Aphasia Access Conversations

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Ellen Bernstein-Ellis, Program Specialist and Director Emeritus for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA 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 Davetrina Seles Gadson. We'll discuss her work involving how brain lesion characteristics may intersect with aphasia recovery, race, and psychosocial factors, as well as issues involving health-related quality of life assessments.

Dr. Davetrina Seles Gadson is the first Black-American to graduate with a Ph.D. in Communication Sciences and Disorders from the University of Georgia. She is a neuroscientist and certified speech-language pathologist with expertise in adult neurological rehabilitation and patient-centered outcomes. She currently is Research Faculty, in the Department of Rehabilitation Medicine, at Georgetown University. Dr. Gadson's research focuses on the influence of health disparities in minority stroke survivors with aphasia and the effect of such disparities on brain functioning, aphasia severity, and health-related quality of life. Most rewardingly Dr. Gadson is the co-host of "Brain Friends", a podcast for neuro nerds and stroke survivors to talk about aphasia advocacy, language recovery, and community.

Listener Take-aways

In today's episode you will:

• Learn how health disparities may influence aphasia outcomes and why more research is needed

• Discover why "Brain Friends" is another podcast you'll want to add to your playlist.

• Gain practical tips on how to build confidence in intercultural interactions with your clients

• Hear how health-related quality of life (HRQL) measures can help inform your clinical practice

We'd like to recognize Kasey Trebilcock & Amanda Zalucki, students in the Strong Story Lab at CMU, for their assistance with this transcript.

Show notes edited for conciseness

Ellen Bernstein-Ellis (EBE)

EBE: I am so excited to have a fellow podcaster here today. Thank you for being here. And I just listened to the January Brain Friend's episode. It was great. So I hope our listeners will check it out too. I want to also give a shout out to your consumer stakeholder and co-podcaster, Angie Cauthorn, because she was a featured guest on episode 70, in June of 2021, as we recognized Aphasia Awareness Month, and you just spoke with her about aphasia types and aphasia conferences, and you gave a big shout out to CAC and you gave clinical aphasiology conference and you also gave a big shout out to the Aphasia Access Leadership Summit. So really important conferences, I think that stimulate a lot of discussion and values around patient centered care. And your Brain Friends podcast just has a great backstory. So why don't we just share about how that all started? Where's the backstory to that, Davetrina?

DAVETRINA SELES GADSON: Thank you so much for having me. This is such an exciting opportunity. So, Brain Friends started with myself and Angie. We were on the National Aphasia Association's Black Aphasia group call and I just loved her energy. She reached out to me after we finished that group call, and we just started talking. Our conversations were so informative, and it just lit this passion and excitement in me. I said, "Hey, can I record some of these, and maybe we do like a podcast?", and she was totally down for it. It's just been such an innovative and fun way to disseminate science and engage many stakeholders.

EBE: I want to thank Darlene Williamson, who's president of the National Aphasia Association for sending me a little more information. You told me about this group, and so I wanted to find out more. She provided this description by Michael Obel-Omia and his wife Carolyn, and I hope I said his name correctly, who provide leadership to this group. And they said that in this group, the Black American Aphasia Conversation group, "provides a place for Black people with aphasia to share their stories, provide support, meditation, and brainstorm ways to advocate and consider policies. We will discuss the unique challenges and gifts we share due to our experiences with disability and race." I found out that you can reach out to the National Aphasia Association (NAA) for more information and to get on the email list for a meeting notifications. And in fact, I put the registration link in our show notes today. So, sounds like that group has been a meaningful discussion forum for you, too.

SELES GADSON: It's been so fun. I share how for me, I've been in the field practicing for a little over 16 years now, and this was my first time being in a room with so many people that look like me. And for many of the survivors on the call, I was one of their first Black SLPs that they had ever met. Just even having that connection, and being able to speak to some of the challenges, and some of the things culturally that we both share has been my outlet, biweekly.

EBE: I'm going to make sure we have that link in our show notes. Also, the link to your podcast because I encourage people to listen to Brain Friends, I've really enjoyed it. When you and I were planning for this episode today, you talked about how being part of the National Aphasia Association's Black American Aphasia Group really helped to energize you and the research you were doing, and what a nice integration of life that was.

I will want to tell our listeners about one more wonderful thing, and that's the interview you were part of on the ASHA Voices podcast as well as the related article in the ASHA leader, where I learned more about your journey to doing this research. So, as you provided clinical services for a Black client as an outpatient clinician, and this is pre- doctoral research, you recognized that there was a significant gap in the literature around working with African Americans with aphasia. You saw the need to understand the impact of aphasia on identity and motivation in order to best help this particular client. And those are both really important concepts within the Life-Participation Approach to Aphasia (LPAA) framework as well. So, then you shared that you got some important advice from an important mentor. Do you want to share what happened next?

SELES GADSON: Definitely. So, one thing that's also unique about that time is that at that point in my career, I had worked in many of the clinical settings. I had done acute care, inpatient rehabilitation, skilled nursing facility, and even worked as a travel SLP traveling throughout the United States. And so, once I had got to that outpatient setting, it was different from any of the other settings because these individuals were home. And often times, they wanted to get back to work. I remember feeling a little discouraged because I wasn't finding research on a lot of functional treatment approaches or functional therapy. In addition, I wasn't finding research on black stroke survivors with aphasia. And so, I mentioned to one of my mentors at the time, Dr. Paul Rao. I said, "what's going on in the field? And I'm not seeing this, and I have this client, and I don't really know what to do." And he said to me, "Stop complaining kiddo, and go back and get your PhD." Admittedly, when he said it, it was kind of like, "okay fine, I'll go do it." I don't think I realized all what it would take. That's what really made me pursue the degree was this notion that I could help facilitate some of that change and bring some of the research that I needed to see.

EBE: That is so important. And that story really made me reflect on another story that has really impacted me from a dear colleague, because you experienced in your doctoral work some concerns about doing research on Black Americans because your interest was seen, as it said in I think the ASHA Voices interview or in the Leader, as "personally motivated." Your story mirrors one that a colleague and dear friend, Nidhi Mahindra, told me as well. During her doctoral research, she was told that while pursuing multicultural interests were worthy, that she may face barriers to getting funding to pursue that line of work. That might be problematic, right? She had to struggle with that. Despite that daunting message, she persisted, and then was funded by ASHA on a grant studying barriers influencing minority clients' access to speech pathology and audiology. Nidhi reminded me how our life experiences can often inform our work in important and valuable ways. Davetrina, you've channeled your experiences into these explicit observations and data that you shared with your doctoral committee. That was a really important part of moving forward. Do you want to share some of the points gathered for that doctoral committee to help support why this research is so important?

SELES GADSON: First, I want to thank Nidhi. Hopefully I'm pronouncing her name right, for her perseverance, because it was some of her work that helped me in my dissertation. Being able to cite her just really shows the importance that everybody plays in breaking barriers and pursuing the things that really speak to them. And one of the things that I'll clarify, it was two parts in pleading this case. The first part was that I changed the committee. I think that that was a supportive thing.

And then, the second part was that when I prepared all of the research on why I needed to do this work. Some of the research looked at what we knew already with stroke recovery in minoritized groups, which was that Black African Americans were twice as likely to have a recurrent stroke than any other ethnic group and what we were seeing in the aphasia literature for Black Americans, which was the narrative of Black Americans having longer hospital stays, more hospital costs, but poor functional outcomes. And so, it was these two key pieces that I had really gathered. When I went back to the new committee to share and plead my case on why I really wanted to do this research, they had that initial onset of knowing that this research definitely needs to be done. I think that that's what helped it go through.

EBE: Wow. I think those are really important reasons. That whole concept of allowing our life experiences to inform our work and to value that. As we start to talk about your research, and I'm really excited to get to share this amazing work you're doing, I thought it might be helpful to define some of the terms that are integral to this research Some of the definitions are a little tough to wrap your arms around because they're not consistent in the literature or are still waiting to develop. Let's start by discussing what you want the listeners to know about the definition for health-related quality of life, or, as we'll call it, HRQL.

SELES GADSON: HRQL is operationally defined that it's multi-dimensional. The way I define it a lot in my work is the perception of the individual's ability to lead a fulfilling life in the presence of a chronic disease or disability such as aphasia, but really their perception in five domains. The five domains that I look at in my work are physical, mental, emotional, social communication, and then role, the individual's ability to get back into the activities that they used to be able to do.

EBE: Okay, that's really helpful. I think we should also discuss or define patient-reported outcomes or PROs. Sometimes they are also referred to as PROM's, patient-reported outcome measurements. How do they relate to HRQLs?

SELES GADSON: Patient-reported outcomes is a health outcome directly reported by the patient without interpretation. Patient-reported outcomes often look at the status of the health condition. The biggest thing about patient-reported outcomes is that it's without the interpretation of the practitioner. So, whatever the patient says is what we're going to take as gold.

EBE: Why is it particularly important then to look at HRQOL for Black stroke survivors?

SELES GADSON: That's such a great question. And so I want to break it down in two parts. I think the first part is that given the lack of normative data for Black stroke survivors, when we're only looking at clinician-reported outcomes, that's where we get to this bias and the normative bias. I know that there's research out where there are some outcomes to where we're already seeing this five-point difference. And for some research, that five-point difference is considered clinically meaningful. I think that if we're not using these patient-reported reported outcomes, then we put ourselves in a position to contribute to the disparities that we're seeing in standardized assessments. So that's the first answer.

The second reason is that we know that nonclinical factors such as physician-race concordance drive up to 80% of what we're seeing in poor functional outcomes in minoritized groups. If we're not asking the person, then we're not able to really understand the things that they want to do, and we're already coming in with this majority type attitude which could influence one's participation in therapy.

The last thing that I think is most important, whether you're Black, white, purple, whatever, is that we have these insurance demands that sometimes may not allow us to get to all the things that we may see from an impairment base. By using the patient-reported outcomes, we are helping structure therapy in ways that matter most to the patient.

