acute care hospital er for quick evaluations. If I if I know from the get go my patient has diplopia. They have a double vision, because that's part of what communicated. When we were talking about things with help from MedConcerns. Yeah, when I find out 4 days later, when their language is perhaps returning, they're expressing diplopia. It's not a new concern. It's not a new problem. I know it's been a problem since the stroke, whereas I know of other doctors who said, Yeah, this person had aphasia, and all of a sudden they have these bad headaches that they're able to tell me about. This sounds new. I got to send them for new, you know whereas I may have the information that they've been having those headaches. We could start dealing with those headaches from the day one instead of when they progress enough to be able to express that interesting.

Jerry Hoepner: Yeah, definitely sounds like, I'm getting the story of, you know the improvement in the communication between you and the client. How powerful that is, but also from an assessment standpoint. This gives you a lot more tools to be able to learn about that person just as you would with someone without aphasia. And I think that's so important right to just be able to level that playing field you get the information you need. I can imagine as well that it would have a big impact on medication, prescriptions, whatever use? But also, maybe even counseling and educating that patient in the moment. Can you speak to those pieces a little bit.

Steve Richman: You know, one of my favorite parts of the app, Hillary insisted on, and I'm so glad she did. It's an education piece. So many people walk into the hospital, into our inpatient rehab hospital where I now work, and they don't recall or don't understand their diagnosis, or what aphasia is, or what happened to them. And there's a well aphasia, friendly information piece which you should probably talk about. You designed it, but it's so useful people are as with any diagnosis that's not understood. And then explained, people get such a sense of relief and understanding like, okay, I got a better handle of this. Now it's really calming for people to understand more what's going on with them.

Hilary Sample: This is, I think you know, that counseling piece and education, that early education. That's some of the stuff that could bring tears to my eyes just talking about it, because it's; oh, and it might just now. So many people enter, and they may have gotten. They may have received education, but it may not have. They may have been given education, but it may not have been received because supports weren't used, or there's many reasons why, you know, even if it had been given, it wasn't something that was understood, but so many people that I worked with aphasia. That one of the 1st things that I would do is using supports. Tell them what's going on or give them. This is likely what you might be experiencing and see their response to that. And that's you know what aphasia is, how it can manifest. Why it happens, what happened to you, what tools might be useful? How many people with aphasia have reported feeling? And you might be feeling this way as well, and these things can help. And it's very simple, very, you know. There's so much more to add to that. But it's enough in that moment to make someone feel seen and you know, like a lot of my friends, or one of my friends and former colleagues, uses this, and she says that's her favorite page, too, because the people that she's working with are just like, yes, yes, that's it, that's it. And the point and point and point to what she's showing them on the app. It's a patient education page, and then they'll look at their, you know, family member, and be like this. This is what's going on this, you know, it's all of a sudden we're connecting on that piece of information that was vital for them to share. And it was. It was just a simple thing that I kept repeating doing. I was reinventing the wheel every time I entered the room, but it was. It stood out as one of the most important things I did. And so that's why Steve and I connected on it, and like it needed to be in the app. And there's more where that came from in the future planning. But we added to that A on that broad, you know, kind of that page that has all the different icons with various concerns, we added a feelings, concern emotions, and feelings so that someone could also communicate what's going on emotionally. We know that this is such a traumatic experience, both in the stroke itself, but also in the fact that you lost the thing that might help you to walk through it a little easier which is communicating about it and hearing education learning about it. But so those 2 tools combined have really meant a lot to me to be able to share with people, with aphasia and their families, and also another sneaky way to educate providers.

Jerry Hoepner: Yeah, absolutely.

Hilary Sample: Because that's the simple education that I found to be missing when we talked about training was missing, and this and that, but the like when Steve and I talked recently, we you know, I said, what did you really learn about aphasia? And you kind of said how speech issues? Right?

Steve Richman: The speech diagnoses that we see are kind of lumped in as general like the names and general disorders that you might see, but weren't really clearly communicated as far as the their differential diagnoses being trained as a generalist, we would learn about, you know, neurology unit stroke and traumatic brain injury. And somewhere in there would be throwing in these tumors, which are huge aphasia and apraxia and whatnot, and I don't think I recall any details about that from Med school. They probably taught more than I'm recalling, but it certainly wasn't as much as I wish it was.

Hilary Sample: and so that education can just be a simple way to bring us all together on the same page as they're showing this to the person that they're working with. It's also helping them to better understand the supports that are needed.

Jerry Hoepner: Sneaky part.

Steve Richman: Yeah, speaking of the sneaky part, I don't think I told Hilary this yet, but I'm sure we've all had the experience or seen the experience where a physician asked him, What does that feel like? And the person might not have the words even with the regular communication, without a communication disorder. and last week I was working with a patient that just was having terrible pain and just could not describe it. and using the icons of words on that he had a much better sense of. You know it's just this and not that, and those descriptors of pain have been really useful for people now without more with communication difficulties that I just started doing that last week. And it was really interesting.

Hilary Sample: You mentioned about how those interactions with physicians are can be. Well, it's not nothing about you guys.

Jerry Hoepner: It's the rest of the physicians.

Hilary Sample: No, it's the, you know. There's a time. It's the shift in how our whole system operates that it's, you know I go in and I'm like, I just need notes if I need to speak about something important to my physician, because, like, I know that one reason I connect so deeply with people with communication disorders is that my anxiety sometimes gets in the way of my ability to communicate like I want to, especially in, you know, those kind of situations. And so, you know, it can help in many ways just having something to point to. But we also saw that with people with hearing loss, which, of course, many of the people that we run into in many of the patients that we work with are going to have some sort of hearing loss. People that speak a little different, you know. Native language. You know English as a second language.

Jerry Hoepner: Absolutely.

Hilary Sample: There and then. Cognitive communication disorders, developmental disorders, anybody that might benefit with a little bit more support which might include you and me. You know it can help.

Jerry Hoepner: And I think you know the physician and other providers having the tools to do that education to use the multimodal supports, to get the message in and then to get responses back out again. I think it's really important. And then that process of verifying to just see if they're understanding it. Are you? Are you tracking with me? And to get that feedback of, I'm getting this because I think sometimes education happens so quickly or at a level that doesn't match, and they might not understand it. Or sometimes it's just a matter of timing. I know we joke about Tom Sather and I joke about this. We've had people come to our aphasia group before who traveled out to a place in the community and they're sitting next to you. And they say, what is this aphasia stuff everyone's talking about? And I'm like, you literally just passed a sign that said Aphasia group. Right? But it's so hard to ensure that the message does go in, and that they truly understand that until you get that Aha moment where you describe like, yes, that's me, that's it. And that's just so crucial.

Hilary Sample: yeah, it's 1 of the most important pieces, I think to name it doesn't for anything that anybody is dealing with that's heavy, you know, to have to have it named can really provide relief just because that unknown, you know, at least at least you can have one thing that you know. I know what it is, and then I can learn more about it. Once I know what it is, I can learn more about it, and I can have some sort of acceptance, and I can start that grieving process around it, too, a little bit better. But when it goes unnamed, and the other part of it is if you don't tell me that, you know like that, you can see and understand what I might be experiencing, I might not think that you know what it is either, and I might not feel seen. So just the fact that we're both on board that we know I have this thing. I think it can take a lot of the weight off. At least, that's what I've seen when it's been presented.

Jerry Hoepner: No or care, right?

Hilary Sample: Yeah. Yes. Exactly.

Jerry Hoepner: Yep, and that's a good a good chance to segue into we I know we picked on Steve a little bit as a physician but the system really kind of constrains the amount of time that people have to spend with someone, and they have to be efficient. I'll go back to that sneaky idea. This seems like a sneaky way to help change the system from within. Can you talk about that a little bit like how it might move care forward by.

Hilary Sample: Showing what's possible. Yeah, I'm sorry, sure. In part time. Constraints, unfortunately, are very real, and without the knowledge of training how to communicate or support communication. It's challenging for us to move us physicians to move forward, but with something like our app or other useful tools in a short amount of time you could make some progress. And then, if you could document, this is worthwhile time worthwhile that I'm accomplishing something with my patient. I'm helping to understand what their issues are, and helping to explain what we want to do. That all of a sudden makes the time worthwhile, although time is a real constraint. I think, is general. Doctors are happy to spend extra time. If it's worthwhile that's helping our patient. That's the whole reason we go into this is help our people. We help the people we're working with, you know. No one wants to go in there and spend time. That's not helping anybody. But if you could justify the time, because I'm making progress. I'm really helping them great go for it. It's worth doing, and the part about efficiency. So there's so many ways that this focus on. And it's not even efficiency, because efficiency sounds like some success was achieved, you know. But this, this we only have this amount of time. One of the one of the things that's kind of interesting to me is that it an assumption? I've seen a lot, or I've heard a lot is that using communication supports takes time. More time and I have watched plenty, an encounter where the physician is trying, and it takes forever. I've experienced my own encounters as I was growing and deepening my own skills, and where it took me forever. And that's because we're trying. We care, but we don't have something prepared. So when you have a prepared material, it not only helps you to effectively and successfully you know, meet that communication need and find out what is actually bothering the person that you're working with. But it enables you to move at a pace that you wouldn't be able to otherwise, you know. So if Steve and I have this kind of running joke that I'll let you tell it because you have fun telling it.

Steve Richman: With the MedConcerns app. I could do in a little while what I can never do before, and with the med concerns App Hillary could do in 5 min. What used to take a session? It's really.

Jerry Hoepner: Yeah.

Hilary Sample: Makes huge impacts in what we could accomplish, so less of a joke and more of just.

Jerry Hoepner: Yes, but having the right tools really is sounds like that's what makes the difference. And then that gives you time and tools to dedicate to these conversations that are so important as a person who's really passionate about counseling. One of the things we were always taught is spending time now saves time later, and this seems very much like one of those kind of tools.

Hilary Sample: Yeah. Well, we had one of the 1st times that we brought the prototype to a friend of ours who has aphasia. And it kind of speaks to the exactly what you just said. Spending time now saves time later, or saves money. Saves, you know, all the other things right is our friend Bob, and he doesn't mind us using his name. But I'll let you tell this story a little bit, because you know more from the doctor. Bob was no longer a patient of ours, but we had spent time with him and his wife, and they were happy to maintain the relationship, and we showed him that after he had this experience but he was describing experience to us, he was having hip pain. He had a prior stroke hemiplegic and having pain in that hemiplegic side. So the assumption, medically, is, he probably has neuropathy. He probably has, you know, pain related to the stroke, and they were treating with some gabapentin which makes sense. But he kept having pain severe. 10 out of 10. Pain severe. Yeah. And just. We went back day after day, and not on the 3rd day back at the er they did an X-ray, and found he had a hip fracture and look at our app. He was like pointing all over to the things that show the descriptors that show not neuropathic pain, but again, musculoskeletal pain and that ability to, you know, without words we could point to where it hurts. But then, describing that pain is a makes a huge difference. And he knew he very clearly. Once he saw those pictures he like emphatically, yes, yes, yes, like this is this, we could have, you know, if we could have just found out this stuff, we wouldn't have had to go back to the er 3 times and go through all that wrong treatment and this severe amount of pain that really took him backwards in his recovery to physically being able to walk. And things like that, you know, it's just finding out. Getting more clarity at the beginning saves from those kind of experiences from the pain of those experiences. But also, you know, we talked about earlier. If you have to sort of make an assumption, and you have to make sure that you're thinking worst case scenario. So in other situations where you send out with a chest pain and things like that, there's a lot that's lost for the person with aphasia because they might have to start their whole rehab journey over. They have to incur the costs of that experience. And you know they might come back with, you know, having to start completely over, maybe even new therapists like it's. And then just the emotional side of that. So, it not only saves time, but it. It saves money. It saves emotional. Yeah, the emotional consequences, too.

Jerry Hoepner: Yeah. Therapeutic Alliance trust all of those different things. Yeah, sure. Yeah. I mean, I just think that alone is such an important reason to put this tool in the hands of people that can use it. We've been kind of talking around, or a little bit indirectly, about the med concerns app. But can you talk a little bit about what you created, and how it's different than what's out there.

Hilary Sample: Yeah, may I dive in, please? Okay, so we yeah, we indirectly kind of talked about it. But I'll speak about it just very specifically. So it starts with an introduction, just like a physician would enter the room and introduce themselves. This is a multimodal introduction. There's the audio. You can use emojis. What have you then, the General? How are you? Just as Steve would ask, how I'm doing this is, how are you with the multimodal supports and then it gets to kind of the main part of our app, which is, it starts with broad concerns. Some of those concerns, pain, breathing issues, bowel bladder illness. Something happened that I need to report like a fall or something else and the list continues. But you start with those broad concerns, and then every selection takes you to a confirmation screen where you either, you know, say, yes, that's what I was meaning to say, or you go back and revise your selection. It follows with narrow choices under that umbrella concern, the location type of pain, description, severity, exacerbating factors. If you've hit that concern so narrow choices to really get a full description of the problem, and including, like, I said, timing and onset. And then we end with a summary screen that shows every selection that was made and you can go to a Yes, no board to make sure that that is again verified for accuracy. So, it's a really a framework guiding the user, the therapist healthcare provider person with aphasia caregiver whomever through a supported approach to evaluating medical concerns. So generally, that's the way it functions. And then there are some extras. Did you want me to go into those? A little bit too sure.

Jerry Hoepner: Sure. Yeah, that would be great.

Hilary Sample: Right? So 1 1. It's not an extra, but one part of it that's very important to us as we just talked about our friend Bob, is that pain? Assessment is, is very in depth, and includes a scale description, locations, the triggers, the timing, the onset, so that we can get the correct pathway to receiving intervention. This app does not diagnose it just, it helps support the verbal expression or the expression. Excuse me of what's wrong. So, it has that general aphasia, friendly design the keywords, simple icons that lack anything distracting, clear visuals simple, a simple layout. It also has the audio that goes with the icon, and then adjustable settings, and these include, if you know, people have different visual and sensory needs for icons per screen, so the Max would be 6 icons on a screen, although, as you scroll down where there's more and more 6 icons per screen. But you can go down to one and just have it. Be kind of a yes, no thing. If that's what you need for various reasons, you can hide specific icons. So, if you're in a setting where you don't see trachs and pegs. You can hide those so that irrelevant options don't complicate the screen. There's a needs board. So we see a lot of communication boards put on people's tray tables in in the healthcare setting, and those are often they often go unused because a lot of times they're too complex, or they're not trained, or they, for whatever reason, there's a million reasons why they're not used. But this one has as many options as we could possibly think might need to be on there which any of those options can be hidden if they need to be. If they're not, if they're irrelevant to the user language it's in. You can choose between English and Spanish as it is right now, with more to come as we as we move along, and then gender options for the audio. What voice you'd like to hear? That's more representative. And the body image for the pain to indicate pain location. There's some interactive tools that we like to use with people outside of that framework. There's the whiteboard for typing drawing. You can use emojis. You can grab any of the icons that are within the app. So, if you know we if it's not there and you want to detail more, you can use the whiteboard again. That needs board the Yes, no board. And then there's also a topic board for quick messages. We wanted to support people in guiding conversations with their health care providers. So, I want to talk to Steve about how am I going to return to being a parent? Once I get home, what's work life going to be. I want to ask him about the financial side of things. I want to ask him about therapy. I want to report to him that I'm having trouble with communication. I want to talk on a certain topic. There's a topic board where you select it. It'll verify the response. It has a confirmation page, but from there the physician will start to do their magic with whatever that topic is. And then, of course, there's those summary screens that I already detailed, but those have been very useful for both, making sure at the end of the day we verify those responses but then, also that we have something that's easy to kind of screenshot. Come back to show the physician. So show the nurse as like a clear message that gets conveyed versus trying to translate it to a verbal message at the end from us, and maybe missing something so straightforward, simple to address very complex needs, because we know that people with aphasia would benefit from simple supports, but not they don't need to stay on simple topics. They have very complex ideas and information to share. So we wanted to support that. That's what it is in a nutshell that took a nutshell. I love that. It's on my phone, or it could be on your.

Jerry Hoepner: Oh, yeah.

Hilary Sample: Or on your or on your apple computer. If you wanted that, it's on the app store. But I love this on my phone. So, I just pull in my pockets and use it. Or if you happen to have an another device that works also.

Jerry Hoepner: Sure.

Hilary Sample: We're in the. We're in the process of having it available in different ways. There's a fully developed android app as well. But we're very much learners when it comes to the business side of things. And so there's a process for us in that, and so any. Any guidance from anybody is always welcome. But we have an android that's developed. And then we're working on the web based app so that we could have enterprise bulk users for enterprise, licensing so that that can be downloaded straight from the web. So that's all. Our vision, really, from the onset was like you said, shifting the culture in the system like if there's a tool that from the top, they're saying, everybody has this on their device and on the device that they bring in a patient's room, and there's training on how to use it, and that we would provide. And it wouldn't need to be much, just simple training on how to use it. And then you see that they are. They get that little bit more education. And then it's a consistent. We know. We expect that it'll be used. The culture can shift from within. And that's really the vision. How we've started is more direct to consumer putting it on the app store. But that's more representative of our learning process when it comes to app development than it is what our overall vision was, I want to say that equally as important to getting this into systems is having it be on a person's device when they go to a person with aphasia's device when they go to an appointment. I always, when we've been asked like, Who is this? For we generally just kind of say, anybody that that is willing to bring it to the appointment, so that communication supports are used, and maybe that'll be the SLP. Maybe it's the caregiver. Maybe it's care partner or communication partner, maybe a person with aphasia. Maybe it's the healthcare staff. So, whoever is ready to start implementing an easier solution. That's for you.

Jerry Hoepner: Yeah, absolutely. And that brings up a really interesting kind of topic, like, what is the learning curve or uptake kind of time for those different users for a provider on one hand, for a person with aphasia. On the other hand, what's a typical turnaround time.

Hilary Sample: We've tried to make it really intuitive, and I think well, I'm biased. I think it is

Hilary Sample: I for a provider. I think it's very easy to show them the flow and it, and it becomes very quickly apparent. Oh, it's an introduction. This is putting my name here. What my position is next is a how are you that's already walk in the room, anyways. And that's that. What are your concerns? Okay, that that all. Okay. I got that I think with time and familiarity you could use the tool in different ways. You don't have to go through the set up there you could jump to whatever page you want from a dropdown menu, and I find that at times helpful. But that's you. Don't have to start there. You just start with following the flow, and it's set up right there for you. The, as we all know people with the page I have as all of us have different kind of levels, that some people, they, they see it, they get it, they take the app, and they just start punching away because they're the age where they're comfortable with electronic devices. And they understand the concept. And it takes 5 seconds for them to get the concept and they'll find what they want. Some of our older patients. It's not as quick. But that's okay. My experience with it's been funny to show to use it with people with aphasia versus in another communication disorders, and using it with or showing it to people in the field or in healthcare in general, or you're just your average person most of the time that I showed this to a person with aphasia or who needed communication supports. It's been pretty quick, even if they didn't use technology that much, because it is it is using. It's the same as what we do on with pen and paper. It's just as long as we can show them at the onset that we're asking you to point or show me right. And so once we do that and kind of show that we want you to select your answer, and some people need more support to do that than others. Then we can move forward pretty easily. So people with aphasia a lot of times seem to be waiting for communication supports to arrive, and then you show them it, and they're like, Oh, thanks, you know, here we go. This is what's going on. Of course, that's there are varying levels of severity that would change that. But that's been my experience with people with aphasia. When I show people that do not have aphasia. I see some overthinking, because you know. So I have to kind of tell people like, just them you want them to point and hand it over, you know, because when I've seen people try to move through it, they're overthinking their what do you want me to do? I'm used to doing a lot with an app, I'm used to, you know, and the app moves you. You don't move it. So the real training is in stepping back and allowing the communication supports to do what you're thinking. I need you to do right. Step back and just let the person use the communication supports to tell you their message. And you, you provide those supports like we tend to provide more training on how to help somebody initiate that pointing or maybe problem solving the field of responses or field of icons that's on the page, or, you know, troubleshooting a little bit. But the training more is to kind of have a more hands off. Approach versus you know, trying to move the app forward since the apps focus, really, on describing what's going on with somebody and not trying to diagnose once someone gathers. Oh, I'm just trying to get out what I'm experiencing, it becomes very intuitive. Yeah, that's the issue. And this is, yeah, that's how describes it more. And yeah, this is about when it started that

Jerry Hoepner: That makes sense. And it's in line with what we know about learning use of other technologies, too, right? Usually that implicit kind of learning by doing kind of helps more than here's the 722, you know, pieces of instruction. So yeah, that kind of makes sense.