EBE: Well, that reminds me of this amazing quote that I was hoping I could work in today. I circled it in big yellow pen when I first read through your research. You said that it's really important because, due to the lower HRQL that we find in individuals with aphasia, it's "imperative that the development of a treatment plan incorporates what the patient prioritizes. And it's imperative that clinicians have a way to measure these subjective attributes to make a meaningful impact on care." That's what we want to do.

SELES GADSON: So important, because I think what we have to realize is that part of our role as the practitioners providing this skilled intervention, is really helping the individual get back to what they want to do. And I think that if we're not asking them what they want to do, then we're not really able to structure therapy in matters that mean the most to them, but also help them to start to recognize that as part of this identity with aphasia, that there's this new normal for them. Sometimes, individuals are going to rate themselves based off of what they used to be able to do. But if they know that one of their goals was to be able to talk on the phone, or to play bridge with their friends, and we worked on that in therapy, they're now able to look and see, before I scored my telephone confidence at a 50. Now I feel like I'm at a 90, and so sometimes that own self-recognition can support motivation, and can even support therapy, once insurance dollars run out.

EBE: I really appreciated doing this deeper dive into PROs as I read through some of your research. And one of the resources I came across was a really interesting table that talked about six categories of PROs. And I'll put a link in the show notes to a 2015 book by Cella, Hahn, Jensen and colleagues called "Patient-Reported Outcomes and Performance Measurement." (They list six different kinds of PROs in a helpful table.) But the main category that your work is utilizing is actually these HRQL measures. You've been stating why it's so important. HRQL PROs help to frame diagnostics and treatment because you're trying to prioritize what the patient wants and needs-- what they're expressing.

SELES GADSON: Right, exactly. I think that one of the things that it's really important for practitioners to understand, is that these things are mandated by what we see in our scope of practice. When I say mandated, I mean we are called to reduce the cost of care by designing and implementing treatment that focuses on helping the individual. If we're not asking the individual what they want to get back to, then I think that we're putting ourself at a position that makes it more challenging to serve in that way.

EBE: One of the things we like to do on this podcast is to provide resources that will help clinicians think differently or do something differently tomorrow as they meet face-to-face with their clients. And one of the things I thought we'd put in our show notes is a link to the PROMIS website, because that was something you've used in your research. Do you want to explain a little bit about that website?

SELES GADSON: One of the things that I like about the PROMIS website is that it has a list of health outcomes available to use for a range of individuals-- for pediatrics, for adults. I like that it's free, most of them, and I think that it's a good place to start. Some of the outcomes on that website are also even appropriate for in acute care, meaning that they may not take a long time to administer. And so, I think that that's a good place to start.

EBE: Well, thank you. And I want to move right into this wonderful paper where you are co-author with Wesley, van der Stelt, Lacey, DeMarco, Snider, & Turkeltaub, that looked at how brain lesion location interacts with HRQL. Can you share a couple key takeaways from that paper? I hope you'll highlight the one related to depression and HRQL. We're having a lot of research right now around the emotional impact of aphasia and how that will impact recovery outcomes as well. So, tell us a little bit more about that work.

SELES GADSON: We looked at the domains of health-related quality of life associated with specific deficits and lesion locations in chronic aphasia. We examined the relationship between HRQL using the Stroke and Aphasia Quality of Life Scale by Hilari and her colleagues, as well as a depression scale, and different impairment-based measures---our battery that we used here. What we found was that language production and depression predicted communication HRQL, meaning that those individuals that reported lower communication HRQL also had a significant depression associated with it. We did lesion symptom mapping in this study. Basically, what we were looking at is to see if HRQL mapped on to discrete areas of the brain. We found that individuals that reported lower psychosocial HRQL had inferior frontal and anterior insula lesions; where individuals who reported lower physical HRQL had lesions in the basal ganglia. This confirmed for us that even though HRQL is this subjective perception, we were seeing it map on to these very specific areas in the brain that also predicted some of the impairment measures that we know of.

EBE: That can get us to start thinking about if we have patients with these types of lesions, maybe to be more on the alert for depression. I think that's one point you made. But you also mentioned another important takeaway in the study about the impact of depression on HRQL related to the training of SLPs. This all ties together. What are your thoughts there?

SELES GADSON: I think that when we are recognizing that individuals with aphasia are experiencing a new normal, and I think that the research has been very clear on understanding that depression does relate to and contribute to one's communication. I think that there is an opportunity for speech-language pathologists to have more counseling classes. And again, make sure that we're tapping into what the patient wants to do in order to hopefully help mitigate some of those feelings of depression.

EBE: I really endorse building those counseling skills in our graduate programs for our students, so they go out feeling more confident and more skilled and knowing that that is going to be an ongoing journey as a speech-language pathologist to build that skill set.

SELES GADSON: And shameless plug, I think our episode six of Brain Friends is a mental health episode. I have one of my good girlfriend colleagues there who is a counseling psychologist. She shares with us helping skills for the practitioner, and we share on that episode10 skills that you can do as a clinician to support the person with aphasia.

EBE: Thank you for sharing that. That's really important. And again, the link to Brain Friends will be in our show notes. Let's take a moment and talk about how you connect this finding about depression to the role of social communication, because you said it was those scores that were down in your measure.

SELES GADSON: With that particular study or overall?

EBE: However you'd like to discuss it. I'm opening that door to you.

SELES GADSON: One of the things that we were seeing is that individuals were reporting the depression within this Communication HRQL domain. So even though we didn't dive into it too deep in this study, it was more of the correlation and recognizing that individuals that were reporting this higher level of depression, also have this higher level, or this lower report of communication HRQL, making those links specifically. I do have something that I'm working on right now, that will completely answer that question a little bit more solidly. I don't want to speak too much on this, so stay tuned.

EBE: Absolutely staying tuned, there's no question. You also had another article that I found intriguing-- An article with your coauthors, Wallace, Young, Vail, and Finn, a 2021 article that examined the relationship between HRQL, perceived social support, and social network size in Black Americans with aphasia. And that paper highlights that there's been little research exploring HRQL in Black Americans. Of the five factors that comprise HRQL, why did you decide to focus on social functioning? And specifically social support and social network in this study?

SELES GADSON: Well, that really came from the literature. One of the things that the literature said is that we knew that social HRQL contributed in some way, but we weren't sure what way. And we weren't sure what pieces of social functioning contributed. My apologies to the researcher who said it, but it set me up perfect for my dissertation work to say, "this is why I'm looking at social functioning in these two specific pieces," because we didn't know. Was it social participation? Was it social network? Was it social support? That was one of the reasons why I wanted to pull out those two specific pieces. The other thing that was really important about this work was that it was the first study that really looked at what HRQL looked like in Black stroke survivors. We didn't know any of that. And so for me, it was really important to compare Black stroke survivors to normal aging Black individuals because I feel that for us to really get baseline understanding of what some of these factors are and how individuals respond in recovery, we have to compare them to their norm, or to other members in their community that look like them before comparing between Black and white or any other ethnic groups. This study is where we found that in terms of HRQL, the main difference between stroke survivors with and without aphasia and in our normal aging individuals, was that communication was the impairment. And then, with the social network and social support, we weren't seeing a difference between this homogenous group of Black people in those areas.

EBE: That takes me to my next question, your research noted that the Black survivors with and without aphasia, have smaller social networks compared to white stroke survivors. That's the data that we have based on that social network data. Even though you weren't trying to compare in this study, per se, you still made sense of that finding-- trying to make sure that we don't make assumptions, and instead look at different factors that could be at play. How did you make sense of that finding, the smaller network?

SELES GADSON: It was two things that allowed us to make sense of that finding. One was recognizing that in both groups, the stroke survivors with aphasia and our normal aging individuals, that because they were age matched, it could have been a factor of age--meaning that the individuals receiving the support quality and then their network, everyone was kind of in the same age group, and so, it was more of a factor of time of life versus actual culture.

But then a lot of that came through in some of the anecdotal reports, and things that we even circled on the scale that we used--we use the Lubben Social Network Scale. With some of those questions, one might be how many people do you feel comfortable sharing personal details with? And often times, we got this report of "just my husband", or "only God". And so, we were seeing that some of this really related to the traditional and cultural values in Black Americans, where you're not going to share a lot of stuff with a lot of people. You have your set group, your small network. And that's okay. That doesn't mean that you're isolated.

EBE: I think another point you make, and maybe even thinking back to the ASHA Voices Podcast, why it's particularly important to target social communication. That is yet another life participation core concept. Do you want to speak to that for a moment?

SELES GADSON: I think the thing that we have to realize with social communication is that individuals, especially within the black community, they are social, they want to talk, they want to get back to doing and interacting with their community. And so, one of the things that that looks like is maybe being able to participate again in Bible study or being able to stand up and read a scripture. And the only way that you know that, is by asking them that on a patient-reported outcome.

I think that that's where that social communication piece is coming in. One of the things that I'm seeing with the Black aphasia group is that moment, that hour, where everyone is together, it's amazing. It's them using social communication. You spoke about how I said that that energized my research, and that was why--because I was on this call, and they were speaking about these things, that sometimes I feel like I have to explain to the powers that be why social communication or the LPAA approach is important. But here I was talking with all of these survivors, and they were telling me, I want to be able to communicate, I want to be able to do these things. It just really confirmed for me that this type of research, we were on the right path.

EBE: Right. And this is my chance for a "shameless plug" because of my life work, and that is just the power of groups. The power of groups is amazing.

SELES GADSON: You know, your life work and...

EBE: Well, we don't want to go there, this episode is about you.

SELES GADSON: Okay. I'm telling you; I'll get into just how influential your work has been, even when I was working as a practitioner and doing group therapy, it was your work and your research that I was going to.

EBE: Well, I had the honor of getting to work with Dr. Roberta Elman, and starting the Aphasia Center of California and doing that initial research, that has been such a gift to me, so, but thank you, back to your work now. That's a great transition, because I'm going to bring us to your 2022 study, looking at how aphasia severity is modulated by race and lesion size in chronic survivors. That was an amazing study. I'm going to read another quote here from that study. And that is, "understanding the origin of disparities in aphasia outcomes is critical to any efforts to promote health equity among stroke survivors with aphasia." You said this work led you to an "Aha!" moment. And I'd love for you to share more about that moment, and about this study.

SELES GADSON: Yes, this was one of my babies, I would say it was definitely a labor of love. And it's been well received. One of the things that led us to this study was that we were already aware of what the research was saying, in regards to the narrative of Black stroke survivors having these lower scores, they were having poor functional outcomes, longer hospital stays. I really wanted to understand what components neurologically, were playing into that. The research has shown that Black Americans often may have a larger stroke due to a myriad of factors-- delayed hospital arrival, not being able to receive TPA. But I wanted to know what factors neurologically were contributing to what we were seeing, not only in this baseline difference that we were seeing, but what was the bigger picture essentially.

What we found was that when we looked at race and lesion size, when we did an interaction of race and lesion size, that Black and white survivors with small lesions performed similarly. But larger strokes resulted in more severe aphasia for Black people, than white people. And that was something that we didn't quite understand, because if you think about it, the larger the lesion, the poorer your aphasia should be.

But in this case, the larger the lesion, the white stroke survivors were performing better and so we offered two reasons for that. One was the potential assessment bias-- that maybe with the larger stroke, there was this code-switching element that the Black stroke survivors just weren't able to do. And we were seeing that in the larger strokes, and it wasn't being picked up in the smaller strokes. Then the other was the disparity that I had mentioned earlier, which is that access to rehabilitation. It might have been more evident-- we were seeing some of those disparities in the larger strokes. We know that individuals that come from higher earning SES groups have greater access to rehabilitation services like speech and language. That was our other reason, that we were wondering if that's why we were seeing that outcome.

EBE: This reminds me some of the research that Dr. Charles Ellis has been doing. I attended his keynote speech at the IARC conference in 2022 that talked about understanding what is happening upstream, because it's going to impact what's happening downstream. In terms of health disparities, it's going to have an impact. I think your research supports that. We need to learn more about it and do the research you're doing.

As you reflect on your findings across these amazing studies, this research that you've been doing, can you offer to our listeners some tips on how to have more confidence with intercultural contact?

SELES GADSON: That's a great question. I think the first thing that that you have to do is put yourself in places where you are connecting with people that don't look like you.

EBE: I agree. And that can be hard and challenging to do.

SELES GADSON: It can be, but one of the things that I say is that it goes back to some of the things that Dr. Ellis has talked about, which is being intentional. That might mean going to a different side of the neighborhood to support a Black owned business, and being within that space, to feel how it feels to be around different cultures.

The other thing that I think is really important, and it comes out of literature that looks at reducing racial bias in health care, which is to avoid stereotype suppression. So oftentimes, people may be thinking something and they don't want to share it, or they try to suppress it. And the reason why that's negative is because stereotype is a cognitive organization strategy that we use. And where it becomes negative is that if you're having these stereotype ideas, or you're just not sure, if you're not able to express them within a space that you feel comfortable with, then you suppress them. And then it kind of comes out in therapy. And so, I think that those are two huge things.

And then the last thing that I would say is that it's really important to build partnerships. And so, building partnerships, either with local churches, within the university area, or just seeing how you can serve in order to help create some of that confidence. But you have to put yourself out there and not wait until therapy day.

EBE: Wow, thank you for those tips. And one of them reminded me of something, a tip that a local educator suggested that, even if you don't feel like you're in an environment where your everyday social context might put you with people who look different from you, that you can still listen to other voices by listening to podcasts, sign up for podcasts, sign up for Twitter feeds of people with different voices, so you can start being present to that conversation. So that was something that I have found useful and really good advice as well.

SELES GADSON: So true. The other thing that I did, even someone who identifies as a Black American when I was doing my dissertation work, and previously before some other things in my career, I noticed that perspective taking was a huge piece--putting myself or imagining myself in the individual's shoes.

And so, for me, that meant that I went to Black museums and exposed myself to different cultural experiences. I wasn't going into some of these spaces, whether it was collecting data or even working with individuals from other earning communities, with some type of privilege. So even in that sense, I wanted to make sure that I checked my privilege as well by doing that perspective taking.

EBE: Thank you,. And this discussion could keep going, but I know our time is getting tight here. This whole effort that you put in your research of looking at HRQL measures reminds me of some of the work that I've really admired by Hilari and you had a wonderful story you could share about her, your interaction and your use of her work. Would you like to share that quickly?

SELES GADSON: Oh, she's so awesome. I was sharing how when I first was diving into this literature, her work was one of the pieces that I found, the Stroke and Aphasia Quality of Life Scale. I reached out to her and she shared this scale. And a couple of years later, I attended the International Aphasia Rehabilitation Conference in London. And she sat down with me. I asked her if she had any time, if we could just talk, and she was so welcoming. We sat down, and she might not even remember this, but even in that moment of us being able to talk about these things that we were both so passionate about, she just really spoke to me and encouraged me. And it's so funny, because now as I publish and do different things, my mom always says, "you gonna be just like Dr. Hilari."

EBE: Let's just do a shout out for mentorship, for people who take the time, and feel committed and passionate. Again, we're using that word again today, passionate, to support the new voices that are coming into the field. So that's the gift of mentorship. And in this whole discussion, you and I also talked about how important it is to be inclusive, and we talked about how HRQL measures sometimes are harder to use with people with severe aphasia and how they can get excluded from research. It's hard enough to get people with aphasia into the research, right? There's work by Shiggins and her colleagues looking at how often people with aphasia are excluded. But you made a good point about ways that we can include people with more severe aphasia. Do you want to mention that?

SELES GADSON: I think one of the things that we have at our fingertips, and we know just from our training, is to use different visual cues to support those individuals that might have more severe aphasia. One of the things that we highlighted in the 2020 paper looking at the psychometric properties of quality of these patient reported outcomes, was that there are certain assessments that are perfect for individuals with severe aphasia, assessments like the Assessment for Living with Aphasia (ALA), because it has the pictures available and it has simple language. Just recognizing that even by using some of these compensation tools, whether it's pictures or modifying the language, we can still get the individual's perspective of what they want in therapy just by using some of these modifications.

EBE: This reminds me, I can put one more link and resource into the show notes, because the Center for Research Excellence in Aphasia offers this wonderful speaker series. And there was just an excellent recent session by Dr. Shiggins on including people with aphasia in research. So, I'll put that link in. I want everybody to listen to that presentation.

And finally, as our closing question for today, Davetrina, if you had to pick only one thing we need to achieve urgently as a community of providers, of professionals, what would that one thing be?

SELES GADSON: I think we have to start using patient-reported outcomes. I think that if you were doing a clinician-reported outcome to assess the impairment, paired with that has to be some level of patient-reported outcome that will give you insight into what the patient wants to do. It's no longer optional. I think that we have to make it a paired thing with our clinician-reported outcome, is getting the perspective of the patient.

EBE: I so agree with you, thank you. Thank you for this wonderful interview today. I really, really appreciate it.

SELES GADSON: Thank you.

EBE: And I want to thank our listeners for listening today. For references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. And there, you can also become a member of this 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 Ellen Bernstein Ellis and thank you again for your ongoing support of aphasia access.

References and Resources

Brain Friends Podcast:

https://www.aphasia.org/stories/brain-friends-a-podcast-for-people-with-aphasia/

https://www.facebook.com/groups/1563389920801117

https://open.spotify.com/show/5xgkrhUhEIzJgxpRXzNpBH

Centers for Disease Control and Prevention (CDC) HRQL website: https://www.cdc.gov/hrqol/concept.htm

National Aphasia Association Black American Conversation group registration:

The Black American Aphasia Conversation Group meets through Zoom every other Monday at 4:00pm EST (1:00pm PST) . If you are interested in joining this group, please complete the form https://docs.google.com/forms/d/e/1FAIpQLSfJN9VWjrujhebT8Z48bqDZePOHYotipFC34S8T0X8_o8rG-g/viewform

Patient Reported Outcome Measurement System (PROMIS) https://www.promishealth.org/57461-2/

Cella, D., Hahn, E. A., Jensen, S. E., Butt, Z., Nowinski, C. J., Rothrock, N., & Lohr, K. N. (2015). Patient-reported outcomes in performance measurement. . Research Triangle Park (NC): RTI Press; 2015 Sep. Publication No.: RTI-BK-0014-1509ISBN-13: 978-1-934831-14-4 https://www.ncbi.nlm.nih.gov/books/NBK424378/

Gadson, D. S., Wallace, G., Young, H. N., Vail, C., & Finn, P. (2022). The relationship between health-related quality of life, perceived social support, and social network size in African Americans with aphasia: a cross-sectional study. Topics in Stroke Rehabilitation, 29(3), 230-239.

Gadson, D. S. (2020). Health-related quality of life, social support, and social networks in African-American stroke survivors with and without aphasia. Journal of Stroke and Cerebrovascular Diseases, 29(5), 104728.

Gadson, D. S. (2020). Health-related quality of life, social support, and social networks in African-American stroke survivors with and without aphasia. Journal of Stroke and Cerebrovascular Diseases, 29(5), 104728.

Gadson, D. S., Wesley, D. B., van der Stelt, C. M., Lacey, E., DeMarco, A. T., Snider, S. F., & Turkeltaub, P. E. (2022). Aphasia severity is modulated by race and lesion size in chronic survivors: A retrospective study. Journal of Communication Disorders, 100, 106270

Gray, J. D. (2022). Transcript: ASHA Voices: Confronting Health Care Disparities. Leader Live.

https://leader.pubs.asha.org/do/10.1044/2021-0902-transcript-disparities-panel-2022

Law, B. M. (2021). SLP Pioneers Research on Aphasia Rehab for African Americans. Leader Live https://leader.pubs.asha.org/do/10.1044/leader.FTR4.26092021.58

Lubben, J., Gironda, M., & Lee, A. (2002). Refinements to the Lubben social network scale: The LSNS-R. The Behavioral Measurement Letter, 7(2), 2-11.

Shiggins, C., Ryan, B., O'Halloran, R., Power, E., Bernhardt, J., Lindley, R. I., ... & Rose, M. L. (2022). Towards the consistent inclusion of people with aphasia in stroke research irrespective of discipline. Archives of Physical Medicine and Rehabilitation, 103(11), 2256-2263.