Hilary Sample: Simple training. I just to throw in one more thought I you know a little bit of training on what communication supports are, and then you show them. And it really, the app shows you how to use communication supports. And so it, you know instead of having to train on that you can just use the app to show them, and then and then they sort of start to have that awareness on how to use it and know how to move forward from there. Generally, there's some training that needs to be to be had on just where things are maybe like the dropdown menu, or you know what's possible with the app, like changes, changes, and settings and the adjustments that we talked about earlier but usually it's a little bit of a tool that I use to train people how to use communication support. So, it's sort of like the training is embedded. So we're doing both at the same time. You're getting to know the app, and you're learning more about how to support communication in general.

Jerry Hoepner: I think that's a really great takeaway in terms of kind of that double value. Right? So get the value to the person with aphasia from the standpoint of multimodal communication and self-advocacy and agency, those kinds of things, and then the value to the providers, which is, you learn how to do it right by doing it.

Hilary Sample: Which is great. Yeah.

Jerry Hoepner: Really like that.

Hilary Sample: Some of the most meaningful experiences I've had are with nurses like, you know, some of those incredible nurses that, like they see the person with aphasia. They know they know what to say, they want to. They know that the person knows what they want to say, but has difficulty saying it. We have one person I won't mention her name, but she's just incredible, and you know the go to nurse that you always want to be in the room she pretty much was like, give me this as soon as we told her about it, and I did, you know, and she goes. She's like, see, you know she uses it as a tool to help her other nurses to know what's possible for these. She's such an advocate but if it can be used like that to show what's possible like to show, to reveal the competency, and to let other nurses know, and other physicians, and so on, to help them to truly see the people that they're working with. It's like that's my favorite part. But the it's not only like a relief for her to be able to have a tool, but it's exciting, because she cares so much, and that like Oh, I'll take that all day long. That's wonderful.

Jerry Hoepner: Absolutely well, it's been really fun having a conversation with you, and I've learned a lot more than I knew already about the app. Are there any other things that we want to share with our listeners before we close down this fun conversation.

Hilary Sample: I think maybe our hope is to find people that are ready to help kind of reach that vision of a culture shift from this perspective from this angle. Anybody that's willing to kind of have that conversation with us and see how we can support that. That's what we're looking for just to see some system change and to see what we can do to do that together, to collaborate. So if anybody is interested in in discussing how we might do that, that's a big goal of ours, too, is just to find partners in in aphasia advocacy from this angle.

Jerry Hoepner: That's great!

Hilary Sample: Perfect. I totally agree. We're very grateful for this conversation, too. Thank you so much, Jerry.

Jerry Hoepner: Grateful to have the conversation with both of you and just appreciate the dialogue. Can't wait to connect with you in future conferences and so forth. So, thank you both very much.

Hilary Sample: Thank you.

Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access.

In this episode you will:

• Discover how transitioning from participant to facilitator can accelerate personal recovery while creating meaningful support for others living with aphasia, demonstrating that helping others is often one of the most powerful ways to help yourself continue growing.
• Learn practical strategies for building and sustaining aphasia support communities both online and in-person, including how to adapt materials for different communication abilities, recruit co-facilitators with complementary strengths, and grow through word-of-mouth rather than formal advertising.
• Understand how creative activities like movie groups, singing and dancing, and talk of the town (current events) serve as powerful therapy tools for participation and language recovery.

Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, Young Person’s Brain Injury Group, and Thursday Night Poets. 

I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.

I’m today’s host for an episode that will feature Cindy “Yee” Lam-Walker. We’ll be talking about her programming for individuals with aphasia by individuals with aphasia. This is the second episode in a two-part series featuring remarkable individuals who discovered that one of the most powerful ways to support their own recovery was by creating spaces to help others.

We’re continuing our June celebration of Aphasia Awareness Month, where we’re highlighting the Life Participation Approach to Aphasia by featuring people who are living successfully with aphasia. Earlier this month, we heard from Sherry Lovellette, who started several online opportunities for individuals with aphasia, including Aphasia Gatherings, Online Book Club, sewing, and an in-person support group. We also heard from Dr. Lori Gray about her groundbreaking work integrating mindfulness into stroke recovery.

Before we begin today’s conversation, I’d like to share a bit about today’s guest.

Cindy “Yee” Lam Walker is a person with aphasia from Atlanta, Georgia. She was a Treasury Officer before her stroke and was great with numbers and money.

On March 19th, 2019, she experienced a ruptured brain aneurysm. It caused bleeding in her brain, which required brain surgery. After the surgery, she didn’t remember what happened for the first 3 months.

She began to speak, but it was difficult. She couldn’t walk. She had to use the wheelchair, and she was in the hospital for 5 months. She wouldn’t eat. She couldn’t go back to her job, a job that she loved but she could no longer do math. Her whole life changed! ​

In winter, she was depressed and didn’t want to live. She wanted to die so she could see God and my parents in heaven. In spring, her doctor prescribed some new medications, and she began to feel better. She met her speech therapist, Emily. With her help, she started to talk, to read, and to learn simple math. ​

After her stroke, she didn’t care about money anymore. She has many new friends and makes origami to give to people. When she is folding origami, she feels like her mother is teaching me how to fold. ​Now she writes poetry and leads groups for other people with aphasia.

Transcript:

Jerry Hoepner: Well, I'm really excited to have a conversation with you. Katie Strong said that she connected you with you when she was in Atlanta a few weeks ago, and.

Yee Cindy Lam Walker: Yeah, we had a great time.

Jerry Hoepner: Yeah, sounds like it. And she had this idea for a conversation with you about your experience starting an aphasia group for people with aphasia by people with aphasia. And we just think it's a wonderful idea. And I didn't even realize how much you were doing until I saw some of the things that you sent me, and I've heard a little bit here and there from others. But wow! It's really. It's really impressive.

Yee Cindy Lam Walker: The number of people in those classes. Scott did that. I couldn't add up things like he does, so he took care of that I don't even know he was doing it for my classes, but he spent time doing that. But I'm the one who likes to organize it among people and I. I pick some of my other friends to be the host. I'm not always the host for all these classes, so.

Jerry Hoepner: See that. That's really a great idea on your part. People with interest or expertise in those different areas. And yeah, it's quite the lineup of activities that you have kind of across the whole range of interests and topics. So, I'm excited to talk about it.

Yeah. Those numbers that Scott put together are really impressive. 2,400 people. Wow.

Yee Cindy Lam Walker: Not at different times, you know, it's not like, yeah. He did the math.

Jerry Hoepner: Yeah, that's a that's a lot of people, though, when you think about how much people struggle to pull people together, those are really great numbers. And obviously you're doing something really well.

Yee Cindy Lam Walker: Yeah, I enjoyed it, I think. You know, right now I don't have a real job. So, I like doing this to help myself and to help other people, too, you know.

Jerry Hoepner: Yeah, absolutely. I think it's as good or as meaningful as any job. The things that you're doing so really excellent work. Well, is it okay? If we kind of start having a conversation about those questions that I sent and try to pull those pieces together.

Yee Cindy Lam Walker: Yes.

Jerry Hoepner: That sounds good. As I said, I'm really interested to learn about your background and kind of your journey through this experience. How has your personal experience with aphasia shaped your approach to community leadership?

Yee Cindy Lam Walker: For me. After my stroke efforts. I was depressed; you know my whole life changed. I didn't really want to live. Really, my parents passed. I figure, you know, if I die, I will see them in heaven with God and my parents. I didn't want to live after the hospital. I was there for 5 months, and I got home. I told Scott that just leave me in the bedroom. Leave it there for one week, then I'll be gone. And he worried about me. So, he kept calling people to help people understand what I'm going through. And shortly after I started to go to an Emory office, where I met my speech therapist. Her name is Emily, and she can tell by she looks at me, and she's like, “Are you depressed right now?” And I'm like, “Yeah, I don't really want to live.” And then she said, “Well, you know, you come to my office here. You are aphasia.” And I'm like. “Wait what?” And she said, “aphasia. And there are lots of people with aphasia all over the world. It is the inability to read and talk, but we can help you.” And when she said that to me I all of a sudden woke up like, “Oh, I can't! I'm not the only person with this, you know.” I knew I had stroke, but I never heard of the word aphasia and when she said that she woke me up and I started to read and talk with her. So, And because of that I felt like she helped me. I want to help other people, too you know. I started to start to like my life a little bit and then, after a while, I tell myself you know, your life right now is actually much better than before. You know I care a lot about money and all that stuff. But now I don't care about money anymore. I'm glad that I'm alive and I like to help people because a lot of people helped me when I was going through stroke, and later with my Chemo people there helped me so much that I want to be there to help them. and that makes me feel happy to be able to help others.

Jerry Hoepner: Absolutely that sounds like that. Conversation with Emily was a real turning point for you. Yeah.

Yee Cindy Lam Walker: Yeah, and that.

Jerry Hoepner: Moving forward.

Yee Cindy Lam Walker: I always tell people who are studying to be speech therapists. If I can do it all again. I wouldn't want to be a Treasury officer. I want to be a speech therapist because you get you guys to help so many people. You know, nobody really knows about that until they're going through stroke or other stuff. A regular person wouldn’t know what is aphasia, you know.

Jerry Hoepner: Right. You mentioned, as you were describing that journey, the stroke and the aphasia. And then you briefly mentioned your chemo. Can you tell us a little bit about that journey from recovering from the stroke and then finding out about the breast cancer?

Yee Cindy Lam Walker: Yeah. Well, you know After my stroke. I hate going to the hospital, anyway. I've been in the hospital for 5 months but every year we get this mail, saying that oh, it's time for your mammogram.

And so, Scott, usually he goes to the mailbox, and he likes going to the mailbox. I don't like to go. I don't really care what I get from the mailbox, but he likes to look through them and he told me. Oh, it's time for you to have mammograms and I'm like, I don't really want to go. And he said, No, I think you know you should do it, and I'm like, no, I said that. You know I hate being in a hospital. I'm so flat over there. There's no way I'll ever get breast cancer. But he kept forcing me and forcing me. And I finally went. And I'm so glad that I went, you know, because I have breast cancer Stage 2. If I didn't go, it could be Stage 3 or Stage 4 so, and it's him kind of forcing me to go. And I always thank him so much for keep forcing me to go. You know, and when I found out I have breast cancer. I never heard of this name called triple negative breast cancer. You know I was kind of surprised that I got this, but I never got angry or anything. The 1st thing I said to myself, is, you can handle it. You went through stroke, and now you're going through breast cancer, but you can handle it. And so, I you know, I went through all the stuff that goes through chemo. You know I yeah. And I'm glad that I never felt angry with anything. I just think that there's a reason for me to be going through this. Perhaps I'm there to tell people that like me you should go get your mammogram. You know so, and my life's still better, too, after that.

Jerry Hoepner: Well, it seems like that. Mind shift, or that mindset shift that you experienced with Emily kind of led to the way that you responded to the cancer as well, just really, positively and forward looking.

Yee Cindy Lam Walker: Yes, yeah. And I didn't try to be happy or anything. It just happened to me that you know I enjoy my life. Now I like my job before I was a Treasury officer, and I love the people. I work with my manager and shortly after I got my stroke and back then. I care so much about money now. I don't care about money anymore, you know. I think my life is even better. I get I met people that I never met before, and I spend more time with them now, like my husband's mother, Joyce. She was always very nice to me, but I didn't really like her too much back then. Perhaps my own mother was going through Chemo, and you know I didn't really like Joyce, but when I was going through stroke. She came to the hospital here. She came from Florida to Atlanta, and she was always in the hospital to help me you know, so I'm much closer to her now, you know, like people that I never really care about. They all came to help me.

Jerry Hoepner: Wow! It sounds like you've got quite a quite the supportive network you've mentioned Scott a couple of times. Can you tell people just a little bit about who Scott is?

Yee Cindy Lam Walker: Yeah, my husband he taught me a lot, I mean, he was helping me with my stroke and through Chemo you know, and neither one of us were us were angry. Well, he was a bit angry, not at me. But why are you having breast cancer now? He just couldn't believe it, but I'm like, well, it happened so let's just handle it. But most of all, he's always been here. Always drive me to the hospital you know, he would bring his computer in the hospital because he need to do his work. And I'm in there getting chemo all that stuff, you know? Yeah. So yeah. And you know, we met when we were college and I think our personality has changed a little bit since you know when we were in college. But we we're getting even closer now than before, I think, for some reason. Yeah.

Jerry Hoepner: That's really great to hear that. And it just seems like you've kind of found your way through this process, and you just have such a good attitude. I'm interested. What was the moment you decided you kind of talked about this, that you were inspired by the people that were helping you. But what was the moment that you transitioned from being a participant in in various groups to being a facilitator and a leader?

Yee Cindy Lam Walker: Well, I think I've been to some of those visual connections, you know that. And when I was part of them, I was shortly after my stroke. So after, like 2, 3 years later. I felt like, perhaps I should go to some classes for people who were not recently from stroke, but like me after several years and we might do something different compared to before. So, I decided that I would get a zoom where people can come, and you know and do certain things like we can read the news, or we can read about history articles. I think it's important that people can start to talk and weep. Because I mean, you know, right after my stroke. I had to learn all my ABCs you know, but it takes time, and that's why I felt people when they come to our zoom. If you want to just come, you don't have to say anything. Just see what we're doing, and then, by the time, whenever you feel like, it's the right time for you to start talking, then you can. I don't want them to think that. Oh, you come to the zoom, and you will start reading a sentence. No, I think it's just in your time. Whenever you're ready for it. You can, you know we will help you with seeing one sentence or something like that. So even though you know, people might come, and they couldn't say the sentence, which is fine because they can hear it and understand it right. They just can't say it. So, I started with like the conversation group and then talk of the town, and then I ask others to be host. So, I don't have to be the host for all of them movies and stuff like that. So, and you know it. And then I didn't really go and tell a lot of people about it. I just told several, and then they then they went and recruit more people, so.

Jerry Hoepner: That's a a perfect transition to my next question, because it sounds like one of the. My next question was going to be, what strategies have been effective for you and growing your community. But you said, one thing is just let people join on their own time and and participate when they're ready to and then you mentioned that you shared with a few people, and they shared and kind of that word of mouth any anything else that's been helpful in growing that community.

Yee Cindy Lam Walker: Yeah, I think for the zoom I want between, like, you know, 4 to 8 people, because if it's more than 12 people, it's hard to be able to read the sentence, because sometimes you need to go to the second page, you know, when you look at, you know, so I don't want to have too many people in in a zoom between 4 to 10 actually will be good because I want them to have several times to read instead of do it once, you know, if there's too many people there, so that's that I think will be good. I think that's it. I don't really yeah. And sometimes I will ask them, what kind of zoom do you want? And somebody might say, What about baking? I'm like, okay, that might be good, you know. I'm not a baker, or I don't like to cook. But if someone wants to be involved in that you can, but you need to be the host, because I won't say anything about cooking, because I don't really know too much about them you know. So.

Jerry Hoepner: Yeah, it sounds like you have a lot of good things that you've kind of done through the program. I mean, just asking people what they want. Clearly with your numbers. Since 2023, 2,400 people that have attended, I mean, that's a lot. You're doing some things really well. To create that sense of community in that space where people can learn and continue to improve.

Yee Cindy Lam Walker: Yeah, and I think, the I. So, I have like talk of the town. We had 3 classes talk of the town news and then talk of the town history article and talk of the town people.com. and I think someone who just recently have stroke or other illnesses. They might want to start with people.com. Then they can go to the second one, which is news, and then the last one is history articles, because history articles are pretty hard to read them. Lots of numbers like 1492, you know, for a lot of people. Those words are hard a lot of, so that will be the order. I would tell them. You can start with people.com. Those are pretty easy, you know, and then you move to the news article like what's going on like, you know. Pope is from United States that type of articles, and then history new articles, because they are really hard to say. A lot of the names and the years. I'm okay with the numbers. But a lot. They have a lot of problem with reading the numbers.

Jerry Hoepner: Gotcha, you know, as long as you're talking about those I think might be a good time for me to kind of mention a few of them. So, you have one entitled, Wake up the week.

Yee Cindy Lam Walker: Oh!

Jerry Hoepner: Yeah, what's that one about.

Yee Cindy Lam Walker: Oh, it was somebody wanted to host one with my group. His name is Ed, and she wants to talk about wake up this week just to see what people did during weekends, and then what you plan to do in, you know, this week, and so so about that. So, they can talk, you know and that's what it is about like. Oh, we went to see a movie, you know, did you like this movie? Or, Oh, how are your pets? How is the kitten? You know, stuff like that? So, it's a.

Jerry Hoepner: That's a great idea, so kind of catching up with each other, and then.

Yee Cindy Lam Walker: Yeah.

Jerry Hoepner: Talking about plans for the future.

Yee Cindy Lam Walker: Yeah. And he was the host. But then he started to go through therapy, so he's not the host. Now, this one really doesn't have a host. I kind of am the host, but you know, with the same people would come back anyway. So, I don't think we really need a host for this one.

Jerry Hoepner: Gotcha, you have a conversation group that's pretty self-explanatory. And then you have one on movies and looks like TV series. And things like that.

Yee Cindy Lam Walker: Yeah, yeah, like, we were watching. What is that one? I forgot the name. Yeah, like I would have. I would play the movie whiplash, you know. Have you seen Whiplash?

Jerry Hoepner: I haven't seen that one yet. I've heard it's good.

Yee Cindy Lam Walker: They! They use a lot of bad words in it. But if you're okay with that, then I think you might like whiplash. Yes, and then we'll ask people. So, what do you think about what happened to so and so you know that get them to talk? Yeah. Point is for people to able to talk. It doesn't have to be a long sentence. But you know, what did he do? Do you like his you know, Job, or, you know, stuff like that get people to.

Jerry Hoepner: That's great. And then you have a singing and dance group, too. What's that one like?

Yee Cindy Lam Walker: Oh, I just go onto YouTube and get the songs with the caption on the bottom so they can sing and listen to the song. I think somebody told me that if you have a tough time reading a sentence, but when you're listening to the music, actually, you can sing pretty fast like than just reading a line, or something like that.

Jerry Hoepner: Yeah, that definitely can help get some of those words out for a lot of people with aphasia. So yeah, great a lot of really great offerings. As we're thinking about your programs. Is there anything you wish? Like? One thing you wish you had known before starting the process? Or maybe something you've learned throughout the process.