Shiggins, C. (2023) The road less travelled: Charting a path towards the consistent inclusion of people with aphasia in stroke research. Aphasia CRE Seminar Series #36 (Video) https://www.youtube.com/watch?v=sqVfn4XMHho

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong and I'm a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Debra Meyerson and Steve Zuckerman. We'll be talking about their bike ride across the country, Stroke Across America, as well as the importance of identity and storytelling in a person's journey with aphasia.

Before we get into the conversation, let me tell you a bit about our guests.

Debra Meyerson was, until her stroke in 2010, a tenured professor of organizational behavior at Stanford University's School of Education. Debra's most significant contribution from that period was Tempered Radicals: How Everyday Leaders Inspire Change at Work (HBS Press, 2001). More recently, she authored Identity Theft: Rediscovering Ourselves After Stroke (Andrews McMeel Publishing, 2019) and is co-founder and co-chair, with her husband Steve Zuckerman, of Stroke Onward, a nonprofit working to ensure stroke survivors and their supporters have the resources needed to rebuild identities and rewarding lives.

Steve Zuckerman is, along with Debra, co-founder and co-chair of Stroke Onward; he has been Debra's care partner since her stroke in 2010. He has held leadership roles at Self-Help, a nationally recognized economic justice nonprofit, since 2006 and still serves part time as a Senior Advisor. Before that, he was a managing director at a private equity firm.

In the summer of 2022, Debra and Steve led Stroke Across America – a 100-day cross country bike ride, from Oregon to Boston, to raise awareness for stroke, aphasia, and the importance of the emotional journey in recovery.

In this episode you will:

• be inspired learning about the bike ride, Stroke Across America, and its effort to raise awareness about the emotional journal of living with stroke and aphasia.
• learn about the power of story in reconstructing identity in people living with aphasia.
• become aware of Stroke Onward's mission to support the emotional journey of rebuilding identities and rewarding lives.

Katie: Welcome Debra and Steve. I'm so happy that you are here with me today.

Debra: Thank you so much, Katie.

Steve: It's great to be here.

Katie: Well, I'm just so excited for our listeners to be able to hear about what you've got going on, and I'd love to start with what you were up to last summer. You did an amazing bike ride across the U.S. called Stroke Across America. Congratulations! I mean it was a big deal! Can you tell us about it?

Debra: Sure. Stroke Across America was a bike ride across the US and Canada to raise awareness about stroke, brain injury and aphasia. We wanted to spotlight the emotional journey after stroke. How do we rebuild our identities and live meaningful lives? We rode 4,500 miles over 100 days, traveling from Oregon to Boston. There was a core team of six riders and others who joined us for portions of the ride. We became a family. I didn't expect that.

Katie: That's fantastic. Tell me about who rode with you and became family.

Steve: As Deb said, we had six core riders most of the way across the country. In addition to the two of us, a woman named Whitney Hardy, who's actually a close family friend. She's a young woman in her thirties who unfortunately suffered a traumatic brain injury about four years after she graduated from college and suffers no ongoing physical disabilities but has some cognitive issues and memory issues. She rode with us from the beginning to the end. Another stroke survivor was Michael Obel-Omia, who I know is an active participant in Aphasia Access. Michael is a stroke survivor who also lives with aphasia. He joined us about 15 days late because his son was graduating from college, so he joined us in Missoula, Montana. We had two wonderful summer interns, Emily and Alex. We met Emily through her grandfather, who was a stroke survivor and hoped to ride with us but didn't end up riding with us. Emily and Alex are both students at Washington University, St. Louis. They traded off, one rode and one worked, every other day. We can't say enough about the wonderful, not just competent and great work they did, but the energy they brought. They really helped make it special. I guess our seventh team member was our then roughly one-and-a-half-year-old golden doodle named Rusty who was along for the ride. Sometimes she rode in a trailer behind our bike and sometimes in one of the support vehicles. We had a group called Bike Eternity, a gentleman named Arlen Hall, who really arranged all the on-road logistics and the route. He and his team were just fabulous in terms of just making everything work. That was our family.

Katie: It's quite a crew. Fantastic. I was wondering if you could tell us about a favorite experience from the ride.

Debra: We hosted sixteen community events across the country. They brought together survivors, families, friends, stroke care professionals, and more. It was really inspiring to be with all these people. Building community and collaborating with others is the only path to real change. And you were at the Ann Arbor event?

Katie: Absolutely. Yeah. My friend Becca and I came down to the Ann Arbor event. I think it was Dexter or something.

Debra: Yeah

Katie: Boy, did we show you how we can have rain in Michigan!

Debra: I know. Oh, yeah.

Katie: Oh, my goodness. Yeah, it was great. Even though we had rain, there was so much great energy around the event. I can feel what you're talking about.

Steve: I think the events were kind of really the most powerful experience. But Deb, you were going to talk about one particular ride you loved.

Debra: I loved riding past Cameron Pass in Colorado for 30 miles up and 40 miles down.

Katie: Wow!

Steve: Yeah, so just to add a little bit to that, because I think that one day of riding really, I mean, every day was fantastic. We just loved the riding. But this one stood out for all of us. It was from a town called Walden in Colorado, a bit east of Fort Collins to a campground called Stove Prairie Landing. The pass we rode over was about 10,276 feet, so we were up there. And as Deb said, we rode up for 30 Miles about 2000 feet, but then got to come down 4000 feet. The whole ride was in a canyon with dramatic mountains and a river that we happened to catch at the right time of the year because the snow was melting. So, it was just a rushing river where we got the sound, the sights, and sometimes the spray of rapids as we're cruising downhill. And then there was just a perfect riverside campground at the end. It was just sort of a magical day.

Katie: Yeah. As you were describing it, I wanted to use the word magical! So, I agree. Yeah. Fantastic. I'm sure it wasn't all easy street. I was wondering if you could tell us one of the hardest things about planning such a big activity. I mean, this was a big event. You had several events along the way, but you know, tell us a little bit about the planning.

Debra: Organizing this event was so hard, but it was so important and so impactful. We had sixteen events: three events before we started riding in Palo Alto, Bend, and Portland, eleven along the way, and two in Boston after we finished. We had so much to do after the rides and after dinner, such as PR, social media, Stroke Onward, events, and a documentary film. There was so much to do! We are really tired.

Steve: Yeah, I think the biking certainly was a lot, but we weren't trying to ride fast. You know, one thing I say about biking is, if you want to ride long distances, you just have to ride long distances. You get used to it. So, that didn't really feel like a strain for us. And the organizing of the route, particularly with the help of Arlen, kind of got done ahead of time. It was a lot of work, but he's a pro and we put it together. But it was really, I guess we're "Type As" who can't get out of our own way. We built so much into the trip that it really was those evenings and our theoretical "rest days," which were nonriding days. We renamed them "stress days." We felt like we had to get everything done. So, you know, that was the hardest part of the trip. It was just how much we packed in. We jokingly say, but it may not be a joke, "that someday we want to ride across the country where we have absolutely nothing to do but ride across the country." That way, we can enjoy the evenings and the rest days, do a little more touristing, and spend time meeting people along the way.

Katie: Yeah, it was very focused. You were very intentional about gaining awareness and supporting community. And I'm sure that it sounds like there was lots to do beyond just pedaling. You mentioned earlier about a campground, but I'm curious, where did you stay along the way?

Steve: Our main support vehicle was an RV, pulling a trailer with a lot of gear. We organized mostly around staying in campgrounds. Partly to keep the cost down and partly because we didn't want to have to stay rooted to where the hotels and motels were. And so, Deb and I got the privilege of sleeping in the RV. It was a small RV, but very comfortable. And the rest of the group was camping, so we had tents and cots, and all you would need for relatively comfortable camping. About one or two nights a week, we would end up staying in a motel, partly just to give the folks who are camping a little bit of a break. We actually came to enjoy the RV so much; we almost preferred it to the hotels. Then, one of the real highlights of the trip was we were able to see a lot of friends going across the country. Particularly in the cities where we held events. We almost, with maybe one exception, always had a rest day connected to the event. Probably at about half of those we ended up staying with friends. That was really special to be able to involve more people in our lives in the journey.

Katie: Yeah, I was thinking when you were in Ann Arbor. Deb, you had a number of colleagues and friends that came to the Dexter event.

Debra: Yes, in Detroit, two days later, we met with my middle school buddies, Debbie and Debbie and Debbie.

Katie: I love that, fantastic! That's great! Well, riding across the country is a huge endeavor. What made you decide to do it?

Debra: Steve.

Steve: Deb would say, "Steve made me decide to do it." Well, actually, it is true. I had a close friend from college who rode across the country right after we graduated from college. From that day, I always said, "that's something I want to do". As I got older and older and hadn't done it, it was kind of rising to the top of the proverbial bucket list. But cycling really has been a huge part of our recovery from Deb's stroke. It has been the best way that we can continue to do a lot of the things we love - exercise, adventuring, seeing new places, and spending time with friends. We had never ridden a tandem before Deb's stroke, we rode individual bikes. It was a bit of a challenge for Deb to give up control, understandably. But when we saw the opportunity to do it with a purpose, that's what kind of got us really excited. We were just starting to build Stroke Onward, we wanted to build awareness for the importance of the emotional journey, and events create good opportunities to attract attention. So, what better thing than to do something you've always wanted to do and do it with a purpose? That's kind of how we got going.

Katie: Well, it is inspirational, and I know a big focus of the trip was to raise awareness about stroke and aphasia. Debra, for people who might not know, could you share a little bit about your life story.

Debra: Of course. My life story started earlier. In 2010, I was a professor at Stanford. I studied, taught, and wrote about feminism, diversity, and identity. Then, I had a severe stroke. For three years, I did therapy almost full time. I had to get my old life back, but I couldn't. My disabilities, especially aphasia, forced me to leave my job at Stanford. Giving up tenure was like a second punch in the gut. It was a huge trauma on top of my stroke trauma that started my identity crisis. Who am I now?

Katie: So, Debra, I think that's what sparked you writing a book called Identity Theft. Can you tell us a little more about that?

Debra: I had written two books before my stroke. I decided to write another book after my stroke, Identity Theft. Writing Identity Theft became my learning journey. It has helped me rebuild my identity. It took me five years, and I learned to accept lots of help. No one told me rebuilding identity is so central to recovery. I learned firsthand that it's so important. While researching Identity Theft, I learned that other survivors think so too. They had no advice and support for this.

Steve: Maybe I'll add. Deb mentioned doing research for Identity Theft. From the very beginning when Deb decided to write a book, she didn't just want to write about her story. She was an academic, she wanted to bring in other people's points of view. And so, Deb interviewed twenty-five other survivors and probably another thirty-five people who were care partners, friends, families, and professional caregivers. Kind of the idea being that she wanted to be able to write about a diversity of people and stroke experiences because that would make the book more relatable and more accessible to more people. And that really kind of gets at one of the things that really struck me about Deb writing Identity Theft. In many ways, the writing of the book really reflected her personal journey. That at the beginning, she was kind of writing it to prove she could, she didn't want to let go of that identity as an academic. But very quickly, she realized that the process of writing it, as Deb said, was kind of her journey. She was able to turn her knowledge of identity and the lens on herself to really help rebuild her identity and her life. But along the way, she realized, "Man, there are so many other people out there who aren't being told about this and need resources." I say this all the time, choosing to write a book when you have aphasia has got to be one of the bravest decisions because it puts you face to face with your frustrating disability every day. And there were a few times when Deb came downstairs and said, "I'm done," "I'm not finishing the book," "This is too frustrating," and "I can't stand it". But it was that knowledge that it could help other people that got her to push through that frustration. And that gets to kind of one of the big themes of our work, which is about finding purpose and having purpose and how that's often our biggest motivator in life, what we can give. So, that's kind of a little bit of the history of the book.

Katie: I appreciate you sharing that. And as you were both talking, you were talking about this journey. And you know, thinking about the story and the writing and the rewriting of your identity. It really isn't about the product, not necessarily the book, which maybe initially that's what you were interested in Deb. But really, the journey is where all the work and the reintegration of who you are and who you're going to be is. very powerful. Very powerful. It's such a great read. I've enjoyed the book very much. So, you have even moved forward beyond a book, and you've started a nonprofit. It's been established for a little bit now. Can you tell us about your nonprofit, Stroke Onward?

Debra: Yes. I created it three, no, four years ago? Our mission is to ensure stroke survivors and their supporters have those tools necessary to rebuild identities and rewarding lives. The vision is a stroke system of care that fully supports every survivor's emotional journey and recovery.

Steve: Maybe I'll add. I think, clearly, the issues of critical care and helping people survive a stroke, and then all the work on rehabilitation is critical. What we saw is that a lot of people don't get all their capabilities back. It's almost like, well, if recovery means rehabilitation, then does that mean everybody who doesn't fully recover their capabilities, has a failed recovery? And we were just unwilling to accept that. Recovery had to mean more than just capabilities. That's why we decided to really focus on that next step in recovery, which is the emotional journey. So, we really think about our work around three areas. One is raising awareness, just that this whole issue of the emotional journey is really important and doesn't get enough attention. Even if people realize it's important and say, "Well, gosh, where can I get help with this?" There aren't enough resources out there. You know, at the end of the day, as Deb said, "it's about system change." That we would hope that 10 years from now, a person who suffers a stroke and their family enters a system that not only provides good critical care and points them in the direction of good rehab, but also creates a framework and resources for this part of recovery, for the emotional journey. I won't go through all the actual things we do. Hopefully, you'll be able to post the website and people can go and see more about stroke onward, www.strokeonward.org, easy to remember.

Katie: Absolutely.

Debra: And there's the book discussion guides.

Steve: Yeah, well, one of the places in that the speech therapy community has been so supportive and such a wonderful partner is with the creation of our book discussion guides. Our colleague, Jodi Kravitz, led the creation so that the book can be more accessible. There's a guide, you know, with the idea being a group of people with aphasia can read the book together and have a facilitated discussion with a guide. But also, we created separate guides for families, speech therapists, and other health care workers. Just again, the whole idea of trying to make the material accessible, digestible, and useful for people who are going through what we went through, which was the identity crisis and having to rebuild our lives.

Katie: Absolutely, we use the resources for our local book club here at Central Michigan University and our Lansing Area Aphasia Support Group. The materials were great, but the book just brought forth so much rich discussion.

Debra: Yeah.

Katie: You know, not all of it was easy to read. There is some tough stuff; you don't skirt the issues. I think it really was a very meaningful experience for our members and the students that were a part of the group to be able to hear the journey, to hear what maybe hadn't been addressed, to hear how people had moved forward with things, and the areas where we really do need to be thinking more about as healthcare providers. It is important that we can support the whole person and not just fix the physical or the language. It's a whole emotional journey that you're moving forward with, which in Stroke Onward is really important. Well, as you know, a lot of my work is about the importance of storytelling. Deb, I was wondering if you could talk about how storytelling impacts your work. Maybe even share a few stories from your work.

Debra: Sure. Storytelling is so important. We are always changing, and our stories evolve over time. Storytelling helps us navigate the emotional journey after a stroke. And in my book, Identity Theft, I share my story and the stories of others so that survivors don't feel alone. I would like to share one story that helped me recognize that life could be good after my stroke. Seven months after my stroke, my friend Ann invited me to her 50th birthday weekend in Palm Springs with tennis, hiking, talking, and biking. I said, "No...no, no, no." I would need so much help, and most of all, I could barely talk at all. Conversations would be loud and lively. I would feel frustrated, jealous, and sad. Kim, my friend, said she would help with everything. She said she would help me have fun. She was there for me. I was nervous, but I decided to give it a try. At first, I was determined to be the "old Deb" at the party, but the frustrations were constant. Conversations were too fast, and the friends trying to help did not give me time to find the words. I was frustrated constantly, but I decided to enjoy myself anyway. The night of the birthday party, I danced a lot! Great music, so fun. I was not the "old Deb" anymore, I was a newer version of myself. I could spend my time with my friends dancing, laughing, and enjoying what is essential in my life: friends, community, and fun. It is so hard, but it is so important. Pushing myself to be social and telling stories about it has been so important to my recovery.

Katie: Thanks for sharing, it's a great story. And well, I mean, you sound like you have fabulous friends, but it sounds like Kim really was one that stuck around and was willing to help you through some of that change.

Steve: And if I can add one other story, which kind of gets to how Deb reclaimed some of her old identity. In this case, her identity as a mom, and Deb tells the story in the book. When our daughter Sarah, who at the time of Deb's stroke was 15 and was not a big dater in high school. But about a year and a half after Deb's stroke, she got invited to the prom her senior year and she started going out with this guy. And I kind of said to Deb, you know, you never had that mother daughter talk with Sarah. And Deb hadn't been too active in parenting for that year, year and a half because she was you know, fighting for her recovery. I said, "You know, maybe you should be the one, as her mom, to have the talk." And so, we kind of told Sarah that we wanted to talk to her. We were all standing around the island in the kitchen. Sarah kind of knew something was coming but didn't quite know what. And you know Deb's speech was nothing like as good as it is now back then. You could just see the concentration on her face trying to figure out what she was going to say. And she kind of slowly said, "Boyfriend? Yes. Pregnant, no!" And that has been dubbed by all of our friends for the world's most efficient and effective mother daughter talk. It was funny; we all just burst out laughing. It was really a great kind of wake up for us that Deb could reclaim a lot of aspects of her identity, but she would just have to live them out differently. And that just because they had to be different didn't mean she couldn't live them out. That was one of our favorites.

Katie: That is a good story. What I love about your sharing of the stories and where your work brings storytelling to life. One of the things that's happening in the literature that's coming into practice, particularly in the UK, and over in Australia, and hopefully maybe over here in the U.S. sometime, is this idea of step psychological care for aphasia. We'll put something in the show notes if listeners want to check this out a little bit more. This idea consists of different tiers to support mental health and particularly depression in people with stroke and aphasia. At that bottom tier, which is supposed to be accessible to every stroke survivor, one of the level one interventions is storytelling. So, it's that powerful, you know. It's not just fun to tell stories; it's very important to who we are as people and integrating our mental and emotional health into who we are.

Steve: Deb, did you want to mention somebody you interviewed for the book that particularly talked about storytelling?

Debra: Yes. Randy enjoys storytelling, and he is a stroke survivor from St. Louis who I interviewed for the book. Randy and his wife, Rose, started their own aphasia meetup group. Social connections were really important to him.

Steve: And he talked a lot about how he gradually got more and more comfortable telling his story and how much that helped him. He spoke at our community event in St. Louis, and I thought he kind of stole the show when he said, "My stroke changed my life, but it will not hold me back." I just kind of well up because that's what it's all about. And he said it so eloquently.

Katie: Powerful, powerful. Well, Debra, can you tell us a little more about this idea of identity?

Debra: Sure. Barbara Shadden and you, Katie Strong, I am so thankful. Identity is our narrative about ourselves over time. We have not one static identity, we have multiple identities. We are always changing. Relationships like friends, family, colleagues, and others are a big part of making who we are. Identity is a choice. Instead of asking, "Who am I now?" ask "Who do I want to be now?".

Katie: Powerful. I like it. Debra, could you talk about aphasia specifically, and how that plays into your views on identity and your recovery?

Debra: Yeah. Communication is so central to everything we do and to my identity. Having communication challenges just makes everything harder.

Steve: And I'll just add that sometimes in recovery, the physical stuff, you know, trying to walk better or get use of a right arm back, would tend to be the focus. But in reality, the aphasia is really the thing that has challenged her identity the most because it was the communication that forced her from a career she worked so hard to achieve. Also, friends and interaction are so central to who Deb is, and that has just gotten so much more challenging. So, not to diminish the impact of physical disabilities, but aphasia is big and really central to the recovery process.

Katie: And I think you know, you mentioned Barbara Shadden earlier, but you know her idea of identity theft. We are the stories that we tell and when we have trouble with the that one thing that we use for story, that tool of language that is impaired, or changed or broken, or, you know, smaller, or however we want to view it with having aphasia, it really makes a significant impact on how you view yourself and how you can connect with other people that are important to you.