Yee Cindy Lam Walker: Yeah, something that I learned that I never really thought about that is. So, it happened like half a year ago my class was going to at 5 pm, okay? And I decided, I'm going to go earlier than 5. I just want to get there. So, I can put the information. I got there at 4, 45, and there were 2 people there already. They were talking about their book, and then I'm like, I was just surprised like, how could somebody just enter the zoom, you know, and she told me, oh, I have this book club now. And I'm like, hmm! I never thought like I never thought. Oh, I can just go use somebody soon without telling her you know. I never even think about that. I I'm like what you know. And she said, Oh, yeah, she came on. I said you need to let me know, because I need to record.

You've been into these classes, you know, you're going to be part of aphasia forward Book Club. Okay? So, I need to know if you will be coming here and stuff like that. But just the fact that I should have told people you use assume only from a facia forward. Don't just come out of nowhere and use this. Okay, it's free. Because somebody pays for this, you know. And if you want a free zoom, you can't. You can have the conversation for less than 40 min. Those are free. Then go to those and get them yourself. Don't just come here and use the zoom so.

Jerry Hoepner: Gotcha. Yep, yeah. Good things. There's always a lot of logistics to to sort out. For Aphasia Forward. What? What are your hopes for the future, for your community?

Yee Cindy Lam Walker: I think I want it to grow more in Georgia here. I kind of want it to be more like you guys in Wisconsin. We didn't have that. You know how we go to the camp there. I want people in Georgia can do that here because and they are starting with like a community right now. It will kind of, you know, far away before they can become like Wisconsin, but at least they are starting one here like there's like we. I saw them last Friday, when we went to Good morning. A facie when Jacqueline was there, you know. So. And then I met the 2 ladies who's going to be forming a company or something about a aphasia and help each other like that. So, I want my zoom to, for people who like they don't have to drive to an office. They can just be on my zoom at home. So yeah, if they want to learn how to, you know, sing, or read again, we can help.

Jerry Hoepner: That's excellent. So, sounds like 2 big missions getting them to participate and to get kind of get back into doing things and then creating that community, that group of people with aphasia that understand one another and can connect with one another.

Yee Cindy Lam Walker: Yeah, and I told them, you know. It might be good to have pickleball here, too.

Jerry Hoepner: Yeah.

Yee Cindy Lam Walker: I think a lot of people like it, you know. So, or like, you know, we would be surrounded by the fireplace, and we sang. You know those are nice things, you know words, you know, but we don't have one right now.

Jerry Hoepner: Yeah, yeah, I think those are great aspirations for the future. I hope that it continues to grow. And you develop that community even further. If you had a suggestion, this is kind of a little add on question. But if you had a suggestion for someone with aphasia who is thinking? I want to start something like this. Where would you begin?

Yee Cindy Lam Walker: Well, they can. I mean they can talk with me, and I can show them the list of clauses. And then, I guess, like, you need to be able to tell other people about it. I mean, there's not much you need to do. You just create one using a zoom, and then you know, people will start talking to each other, and then you will find more about people who are coming what they want to do. So perhaps, like, I can help in that way. I guess. Yeah, like I, I can give them some ideas of what I went through to get to where I am now.

Jerry Hoepner: That's fantastic. I don't know if you know this, but you're a pioneer and definitely. There will be people, I'm sure, that'll reach out to you and ask you about how you made it happen. So? It's been really fun having this conversation. Is there anything else you want to share with our listeners?

Yee Cindy Lam Walker: No, I don't think so. I mean yeah, I mean, at some point before I thought it would be good to have poetry class. But since you guys are so good in Wisconsin, I don't think I need to do another one. There'll be too many poetry for me a week.

Jerry Hoepner: Well, it's certainly been fun getting to know you through aphasia camp and through poetry. And it is absolutely inspiring to see you continue to improve and to and to grow, and to be doing all of these things on your own. So, you are truly an inspiration and I'm glad to know you.

Yee Cindy Lam Walker: Oh, thank you. Same to you. Yeah. Oh, I think a lot of people has been coming to Thursday night poetry.

Jerry Hoepner: Yeah, we've had some really yeah good numbers and a lot of great people. I always think it's fun to see the new people, and to see how much you know. They kind of start out, and they're a little bit quiet, and then they just continue to grow. So it's really fun to watch that.

Yee Cindy Lam Walker: Yeah. And a lot of people really enjoy listening to poetry or working so.

Jerry Hoepner: Agreed.

Yee Cindy Lam Walker: Okay. Thank you.

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00:39:16.250 --> 00:39:18.330

Jerry Hoepner: All right. Good to see you.

On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access.

Dr. Katie Strong of Central Michigan University has a vibrant conversation with Sherry Lovellette about how transitioning from participant to facilitator can accelerate personal recovery while creating meaningful support for others living with aphasia. They explore practical strategies for building and sustaining aphasia support communities both online and in-person, including how to adapt materials for different communication abilities and grow through authentic word-of-mouth connections. Sherry also shares how creative activities like quilting and sewing have served as powerful therapy tools for her cognitive rehabilitation and fine motor skills, while providing opportunities to teach others and build additional community connections. This inspiring conversation demonstrates that helping others is often one of the most powerful ways to continue your own recovery journey, embodying the Life Participation Approach to Aphasia by showing how meaningful roles as a leader, teacher, and community builder can flourish alongside ongoing recovery.

Dr. Katie Strong has a conversation with Dr. Lori Gray about her work which focuses on mindfulness and aphasia. During this episode you will • Learn how mindfulness practices can help manage daily communication challenges including neuro fatigue, word-finding difficulties, and the frustration that comes with living with aphasia. • Discover why recovery "plateaus" should be reframed as "nonlinear pause points" and how challenging traditional beliefs about recovery limitations can open new possibilities for continued growth. • Hear about an adapted Mindfulness-Based Stress Reduction program for stroke survivors and the positive outcomes from Dr. Gray's pilot study, including improved sleep, reduced stress, and enhanced quality of life. • Experience a guided mindfulness practice designed specifically for people affected by aphasia and learn practical ways to integrate mindfulness into both daily life and clinical practice.

Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.

In this episode, Lyssa Rome interviews Dr. Suma Devanga about collaborative referencing, gesture, and building rich communicative environments for people with aphasia.

Guest info

Dr. Suma Devanga is an assistant professor in the Department of Communication Disorders and Sciences at Rush University Medical Center, Chicago, where she also serves as the director of the Aphasia Research Lab. She completed her PhD in Speech and Hearing science from the University of Illinois. Urbana Champaign in 2017. Dr. Devanga is interested in studying aphasia interventions and their impacts on people's everyday communication. Her recent work includes investigating a novel treatment called the Collaborative Referencing Intervention for Individuals with aphasia, using discourse analysis methods and patient reported outcome measures, studying group-based treatments for aphasia, and studying the use of gestures in aphasia. Additionally, she is involved in teaching courses on aphasia and cognitive communication disorders to graduate SLP students at Rush. She also provides direct patient care and graduate clinical supervision at Rush outpatient clinics.

Listener Take-aways

In today’s episode you will:

• Understand the role of collaborative referencing in everyday communication.
• Learn about Collaborative Referencing Intervention.
• Describe how speech-language pathologists can create rich communicative environments.

Edited transcript

Lyssa Rome

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication disorders in my LPAA-focused private practice. I'm also a member of the Aphasia Access podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.

I'm today's host for an episode that will feature Dr. Suma Devanga, who is selected as a 2024 Tavistock Trust for Aphasia Distinguished Scholar, USA and Canada. In this episode, we'll be discussing Dr. Devanga’s research on collaborative referencing, gesture, and building rich communicative environments for people with aphasia.

Suma Devanga is an assistant professor in the Department of Communication Disorders and Sciences at Rush University Medical Center, Chicago, where she also serves as the director of the Aphasia Research Lab. She completed her PhD in Speech and Hearing science from the University of Illinois. Urbana Champaign in 2017. Dr. Devanga is interested in studying aphasia interventions and their impacts on people's everyday communication. Her recent work includes investigating a novel treatment called the Collaborative Referencing Intervention for Individuals with aphasia, using discourse analysis methods and patient reported outcome measures, studying group-based treatments for aphasia, and studying the use of gestures in aphasia. Additionally, she is involved in teaching courses on aphasia and cognitive communication disorders to graduate SLP students at Rush. She also provides direct patient care and graduate clinical supervision at Rush outpatient clinics. Suma Devanga, thank you so much for joining us today. I'm really happy to be talking with you.

Suma Devanga

Thank you, Lyssa, thank you for having me. And I would also like to thank Aphasia Access for this wonderful opportunity, and the Tavistock Trust for Aphasia and the Duchess of Bedford for recognizing my research through the Distinguished Scholar Award.

Lyssa Rome

So I wanted to start by asking you how you became interested in aphasia treatment.

Suma Devanga

I became interested in aphasia during my undergraduate and graduate programs, which was in speech language pathology in Mysore in India. I was really drawn to this population because of how severe the consequences were for these individuals and their families after the onset of aphasia. So I met hundreds of patients and families with aphasia who were really devastated by this sudden condition, and they were typically left with no job and little means to communicate with family and friends. So as a student clinician, I was very, very motivated to help these individuals in therapy, but when I started implementing the treatment methods that I had learned, what I discovered was that my patients were showing improvements on the tasks that we worked on in therapy. Their scores on clinical tasks also were improving, but none of that really mattered to them. What they really wanted was to be able to easily communicate with family, but they continued to struggle on that, and none of the cutting-edge treatment methods that I learned from this highly reputable program in India were impacting my patients’ lives.

So I really felt lost, and that is when I knew that I wanted to do a PhD and study this topic more closely, and I was drawn to Dr. Julie Hengst’s work, which looked at the bigger picture in aphasia. She used novel theoretical frameworks and used discourse analysis methods for tracking patient performance, as opposed to clinical tests. So I applied to the University of Illinois PhD program, and I'm so glad that she took me on as her doctoral student. And so that is how I ended up moving from India to the US and started my work in aphasia.

Lyssa Rome

I think that a lot of us can probably relate to what you're describing—that just that feeling of frustration when a patient might improve on some sort of clinical tasks, but still says this is not helping me in my life, and I know that for me, and I think for others, that is what has drawn us to the LPAA.

I wanted to sort of dive into your research by asking you a little bit more about rich communicative environments, and what you mean by that, and what you mean when you talk about or write about distributed communication frameworks.

Suma Devanga

So since I started my PhD, I have been interested in understanding how we can positively impact everyday communication for our patients with aphasia. As a doctoral student, I delved more deeply into the aphasia literature and realized that what I observed clinically with my patients in India was consistent with what was documented in the literature, and that was called the clinical-functional gap. And this really refers to the fact that we have many evidence-based aphasia treatments that do show improvements on clinical tasks or standardized tests, but there is very limited evidence on these treatments improving the functional use of language or the everyday communication, and this remains to be true even today.

So I think it becomes pretty important to understand what we are dealing with, like what is everyday communication? And I think many aphasia treatments have been studying everyday communication or conversational interactions by decontextualizing them or reducing them into component parts, like single words or phrases, and then we work our way up to sentence structures. Right? So this approach has been criticized by some researchers like Clark, who is an experimental psychologist, and he called such tasks as in vacuo, meaning that they are not really capturing the complexity of conversational interactions. So basically, even though we are clinicians, our ultimate goal is improving everyday communication, which is rich and emergent and complex, we somehow seem to be using tasks that are simplified and that removes all of these complexities and focuses more on simple or specific linguistic structures. So to understand the complexities of everyday communication, we have shifted to the distributed communication framework, which really originates from the cultural historical activity theories and theories from linguistic anthropology.

Dr. Julie Hengst actually proposed the distributed communication theory in her article in the Journal of Communication Disorders in 2015, which highlights that communication is not just an individual skill or a discrete concept, but it is rather distributed. And it is distributed in three ways: One is that it is distributed across various resources. We communicate using multiple resources, not just language. We sign, we use gestures, or facial expressions. We also interpret messages using such resources like dialects and eye gaze and posture, the social context, cultural backgrounds, the emotional states that we are in, and all of that matters. And we all know this, right? This is not new, and yet, we often give credit to language alone for communication, when in reality, we constantly use multiple resources. And the other key concept of distributed communication theory is that communication is embedded in socio- cultural activities. So depending on the activity, which can be a routine family dinnertime conversation or managing relationships with your co workers, the communicative resources that you use, their motives, and the way you would organize it, all of that would vary. And finally, communication is distributed across time. And by that we mean that people interpret and understand present interactions through the histories that they have experienced over time. For example, if you're at work and your manager says you might want to double check your reports before submitting them based on prior interactions with the manager and the histories you've shared with them, you could interpret that message either as a simple suggestion or that there is a lack of trust in your work. So all in all, communication, I think, is a joint activity, and I think we should view it as a joint activity, and it depends on people's ability to build common ground with one another and draw from that common ground to interpret each other's messages.

Lyssa Rome

I feel like that framework is really helpful, and it makes a lot of sense, especially as a way of thinking about the complexity of language and the complexity of what we're trying to do when we are taking a more top-down approach. So that's the distributed communication theory. And it sounds like the other framework that has really guided your research is rich communicative environments. And I'm wondering if you could say a little bit more about that.

Suma Devanga

Absolutely. So this work originates from about 80 years of research in neuroscience, where rodents and other animals with acquired brain injuries showed greater neuroplastic changes and improved functions when they were housed in complex environments. In fact, complex environments are considered to be the most well replicated approach to improve function in animal models of acquired brain injury.

So Dr. Julie Hengst, Dr. Melissa Duff, and Dr. Theresa Jones translated these findings to support communication for humans with acquired brain injuries. And they called it the rich communicative environments. The main goal of this is to enrich the clinical environments. And how we achieve that is by ensuring that there is meaningful complexity in our clinical environments, and that you do that by ensuring that our patients, families, and clinicians use multimodal resources, and also to aim for having multiple communication partners within your sessions who can fluidly shift between various communicative roles, and to not just stay in that clinician role, for example.

Another way to think about enriching clinical environments is to think about ensuring that there is voluntary engagement from our patients, and you do that by essentially designing personally meaningful activities, rather than focusing on rehearsing fixed linguistic form or having some predetermined goals.

And the other piece of the enrichment is, how do we ensure there is a positive experiential quality for our patients within our sessions. And for this rather than using clinician-controlled activities with rigid interactional roles, providing opportunities for the patients to share stories and humor would really, you know, ensure that they are also engaging with the tasks with you and having some fun. So all of this put together would lead to a rich communicative environment.

Lyssa Rome

It sounds like what you're describing is the kind of speech therapy environment and relationship that is very much person-centered and focused on natural communication, or natural communicative contexts and the kinds of conversations that people have in their everyday lives, rather than more sort of strict speech therapy protocol that might have been more traditional. I also want to ask you to describe collaborative referencing and collaborative referencing intervention.

Suma Devanga

Yes, absolutely. So traditionally, our discipline has viewed word-finding or naming as a neurolinguistic process where you access semantic meanings from a lexicon, which you use to generate verbal references. And that theoretical account conceptualizes referencing as an isolated process, where one individual has the skill of retrieving target references from their stores of linguistic forms and meanings, right? So in contrast to that, the distributed communication perspective views referencing as a process where speakers’ meanings are constructed within each interaction, and that is based on the shared histories of experiences with specific communication partners and also depending on the social and physical contexts of the interaction as well.

Now this process of collaborative referencing is something that we all do every single day. It is not just a part of our everyday communication, but without collaborative referencing, you cannot really have a conversation with anyone. You need to have some alignment, some common ground for communicating with others. This is a fundamental feature of human communication, and this is not new. You know, there is lots of work being done on this, even in childhood language literature as well.

Collaborative referencing was formally studied by Clark, who is the experimental psychologist. And he studied this in healthy college students, and he used a barrier task experiment for it. So a pair of students sat across from each other with a full barrier that separated them so they could not see each other at all, and each student had a board that was numbered one through 12, and they were given matching sets of 12 pictures of abstract shapes called tangrams. One participant was assigned as the director, who arranged the cards on their playing board and described their locations to the other, who served as the matcher and matched the pictures to their locations on their own board. So the pair completed six trials with alternating turns, and they use the same cards with new locations for each trial. And what they found was that the pairs had to really collaborate with each other to get those descriptions correct so that they are placed correctly on the boards.

So in the initial trials, the pairs had multiple turns of back and forth trying to describe these abstract shapes. For example, one of the pictures was initially described as “This picture that looks like an angel or something with its arms wide open.” And there had to be several clarifying questions from the partner, and then eventually, after playing with this picture several times, the player just had to say “It's the angel,” and the partner would be able to know which picture that was so as the pairs built their common ground, the collaborative effort, or the time taken to complete each trial, and the number of words they used and the number of turns they took to communicate about those pictures declined over time, and the labels itself, or the descriptions of pictures, also became more streamlined as the as time went by.

So Hengst and colleagues wanted to study this experiment in aphasia, TBI, amnesia, and Alzheimer's disease as well. So they adapted this task to better serve this population and also to align with the distributed communication framework. And surprisingly, they found consistent results that despite aphasia or other neurological conditions, people were still able to successfully reference, decrease collaborative effort over time and even streamline their references. But more surprisingly, people were engaged with one another. They were having really rich conversations about these pictures. They were sharing jokes, and really seemed to be enjoying the task itself.

So Hengst and colleagues realized that this has a lot of potential, and they redesigned the barrier task experiment as a clinical treatment using the principles of the distributed communication framework and the rich communicative environment. So that redesign included replacing the full barrier with a partial barrier to allow multimodal communication, and using personal photos of the patients instead of the abstract shapes to make it more engaging for the patients, and also asking participants to treat this as a friendly game and to have fun. So that is the referencing itself and the research on collaborative referencing, and that is how it was adapted as a treatment as well.

And in order to help clinicians easily implement this treatment, I have used the RTSS framework, which is the rehabilitation treatment specification system, to explain how CRI works and how it can be implemented. And this is actually published, and it just came out in the most recent issue in the American Journal of Speech Language Pathology, which I'm happy to share.

Lyssa Rome

And we'll put that link into the show notes.

Suma Devanga

Perfect. So CRI is designed around meaningful activities like the game that authentically provides repeated opportunities for the client and the clinician to engage in the collaborative referencing process around targets that they really want to be talking about, things that are relevant to patients, everyday communication goals, it could be things, objects of interest, and not really specific words or referencing forms.

So the implementation of the CRI involves three key ingredients. One is jointly developing the referencing targets and compiling the images so clinicians would sit down with the patients and the families to identify at least 30 targets that are meaningful and important to be included in the treatment. And we need two perspectives, or two views, or two pictures related to the same target that needs to be included in the treatment. So we will have 60 pictures overall. An example is two pictures from their wedding might be an important target for patients to be able to talk about. Two pictures from a Christmas party, you know, things like that. So this process of compilation of photos is also a part of the treatment itself, because it gives the patients an opportunity to engage with the targets.

The second ingredient is engaging in the friendly gameplay itself. And the key really here is the gameplay and to treat it as a gameplay. And this includes 15 sessions with six trials in each session, where you, as the clinician and the client will both have matching sets of 12 pictures, and there is a low barrier in between, so you cannot see each other's boards, but you can still see the other person. So you will both take turns being the director and the matcher six times, and describe and match the pictures to their locations, and that is just the game. The only rule of the game is that you cannot look over the barrier. You are encouraged to talk as much as you like about the pictures. In fact, you are encouraged to talk a lot about the pictures and communicate in any way.

The third ingredient is discussing and reflecting on referencing. And this happens at the end of each session where patients are asked to think back and reflect and say what the agreed upon label was for each card. And this, again, gives one more opportunity for the patients to engage with the target.