Debra: Yeah. I agree completely, and I am so lucky to have friends and family to support me.

Steve: And I think what you said, Katie, is so powerful, and it's why we talk a lot about how few people really know and understand what aphasia is. I think that's because there's this, whatever the opposite of a virtual cycle is, it's the doom loop cycle of aphasia. Aphasia impacts people's identity so that they don't want to speak if they have aphasia because it's not consistent with who they think they are. But because people don't want to speak with aphasia, nobody knows what it is. And so that, you know, makes it that much harder to speak with aphasia. And I think, you know, that gets to this notion of purpose sometimes driving people through what's hard and what's uncomfortable. That was true for Deb and played a role in making a decision that "Yeah, I really wish I could speak the same way I used to." We've had so many arguments about Deb saying, "I was terrible," because she was evaluating her speaking performance against the way she would have done it before her stroke. Yet, Deb's been willing to push through that, to be out there. You know, that's part of our work of trying to network with other people and encourage people to get out there and tell their stories because that's the only way the world is going to learn.

Katie: And that you're doing, which is so appreciated and inspirational. Steve, I know your work is as much about supporting care partners and other family members as it is about supporting survivors. Can you share a bit about your journey through all of this?

Steve: Oof, it feels like that could be a podcast in and of itself. But you know, I think maybe the nugget that I'll share is it's pretty obvious that people who are close to somebody who has a stroke or aphasia, our lives are going to change. Things we used to do; we can't do. Help we didn't used to have to provide, we do have to provide. I think the real "aha" for me personally, was that I needed to focus on my identity change as well. It wasn't just Deb's identity. And for me personally, and I've talked to a lot of care partners about this, really embracing "care partner" as part of my identity. Not just something I had to do to support Deb, but part of who I now am. This was really important to me because that mind shift actually helped me resent some of the changes in my life less. It was just, like Deb said, our identities change, our lives change, this is just another change. If I can embrace that as a change in who I am, then those just become part of life. Not that they're not frustrating sometimes, but it's a lot better. So I think, you know, Sarah, our daughter, is when you talk about the impact on family. And again, this story is in the book as well. But again, not just the impact on her life, but the impact on her and who she was. About two years after Deb's stroke, she gave a talk to her whole school community. Sarah talked about the experience of watching her mom have a stroke, and how she wanted to be like her mother and be strong and tough it out. People were offering to help, and she said "No." She was going to soccer practice, she was doing all of her assignments, and she was visiting Deb in the hospital; she was going to tough it out because she wanted to be strong. Then, she started to see Deb accept more help and she started wondering, well, maybe I can accept some help. She started to let her friends in and let herself be vulnerable. She kind of realized that real strength isn't about toughing it out, real strength is about being vulnerable and using your relationships. Sarah's an athlete, and she ended the talk with, "Even the world's strongest person needs a spotter." I well up just telling the story. When she told it, we went through boxes of tissues. But that changed her as a person in ways that actually, you know, maybe she would have gotten there eventually, but not when she was 17. I think that's what we talked to a lot of the families and care partners about. Allow yourself to think about how this experience can change you as a person and try to embrace some of that change where you can.

Katie: Powerful.

Debra: And the families, Danny, Adam, and Sarah. The families are affected.

Katie: Yeah. Aphasia just doesn't happen to the person who has it. Well, Deb, you mentioned that there is one part in your book that sums up a lot of what you were trying to share with other survivors and their families. Maybe we can end with you reading from that paragraph.

Deb: Faced with a trauma like stroke, the opportunities for both challenge and growth are great. We can clarify what we value most in life, set goals that will help us meet them, and achieve repeated small wins in pursuit of them. In this way, we can achieve not just recovery, but satisfying growth and fundamental meanings in our lives.

Katie: I love it. Yeah. Challenge and adversity, thinking forward into the future, and having goals, purpose, and meaning. It's what life is about. Well, this has just been a fabulous conversation. Thank you both for taking time to share with us a little bit about what you've been up to over the summer and inspire us with some of your stories.

Debra: Thank you.

Steve: Thank you.

Well, that wraps up this episode. 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.

Information about Stroke Onward

• https://strokeonward.org/
• Stroke Onward website
• Instagram
• Facebook
• Twitter
• YouTube
• Identity Theft Book Club Materials developed by Jodi Kravitz, Ellen Bernstein-Ellis, Liz Hoover and Stroke Onward https://strokeonward.org/bookguides/

Resources Related to Identity and Aphasia

Meyerson, D., E., (2003). Tempered Radicals: How Everyday Leaders Inspire Change at Work. Boston, MA: Harvard Business School Press.

Meyerson, D. & Zuckerman, D. (2019). Identity theft: Rediscovering Ourselves After Stroke. Andrews McMeel Publishing. www.identitytheftbook.org

Shadden, B. (2005). Aphasia as identity theft: Theory and practice. Aphasiology, 19(3-5), 211-223. https://doi.org/10.1080/02687930444000697

Strong, K., & Shadden, B. (2020). The power of story in identity renegotiation: Clinical approaches to supporting persons living with aphasia. Perspectives of the ASHA Special Interest Groups. https://doi.org/10.1044/2019_PERSP-19-00145

Listen to Episode #5 of Aphasia Access Conversations Podcast featuring a conversation between Katie Strong and Barbara Shadden about the important role story has in supporting identity in people who are impacted by living with aphasia. https://aphasiaaccess.libsyn.com/insights-and-aha-moments-about-aphasia-care-with-professor-emeriti-barbara-shadden

Resources Related to Stepped Psychological Care

Listen to Episode #34 of Aphasia Access Conversations Podcast featuring a conversation between Jerry Hoepner and Ian Kneebone about stepped psychological care and other research related to supporting the emotional journey of living with stroke and aphasia. https://aphasiaaccess.libsyn.com/34-in-conversation-with-ian-keebone

Kneebone, I. I. (2016). A framework to support Cognitive Behavior Therapy for emotional disorder after stroke. Cognitive and Behavioral Practice, 23(1), 99-109. https://doi.org/10.1016/j.cbpra.2015.02.001

Ryan, B., Worrall, L., Sekhon, J., Baker, C., Carragher, M., Bohan, J., Power, E., Rose, M., Simmons-Mackie, N., Togher, L., & Kneebone, I. (2020). Time to step up: A call for the speech pathology profession to utilise stepped psychological care for people with aphasia post stroke. In K. H. Meredith & G. N. Yeates (Eds.), Psychotherapy and aphasia: Interventions for emotional wellbeing and relationships (pp. 1-16). Routledge.

Acknowledgements – A special thank you to Amanda Zalucki and Emma Keilen from the Strong Story Lab at Central Michigan University for their assistance in the transcription of this episode.

Cite as: Bertram, M., Isaksen, J., Toft, L. E., Olsen, A. M., & Breckling, M. (2021). Evaluering af projekt Forløb for borgere med afasi samt afrapportering af implementeringsopfølgningen KomTil – fra udvikling til drift. Unpublished report from University of Southern Denmark.

I'm Ellen Bernstein-Ellis, Program Specialist and Director Emeritus for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resource

I'm today's host for an episode that will feature Kathryn Shelley, former Aphasia Access President and co-founder and current Grant Director for the Aphasia Center of West Texas. Kathryn was our guest for episode #1 of the Aphasia Access Conversations Podcast and we are delighted and honored to invite her back to be the guest on this 100th episode of our Aphasia Conversations Podcast. We'll discuss financial sustainability of Life Participation programs across a variety of settings, with a focus on best practices for fundraising.

Guest bio

Kathryn Shelley has over 30 years' experience in nonprofit management, board leadership, strategic planning, marketing, and fundraising. She is co-founder, prior Executive Director, Marketing & Development Director, and currently the Grants Director for the Aphasia Center of West Texas, one of the earliest community-based nonprofits in the U.S. to incorporate the Life Participation Approach to Aphasia. Prior to her father's stroke in 2001 and his resulting aphasia, Kathryn was lead designer and co-owner of a marketing and graphic design firm in Austin Texas.

Listener Take-aways

In today's episode you will:

• Hear how two events involving chocolate and rock and roll have grown awareness and funds.
• Find out how typical stages of organizational development might influence your fundraising capacity.
• Gain practical tips for sharing the impact of your aphasia program to help raise awareness and funding.
• Learn about some resources available for supporting your nonprofit know-how.

Show notes edited for conciseness and clarity

Ellen Bernstein-Ellis

So, Kathryn, I want to give you a shout out and just a great big welcome. It took 100 episodes, but thank you for coming back.

Kathryn Shelley

Thank you so much for having me, Ellen.

Ellen Bernstein-Ellis 01:24

Absolutely, I was glad to introduce you. You've done so much and have worn so many different hats, Kathryn, and I'm excited to get to have a discussion with you today. So again, welcome.

Kathryn Shelley 02:20

Thank you.

Ellen Bernstein-Ellis 02:21

We like to start off the episodes with a fun question. Can you share an Aphasia Access favorite resource?

Kathryn Shelley 02:33

Well, it's a hard pick, there are so many. But let me tell you about the one that I'm involved in right now - top of mind. It's an online certificate and badge course, E-badge course, called Person Centered care, Life Participation Approach to Aphasia series.

Aphasia Access just launched the first in that series called The Life Participation, Knowledge Course. It's so much more than a webinar. It's contemporary, and it's how you interact with each of eight modules. You earn .25 CEUs, and at the end you receive a clickable E badge which takes anybody, an employer, your peers, if you have that in your email signature, to a site that shows everything that you did to earn that badge. It's so contemporary and so comprehensive, and it will give someone a foundational understanding of the Life Participation Approach. I'm loving working with Melinda Corwin and Nina Simmons-Mackie, and just the entire team of subject matter experts. The reviews are coming in from both professors teaching the next generation and current speech pathologists that it is really fantastic and very, very helpful.

Ellen Bernstein-Ellis 04:06

We can also point our listeners to Episode 92 to learn more about this course, because we actually interviewed Melinda and Brooke Hallowell. So that's another place they can go to learn more. Can you explain to the listeners how they can access the course?

Kathryn Shelley 04:27

On AphasiaAccess.org, you'll see the link on the homepage that will take you over to our new Academy, which is the platform where all of our interactive courses are. It's an easy sign up to be on that platform, and then you'll see the course right there.

Ellen Bernstein-Ellis 04:48

That's great. Thank you. I don't blame you for picking that today for a favorite. To celebrate this 100th episode, I was wondering, Kathryn, if I could ask you to share with our listeners the backstory to the start of this podcast. Just a little insider history.

Kathryn Shelley 05:07

Sure. Let's see. It was Nina Simmons-Mackie and I in a daydreaming conversation wondering how to reach busy professionals with a free product to connect them to the wealth of practical tips and information that is available through all the people that make up Aphasia Access. It was Nina who said, "How about a podcast, people wouldn't have to carve out work time, they can listen in a car, or on a walk, anytime." And then we brainstormed who might entertain heading up this new endeavor and be the type of person others would say yes to. So Ellen, I was simply the one fortunate enough to pitch the idea to you. So it's really you and the amazing podcast team that made it happen and keep it going.

Ellen Bernstein-Ellis 06:01

Thank you. Those are very, very kind words, and very appreciated. I just have to give a shout out to my colleagues who have been part of this collaborative team along the way, the whole 100 episodes. Nidhi Mahendra, Katie Strong, Jerry Hoepner, Janet Patterson, and Alyssa Rome. They've all contributed to this podcast so much and they are a joy to work with. And of course, I have to thank Todd Von Deak, Jess Campbell and Lisa McCracken, of Aphasia Access, who make sure we have all the logistical support in place. And one more thank you, and that's to the 100 plus guests. Just thank you for sharing your stories and your incredible work with our listeners. You know, maybe one more thank you, and that's to the listeners, because we just so appreciate the support. Thank you for sharing the podcast with your colleagues and your students. We are excited to see it grow.

Kathryn Shelley 06:53

You told me that there's over 102,000 downloads that have been verified. So how cool is that?

Ellen Bernstein-Ellis 07:02

We've been amazed to see that it's being listened to in over 50 countries. We've just been really excited and honored to be part of this. So thank you. And again, I'm glad you're here today.

We didn't get a chance to describe your Aphasia Center very much when you were interviewed for episode one. You did share the why though, how your dad's own experience with aphasia was an important part of the story for starting the Aphasia Center at West Texas in Midland. You are a co-founder of that center and it's celebrating its 20th anniversary. That's a really special milestone. Maybe you could share a little bit about what your center looks like today.

Kathryn Shelley 07:45

Sure, we're in a standalone building. We have multiple groups three days a week. Conversation groups are the backbone. Additionally, we have raised bed gardening, cooking, computer lab, and woodworking. All the groups are ever changing through the years according to the interests of our members. We've had book clubs, singing, photography, art,. Until COVID, we had a very active out and about program, which got people out of the center going to field trips to local museums, nature preserve, restaurants. We're all so glad it's starting to ramp back up.

Ellen Bernstein-Ellis 08:25

Sounds like amazing programming. I just have to acknowledge the 20th. It's a special milestone and really something to celebrate and an opportunity to reflect.

Kathryn Shelley 08:35

Yes, it definitely is. And I'm really humbled and proud that 20 years later, that the spirit of the place, the spirit of the Aphasia Center looks and feels really as vibrant as it did during our startup years. I think that vibrancy remains so contagious, because we continue to serve our mission, which is to walk alongside aphasia survivors, who thought their life was basically over, then watch that depression evolve into hope and a pathway to embrace life again. So it really continues to be those real life stories that keep our staff, our volunteers and our investors so energized.

I think in terms of today's financial sustainability topic, at 20 years, that looks different than in the very beginning, because we have investors that have now been with us for decades. They've guided us through the stock market crash of 2008. And then when we outgrew our early meeting spaces, to launch a capital campaign and buy a building. There are people who have stepped up through COVID. So we've really grown into our mature stage of development and our reputation certainly helps us attract and sustain these long term relationships.

Ellen Bernstein-Ellis 10:05

Kathryn, your center works really hard at cultivating grant support and building a donor base. But I really want to share with the listeners some of the stellar annual events that are associated with your center. I certainly have been watching this infamous Chocolate Decadence event that you host prior to Valentine's Day each year. I'm really just in awe of your center's ability to create these events. Could you share some tips on how you build a successful team to take on something like this and how the members of your center are involved?

Kathryn Shelley 10:43

Sure. The first thing I would say is do not attempt this in year one. Events, special events, just take so much staff time and volunteer effort to put on. Chocolate Decadence started in our fourth year, when I would say we were entering our adolescent stage of development. Our donor base and our database was growing. We'd populated our board by then with people in media and marketing plus leaders in business and health care. Word was getting out in more and more spheres about us. Invitations to speak were on the wise, and that's when a generous woman with a long history of philanthropy and volunteer service presented her idea to our board. She came to us and to our board and said that she had just attended a chocolate themed fundraiser in another state, and that she thought it would do well in our region. And then, of course, everybody was over the moon at that idea.

And she said, if you're interested, I'll chair the first year. She brought her own volunteers in the beginning, then it evolved from there with friends of friends, and it kept going. So at this point, Chocolate Decadence continues to be an elegant night, and it raises around 40% of our general operating funds. It is the gift that keeps on giving. Members do attend the event too. What's more life participation than that? One of the really dear things is that a family of one of our very loved founding board members who passed away knew what the center meant to their mother. That family underwrites the cost of the member tables as a way to honor their mother.

Ellen Bernstein-Ellis 12:42

That is fabulous. What a great way to bring the community together and have the stakeholders be part of a really important night. So that's great. And it sounds to me like you're saying these events just take quite a team, like you need a cadre of volunteers.

Kathryn Shelley 12:58

That's exactly right. We certainly have a large number of terrific volunteers who show up that night to help. One thing that I've seen really talked about in the volunteer world is that trends have changed over the last 20 years. And, of course, more after COVID. So there used to be a generation of community volunteers who made volunteering their job. And they served on lengthy committee tasks. They really took care of so many things about Chocolate Decadence. We've not seen a new generation that has that level of flexibility today. So I have to say Chocolate Decadence has streamlined by switching to a more full service venue and contracting out a lot of what volunteers handled before.

Ellen Bernstein-Ellis 13:53

Yeah, I think I've noticed that too. And some of the other organizations that I've been involved with have noted this kind of change in trends of how you have to utilize volunteers.

Kathryn Shelley 14:02

That's true. That's very true.

Ellen Bernstein-Ellis 14:05

Well, I know that Chocolate Decadence is just an amazing event. It has chocolate, so you're off to the races with that. But you also do a concert, could you share a little bit about what that looks like? So I think that's a summer gathering. Is that right?

Kathryn Shelley 14:21

That's right. And the Aphasia awareness concert is a different goal. Its main goal is awareness. So yes, it's an outdoor event with a fun tribute band. General Admission is free. So this year, you'll feel like you're witnessing Elton John in his early years.

Ellen Bernstein-Ellis 14:40

Oh, now that's great.

Kathryn Shelley 14:43

Yeah, so during the concert, we raise awareness about aphasia, how it impacts people, and that there's an Aphasia Center to help. The cost of the band is entirely underwritten by sponsors. And then because it's a free event, our television newspaper, and radio stations, trade or greatly reduce the cost of airtime for all the advertising. So it's a win-win as the media and a number of businesses want to have their names on the stage banners seen by that audience that night. It's usually a couple thousand people. Both of these events are just great ways for Aphasia Center members and families to get out of the house and participate. The fundraiser of Chocolate Decadence and the awareness raiser of the Concert are our two yearly events.

Ellen Bernstein-Ellis 15:37

Both of them build community in their own way.. That's fabulous.

Today I've been thinking about how we're going to talk about this. And whether you are a community based center, a university, or even a hospital program, sustainability has several pillars, and I am so glad that you kindly agreed today to address one of those pillars, specifically financial sustainability.

I'm particularly grateful for this chance to learn from your expertise, Kathryn, because most SLP training programs rarely offer instruction on program development and management. Yet, we are frequently motivated to launch programs to meet the needs of the community we serve, and we often learn as we go. But this lack of knowledge might be a barrier to someone wanting to start a program. You mentioned during our planning meeting that there's a fundraising framework that involves understanding the organizational development stages, and you've already started to sprinkle our conversation with those words. Could you explain those stages to the listeners?

Kathryn Shelley 16:44

Sure. So the typical stages, particularly in nonprofits, and I think they overlap to other settings, are often called infancy, or startup, adolescence and maturity. Most every organization or a program begins with a compelling story by someone who is smack in the middle of that story. So if we think about Jodi Morgan, who is a huge hearted speech pathologist in Jacksonville, Florida, she went to a crowdsourcing campaign populated with video clips of people with aphasia, answering what an aphasia center would mean to them, when they didn't have one to go to. Then, that led to starting the Brooks Aphasia Center. And of course, my own story is as a panicked daughter, who only saw a dismal life ahead for my father, and frankly, an overwhelming life for me. So the first thing I did was call around to get advice on who was one of our region's most respected SLPs. Over and over, I was given the name Beth Crawford. And so it was Beth and I on the original staff, and Beth remains the program director today.

Ellen Bernstein-Ellis 18:00

That's fabulous to have that type of continuity and partnership.

Kathryn Shelley 18:04

Absolutely. And then at the very beginning, the other person that's from that original staff, is Shun Kelly. She came on board as a CNA in our earliest days. All three of us are still there, 20 years later. But the startup stage of a new program is so often started by the people who are deeply affected. And, you know, there's a strong sense of ownership and often entrepreneurial staff emerges from the founders. So your nonprofit board of directors in those early stages is often more of a programming board, consumed with all the details of delivering service and creating those services.

Ellen Bernstein-Ellis 18:49

Okay, so that's what the startup looks like, or the infancy stage. Let's move on to adolescence.

Kathryn Shelley 18:56

It can be a little rocky, like the usual stage. When you move further into the adolescent stage, the conversations, of course, have evolved to how to ensure the well-being and the longevity of the organization. For a nonprofit, that's the stage where recruitment needs to happen to transition from the founding programming board to a governing managing board. This is where I've seen organizations falter and get stuck at this stage if their leadership team remains homogeneous. Even more so if staff isn't equipped or unable to dedicate the time needed for financial well-being. This is where expanding to experts in fund development, social and broadcast media, and corporate and healthcare leaders can really open new spheres of expertise and influence.