The therapeutic mechanism, or the mechanism of action, as RTSS likes to call it, is the rich communicative environment itself, you know, and how complex the task is, and how meaningful and engaging the task has to be, as well as the repeated engagement in the gameplay, because we are doing this six times in each session, and we are repeatedly engaging with those targets when describing them and placing them.

So what we are really targeting with CRI is collaborative referencing and again, this does not refer to the patient's abilities to access or retrieve those words from their stores. Instead, we are targeting people's joint efforts in communicating about these targets, their efforts in building situated common ground. That's what we are targeting. We are targeting their alignment with one another, and so that is how we define referencing. And again, we are targeting this, because that is how you communicate every day.

Lyssa Rome

That sounds like a really fascinating and very rich intervention. And I'm wondering if you can tell us a little bit about the research that you've done on it so far.

Suma Devanga

Absolutely. So in terms of research on CRI thus far, we have completed phase one with small case studies that were all successful, and my PhD dissertation was the first phase two study, where we introduced an experimental control by using a multiple-probe, single-case experimental design on four people with aphasia, and we found significant results on naming. And since then, I have completed two replication studies in a total of nine participants with aphasia. And we have found consistent results on naming. In terms of impact on everyday interactions, we have found decreased trouble sources, or communicative breakdowns, you can call it, and also decreased repairs, both of which indicated improved communicative success within conversational interactions. So we are positive, and we plan to continue this research to study its efficacy within a clinical trial.

Lyssa Rome

That's very encouraging. So how can clinicians target collaborative referencing by creating a rich communicative environment?

Suma Devanga

Yeah, well, CRI is one approach that clinicians can use, and I'm happy to share the evidence we have this far, and there is more to come, hopefully soon, including some clinical implementation studies that clinicians can use. But there are many other ways of creating rich communicative environments and targeting referencing within clinical sessions. I think many skilled clinicians are already doing it in the form of relationship building, by listening closely to their patients, engaging with them in authentic conversations, and also during education and counseling sessions as well.

In addition to that, I think group treatment for aphasia is another great opportunity for targeting collaborative referencing within a rich communicative environment. When I was a faculty at Western Michigan University, I was involved in their outpatient aphasia program, where they have aphasia groups, and patients got to select which groups they want to participate in. They had a cooking group, a music group, a technology group, and so on. And I'm guessing you do this too at the Aphasia Center of California. So these groups definitely create rich communicative environments, and people collaborate with each other and do a lot of referencing as well. So I think there is a lot that can be done if you understand the rich communicative environment piece.

Lyssa Rome

Absolutely. That really rings true to me. So often in these podcast interviews, we ask people about aha moments, and I'm wondering if you have one that you wanted to share with us.

Suma Devanga

Sure. So you know how I said that getting the pictures for the CRI is a joint activity? Patients typically select things that they really want to talk about, like their kids' graduation pictures, or things that they are really passionate about, like pictures of their sports cars, or vegetable gardens, and so on. And they also come up with really unique names for them as well, while they are playing with those pictures during the treatment. And when we start playing the game, clinicians usually have little knowledge about these images, because they're all really personal to the patients, and they're taken from their personal lives, so they end up being the novices, while the patients become the experts. And my patients have taught me so much about constructing a house and all about engines of cars and things like that that I had no knowledge about. But in one incident, when I was the clinician paired with an individual with anomic aphasia, there was a picture of a building that she could not recognize, and hence she could not tell me much at all. And we went back and forth several times, and we finally ended up calling it the “unknown building.” Later, I checked my notes and realized that it was where she worked, and it was probably a different angle, perhaps, which is why she could not recognize it. But even with that new information, we continue to call it the “unknown building,” because it became sort of an internal joke for us. And later I kept thinking if I had made a mistake and if we should have accurately labeled it. That is when it clicked for me that CRI is not about producing accurate labels, it is about building a common ground with each other, which would help you successfully communicate with that person. So you're targeting the process of referencing and not the reference itself, because you want your patients to get better at the process of referencing in their everyday communication. And so that was my aha moment.

Lyssa Rome

Yeah, that's an amazing story, because I think that that gets to that question sort of of the why behind what we're doing, right? Is it to say the specific name? I mean, obviously for some people, yes, sometimes it is. But what is underlying that? It's to be able to communicate about the things that are important to people. I also wanted to ask you about another area that you've studied, which is the use of gesture within aphasia interventions. Can you tell us a little bit more about that?

Suma Devanga

Yes. So this work started with my collaboration with my friend and colleague, Dr. Mili Mathew, who is at Molloy University in New York, and our first work was on examining the role of hand gestures in collaborative referencing in a participant who had severe Wernicke’s aphasia, and he frequently used extensive gestures to communicate. So when he started with CRI his descriptions of the images were truly multimodal. For example, when he had to describe a picture of a family vacation in Cancun, he was, you know, he was verbose, and there was very little meaningful content that was relevant in his spoken language utterances. But he used a variety of iconic hand gestures that were very meaningful and helpful to identify what he was referring to. As the sessions went on with him, his gestural references also became streamlined, just like the verbal references do, and that we saw in other studies. And that was fascinating because it indicated that gestures do play a big role in the meaning-making process of referencing.

And in another study on the same participant, we explored the use of hand gestures as treatment outcome measures. This time, we specifically analyzed gestures used within conversations at baseline treatment, probe, and maintenance phases of the study. And we found that the frequency of referential gestures, which are gestures that add meaning, that have some kind of iconics associated with them, those frequencies of gestures decreased with the onset of treatment, whereas the correct information units, or CIUS, which indicate the informativeness in the spoken language itself, increased. So this pattern of decrease in hand gestures and increase in CIUS was also a great finding. Even though this was just an exploratory study, it indicates that gestures may be included as outcome measures, in addition to verbal measures, which we usually tend to rely more on. And we have a few more studies coming up that are looking at the synchrony of gestures with spoken language in aphasia, but I think we still have a lot more to learn about gestures in aphasia.

Lyssa Rome

It seems like there that studying gestures really ties in to CRI and the rich communicative environments that you were describing earlier, where the goal is not just to verbally name one thing, but rather to get your point across, where, obviously, gesture is also quite useful. So I look forward to reading more of your research on that as it comes out. Tell us about what you're currently working on, what's coming next.

Suma Devanga

Currently, I am wrapping up my clinical research grant from the ASH Foundation, which was a replication study of the phase two CRI so we collected data from six participants with chronic aphasia using a multiple-probe, single-case design, and that showed positive results on naming, and there was improved scores on patient reports of communication confidence, communicative participation, and quality of life as well. We are currently analyzing the conversation samples to study the treatment effects.

I also just submitted a grant proposal to extend the study on participants with different severities of aphasia as well. So we are getting all the preliminary data at this point that we need to be able to start a clinical trial, which will be my next step.

So apart from that, I was also able to redesign the CRI and adapt it as a group-based treatment with three participants with aphasia and one clinician in a group. I actually completed a feasibility study of it, which was successful, and I presented that at ASHA in 2023. And I'm currently writing it up for publication, and I also just secured an internal grant to launch a pilot study of the group CRI to investigate the effects of group CRI on communication and quality of life.

Lyssa Rome

Well, that's really exciting. And again, I'm really looking forward to reading additional work as it comes out. As we wrap up. What do you want clinicians to take away from your work and to take away from this conversation we've had today?

Suma Devanga

Well, I would want clinicians to reflect on how their sessions are going and think about how to incorporate the principles of rich communicative environments so that they can add more meaningful complexity to their treatment activities and also ensure that their patients are truly engaging with the tasks and also having some fun. And I would also tell the clinicians that we have strong findings so far on CRI with both fluent and non-fluent aphasia types. So please stay tuned and reach out to me if you have questions or want to share your experiences about implementing this with your own patients, because I would love to hear that.

Lyssa Rome

Dr. Suma Devanga, it has been great talking to you and hearing about your work. Thank you so much for sharing it with us.

Suma Devanga

It was fantastic talking about my work. Thank you for giving me this platform to share my work with you all. And thank you, Lyssa for being a great listener.

Lyssa Rome

Thanks also to our listeners for the references and resources mentioned in today's show. Please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]. Thanks again for your ongoing support of aphasia. Access. For Aphasia Access Conversations. I'm Lyssa Rome.

References

Devanga, S. R. (2025). Collaborative Referencing Intervention (CRI) in Aphasia: A replication and extension of the Phase II efficacy study. American Journal of Speech-Language Pathology. Advance online publication. https://doi.org/10.1044/2024_AJSLP-24-00226

Devanga, S. R., Sherrill, M., & Hengst, J. A. (2021). The efficacy of collaborative referencing intervention in chronic aphasia: A mixed methods study. American Journal of Speech Language Pathology, 30(1S), 407-424. https://doi.org/10.1044/2020_AJSLP-19-00108 

Hengst, J. A., Duff, M. C., & Jones, T. A. (2019). Enriching communicative environments: Leveraging advances in neuroplasticity for improving outcomes in neurogenic communication disorders. American Journal of Speech-Language Pathology, 28(1S), 216–229. https://doi.org/10.1044/2018_AJSLP-17-0157

Hengst, J. A. (2015). Distributed communication: Implications of cultural-historical activity theory (CHAT) for communication disorders. Journal of Communication Disorders, 57, 16–28. Https://doi.org/10.1016/j.jcomdis.2015.09.001

Devanga, S. R., & Mathew, M. (2024). Exploring the use of co-speech hand gestures as treatment outcome measures for aphasia. Aphasiology. Advanced online publication. https://doi.org/10.1080/02687038.2024.2356287

Devanga, S. R., Wilgenhof, R., & Mathew, M. (2022). Collaborative referencing using hand gestures in Wernicke’s aphasia: Discourse analysis of a case study. Aphasiology, 36(9), 1072-1095. https://doi.org/10.1080/02687038.2021.1937919

Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, Young Person’s Brain Injury Group, and Thursday Night Poets. 

I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.

I'm today's host for an episode that will feature my friend and colleague, Dr. Warren Brown. I’ve been fortunate to work with Dr. Brown for the past two years and I’m excited to share the work he’s been doing in service of the LPAA.

Warren C. Brown, Ph.D., CCC-SLP is an Assistant Professor in the Department of Communicative Disorders at Jackson State University. His research explores the intersections of traumatic brain injury (TBI), aphasia, and healthcare disparities, with a focus on cultural and linguistic diversity in clinical care. He serves as a facilitator for the Black Aphasia Group at the Aphasia Center of Acadiana and has published on topics related to brain injury, intersectionality, and patient-provider communication. Dr. Brown is an active member of the American Speech-Language and Hearing Association (ASHA), National Black Association for speech Language Pathology (NBASLH), the Academy of Neurogenic Communication Disorders and Sciences (ANCDS), and Alpha Phi Alpha Fraternity Inc.

Take Aways:

• Learn about health disparities faced by Black Americans.
• Learn about the perceptions of Black Americans towards their healthcare providers.
• Dr. Brown will continue to facilitate the Black Aphasia Group affiliated with the Aphasia Center of Acadiana.
• Dr. Brown and his team to are hoping to publish an anthology project featuring entries from Black Americans with aphasia by fall of next year.
• Dr. Brown plans to organize a symposium on aphasia at Jackson State University with a focus on diversity.
• Dr. Brown plans to present a poster on the anthology project at the upcoming Aphasia Access Conference.

Interview Transcript:

Jerry Hoepner: Alright. Well, Warren, it's good to see you today. I'm fortunate to see you on a regular basis. So, I think this is the second time we've connected today. For different reasons. But I'm glad to have you here as a part of the Aphasia Access Conversations Podcast. I'm hoping you can share a little bit about yourself. I know that some aphasia access affiliates will know you and know a little bit about your work. But I'd like others to get to know you and your work as well, so can you share a little bit about yourself?

Warren Brown: Yes, sir. Well, thanks for having me. For sure, this is an honor. I'm a recent graduate from the University of Louisiana and Lafayette. With my PhD. I studied under multiple folks. There. I studied under Anthony Salvatore, Dr. Judith Oxley, and Dr. Jamie Azios. My main areas of interest are traumatic brain injury, aphasia, and all neurogenic disorders related to marginalized populations. Prior to my doc program, I was a practicing clinician for 11 years or so I practiced in mainly acute care hospitals long term, acute care, hospitals, home health, and predominantly in Southern Louisiana. So, and I did a little bit of private practice. I did everything but child language disorders. So I prided myself when I started my doc program as being a clinician first, and thinking about clinical issues, first, because I was gracious enough to get a lot of great experience in my timeframe, so I kind of had a better idea about, you know the areas that I was most mostly interested in prior to going into my doc program. So, I'm married. I have 3 kids Wes, Evie, and Wells, which is my newborn and a lovely wife, Tatiana. I'm a new faculty member at Jackson State University in Jackson, Mississippi, and I love my job, and I love my students, and I love my research endeavors that I've done thus far. So, you know I'm fortunate enough to work with you, Dr. Hepner, Dr. Louise Keegan, Dr. Jamie Azios Dr. Judith Oxley. Still Dr. Anthony Salvatory. Still Theresa Gray, a few other folks. I'm just happy that Dr. Brandy Newkirk-Turner as well at Jackson State. I'm happy that I have a great group of mentors to ask questions to and bother from time to time. So, I'm just grateful. So yes, sir.

Jerry Hoepner: Well, yeah, it's been really fun working with you and getting to know you. And certainly, that really strong, diverse group of mentors is something to build upon for sure. That's a great group of people. So privileged to be a part of that a couple of things that we were going to talk about today. I want to get to your work with the black Americans with aphasia group, and I want to get to some of the new work that you've been doing on an anthology. I'll kind of leave it at that, for now you were gracious enough to share a manuscript. That you and Dr. Azios have under review right now. I know it's not quite published, but I'm wondering if you're willing to give us just a little bit of a preview of that work, and I have a few things that I just think were really powerful from reading that manuscript, and I'm interested in your thoughts on it. So, do you want to tell us a little bit about, like the general context of that manuscript?

Warren Brown: Yes, sir, so this was. This was actually a part of my dissertation. My dissertation was a mixed methods. Research project on healthcare encounters of African Americans with aphasia and without aphasia. But I was lucky enough to capture 8 interviews from a qualitative standpoint for that dissertation from African Americans with aphasia from across the United States. Different age ranges different levels of severity and obviously different etiologies from which caused them to acquire aphasia. The paper really came about, because, again, clinically, you know, I always realized that individuals who had aphasia who were black, had a lot of different experiences when it came to healthcare providers and practitioners. And oftentimes, when I would go into a home or see them in a hospital, they would be surprised that I was the individual to see them right. They would think I was a dietary staff member. They would think I was DNA. They would think I was a nurse, everything but a speech pathologist. So, when I had the opportunity to lead or facilitate a group which was the California the conversational group with Dr. Teresa Gray. You know I love to hear the different experiences that those individuals were having, as well coinciding with what I knew what was going on in the field. So that's what spawned this idea about understanding the dynamics of what you know. These encounters were from a deeper perspective. So originally it was going to be just a regular project with Dr. Azios and I, but we felt it'd be better if we made it a larger scale project and added to a portion of my dissertation. So, we did so. We really look to understand those lived experiences of those individuals, how those healthcare encounters went for them before and after they acquired aphasia, and trying to understand, like different strategies and challenges, that you know they may have had to use to overcome some of those issues, and how, you know we could take what they were saying, and make that accessible to practicing clinicians to understand how to work with diverse populations a bit more you know. Yes, sir, so.

Jerry Hoepner: Yeah, I mean, I found a couple of points that well, actually, several within the background. And literature review that really struck me. There's several of these statistics, but a couple that really stood out to me were the percent of deaths among black Americans during the Covid pandemic. And just you know the marked difference between the amount of actual African Americans in those communities and the numbers that died. Which were that was just really striking to me. And then the other one. The other context that you wrote about was the study of 85 black Americans. That were a part of a VA. Study, a veterans affairs study and really just talked about their, you know, their feelings of being stereotyped by the professionals that we're dealing with them, treated and labeled as if they were uneducated, and addicts and angry and poor, and those really set the context for the study. Wondering if you can just kind of weigh in on those and other kinds of striking background pieces of information.

Warren Brown: Yes, sir, so you know, it's known that you know there is racial bias when it comes to African Americans in general, just because of how society is. But you know oftentimes in neurogenic disorders it's unstudied, right? You don't look at race and ethnicity as factors as being contributing factors to some of the issues that the populations that we service are dealing with, you know, looking at Covid alone. You know, we added, that I added that statistic because you know it just kind of highlighted how much racial disparities really are prevalent right and not just individuals with aphasia, but individuals who have a multitude of you call it metabolic issues, right or just issues in general when it comes to healthcare, and how sometimes these issues go unserviced or underserviced, or these individuals are not educated about what they need to do or what they need to accomplish, from a healthcare practitioner which ultimately leads to poorer outcomes across that population. You know. One of the things that we listed in that paper was also about just black women in general, right? Black women are twice as likely to have low birth weights of infants when compared to white women, and they also face lower rates of prenatal care right? Although that doesn't have much to do with aphasia. I think that that speaks to a larger picture than that.

Jerry Hoepner: Yeah.

Warren Brown: You know. Sometimes African Americans are looked down upon the most across our society. And why? That is, you know, it's a multitude of reasons, right? There is no one pinpointed answer for that, and it just kind of paints to the goes to the bigger picture of racial bias, and how patient and provider communication is just poor across the board, and you know, and it could be because of communication styles are different, right? It could be because of the practitioners. You know the old mindset was that the practitioner is always right, so they should. You know the patient should listen to what they're saying, and it's not. It wasn't necessarily a patient center or person-centered approach like it is nowadays. And some practitioners, especially in the South. They still are under that mind, right? Not necessarily in the South, probably across the board in the United States. Right? So, I think that you know those biases, and some of that lack of communication or poor communication it just contributes to the poor perceptions and stereotypes that are out there in African Americans and black people you know, because regardless. When a black person gets sick, you know, they may be scared to go and talk to a practitioner because of where they live. That might be the only practitioner or specialist that they can see, and they are a family member, or a friend might have had a bad experience. Therefore, they're hesitant to go to that person, and they'll just deal with the issue themselves. And that's where you know. I think a lot of the differences are when it comes to African Americans and healthcare providers. And I've seen that as well with individuals who have acquired language disorders. Right? I've had patients particularly. Tell me when I was practicing that. You know, Warren, we want you to come back, but we don't want the other girl to come back, right? Because you're listening to what I'm saying. You actually are educating us about what's going on more so than just what the language issue is right. And I think that points to the picture of just them feeling comfortable with me, because I'm most of the time with the same ethnicity, right? Same race. And I'm genuine, right? I do the same with any patient that I encounter. But obviously, sometimes, when it's African Americans, and I know what the assumption is, and I understand some of those experiences are, you know I try to go a little bit more. I try to. I try to go the extra mile for them. So, this.

Jerry Hoepner: And I think there's it's interesting. And throughout the paper there's parallels to some of the work that you and I and Dr. Keegan have done on healthcare perceptions in traumatic brain injury. That you know you mentioned that idea of providers still following it, falling into that provider centered care rather than person centered care. And I think that's a problem across the board for some providers, because that's evident in our research. But we don't have you know, we're not even representing the black Americans within that group. And I know that the problem is more pervasive when it comes to services for black Americans and other colored people as well. You know the one number that really struck me from the study in Chicago, 70% of.

Warren Brown: 70%.

Jerry Hoepner: From Covid.

Warren Brown: Yeah.

Jerry Hoepner: Were black Americans in Chicago, and only 30% of their populations or population was black Americans. That's just. You can't help but be startled by those kind of disparities, because clearly there's something.

Warren Brown: Up in there.

Jerry Hoepner: Something that.

Warren Brown: And these are these are fairly new studies. Right? I mean, the stat for Louisiana was 70 70.5% of this, and they only represent 33% of the State's population. Right? We're African American people. So that. That's you know. My personally, my dad didn't leave his house for a year and a half during Covid he would not go to church. He didn't leave right, and he was terrified. Terrified. You know. I know he had at least 4 or 5 people that died that he knew. You know. So, I mean, it's daunting right especially if you're not educated, or you're not understanding. I had a great relationship with a practitioner that could educate you on, you know the do's and the don'ts of what you should or shouldn't be doing so. Yes, sir.

Jerry Hoepner: Yeah, absolutely. I kind of broke down the article into 3, like major areas of interest and topics. And I'll just kind of lay out the 1st one being those challenges with healthcare providers. I couldn't help but put down. This one quote was like being put in a damn box, and we had a little conversation about that earlier, but We also talked about this like this lack of knowledge about stroke and that healthcare literacy creating this fear like. And you even mentioned that with your dad, right? This fear that I don't even want to go into that healthcare context. But then this like laundry list of things that we hear in a lot of studies about healthcare perceptions, healthcare providers are dismissive, dismissive, and you feel vulnerable in that context, you don't have control or agency. Those kinds of things that we don't hear in in those other studies about healthcare perceptions are things like. There was a clear. There was a clear prejudice against me. Right? There was this neglect by providers. One lady I had to write this down, wrote. I don't talk to my dog like that, you know, like.

Warren Brown: That's right.

Jerry Hoepner: So.

Warren Brown: That's right.

Jerry Hoepner: And then, you know, just a lack of inclusion in decisions in in the whole entire process. And just feeling that sense of people looking down on you, and that you know that this is kind of the expectation. So I'm really interested to get your thoughts about. You know that that issue of those challenges in terms of working with healthcare providers. How many of those are communication based? And what's kind of bias and kind of sorting some of that out, because we know some happens a little bit to everyone in that context. But certainly, this is different.

Warren Brown: Yeah, I think that you know we all have personal biases that, you know are inherently that we are. You know that we're introduced to that from an environmental standpoint. But you know, one would assume that when you become a healthcare practitioner provider, you know you have to be open-minded because, you understand, you're going to be dealing with so many different types of people from all walks of life. And unfortunately you know, these disparities still are there, and this particular study showed that they're still there, right one of the examples you just gave about the young lady that said, you know I wouldn't let my dog talk to me like that right? I remember in in her Transcript she also stated that you know, in multiple visits that she went to her physician would talk through her or over her, where she just totally felt dismissed, or one interaction she had. She had a friend who was white that brought her to the doctor, and they felt as if the friend was the patient, and she was the patient caregiver right? And I think that really broke her down. She literally stayed out of therapy or avoided therapy for a long time because of that. And obviously that affected her outcomes right. But I think the bigger picture is that it's a little bit of both, Dr. Hoepner. I think it's a lot of bias, and it's also poor communication. You know, I think, and some of that's not on the physicians themselves. Some of them, I'm sure, are compassionate. I think some of that is on the larger system systemic issues that are out there. Right? You know you have. They have insurance deadlines; they have time frames. They have. Probably some of them are overwhelmed with patient care in general. But I still think that you know to be truly compassionate, you know you need to understand what you're getting into as a practitioner, and still with individuals that you know may not understand some of the dynamics of some of the diseases or illnesses that they have. You have to find a way to provide them services that they need. Right? I think the communication is key, because it always goes back to communication. Right individuals who are educated, which a lot of these folks are. Some of these folks in the study. I had PhD. Some of them were medical doctors, right? Some of them have master's degrees. A lot of them still stated that their health literacy was poor when it came to symptomology, of strokes, symptomology of not just strokes, but them acquiring aphasia what that truly meant, and how that might affect their daily lives. Right. One of the individuals she stated that she didn't realize that you know aphasia was a thing until she had it. She didn't realize that she was having multiple strokes right until it happened, and she just felt like she would bounce back and go back to her daily life and be fine and go about her normal business. But you know it's hard to pinpoint exactly how to fix it. But this study is, I guess, one step towards trying to understand the different dynamics from multiple perspectives. And I think what makes it super unique is this qualitative study is really, really, it's very in depth. That's why it's so long right? It's a long paper. But we felt it necessary to put these quotes in, because these individuals, these interviews long and you can't help but be compassionate and understand each individual's perspective on what their experiences were right. You know, because this dynamic, this really changed their lives. And I know aphasia changed the lives of a lot of different people and caregivers right. Anytime you have a failure or even a brain injury. Right? It changes we know that. But I think compounded with the racial and ethnic tension or societal views that these individuals suffered with prior to having those injuries. This acquiring aphasia only makes whatever was going on a bit worse, because the inability to communicate or even comprehend what's going on around you, right being overstimulated, not necessarily being able to do on your own, or do for yourself, especially with a practitioner on something that's unknown to you is again. That's a daunting thing like you really don't know what to do, and if you feel dismissed, or if you feel as if a practitioner is talking down to you, what would make you, as an individual, want to go back? You know the a good example, I can say, is customer service right? If you go to a restaurant and you receive poor customer service from a from a waitress, will you give them a tip probably, maybe, or you might give them a less amount of tip that you would have gave given to a person who gave you better customer service right? This is a good example of what a physician interaction and communication is with a patient right. Sometimes these individuals just won't go back right or might not go back to any practitioner one of the individuals in the interviews. He literally said that you know he had a few poor encounters, so he switches doctors regularly because a lot of them don't understand him and won't try to understand him. So, you know, it's problematic. It's definitely problematic.

Jerry Hoepner: And you hit the customer service thing right on the head, because one of the things that I was struck by, and I've done work kind of parallel to this. And brain injury is that relationship and the importance of starting to build an authentic relationship in terms of mitigating some of the other communication problems, right? Like, if you invest a little bit in like getting to know that human being. You start to humanize them, and you start to, you know, want to have good outcomes for them, and that results in in better care. And it comes right down to that. That patient centered versus provider centered communication. Right? If you open up the door on the front end to investing a little bit in a relationship building, it seems like the goodness follows right like you're saying earlier, like, these physicians aren't bad people right? It's just, you know, they're in a system that says, Go, go. And then they have these biases that they might not even be aware of. And the next thing you know, they're out, you know, on the way out the door, and care hasn't happened in the way that it should. But I'm just struck by the fact that that was like a mitigating factor for people like just a little investment get to know that person. And then everything changes so.

Warren Brown: That's right. I think I think that's what you know. Someone asked me a while back. Why, like our Black aphasia group. Why is it so successful? Right? It's because it's not if I don't. The way that I approached it. I didn't approach it as me, Warren brown as an SLP. Right? I approached it, me, Warren Brown is trying to understand these people's stories and get to know them, and fully. How can I, as an SLP, help you right? And I think that's why our group is so successful, right? And why people keep coming back. Because if they didn't feel like it was a genuine interaction, I can assure you they wouldn't come back. Because I genuinely look forward to the group like the group members do, because I love talking to these folks. These are folks of my family, right? And that's the type of community that you know. Practitioners can make it like that right?

Jerry Hoepner: Okay.

Warren Brown: You know, in certain rehabs. That's what it is. It's a familiar environment. At certain places. I know some of the ones that I used to work at. So, you know, but I definitely understand the dynamics of health care have changed right as time has progressed, and that's due to a multitude of reasons. But care doesn't have to change. Right practitioners can change for the better. If you fully try to understand and invest time and energy and being genuine into the folks that you're seeing right. I truly believe that so.

Jerry Hoepner: Agreed, you know, and when I kind of listed a bunch of priorities, or what black people with aphasia want this? Isn't it an outlandish list by any means like, I've got this big, long list of things that are problems. And then they say they just want to be treated with dignity, compassion, and respect. They want.

Warren Brown: Right.

Jerry Hoepner: Heard, and they want to be treated like human beings. That's not unreasonable. So, it's not like they've got this big, long list of you got to do this. This I just think that's pretty interesting in light of all of the struggles that they're facing like. If you could give us these 4 or 5 things we could. We could work with.

Warren Brown: Yes, sir, and I. And I think even with that the you know, interpretation of respect is different from everyone. But I think ultimately, no matter what race, no matter what ethnicity, what creed you are. Respect is respect, you know, treating people the way you want to be treated right. I mean, that's what it is. And you know, talking to people the way that you want to be spoken to. Right? That's what it is. And I think, like you said, it's so simplistic it should be natural. But obviously it's not for some people right?

Jerry Hoepner: Okay.

Warren Brown: And that's and that's problematic. But hopefully, it's hopefully, we're trying to change that. So you know.

Jerry Hoepner: Yep. yeah. Finding a way to make those priorities on the front end. I think that really makes sense. The other thing I wanted to talk to you about kind of get your take on. This is along with the challenges and along with kind of these desires. What people with aphasia want? I just noticed a lot of strengths that I'm not seeing in some of the other research that's out there from the perspective of survivors of brain injury and so forth. Things that I just saw flowing through like this idea of self-reliance like I learned, I gotta rely on myself, I rely on my faith and my religious beliefs. And then this really struck me, this, this cultural community, where one of the one of the participants said something to the extent of, We always stay in each in each other's business, kind of like, whether we want it or not, whether they want it or not, and that allows them to help each other. I’d just like to get your thoughts on that, because that seems like such a strength of this community.

Warren Brown: Yes, sir, that's a that's a loaded question, but I can definitely break it down. So, I love that question, though I think that you know, from perspective of self-reliance. That's definitely a cultural thing, right? Because, you know, personally, I'm 38. So, I was raised to not be dependent on someone else, because you really can't depend on what someone else can do for you outside of what you can do for yourself. That is something that is instilled at a young age and I went to Southern for my master's right Southern university in Baton Rouge, which is a historically black college or whatnot. And you know, at Southern they taught us the same thing, because, you know, as you know, our field is predominantly white women, right? Less than 5% African Americans, even less percent African American men. And at Southern they always said, You have to work twice as hard in order to be in this field and be successful. And they instilled that in us so much right. Because you really have to understand that you know society has painted this picture that things are against you and these individuals, with aphasia in their own careers, have had this same type of battle and everything that they've gone through. So, they've always had to prevail. And some of these individuals in this group. They went through the Jim Crow South right they went through struggles of individuals, fully talking down to them, having separate everything, having to deal with parents and grandparents that, you know, had to bow down to certain people because of the societal norms at the time, so that self-reliance, you know, always was there, because they always had to work harder in order to achieve what even was fair or normal for other people right? And that paints it to a bigger picture, even goes back to the level of respect. Right? If you work twice if you feel like you working harder than someone else for a job. And you know you're more qualified. Right? That's something that that you feel you're owed. But to some black people you understand that I'm not old. Anything right? That's just how society paints it. It is what it is, and I think that goes back to that point. And I'm sorry. What was the other question? I was trying to.

Jerry Hoepner: So, I think just that that cultural community.

Warren Brown: The cultural. Yes, sir.

Jerry Hoepner: Others, business and.

Warren Brown: So that kind of touched on it, like I think from a cultural standpoint, you know I am my brother's keeper. Right. You may or may not know this, but I'm in a I'm in a predominantly African American fraternity. Right? We're the oldest fraternity, and that's something that we learned right. You. You never go anyplace by yourself. You always have your brother with you. I always have you know I am my brother's keeper, and that goes from, you know, not just African American males, but African American females, and vice versa, because that sense of community, you know. Again, we talked about it earlier with the Speech acts is unspoken, things that we understand inherently, that as an African American or a black person, you're going to endure in life, and you have to just suck it up and swallow your pride and deal with it. But we all are going through that struggle right, and I think some demographic groups can relate to that. But obviously some groups can't as much right. It's harder to you can empathize. But you may not fully understand, just because the dynamics are different, right? And I'm not saying that all black people have that experience. I'm not saying that. But I'm saying that a lot of black people feel like that. And that was inherent in the interviews as well. Because this group, you know, they, we talk about community. We talk about personal experiences and regardless. If some of them had a PhD., a MD a Ms., a BA right behind their names. All of them had the same experiences. Right? I have to highlight one of the folks in the group. He went to Harvard. He was the second African American person to graduate with a PhD. From the State of Mississippi. Right, you could. I could only imagine. And he did this in the seventies. I could only imagine the struggle that he had to go through right to attain a degree like that from a school like that coming from where he came from. So you know something that you know other people's family members may have done, you know, is probably much more meaningful to him because of the struggle he had to go through, and I think that is where the community comes in because African Americans acknowledge that right? I was always told. Like, you know, school is important. Education is important, you know, education to get you a lot further in life than sports and all these other things, because, you know, it was always instilled that in education, you know, knowledge is power and you know these older folks. I call them older folks. No offense, right? No ageism here. But you know the 70 plus right. Those individuals who have doctorates and really are fully educated. Their battle and struggle was much harder than mine coming through school right? And I. And that's a level of respect, a level of community that we all know how to respect. And I think you know, when it comes to community, that's something that we all can recognize as a culture. And with this particular group, that's something that's respected across the board because, regardless of the level of severity of aphasia, they have every individual in that group respects one another. They check on one another. They listen to stories about one another. They know about each other's family right? Milestones. It's phenomenal, right. When I got my doctorate. They were the 1st people to congratulate me right. When someone had another struggle in the group. We were the 1st to say a prayer for them and why? That is cultural. It's a traditional thing. I mean, it probably ties back to slavery before the great migration, right? And folks moved up and all around from the south to different parts of the North. Right? That's something that is always probably going to be there. And that's a cultural thing that you know, is really unspoken a lot of times. So.

Jerry Hoepner: Yeah. You know, you talked about the people in the study, the people with PhDs and master's degrees and physicians. One of the stories I kind of connected with was Ann Story. She was a physician prior to her stroke, and had acknowledged that she had colleagues that she would refer black Americans to, and colleagues she wouldn't and then she had the stroke, and she had this very personal, insider experience. I don't know if you want to just say a couple of things about that.

Warren Brown: Yes, sir, she actually, I'm glad you said that she actually definitely said that she referred people to certain practitioners because she knew certain physicians with had more empathy than others. Right now, her experience was a little bit different, right? She didn't really have any negative experiences with practitioners, but also all of them knew she was a medical doctor, right? And I think that you know that level of information is different, because had they not known who knows what her story would have been right as opposed to the individual with the PhD. They didn't know he had a PhD. Because at the time of his stroke he couldn't talk, so it wasn't until his wife came and alerted them as to who he was and where he worked, that some of that stuff shifted, and obviously it shifted when he went to different facilities as well. But Ann's experience was very, very different than some of the other individuals, but I think that even with that she was much more conscious about her experiences as well, because she kind of had a better anticipation about what she was supposed to receive and how services were supposed to go for her right. And that goes back to the bigger picture of healthcare literacy right? Obviously, her literacy and understanding of how healthcare works was a bit better because she was a medical doctor, and I think even just. Her journey with aphasia was a bit better in a lot of different ways as well. Yes, sir.

Jerry Hoepner: Yeah, that's really important to have that that perspective and that kind of juxtaposition. Well, I do want to make sure we have some time to talk a little bit about your role in running the Black aphasia group, and how that's changed your clinical perspective, your research perspectives kind of what you've learned in that. In that context.

Warren Brown: Absolutely so. Originally, I was gung ho! About brain injury. Only, right? I didn't really necessarily want to go into aphasia as much as I am, because my premise for going to get the PhD. Or really one of the main reasons why was I wanted to study sports, related concussions mostly. But once I got into the program and I learned about some of the different, the different profs, some of their interests, you know. I couldn't help myself, but dip into it some, and I got an opportunity at the last Aphasia conference to meet Teresa Gray and she allowed me to facilitate her group out in California, and then we started our own group through the aphasia center of Acadiana with Dr. Azios and Miss Rose Shelf. So, you know, I still run that group. It's still affiliated with the aphasia center of Acadiana. Although I'm in Jackson State. I asked Dr. Azios if we could continue to do that because I think that that connection to an aphasia center is integral. Because I think that you know with the group, that's what we're known for. And that's what we're going to stay as long as they'll have me. So. You know, with that group I've learned so much more than what I knew before, as far as compassion, as far as empathy. As far as, although you might be the expert or the practitioner, you still need to understand the dynamics of the individuals that you're seeing just hearing some of their stories, and even personally, as a practitioner, some of the things that I used to do right, which were probably wrong, because that's how I was trained originally in the beginning, you know, and I shifted throughout my career as well, because I understood a lot more, but I think even more so now, I really fully understand. And that's kind of what I teach a lot of the students that I have right how to understand the dynamics of people that you're working with and the students at Jackson State. They have an opportunity now where they actually come on with the group, and I allow them to have somewhat of a conversational type of discourse with the members, so they can understand those dynamics, for whenever they get out in the field to understand how to work with diverse people with aphasia. So, one of the things that you know, we were able to start with the group members. And this was all the group members. They wanted to create an anthology, right? Because they stated that they wanted to document right their journeys and journeys for other people who are African Americans or of color to understand. You know what you may or may not go through right that you are not alone, that you aren't in a damn box by yourself. Right? They wanted to understand that also for caregivers what to do, because all of these individuals literally stated, they all were oblivious to aphasia prior to this, prior to acquiring it. So this anthology is serving, as you know, just a guide or tool to use for individuals and for other individuals with aphasia who may or may not be of color to relate with right and for individuals to understand like, Hey, you know, this is what I went through. You know I am black with aphasia. This is also to get other people who are black with aphasia in their caregivers to understand that. Hey? We have a group for us out there that you may or may not want to be a part of and last week we actually added a new member. So that was wonderful. But so far, we have multiple different entries. The group participants have entered essays. They've entered poetry. Some have done checklists, some have done prayers some have even one. We have one from a caregiver. Her husband has aphasia. She comes to the group as well. We love her. She's actually a compound pharmacist. She wrote about her perspective as a caregiver in the anthology as well. So.

Jerry Hoepner: Cool.

Warren Brown: Me. Being in Jackson state. I got lucky enough to talk with Dr. Brandon Newkirk Turner, and Dr. Morris is that the University of Saint Augustine. They connected me with Dr. Mcdaniels, who's over the Humanity Society in Mississippi, and she's gonna help us to get it out there. So.

Jerry Hoepner: Awesome.

Warren Brown: And recently we started a collaboration with one of the art, the Black art History professors at Jackson State, Dr. Brittany, Meinberg. We're actually going to make it aphasia friendly. So, whereas we're gonna have mirrored pictures of the entries and the pictures of those entries from an abstract standpoint for individuals who have aphasia so they can read it and be aphasia friendly as well. So yes, sir, that's the idea, and hopefully we'll have something by the fall of next year. So.

Jerry Hoepner: Because.

Warren Brown: At JSU, we're going to be doing a symposium on aphasia. And obviously, since it's an HBCU we're gonna have some focus on diversity with that as well. So yes, sir.

Jerry Hoepner: Well, I'm excited to see that anthology come to fruition and look forward to kind of keeping an eye out for that and everyone out there who's listening. Keep an eye out for that as well. Just a handful. 2 or 3 more questions I want to ask. Just find out a little bit more about your experience. I know that you've had opportunities to work alongside of some great researchers and clinicians. I want to get your perspectives on that. And yeah, share a little bit about that, and how that's prepared you to be like a brand new professor this year. So.

Warren Brown: Yes, yes, sir, absolutely you know. I can honestly say it's truly been a blessing since I started at UL, and I'm done now to be able to encounter all the folks that I have. You know, from Dr. Salvatore to Dr. Michael Canito to you. Right, Dr. Hoepner to Dr. Louise Keegan, Dr. Azios, Oxley Ryan, Nelson. You know the list goes on right. Everybody that I've worked with and spoken to all have different perspectives of our research, you know, and I and I take pieces from everyone that I've worked with to understand how I want to approach things right, because my love is always going to be diversity right in whatever area that I'm in. And you know, I think that's what makes me a little bit unique, right? Because my perspective is always looking at the population that I mainly care the most about right. And you know understanding the different dynamics about how you all have what you all have done. And from reading, all of you guys work, I call it borderline stalking. You guys work right? I remember the 1st time I met you, Dr. Hoepner, I was terrified to talk to you, man I really was, and then, when you introduce yourself to me, I was quiet, and I was like, he's normal. He's not like, I thought he was. So, I was like, Okay, this, this is cool. So, and Dr. Jamie said, just go talk to him. He's cool. Go talk to him. I was like Okay, but I use it as an example, because, you know we're all human, and I think that you know sometimes, you know, as a new researcher, as a novice researcher, as a student, you know, you get overwhelmed with the people that you're reading about, the books that you're using or books that you're reading. These are the folks that are writing it. And hopefully, one day you can get to that level to impact students like myself, like I was, or students that are out there, up and coming students. So, you know, I think, that all the work that everyone is that I've learned under and still learning under, you know, it's important, because this is all. This is all, how we all are contributing to the field and how we're making the field better. Right? I think that's the ultimate goal ultimately is to serve the population of individuals that we're treating. It's never about me, right? It's never about you. It's never about any of this is about the work that we're doing to improve outcomes, to improve the populations that we serve. And you know, clinically, I've worked with some phenomenal clinicians. When I was a clinic, when I was a clinician when I was a full-time clinician and you know I've had great clinicians that I've worked under and with, and horrible at the same time. I think we all have, and you know, when I was in administration I would fire and hire people left and right. I would let people know if they were horrible, and I would just go on and keep moving. But I think you know now that I've shifted to research and understanding how clinicians think to a certain degree. You know, I can understand why some clinicians practice the way they do or did, because they were ignorant to what's out there, you know. Earlier on in my career I was oblivious to aphasia. I heard nothing about it. I work in acute care hospitals, major acute hospitals because they weren't that popular in the South, right? It wasn't really until I got to Southern, and I taught undergrad for a while. And you know in some of the text that I was reading. I read about it, and I was like, Oh, I never knew that was a thing right, because they weren't offered. We had Parkinson's groups. But we never had aphasia group, right? And I think that you know, and TBI groups that we have that as well. But I think these groups are much more impactful because they do serve as a sense of community for a multitude of people. And these groups are places where individuals can go when they plateau out of therapy. And I want to say something on that, too. That's actually one of the topics we wrote about in the anthology. What does it feel like to be plateaued or told you plateaued in therapy? Right? And it's just amazing how you know as a clinician, you say that to someone right? Or you meet, you met Max level of potential. You say that to someone, but you don't fully understand the mental or the impact that you have on an individual when you say that right? And that was something we talked about. And now they're writing about it. And I'm like man. I never thought about that as a clinician. So I say that to say even I'm still learning right. That's something we should know. But you don't think about it from a clinical standpoint, because that's a standardized thing. But to an individual who's suffering from or had to endure what you're saying to them, it's a totally different perspective. Right? So, you know, I'm learning that. And I'm learning how to be more compassionate, too. So yes, sir, I'm learning a lot. I love it. I love it so.

Jerry Hoepner: We are well on your way, and you will make that impact on a lot of students. I'm sure you already have. Well, just to kind of bring things to a close. I want to end with a lighter note hopefully, a lighter note. What brings you peace in the midst of this sometimes crazy world that we're living in.

Warren Brown: Oh, man, I love! I love my kids and my wife. I love my kids and my wife. They bring me peace. I'm a I’m a classic car collector. I love my classics, too. I have them. Can I share about that?

Jerry Hoepner: Absolutely.

Warren Brown: So, I have a 1969, a 396 Chevelle that I bought years ago. And we're restoring that we're almost done with that. I just have to get it painted. And recently I bought a 1985 K. 5 Chevy Blazer that we started to restore as well. It's a smaller engine. It's a 305, but that's something that brings me peace as well. You know my dad was a jack of all trades. So, I learned at a young age how to construct houses, how to do plumbing electrical fix cars. That's why I went to college, so I didn't want to do that full time. So, but one thing about it is that you know, I learned how to do all those things, so I can teach that to my kids. And hopefully, that's our family time. You know that we do these things together. That's what truly brings me peace, my family, and a lot of my friends. So, for sure. Yes, sir.

Jerry Hoepner: Well, that's fantastic. And obviously you and I could talk all day. We need to wrap things up. Hopefully. We'll get to see you at the Aphasia Access Leadership Summit and connect there.

Warren Brown: I'll be there. Yes, sir.

01:05:02.260 --> 01:05:11.929

Jerry Hoepner: Connect with a whole bunch of new people. That you haven't met yet, too. So, thank you so much. Warren and I look forward to talking to you again soon.

Warren Brown: Thanks, Dr. Hoepner. Thanks for having me. I appreciate it.

Jerry Hoepner: You're so welcome.

On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access.

Dr. Janet Patterson: Welcome to this Aphasia Access Aphasia Conversations Podcast, a series of conversations about the LPAA model and aphasia programs that follow this model. My name is Janet Patterson, and I am a research speech-language pathologist at the VA Northern California Healthcare System in Martinez, California. Today, I am delighted to be speaking with Dr. Elizabeth Madden, an Assistant Professor at Florida State University in the School of Communication Sciences and Disorders and an affiliate of the Institute for Successful Longevity. Liz also leads the FSU Aphasia Research Laboratory. Liz's research, teaching and clinical interests focus on rehabilitation of aphasia, and specifically on understanding the relationship between spoken and written language abilities in individuals with aphasia and developing behavioral treatments to address reading and writing disorders post stroke. Her work also addresses the impact of aphasia on the friendships and social well-being of people with aphasia and their care partners. These Show Notes accompany the conversation with Liz but are not a verbatim transcript.

In today’s episode you will hear about:

1. the power of friendship and what people with aphasia and care partners think about how aphasia can affect the ability to create and sustain friendships,
2. the definition of literacy and its behavioral components, and
3. behavioral treatments for reading comprehension deficit in aphasia.

In 2024, Liz was named a Distinguished Scholar USA by the Tavistock Trust for Aphasia UK. The Tavistock Trust aims to help improve the quality of life for those with aphasia, their families and care partners by addressing research capacity related to quality-of-life issues in aphasia. Congratulations on receiving this honor, Liz. Aphasia Access collaborates with the Tavistock Trust for Aphasia in selecting the awardees and is pleased to have the opportunity to discuss their work and the career influence of the Tavistock Award.

Welcome Liz, to Aphasia Access Conversations.

Dr. Liz Madden: Thank you, Janet. I'm really happy to be here today. I also say thank you to Aphasia Access and to the Tavistock Trust for Aphasia. I'm very grateful for this award and excited to have this conversation.

Janet: I'm excited to be talking to you, my friend and research partner in several endeavors that we've been working on over the last few years.

Liz, as we've said, you were named a Tavistock Trust Distinguished Scholar USA for this year, and you join a talented and dedicated group of individuals. How has receiving the Tavistock Award influenced your clinical and research efforts in aphasia,

Liz: I first wanted to extend that thank you to the Tavistock Trust for Aphasia, and specifically Henrietta, the Duchess of Bedford and the honorable Nicole Campbell, and just a very gracious, sincere thank you for all the time and effort and support they give to aphasia researchers. I would say, I'm just delighted and very humbled to be recognized this year. I would say further that this award motivates my work that is focused on trying to really make an impact on the lives and quality of life and successful living for people who have aphasia and continuing my work. My beginning work was really more impairment focused, which some of that we will talk about, and I really value that. But having this award, and the more I stay in the field, it is extending that and making sure that everything I'm doing always is directly related to helping the lives of people with aphasia.

Janet: That leads right into the question I'd like to begin with Liz, which is about your recent work investigating the role of friendship for persons with aphasia. I believe in the power of friendship and community during joyful times and also during the sad times in one's life. In Aphasia. Access podcast episode number 119, Finding the person in front of aphasia, I talked with your friend and colleague, Dr Lauren Bislick, with whom I believe you collaborate to investigate friendship and aphasia. How did you become interested in this aspect of aphasia, and what can you tell us about your work in this area and your collaboration with Lauren?

Liz: Lauren and I did our Ph.D.’s together. We both were mentored by Diane Kendall at the University of Washington, so Lauren and I are Ph.D. sisters. Also, we were both at Project Bridge, led by Dr. Jackie Hinkley in 2018. That's really where my interest in friendship began. That conference brought together researchers, speech-language pathologists, people with aphasia, and their friends and family. I was the researcher at a table, and we ended up being Team Friendship. Lauren was also at this meeting, but she was at Team Yoga; Lauren does a lot of work with friendship, but also with yoga. My other colleague who does a lot of friendship work with me is Dr. Michelle Therrien here at FSU. She primarily works with children who use AAC, but her main research is friendship. She and I had already had some conversations about the importance of friendship, particularly for people who have communication disorders. The idea was we leave the conference and to take action and carry out some of the goals that were generated from that discussion. So that's when I reached back out to Lauren, because she was at that conference. Then I also reached out to my friend, Michelle Therrien, and other individuals who became part of our Team Friendship, Dr. Sarah Wallace, who's also one of our good friends and collaborators, and Rachel Gough Albritton who is one of Jackie Hinkley’s former doc students and here at FSU as well. and the office of research. That is the background of some conversations before Project Bridge, but really for me, coming back and actually starting studies addressing different aspects of friendship, which I know we'll talk more about, was really brought about by the Project Bridge conference.

Janet: That is quite a story, and I can see you sitting around the table and developing Team Friendship - good for you.

We all know, Liz, that one of the unfortunate consequences of aphasia can be the loss of or the diminishing of friendships, or the disruption of the communication skills important to developing and sustaining friendship and community. What have you learned from people with aphasia about their successes and challenges in sustaining and creating new friendships.

Liz: Yes, good question. Well, at that conference that I mentioned, there were five or six people with aphasia, and initially our table was labeled something like, What happens in the long run? and we started having conversations. It was very clear after our initial conversation that the group centered on relationships and friendship, so we shifted to being friendship only. I will say, just at that table, it became very clear to me, that's what rose to the top when the group was thinking about the bigger picture of living life.

In a research project we've done there was a small sample of 15 people with aphasia, and we talked to them over time. I think the timing of a conversation is really something important to keep in mind when we're talking to people with aphasia about any topic, of course, but particularly friendship. From other studies we've noticed that responses are really different. If we're talking during the early days, maybe the acute days, versus the chronic days, we'd get really different responses. Just a quick summary, again, this was 15 people and a unique set. Most people in our study were a part of aphasia groups, and, of course, really motivated to do research. But I will say, when we looked at their responses, when asked to think back to the early days, all different aspects of friendship, how supported they felt, or how they were able to communicate, and we compared it to their responses in the now. Overall, the pattern was less satisfaction, feeling less supported or less able to engage in those earlier days, but more of a recovery pattern over time, but again, not for everybody. There were still a few people in our group that were reporting not having many friends. Our paper had a different light, a positive light about friendships. Some of the other papers out there have a more negative tone. It's a very important area we need to address. I was happy to see this group reporting, now that they had been living with aphasia for several years, their pattern of more negative responses early, and a recovering pattern now. They reported making friends with other people who have aphasia, and finding at this point, who are those good friends.

There's other great work being done by other colleagues, Brent Archer, Jamie Azios and Katie Strong, who are studying the same topic. They had a great paper that describes who stuck around, they were examining the next steps of what it takes to support the positive recovery that we know does happen for some people.

Janet: I like the positive perspective you are taking. Given that one has had a stroke, and given that the this is the situation in life, what is the positive? What can you do? Who are your friends? Look at positive ideas rather than publishing research on all the negative aspects. Kudos to you for doing that.

Liz: Thanks, all of it's important, right? We have to know that. I think we had a special group. I think we had a particularly positive outcome, and it was good to know that friendships don't disappear for everyone. But I think there's something that those people had done and that their friends had done, that we're still trying to learn more about.

Janet: Thank you for that work. Liz. It makes me think about the aphasia journey in that it involves not just the person with aphasia, but also their care partners and all the people around them. In your investigations of friendship, what do the care partners of persons with aphasia tell you about their successes and challenges in sustaining and developing friendships? These friendships could be individual friendships or partner friendships or group friendships through social, religious or professional activities or even community groups.

Liz: Thank you for this question. I think it's sometimes a forgotten group that we overlook, the care partners, and the critical role they play in the recovery of people with aphasia. I always try to have us remember we want the care partners to do well on their own as people, and so we've done a couple projects. We've just finished data collection on a much larger study of 80 aphasia care partners, and I'm just getting into those data. We did a Qualtrics survey and also did experience sampling, where we used a phone app, and four times a day for two weeks, participants got these little pings, and they had to tell us, Where are you? What are you doing? Who are you with? How are you feeling? When was the last time you interacted with a friend? Was it a text? I don't have the amazing outcomes for you yet. This project was a much bigger follow-up to a project a few years ago with 35 care partners. We, of course, wanted to interview them but then COVID was happening, so we settled for a really nice Qualtrics survey.

I will say that these individuals were surprised when we were reaching out to them. They kept trying to schedule their loved one with aphasia, and we said, “No, we want to talk to you about your friendships.” And they were surprised, asking, “You want to talk about me.’ I will say they were very excited that we wanted to know about them. Back to the timeline I shared earlier in that very small study, the profile was opposite. We asked them about their friendships before they were caregivers, the early stages of caregiving, and then now, and their comments kind of make sense. Across the group they reported in the early stages, they felt like they had really great friends, support and satisfaction. People were rallying around them, coming to the hospital to support them. Many of them had been caregiving for a very long time when we did a comparison, and their reported friendship satisfaction and support was actually lower now. The questions were not the same and the groups were different, but as I told you a few minutes ago, the people with aphasia were more negative in the acute stage, and our small group were more positive now with how they're feeling about their friendships, and the care partners were the opposite. They were feeling more supported in the beginning, and now as time has gone on, some of them report the friends aren't there as much. Some of them felt like they were a burden, or they didn’t know how to engage, being very selfless. They have dropped their own social interests to take care of their loved one. We did see in that project, that the longer, the more months a person had been caregiving, was correlated with poor self-perceived friendships and also how they perceived their loved one’s health. That was just their perception. If they perceived their loved one to have more health concerns, not just a feature but overall health, they also tended to rate themselves as not as satisfied with their friendship. Bringing in that piece of information and the caregiving burden into our new projects, we did actually get scales on resilience and caregiving burden depression. In this new project we replicated some of our same questions, and we're now trying to look more at overall well-being, seeing how resilience and purpose in life and caregiving burden might play a role.

Janet: That reminds me of the commercials, when you are taking off in an airplane or when you are thinking about being a care partner, you do have to take care of yourself as the care partner before you can give the best care to the person with aphasia. Anything that we can do to focus on the person the with aphasia, and also focus on the care partner, I think, is good in terms of developing and sustaining friendships,

Liz: Yes. Care partners definitely have a lot more to say, and we haven't actually been able to do face to face interviews yet, but we did have a lot of really rich, open ended responses and surveys that we're still looking through. A piece I'm really interested in, is we have that one-time perception when they did our one-time survey, now we have their responses, we can track how people respond over a two-week period, were they always at home with their loved ones and not responding to friends? I think there's just a lot and again, trying to understand from this group what are the positives. Who are the people that have these positive responses? Then, of course, the next big steps are trying to provide more research resources and interventions for both care partners and people with aphasia. Our group has not yet reached out to friends, so that's a big part to come. I think other researchers have examined friends and a key part intervening with these friends too.

Janet: People with aphasia and care partners have different friendship styles and needs, and when aphasia disrupts communication, it can also affect the way a person approaches friendship. As speech-language pathologists, I believe that we can play a role in guiding a person with aphasia and a care partner to develop communication skills that can support friendship efforts. Liz, what are some ideas or actions that you might think of for speech-language pathologists in a busy clinical practice? What kind of actions can they take to support friendship activities, for a person with aphasia, recognizing, of course, that we are all different in our friendship activities. Also recognizing that you're at the very beginning of some of this work, I'm hoping that you have some ideas you might be able to share with us.

Liz: Yes, actually our very first friendship project addressed this topic. It was led by Michelle Therrien, and we surveyed about 40 speech-language pathologists trying to find out their view of the role that they think they should play. They find friendship to be very important. They find it to be in their scope of practice. But not surprising, were not aware of resources. They felt overwhelmed with how much speech-language pathologists have to cover, right? But it was really good to know that the group we reached out to found it to be a very important part of their practice that they want to address. I think you hit on something really important, that we teach and adopt having a person-centered care model, and we know that it's part of what we ask about. The simplest thing is asking. We don't need tools. We just need to make sure it's part of what we ask, making sure we're talking about relationships, talking about friendships.

There are some really great tools that do exist. There's the Stroke Social Network Scale by Sarah Northcott and Katerina Hillary from the UK. Katie Strong, Brent Archer, Jamie Azios and Natalie Douglas are a wonderful group who have been studying friendship. They've used the Social Convoy Model in some of their papers. It has a great visual that they have used, and therapists can also use. Basically, it is mapping out the social network of who's most important, which could be used one time, or as a pre-post measure. There are different ways, formal or informal, of trying to monitor someone's social network or how they feel supported. I don't think there's a target number of friendships and I don't think more means better, but it could be just making sure we're checking in and that we know that's an important part of therapy. We want them to be able to communicate and interact with friends. Speech-language pathologists are creative in to how to make that happen.

Janet: I agree with that view Liz, and I hope that speech-language pathologists will feel comfortable being creative and asking people about their friendships or what they might need to help maintain or sustain their friendships.

I would like to turn now to the topics of reading and literacy, which I know you have been investigating. While these terms are related, they are not synonymous. Would you please explain the difference between them and how you are investigating both in your research?

Liz: Yes. Thanks. That is a good question. To be honest, the first answer is not very scientific. When I was writing papers it was getting cumbersome to always write reading and spelling/ writing. The term came to be when I wanted to make sure that I was making it clear that I wasn't just focused on reading, but also concerned with the spelling and writing components. With my colleagues, Jessica Obermeier and Aaron Bush, we started using the term literacy for some of our work. People will have different ideas of what literacy might entail. I have been describing treatment as “literacy focused”, working on reading and spelling and writing.

My initial work was very much focused on reading, and over the past several years I became more interested in trying to also add on the spelling component. If we're working on spelling and writing it gives us a chance to inherently work on the reading. If we're only focused on reading, it doesn't bring in the writing. There's a time for them to be separate, I fully agree. There are also times where they can be targeted at the same time.

Janet: That makes perfect sense. When I think about how we discussed in the past, reading for pleasure, or reading to gain knowledge, or reading for information, or reading for safety, so many different aspects of reading, literacy also factors into how you use reading in those situations.

Liz: Yes, and so in a lot of day-to-day communication, you need both, right? It's for text messaging, right? We need to read it and respond in a written way, also emails. There are lots of instances where for the for the interaction to go well, we need to be able to read and respond in writing, such as filling out forms, email, texting, social media. For a lot of interactions we need both for there to be a successful written language exchange.

Janet: Liz, as part of our work with the Academy of Neurologic Communication Disorders and Sciences, Aphasia Writing Group, you and I were part of the team who critically reviewed treatment approaches for reading comprehension deficits in persons with aphasia. You've also investigated, as you mentioned earlier, specific aspects of reading deficits in persons with aphasia. What are some of the insights that you have gained from this work? And by the way, it was such a pleasure doing that critical review of treatment for reading deficits, and there was a lot of interesting information that came to light in that paper.

Liz: Yes, thank you. I was going to comment that I remember we thought we were going to have all these papers to go through and really and that review, we were very much focused on papers where the main outcome was reading comprehension. When we stuck to what our aim was, there really weren't that many papers that that met the aim of that project. So that really brought to light that it really is an area of our field that doesn't have enough attention.

Some of my recent projects, as I mentioned with Aaron Bush and Jessica Obermeier, we've talked to people with aphasia and gotten their perspective of before and early days. I really like doing this research over time. Things change, but we learned just how important reading and writing are to people with aphasia, and that they really want to work on it. I think we've seen when we looked in the literature, there wasn't much there. When we've talked to people with aphasia and speech-language pathologists, they want to work on reading, and they're not sure how. That further motivates me that this is an area to work on.

In some of my beginning work, I was Diane Kendall’s research speech language pathologist for a few years before I did my Ph.D., and I exclusively delivered her phono motor treatment. In that research trial, the main outcome was word retrieval, but the therapy that she designed inherently worked a lot on reading and writing. We retrained every phoneme - how to say it, what your mouth is doing, and also the graphemes that go with the phonemes. As her research speech pathologist, that's really when I got very interested in reading. I'd be in these sessions, and we'd finally bring out the graphemes that go with the phonemes. I recall telling people that this is going to get better – and it did not. That connection between the phonemes and the graphemes, for a lot of people, wasn't there. In that clinical experience as her research speech pathologist is when I realized that the treatment improved reading for some people, but not for everyone. So that's my background of really getting focused on reading.

In the last few years, I've been working on adapting that original version of treatment that was for word retrieval. I've added some components to make it more focused on reading. I've been working with Olga Burkina, who's at the Kessler Stroke Foundation, and has an NIH grant where she is pairing exercise with this reading focused phono motor treatment. It's fun to be a part of that group exploring the idea of doing aerobic exercise to improve the brain blood flow, and to see if that's going to help improve reading treatment. Again, the idea being going forward is what the treatment might change.

There are some other projects also. I'm working with Will Graves at Rutgers. He is using computational modeling to have us stop guessing which treatment. We're trying to get a really good baseline assessment, trying to find out about semantic impairment, phonological impairment, and then we're using this reading focused phono motor treatment. We also have a reading focus semantic feature analysis. I really enjoy getting to work with different researchers who have these wonderful, big questions, and that I'm getting to support it as the speech-language pathologist on these projects focused on reading and writing and phono motor treatment. So those are some exciting projects I'm involved in right now.

Janet: That's exciting, because you started out by saying there were only a few papers that we found that really address reading treatment, and you're right.  It's daunting, then how do you select the reading treatment? How do you help this person with aphasia who wants to improve their reading comprehension? I think it's exciting that you've got all these different avenues and are working with a variety of people to investigate treatment.

Liz: Yeah. And the one thing I'll add to that is part of that, that review we did, for some people those treatments are helping reading comprehension. But for some people, I've been trying to work on the next step. I have a very small dataset where I've added a semantic comprehension stage to my adapted photo motor treatment. I'm in the very early stages of this and I'm sure it's fine to say, but I've been having these really exciting conversations with Kelly Knollman-Porter and Sarah Wallace. They're also Tavistock Trust recipients, and they study reading from a different perspective, using text to speech, compensatory and very focused book reading. They're very comprehension focused, so we're at the very early, fun stages of where we are in our thinking. I think there might be a middle step we are missing, but we are talking about taking these impairment focused treatments, which I think have a role, and have a participation, functional part of it. That’s another emerging, new collaboration, where we are coming to reading from different perspectives, and we're trying to see where we can get with that goal, back to this comprehension question, improving functional reading, maybe from impairment and compensatory approaches.

Janet: I think that's the right approach to take, and I think it's exciting, because we have to remember that everybody reads differently. Some people like reading, some people don't enjoy reading. They read what they have to, but they don't particularly enjoy it. So, if we all come to it from different perspectives, we all have different strengths that we bring, and different deficits as well, and different needs or designs, just as is so many things with aphasia. Start with the person with aphasia, asking What do you want to read? What problems are you having? Then use that as a guide to selecting an impairment-based treatment or text to speech treatment, or whatever. I think that's exactly the right approach.

Liz: The one thing the treatment we were talking about, phono motor treatment, in general, is a phonology treatment. The good thing is that my focus is asking, is it improving reading? I'm also extending it to writing. We do know at its core, it's a language treatment, so it is nice that it can be tweaked to serve the person's main interests. I think that's important, that we are trying to work on what people want to work on, but we want to make sure we're improving, if we can, not just one language modality, and we know that these abilities are supported by similar brain structures and underling cognitive processes. That's something else we've been trying to work on, being person centered and at the same time trying to maximize generalization - lots of pieces. I am finding now what's most motivating and exciting is trying to make sure that we're doing things that people with aphasia find important, and how also to keep the whole science moving forward in this way that's going to have functional, important outcomes. That people with aphasia are going to be able to do what they want to do to the best that they can.

Janet: Absolutely! But then there's the scientific challenge of how do you collect the data? How to best observe specific outcome data on performance measures, but also collect the person-centered data. How do you collect data that really can speak to whether you're having a success and whether this might be generalizable or transferable to another person?

Liz: I think it's important that we need both. I always say, and some of my collaborators may not like it, but if in the person reported outcome, a person with aphasia is telling us that they feel better and that they are communicating better in life, and those measures should not be optional, those measures to me, a critically important part of seeing this treatment successful. There are different ways to do that and different ways to capture their perspective. For example, if trained reading words moved this much and if the patient reported outcome change is greater, then I find that to be a success. If the reverse happens, I find treatment not successful. If my probes showed gain but the person with aphasia does not see it or feel it, then I don't find treatment to be a success. So, I think it's really important that persons with aphasia tell us different things, and we need to have many assessments in both of those categories. I think, when possible.

Janet: You're absolutely right. When you think about many of the treatments that we're doing,

they are not necessarily easy, and they take time, and you have to stay the course. I think you know, I've been interested for a number of years in motivation and engagement, and what keeps people motivated and doing what they're doing. If you've got a treatment that you can see over time, small changes in your specific reading outcomes, but not so much of a change in the person centered outcomes, or person reported outcomes, how do you know the person is still really engaged and motivated and willing to slog through your treatment in order to get to the place that you hope they will? I think you're correct when you're assessing the importance of the person reported outcome.

Liz: Yeah, that's good. And then that's a whole other like measure in itself, right? The key of motivation we've talked about in some of the trials. The one person who didn't do very well, and just in our conversation, sometimes it for different reasons. That wasn't motivating for that person. There's that's a whole very important piece that a lot of us have a lot of room to improve in how we capture that and support that.

Janet: Which is a challenge when we're trying to devise treatments for, say, reading or anything that can be applicable to a wide range of persons with aphasia. Kudos to you for meeting that challenge as best you can.

Liz: We're working on it. But I do really think that it's changing. Sometimes I feel like there are impairment-based people and life participation people, and I don't think it needs to be that way. It’s fine if we only study one area. We can't all study everything, but I think as a whole they complement each other very well. And so I'm just excited to see that it seems like things are moving in a really exciting way, where people who study aphasia in various different ways now seem to have the main outcome, asking is this going to help people with aphasia feel better, communicate better, and look forward to something different in life? I think we're all seeing that that's what we're supposed to be doing, and how we do it is going to look really different, and that's great. I think we're moving in the right direction.

Janet: Very well said. I think, and you obviously do as well, that literacy and reading skills are crucially important to individuals with aphasia in so many ways, such as life skills reading or pleasure reading. Acknowledging that we all have different skill levels and preferences, what are some ideas that you might have identified that speech-language pathologists can use to support the literacy and reading desires and activities for a person with aphasia?

Liz: Great question. I think my answer is very similar to the question about what can SLPs do to help support friendship? I think being person centered. You said earlier, right, we all have different interests. Somebody might say it's not one of my goals and I really don't want to spend a lot of time on this. But just having those conversations and person-centered measures and using supported conversation we can easily gather important information. There are some really good patient-reported outcome measures that ask about reading, so maybe use some of those existing tools. The Comprehensive Aphasia Disability Questionnaire has a nice scale that talks about different aspects of reading as well as other aspects of language. But at the minimum, I think finding a way, even just to draw your own scale and then trying to find out in their life, what are different activities where they want to or need to engage, right? Texting, email, restaurant. I mean, we think about it, we're reading all the time throughout life. So, I think finding the reading need is a general interest and then getting really specific is one way to do it. Another thing could be, as I mentioned before, our brain relies on similar structures and language networks when we are engaging in spoken language and written language. So oftentimes improving our reading and writing improves our spoken abilities and vice versa. So even if it's not the main goal in treatment, for example if the main outcome might be word retrieval, I really believe multimodal learning is important. If, after you've gone through what you want to do say writing it, having them repeat it, maybe copy it, even though that's not the main goal, and it's not slowing the therapy, if it's working for you and your client, then I really think, at the minimum, using written language to support spoken language has a good role. I also think the opposite can be true using spoken language to support written language. So I do think that it's important that we know we are addressing all of language, and that that language skills really do usually move up and down together in aphasia.

Janet: Well said, again. Liz, thank you so very much for joining me today in this fascinating look into friendship, literacy, reading and aphasia. And again, hearty congratulations to you on being named Tavistock, Distinguished Scholar. On behalf of Aphasia Access, I wish you well in your research and clinical efforts, and thank you for taking the time to speak with me today. At this point, I'd also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcast, including this fascinating discussion with Liz Madden.

Liz: Thanks so much, Janet, I feel like you could just chat with you all day. Thank you again for giving me a chance to highlight some of my work. Also I want to thank everyone with aphasia who has participated in my projects, all my students and collaborators, Aphasia Access and the Tavistock Trust for Aphasia. Thanks again.

Janet: For references and resources mentioned in today's podcast, please see our Show Notes. They are available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]. For Aphasia Access Conversations, I’m Janet Patterson, thanking you again for your ongoing support of Aphasia Access.

References

Antonucci, T. C., & Akiyama, H. (1987). Social networks in adult life and a preliminary examination of the convoy model. Journal of Gerontology, 42(5), 519–527. https://doi.org/10.1093/geronj/42.5.519

Archer, B.A., Azios, J.H., Douglas, N.F., Strong, K.A., Worrall, L.D. & Simmons-Mackie, N.F. (2024). “I Could Not Talk . . . She Did Everything . . . She’s Now My Sister”: People with Aphasia’s Perspectives on Friends Who Stuck Around. American Journal of Speech-Language Pathology, 33, 349–368. https://doi.org/10.1044/2023_AJSLP-23-00205

Azios, J.H., Strong, K.A., Archer, B, Douglas, N.F., Simmons-Mackie, N. & Worrall, L. (2021). Friendship matters: A research agenda for aphasia. Aphasiology, 36(3),317-336. https://10.1080/02687038.2021.1873908

Madden, E.B., Bislick, L., Wallace, S.E., Therrien, M.C.S. & Goff-Albritton, R. (2023). Aphasia and friendship: Stroke survivors’ self-reported changes over time. Journal of Communication Disorders, 103, 106330. https://doi.org/10.1016/j.jcomdis.2023.106330

Madden, E., Conway, T., Henry, M., Spencer, K., Yorkston, K., & Kendall, D. (2018). The relationship between non-orthographic language abilities and reading performance in chronic aphasia: An exploration of the primary systems hypothesis. Journal of Speech Language Hearing Research, 61, 3038-3054. https://doi.org/10.1044/2018_JSLHR-L-18-0058

Madden, E. B., Torrence, J., & Kendall, D. (2020). Cross-modal generalization of anomia treatment to reading in aphasia. Aphasiology, 35, 875-899. https://doi.org/10.1080/02687038.2020.1734529

Purdy, M., Coppens, P., Madden, E. B., Freed, D., Mozeiko, J., Patterson, J., & Wallace, S. (2018). Reading comprehension treatment in aphasia: A systematic review. Aphasiology, 33(6), 629–651. https://doi.org/10.1080/02687038.2018.1482405

Strong, K.A., Douglas, N.F., Johnson, R., Silverman, M., Azios, J.H. & Archer, B. (2023). Stakeholder-engaged research: What our friendship in aphasia team learned about processes and pitfalls. Topics in Language Disorders, 43(1), 43-56. https://10.1097/TLD.0000000000000302

Therrien, M., Madden, E. B., Bislick, L., & Wallace, S. (2021). Aphasia and Friendship: The Role and Perspectives of Speech-Language Pathologists. American Journal of Speech-Language Pathology, 30(5), 2228-2240.

Resources

Stroke Social Network Scale reference and materials: https://cityaccess.org/tests/ssns/   

Aphasia Access Conversations Episode #119 - Finding the person in front of aphasia: A conversation with Lauren Bislick

In this episode you will: 

• Learn about how the Aphasia-Friendly Reading Approach was developed.
• Hear about the importance of actively engaging care partners in therapy through this storytelling approach.
• Learn the importance of celebrating stories and how to host your own version of a Waffle Night.

Katie Strong: Welcome to the Aphasia Access Aphasia Conversations Podcast. I’m Katie Strong, a  member of the Aphasia Access Podcast Working Group. I'm also a faculty member at Central Michigan University where I lead the Strong Story Lab. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Harold Regier and Dr. Erin O’Bryan. We’ll be talking about the Aphasia-Friendly Reading Approach that Harold developed for his wife, Rosella, who had aphasia and how Dr. O’Bryan took this approach into the lab to refine it for clinicians to use in sessions.

Before we dive into the conversation, let me share a few details about our guests.

First a bit about Harold. Harold R. Regier, B.S. Ed., BDiv. Theol., is a retired minister with a career path in programs addressing social justice issues. In retirement, his spouse, Rosella, had a stroke resulting in aphasia. His passion shifted to becoming an aphasia care partner focused on helping to recover language and communication skills. He is the author of “A Decade of Aphasia Therapy,” subtitled “Aphasia-Friendly Reading: A Technique for Oral Communication,” published in 2021. 

Our second guest is Dr. Erin O’Bryan. Erin is an Assistant Professor in the Department of Communication Sciences and Disorders at Wichita State University, in Wichita, Kansas. Her major research, teaching, and clinical interests focus on helping people with aphasia communicate through scripts, stories, and phrases and teaching students and care partners how to support communication. Dr. O’Bryan directs the Wichita Adult Language Lab whose current projects focus on supported storytelling and Melodic Intonation Therapy.

Welcome Harold and Erin. I’m looking forward to our conversation today.

Erin O’Bryan: Thank you, Katie! I’ve been listening to Aphasia Access Podcasts for years, and so many of my heroes have been interviewed in this series. It is really an honor that you invited Harold and I to be on the podcast today!

Katie Strong: I am so excited for our listeners to hear about how the Aphasia-Friendly Reading Approach was developed and expanded. This work is near and dear to my heart – particularly in this unique way of developing and telling stories. I feel compelled to disclose to our listeners that I am grateful to have been involved in this work as it was refined for clinical environments. So, I am going to come right out and say, this is my bias. Harold, I’m a big fan of yours and the Aphasia Friendly Reading Approach and of you Erin for how you brought this approach into the lab and studied it so that clinicians can use this approach.

So, now let’s get started! Harold, can you share a bit with us about how the Aphasia-Friendly Reading Approach came to be?

Harold Reiger: Sure. Thank you so much, Dr. Strong, for the privilege of being here to share just a bit of our story. You know, Rosella and I would have celebrated our 65th wedding anniversary if she had stayed with us just a few weeks longer. We had a very long and very happy marriage. She used to kid me, “We've been together so long we know what the other person will say before he or she says it.” Well, actually, aphasia kind of shattered that theory. But maybe there was a little bit of that was true. Well, anyway, Rosella was a retired public-school teacher with part of her career also involving children's curriculum development. She led many workshops, was a storyteller, and was a frequent guest speaker. Communication and broad coalitions were a strong suit for her.

So, aphasia, loss of language was a huge loss for her. Perhaps that sets the stage for working so hard to restore some major storytelling. But I'm sure this is the same kind of feeling that every person who is a care partner with the person with aphasia has. How did we discover a technique for storytelling through oral reading? Really, I think I just stumbled into it. The cues came from Rosella. She could say many words. She had a strong voice, but she did not put words together in a way that made it possible for a listener to understand what she meant to communicate. So, I was highly motivated, wishing there was a way to help her tell her stories.

Looking back, I now can see three of what I call ‘indicators’ that led me to the technique that I eventually called Aphasia-Friendly Reading. They were painting, reading, and church liturgy. So let me explain. Indicator number one, completely on her own, Rosella began to paint. Just shy of two years after her stroke, Rosella began to paint. She painted for four years. She painted 250 paintings. The choice of her subjects were all hers. Objects, scenery, flowers, roadside sightings, trips and vacations, past memories. And yes, stories, family stories, stories that she didn't have words to tell, but she could tell them with a brush. She gave every picture a title or caption, signed it, and dated it. And somehow she found those one, two, or three words to intelligibly, that is accurately, identify the picture that she had just painted.

But after four years of painting those pictures, she put her paintbrush down, never to pick it up again. And yet I kept remembering that she was able to identify pictures accurately using those few words to explain what it was that she was telling with her pictures. But then indicator number two came, reading periodicals and books. She underlined periodicals with many circles, much underlining. For a long time, Rosella delved through as many as 40 or 50 books per month. She turned every page, but did she understand what she was reading? Frankly, I often wondered and doubted it.

One day, Rosella was reading orally beside me, and I pressed my iPhone video button. Listen to just a few seconds of that reading. And while you listen, think of two questions. Could you understand what she was reading? What was the story that she was trying to tell? And secondly, do you think that Rosella was understanding what she was reading? So listen to that clip.

Excerpt of Rosella reading from a book.

You heard Rosella reading the story of she and her sister, Anna Grace, requesting radio station KNEX out of McPherson, Kansas to surprise their mother by playing it for her birthday. It was a song that the girls knew that their mother loved. And you heard her read those words, “I love those dear hearts and gentle people.” And then as she continued reading the lyrics of that song, she exclaimed, “Oh, Harold”, which was her way of saying how excited she was to recall that particular story. Now, that explanation, of course, was not in the book.

Then there was a third indicator that I recognized, and that was liturgical reading. One day in church we were reading a call to worship displayed on the screen. We were reading responsibly with the leader reading the first line and the congregation reading the second line. I glanced to my side and was surprised to see Rosella reading with the congregation. Maybe it was only the first three or four words of the line, but she read these words accurately. A light went on in my mind. Might this be a hint of how to help Rosella participate in oral reading? Short sentences read with a co-reader who read every other line and written in an easy to follow format? And so I adapted various psalms into very short lines formatted for us to read responsively. I read the first line, she read the second. The result was amazing success. Let me just illustrate by us reading just a very short psalm for you.

This is Psalm 150 that Rosella and I will read together.

H: Praise the Lord!

R: Praise God in his sanctuary.

H: Praise God in his mighty firmament.

R: Praise Him for his mighty deeds.

H: Praise the Lord for his greatness.

R: Praise him with the trumpet.

H: Praise him with the lute and harp.

R: Praise him with the dance.

My thought then was, could we try to write other stories and read them in what I began to call Aphasia-Friendly Reading format and style? And so, I began in earnest to try to write other stories. Short sentences, familiar words, larger font. Each line considered a sentence, even if it was only one word. Label the first line H for Harold and the second indented line R for Rosella. As I started reading and continued to read every other line, this could set the tone, the rhythm, and the pattern for saying every word clearly. I thought it was time to try. And then I began to wonder, is there a setting that we could read stories to others? Could we create an audience in some way?

When COVID hit, of course, I could not see Rosella in person anymore, for an entire year we were separated. And the only contact we had was FaceTime telephone calls. And those were really a disaster because we found it very difficult to communicate with each other when Roselle was not able to understand me and I wasn't able to understand her, except when we read Aphasia-Friendly stories.

And so, I wrote many stories during that year. And we read those stories then as our connection during our FaceTime calls. And somehow we were able to survive COVID. But it was after COVID then that we were able to again get back together occasionally. And I would bring her back to my apartment. And there I would invite friends, usually a couple or two individuals to come over and I would serve waffles. I'm not a kitchen person, but I could make waffles. So, we'd have a simple meal, a simple supper that we could visit with each other and talk about anything that we would like. And Rosella almost always simply said, “I remember exactly”. Because as others told stories that she was familiar with, she could comment that way. Otherwise, her conversation skills were not there. So that was our first hour that we would spend together simply informally visiting with each other. And the second hour that we spent together, we would go to what I would call “my theater,” our living room with a 50-inch television. And there we could read Aphasia-Friendly stories. I would stream the story to the television set. I would have them formatted so that there would be an H for Harold, an R for Rosella, and we would read the story so that the folks who were listening and watching could see the story as well as hear the story. And if we made any mistakes, they could make the corrections in their own mind.

There was a way that she was able to, again, participate. It's worth telling. But there was one waffle evening when she turned to me, and said, “China”. I knew she had a story in mind, but her look said, “you tell it. I can't do it.” And so, I did. It was a story about a cracked tea cup And so I decided certainly next Waffle Night we need to let her help tell that story of the cracked tea cup. Here is that story.

Cracked Tea Cup.

H: This is as story of a cracked tea cup.

R: Harold and I were youth sponsors.

H: Rose was one of the youth.

R: Winifred was her mother.

H: She invited me to her home.

R: “Thank you,” she said.

H: “Thank you for being Rose’s sponsor.”

R: We visited.

H: Before leaving, she said

R: “Let me pray for you.”

H: It was a pray of blessing…

R: …for our work in Mississippi.

H: Then she added,

R: “Wait!”

H: “I have something for you.”

R: She got a tea cup.

H: Erland brought it to me from China.

R: It’s cracked.

H: Put it in your china cupboard.

R: You’ll never use it.

H: “But you’ll remember be when you see it.”

R: Sixty years are gone.

H: This tea cup is still in my china cupboard.

R: And I remember Winifred.

H: It reminds me

R: Of the grace,

H: Of the affirmation,

R: Of blessing,

H: Of the seminary president’s wife.

And so those Waffle Nights became the favorite parts of our week when we could spend time with friends and Rosella could be part of the conversation by reading stories together with me.

Katie Strong: So beautiful! This is really just a fabulous way of having such a natural thing, a shared meal, a celebration to share stories. And it sounds like everybody enjoyed Waffle Nights. So, thank you for sharing, Harold. Erin, I was wondering if come into the conversation a bit more and tell us how you got involved with Harold and the Aphasia-Friendly Reading Approach?

Erin O’Bryan: Thank you, Katie. Even though I've heard Harold's story so many times, I still get teary every time I hear him talk about their year of not being able to see each other during COVID and the Waffle Nights that were just so wonderful. So, I met Harold in 2019 when I first became an Assistant Professor after 10 years of working as an SLP in healthcare. And Wichita State already had a weekly aphasia group, and I couldn't wait to meet the members. So, I went to aphasia group and there I met all of the care partners in the observation room and Harold showed me a video of him and Rosella reading a story together. I had been watching Rosella in the aphasia group and I'd seen that most of her utterances were short one- to two-word phrases and that much of her communication was nonverbal. But then in the video, she was reading full sentences aloud, taking turns with Harold. And what really struck me was that she was so motivated and happy to read the story.

I was so impressed. Harold asked me, “Do you think that other people with aphasia could benefit from doing this?” So many thoughts were running through my mind as we were having this conversation. Earlier in 2019, I had visited Audrey Holland, who was one of my mentors when I was in grad school at University of Arizona. And we'd actually set up this meeting through an online Scrabble chat. She invited me to her home.

Katie Strong: How very ‘Audrey’.

Erin O’Bryan: Yes, it was lovely. And I got to visit her with all her kitty cats. So, I asked her advice because I was applying for an Assistant Professor position after 10 years of working in health care. And I remember that she was so excited about her speechpathology.com video series and the related book that she was working on with Roberta Elman that she liked to call the Social Imperative of the LPAA, which I believe is the subtitle of that book. And Katie, I think you were a part of both the video series and the book.

Katie Strong: I was, yes.

Erin O’Bryan:  Well, Audrey just loved that. She was so excited about that, and she told me to learn everything I could about the LPAA. And she said, “I must join Aphasia Access.” She said, “that's where all the important work is happening.” So that year I listened to loads of Aphasia Access podcasts, and I got very familiar with the Chapey and Colleagues LPAA Values chapter.

So then as I'm sitting there talking to Harold, I'm thinking about the LPAA value, everyone affected by aphasia is entitled to service. So, I mean, who is affected more than a spouse? So definitely I was thinking about having the care partner being involved seemed like a wonderful thing. And I was also thinking that Harold and Rosella's approach shared so many similarities with Script Training, which I have loved and have been using in healthcare care since grad school. And there also are similarities with ORLA and Multiple Oral Rereading. And all of these are evidence-based treatment approaches. So, I felt pretty confident that Aphasia-Friendly Reading could be a very valuable intervention. So, I said to Harold, “I'd like to try using your approach with other people with aphasia and their care partners in our clinic”. And Harold was happy for us to try it.

Katie Strong: I love that. I love that. And just for our listeners, we'll put some links and references in the show notes for some of the approaches like ORLA and Script Training that Erin has mentioned in addition to Harold's book and some other some other resources too.

Erin O’Bryan: Yes, thank you, Katie. Those are all wonderful resources for people to be looking at. So, my grad students and I started a pilot study with a woman with aphasia and her husband. And they were actually friends of Harold and Rosella's from their aphasia group. We use the pseudonyms Cora and Dave when we describe them in our papers. It became clear that we needed to make a few adaptations to Harold's approach for use in the clinic. For one thing, I wanted the person with aphasia to have the largest role in selecting the story topic and deciding what she wanted to say. For our first session, we asked Cora and Dave to bring ideas for a story that Cora wanted to tell. And we also suggested they consider bringing some related photos. In our first session, Cora, Dave, my grad student, Addison, and I all sat around the table and together we brainstormed about the story. Cora wanted it to be about a Caribbean cruise that she and Dave had gone on. She brought photos from that trip. Dave helped with supplying names and information about places that Cora wanted to talk about. Places from their shore excursions, such as having their picture taken with a donkey in St. Thomas and visiting the Bomba Shack on the island of Tortola. We got Cora's feedback on every line that was proposed, fine-tuning the story until Cora liked every line. And we also adjusted some of the lines to make them easier for her to say. So once Cora and Dave were happy with the story, we helped them practice during our sessions, one hour per week with my grad student, Addison and I at the clinic. And we gave a printout of the story and a practice log to record notes about their home practice.

In this first pilot project, Cora and Dave practiced their story for eight sessions until Cora said she was ready to plan their story sharing celebration. Then they shared their story with their friends in aphasia group. And the clinicians and the other people with aphasia in the room were just amazed. And other people in the aphasia group said, “I want to do that!” So, after two people with aphasia and their care partners did Aphasia-Friendly Reading projects, I wrote a manuscript reporting the pilot results. And Katie, I had seen online that you were an editor of Perspectives at the time. So, I emailed you my manuscript and asked if it was appropriate for Perspectives. And you emailed me back and said, “let's meet online and talk about it.” I was so delighted that you were interested in my project. You suggested that I consider exploring the value of the intervention by interviewing the participants. And I didn't know anything about qualitative research. But, Katie, you helped me write great interview questions for the care partners. And you helped me learn thematic analysis so we could find the themes in the care partner's quotes. And so, after learning from you, I have come to love the thematic analysis process. I really think it leads to deep listening.

What we learned from the interviews is that the care partners felt empowered by being included in the intervention and the care partners really valued the collaborative nature of the storytelling project and especially that the intervention was so different than the previous therapy experiences that they had had because it was person-centered, it was fun, and they got to share their story with other people in their lives. So, then the three of us, Harold, Katie, and I wrote our first article about Aphasia-Friendly Reading and it's published in Aphasiology and the title is, “I wasn't just sitting there”: Empowering care partners through the Aphasia-Friendly Reading Approach. And then in 2023, the three of us went to Boston and presented it at ASHA.

Katie Strong: Thanks for sharing that, Erin. You know, I think the experience of the care partners saying that therapy was fun important to note. And Harold has mentioned that Rosella thought it was fun, and the other participants thought it was fun. And I guess I just want to bring home that hard work can, can still be fun or therapy can be fun. And especially when it comes from the person with aphasia and their care partners. The topics are generated by the client and care partner. They're sharing things that are really important to them that have happened in their past. I love it.

Erin O’Bryan: And one of the care partners even said that they learned better when it was fun.

Katie Strong: I love it. Fantastic. Erin, I was wondering if you could share some tips for clinicians who might be listening that are thinking about how they might be able to incorporate this Aphasia-Friendly Reading Approach into their practice.

Erin O’Bryan: Thank you for asking, Katie. So, in the past year, you and I have been talking about how we want to make it as easy as possible for clinicians to use our storytelling approaches in regular clinical settings, outside of research. And we really want clinicians to realize that it takes almost no time to prep for a person-centered storytelling session. You just have to go into the session ready to actively listen to what the person with aphasia wants to say. I love the acronym PULSE that you and Barbara Shadden wrote about in your paper, The Power of Story and Identity Renegotiation. And then in our paper, we reviewed PULSE again. So just for our listeners, I'm going to go through it real quickly because I think these are great things for clinicians to keep in mind.

The P in pulse is for partnerships, partnering with the person with aphasia. And in the case of Aphasia-Friendly Reading, the clinician partnering with the care partner also.

The U in pulse is for uniqueness. So, the clinician should be prepared to help the person with aphasia tell their unique story.

The L is for listening. The clinician needs to learn how to really listen.

And S is for supporting the person with aphasia in telling their stories. For example, using communication ramps in Supported Conversation for Adults with Aphasia strategies to support communication.

And then finally, the E impulse is for explore. So as a clinician, be ready to go off-road with your client to explore the story that they want to share. And as a clinician, know that it's okay, even it's great for you to do that.

Katie Strong: I love that. I love that. Erin, I guess that leads us into sharing that we do have a paper that came out in 2024 called Person Centered Stories on the Main Stage in Intervention, which highlights examples from three different story projects, including Aphasia-Friendly Reading. So, we'll link that to the show notes as well.

Erin O’Bryan: Yes, and this year at ASHA 2024, Katie, you and I are going to be also giving a talk about this work called Elevating Person-Centered Stories to the Main Stage in Aphasia Intervention. And we are looking forward to presenting this work hopefully to an audience of clinicians.

Katie Strong: Yes, yes, we hope to see folks in Seattle for sure. Well, I want to bring back both Harold and Erin into this conversation. And I think one of the things that I've recognized through this collaboration that you and Harold and Rosella and later on I got to be a part of is that we really are all better together. And I was hoping each of you could take a moment to share how this work has changed your thinking or maybe some ideas about sharing with others about what you've learned from this collaboration.

Harold Regier: Well, for me, one of the things that I think I really learned from this is that we care partners need the therapist and the therapist needs us care partners. And there are more ways in which we can work together than perhaps sometimes we have done it when we have just been sitting there. And so, I really, I'm so pleased to be able to feel that that we care partners are more involved or can be more involved in the whole therapy process than what so often we have been. But I think that one of the things that the therapist needs to help us understand is when is it appropriate for us to be part of the process and when it is not appropriate for us to be part of the part process. It's not a matter of us being there all the time and sometimes being in the way. So, I think that kind of very frank candid conversation with us would help us understand that. And I certainly understood better that that the role of the care partner in terms of helping the person with aphasia be able to communicate better is very different from the role of the therapist.

I never tried to be the person who was the teacher, trying to let Rosella know how she should do better and how we might be able to improve our reading. We just did it and it came out the way it came out. But then when I see how Erin was working with other clients and the persons with aphasia and the family members together identified the stories that they were interested in putting together, and the therapist helped put that together into words that they then could repeat or share together and in a storyline, that that is the place where I think we can be so much more collaborative with the therapist in a process like that. So I just always was telling myself, “Don't be a therapist. Don't be a teacher. Don't try to say, well, you can do better than that. Just simply do what is natural.” And then I wish that the therapist would take the other role and really work hard to help the person with aphasia do better with their reading and their performance. We didn't do our reading for production. We did it for fun, as you were saying earlier. And then we did it because we wanted to share that fun and that experience with others. And that was so very, very satisfying for us. Those are some of the thoughts that have come to me in terms of the relationship between therapist and care partner.

Katie Strong: Thanks Harold. Yeah, Erin, any thoughts?

Erin O’Bryan: I've learned so much from this collaboration. From Harold, I learned what a difference it makes when a care partner puts so much time and thought into supporting their partner with aphasia's communication and her quality of life. Also I've seen how much Harold has done and I hope that me you know as a busy professor stopping and taking the time to tell him that I saw so much value in what he was doing at home with Rosella reading those videos together. I hope that this helped him realize that it was valuable to share. And I'm thrilled to say that Harold has been going around the state of Kansas giving talks about aphasia at colleges and senior living facilities. He's doing so much and I love to see that. And from collaborating with you, Katie, I've learned the importance of making the story sharing a really beautiful celebration honoring the person with aphasia and you know bringing special things like favorite food treats, beverages, flowers, and especially inviting the people that are important to the person with aphasia. We've now had five or six story sharing celebrations. It seems like everyone is more beautiful than the last. I've learned so much about that. And I've also learned that qualitative research helps me capture the meaningfulness of these projects and the meaningfulness as we're working with people with aphasia and that this research can be so fun and rewarding.

Katie Strong: I love that. I love that. As I was listening to you, Erin, respond to Harold, it just sounds like together we can validate one another. The work that you're doing, you were doing with Rosella, Harold is very validating and then Erin bringing it into the lab to test it out and it's all beautiful. It's, it really is. And I guess as I reflect on this thought about what I've learned is to reiterate, Erin, something you said, that listening to family members or care partners and the ideas that they have to engage their loved ones in communication activities are so powerful and taking that time even if you are busy to listen and think and validate and see how that connects to the existing evidence-based literature. I think is really powerful. But I also think that there's this collaboration and the combination of care partners and clinicians and researchers. And of course, the person with aphasia at the center of all of that, making a powerful team to develop innovative methods of storytelling is really one of my big takeaways from all of this.

Erin O’Bryan: Yes, that's wonderful.

Harold Regier: I would like to give kudos to the therapists who worked with Rosella over the many, many years. Ten years of aphasia therapy, four of which were one-on-one, six of which were part of a support therapy group. Those therapists were such relational people, such encouraging people, and also knew the techniques that work in therapy. So, I wanted to say that those years were very, very meaningful, very, very helpful, and helped us with the day-to-day kind of living with hope, with the expectations that things can continue to get better.

Katie Strong: Thank you, Harold. Yeah. Erin, any other thoughts as we wrap this up today?

Erin O’Bryan: Well, I just wanted to say that I would never recommend that all intervention involve the care partner because I understand that it's good for the person with aphasia to get one-on-one time with the clinician. But don't forget that that care partner is often with the person with aphasia almost 24/7 and we may only see them one or two hours a week. So, it's so important that we do more to really educate the care partner about how to acknowledge the competence of the person with aphasia and really how to support their communication. So that's why I really want us to do more with in involving the care partner and in intervention. So, I'll get off my soapbox. Thank you, Katie, for letting us share about this project that I love.

Katie Strong: I'm so delighted that we could have this time together today. Harold, thank you for your generosity and sharing your ideas and Rosella's stories with us and this beautiful work of Aphasia-Friendly Reading and Erin for your work in the lab and bringing it to the clinic.

On behalf of Aphasia Access, thank you for listening. For references and resources mentioned in today's show, please see our show notes. They’re available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]. For Aphasia Access Conversations, I’m Katie Strong. Thanks again for your ongoing support of Aphasia Access.

Contact information for Guests –

• Harold Regier [email protected] 
• Erin O’Bryan, PhD., CCC-SLP [email protected] 

Resources

Aphasia Institute’s Introduction to Supported Conversation for Adults with Aphasia (SCA™) eLearning. https://www.aphasia.ca/health-care-providers/education-training/online-options/

Chapey, R., Duchan, J. F., Elman, R. J., Garcia, L. J., Kagan, A., Lyon, J. G., & Simmons-Mackie, N. (2000).Life Participation Approach to Aphasia: A statement of values for the future. The ASHA Leader, 5(3). https://doi.org/10.1044/leader.FTR.05032000.4

Cherney, L. R. (2010). Oral reading for language in aphasia: Impact of aphasia severity oncross-modal outcomes in chronic nonfluent aphasia. Seminars in Speech and Language, 31, 42–51. https://doi.org/10.1055/s-0029-1244952

Cherney, L. Babbitt, E., Oldani, J., & Semik, P. (2005). Efficacy of repeated choral reading for individuals with chronic nonfluent aphasia. [Clinical Aphasiology Paper]  http://aphasiology.pitt.edu/1548/ 

Kaye, R., & Cherney, L. R. (2016). Script templates: A practical approach to script training in aphasia. Topics in Language Disorders, 36(2), 136–153. https://doi.org/10.1097/2FTLD.0000000000000086

O’Bryan, E. L., Regier, H. R., & Strong, K. A. (2023). “I wasn’t just sitting there”: Empowering care partners through the Aphasia-Friendly Reading approach. Aphasiology. https://doi.org/10.1080/02687038.2023.2272956

O’Bryan, E. L., & Strong, K. A. (2024). Person-centered stories on the main stage in intervention: Case examples from the My Story Project, Aphasia! This Is Our World, and Aphasia-Friendly Reading. Perspectives of the ASHA Special Interest Groups. https://pubs.asha.org/doi/10.1044/2024_PERSP-23-00272

Regier, H. (2021). A Decade of Aphasia Therapy: Aphasia-Friendly Reading: A Technique for Oral Communication. Independently published Available on Amazon

Strong, K. A. & Shadden, B. B. (2020). Stories at the Heart of Life Participation: Both the Telling and Listening Matter. Chapter 5. In A. L. Holland & R. J. Elman (Eds.) Neurogenic communication disorders and the Life Participation Approach: The social imperative in supporting individuals and families (pp. 105-130) Plural Publishing.

Strong, K. A & Shadden, B. B. (2020). The power of story in identity renegotiation: Clinical approaches to supporting persons living with aphasia. ASHA Perspectives, SIG 2, 5, 371-383. https://pubs.asha.org/doi/pdf/10.1044/2019_PERSP-19-00145

Youmans, G., Holland, A., Munoz, M. L., & Bourgeois, M. (2005). Script training and automaticity in two individuals with aphasia. Aphasiology, 19(3/4/5), 435–450. https://doi.org/10.1080/02687030444000877