Then of course, I'm thinking about if you are housed within a university setting, fundraising people are typically already in place within the Office of Advancement. Of course, that's where you're going to really keep that relationship, hopefully, top of mind. You are supplying good stories of the impact that you're making, so that the advancement office team is able to communicate those stories as they're doing fundraising for the university and your program.

Ellen Bernstein-Ellis 20:41

How about moving on to the mature stage? Tell me a little bit about that.

Kathryn Shelley 20:49

So yes, so the mature stage is where the governing managing board transitions to a true governing fundraising board. If you've already brought in a variety of skill sets in the previous stage, then it's more board members with high influence that are really more easily recruited. It's important to also keep the advancement officer with those news stories, and to keep your board just inspired with the stories of what you do.

Ellen Bernstein-Ellis 21:26

If you happen to be an SLP, who is new to these types of concepts, is there a resource you can recommend to learn more?

Kathryn Shelley 21:37

Absolutely, there's so many. I have to say that, at heart, I'm an introvert. Just the thought of asking for money makes my palms sweat, and it just feels rude.

Ellen Bernstein-Ellis 21:51

Okay, I have sweaty palms too.

Kathryn Shelley 21:55

But here's the thing. There are so many learning opportunities out there. I've taken advantage of so many that have been provided in our region, and that I could find online. Now, of course, Aphasia Access is full of people who have started small to large programs within all types of settings.

Ellen Bernstein-Ellis 22:17

That's a great point. And that's part of the strength of that community. For sure.

Kathryn Shelley 22:21

Absolutely. And I can tell you that even at the Aphasia Access Leadership Summit, this March, there's a roundtable session called "Show Me the Money". There's a community of people, speech pathologists, you know, all waiting for you.

Then, also, Aphasia Access is launching a new mentoring program, and it's a great place to get one on one advice about all kinds of topics. That's within Aphasia Access.

Then I would suggest searching the internet to see if there's a Nonprofit Management Center near you, because they're scattered across the country. They are a treasure trove of local resources. Importantly, they typically have a foundation search directory available to search funders by state ,region or interest area. They're a great local resource. Lastly, I'd recommend two things, the National Council of Nonprofits, and BoardSource, both premier organizations with lots of resources.

Ellen Bernstein-Ellis 23:29

That's great. You mentioned local resources and I'm sure some of these have great online resources to support and get you the knowledge you need to start this process to successfully implement these new programs, whether they're small or large scale.

In terms of capacity building, when we had our planning meeting, you mentioned something that really resonated with me and I want you to bring that back up. It's about expectations and time. I was wondering if you would share that with the listeners?

Kathryn Shelley 24:07

I've had such good fortune to come to know speech pathologists, just top of the line people wanting to change the world. I know how hard you all work and you all are in the life transformation business, helping people with complicated lives. It seems to me unrealistic to expect the same people running programs to also carry the major weight of fundraising, because what I know is that grant applications and a diversified fundraising strategy are a specialized skill set that can certainly be a full time job. Lots of foundations offer what they call capacity building grants. I would suggest prioritizing the cost of a skill development person, on contract or on staff as early as possible, that will really free you up to tend to the people and create the programs that you're trying to create.

Ellen Bernstein-Ellis 25:13

I think you're speaking to the "it takes a village" model.

Kathryn Shelley 25:19

So, absolutely and there's only so many,many hours in the day, right?

Ellen Bernstein-Ellis 25:23

Well, let's then talk and offer our listeners some tips for implementing financial sustainability best practices, because I know that's really important to you. Where would you like to start? Share a best practice and then a tip to go with it.

Kathryn Shelley 25:38

Okay, so always, the first best practice, in my mind, is capturing the human story. And the tip I would offer, especially in the age we live in, is to make sure you're sharing the real plight of people with aphasia in their own words, because it helps others understand the impact of your dream, instead of just feeling like you're there begging for dollars.

So take out your cell phone, ask people with aphasia and their loved ones, what it was like before you came along, how their life has changed, or would change if they had-- fill in the blank-- the aphasia friendly book club or an aphasia camp or the program at that university. Video now is so low cost it's really a level playing field for anyone wanting to launch a dream. So take those videos and then strategize where best to share those stories.

Ellen Bernstein-Ellis 26:37

Well, that's a real doable tip, I think. And I want to recommend to our listeners, just visit the Aphasia Center of West Texas website, where you feature some compelling member stories. And do you have any lessons or tips about how you selected those stories?

Kathryn Shelley 26:55

Not so much about how we selected them. I remember one time, we literally just set up the studio, we did hire a professional videographer, but we just hired him for two and a half hours. And then we asked anybody that wanted to come in to just have a seat. And we asked them about life before us and what difference we make. What spontaneously came out, in gestures, we of course, had some aphasia friendly tools sitting there if they needed those, but it's so powerful, what people will communicate if just given the chance?

Ellen Bernstein-Ellis 27:39

Well, I think the first time I went to your website is because Audrey Holland said that everybody should listen or watch Ann's story. I think that's still up on your website. Is that right?

Kathryn Shelley

It is.

Ellen Bernstein-Ellis

So Ann's story. Kathryn, would you like to share another best practice?

Kathryn Shelley 27:57

The second one I always think of is to utilize your regional resources. A tip is to find the Community Foundation closest to you. There are, I know, over 700 scattered across the United States. And my understanding is that something similar exists in a lot of countries.

So in our country, a Community Foundation is a public charity that typically focuses on supporting a geographical area. They support local nonprofits and educational institutions. If you're a university, it would be through the Office of Advancement because that usually is a 501 C3 arm of a college or university. Whether you're going with someone or setting up the appointment yourself, the main point is that the Grants Officer at a Community Foundation wants to talk to you, they really do. This is their mandate, to fund new endeavors and sustain good causes in the community. So they have donor advised funds, endowments, scholarships, field of interest funds, giving circles and more. And they're all about making good things happen, especially for marginalized populations, like people with aphasia,

Ellen Bernstein-Ellis 29:18

Right, that's great to have something tangible like that, that we can find in all of our communities. Do you have a third best practice you can share?

Kathryn Shelley 29:27

Sure, the third best practice I think, is to create a strategy to continually expand relationships and the possibility of donors. It's really about beginning relationships, not knowing where they might lead. So for the Aphasia Center of West Texas, we host what we call "Talking and Tour" three to four times a year. We have chosen after people get off work before they go home, as a happy hour type event. They know from the flier that we will not be asking for money. We do show people a video featuring a variety of our members with aphasia sharing the impact of our services. It's around eight minutes long. And then our executive director Kitty Binek, shares about our events, a bit about our program, our board of volunteers.

We make sure that we invite key people in town, such as realtors, ministers and rabbis, financial planners, and business people. Our board is responsible for bringing guests as well. It's really a place to cultivate a beginning relationship and an awareness of aphasia and what we do. We've certainly gained volunteers and donors in the process, but regardless, we find people are really inspired when they leave.

Ellen Bernstein-Ellis 30:55

I think you're pointing out the importance, that's in the literature on financial sustainability and healthcare innovation, of identifying your champions. That is an element that seems to be mentioned in numerous articles. You have to find the person who's motivated to support your program, whether you are at a university or community nonprofit. I remember an early episode with Janet Whiteside, Episode 17. She spoke about how the dean of her university asked her to share her dream. He wanted to know what it would be and then when he heard it was about building this Aphasia House, he was committed to raising the funds that would open the doors to this dream. That was just so inspirational, that type of partnership and championship. Any tips around identifying your champions?

Kathryn Shelley 31:50

Sure, if I go back to the beginning, like Janet Whiteside and Jodie Morgan, all of us listened to our heart's desire to make a difference. And then we started talking to others. For me, there were a couple of community people that listened to me talk. And I was just talking everywhere I could think. What happens when you start talking, is that the power of good in the universe does open doors. In addition, you find the dreamers who came before you. So Aphasia Access, and the Aphasia Institute are great places to find community. But if you start talking in your own community, it really is contagious. I do think that the world does start opening up to you,

Ellen Bernstein-Ellis 32:47

That's really inspirational advice. It just really goes to the heart. And I really appreciate this conversation today, because fundraising and finances can be very scary and today, you've made it feel so much more doable--lead by what's in the heart, and I really appreciate that. So thank you. Is there anything else you haven't had a chance to cover that you just wanted to share with the listeners?

Kathryn Shelley 33:15

The one thing that I haven't mentioned that I have used in fundraising, and in populating a request for media or anything like that is I've been using the Aphasia Access State of Aphasia Report. I really am not trying to continually go back, but it is unlike anything I've ever seen. Instead of finding statistics, and all kinds of things in all kinds of places, all those stories and statistics, so much of what we all need to populate grant proposals and give them media sound bites is all in there. It's so worth it.

Ellen Bernstein-Ellis 34:00

I personally have also had an amazing experience with that as a resource for multiple tasks. And I just want to let our listeners know that recently in December, I think it was episode 96, we actually featured Nina Simmons-Mackie and Jamie Azios, telling us about how they're updating the report and what it's going to look like next. That is absolutely exciting. I am so grateful that that will soon be in our hands as well. So thank you for bringing that up.

It's time to wrap up this episode. But I must ask you one more thing, Kathryn, and this is a fun one for me. If you had to pick only one thing we need to achieve urgently, as a community of providers and professionals, what would that one thing be for you?

Kathryn Shelley 34:50

I think that's easy. For me, I say this with the greatest respect, but I do think it's diversification. It really is. Is my observation over these 20 years that if the condition of aphasia is going to become a household word, and if services are really going to reach the people who need them, then we must take our passionate storytelling selves and invite experts in marketing and fundraising, broader healthcare and community leaders who have the expertise and can help open more doors to other communities of influence.

Ellen Bernstein-Ellis 35:29

That sounds really important, easier, maybe easier said than done, but absolutely essential. So thank you. Thank you for being part of the podcast today, number one and number 100, Kathryn.

Kathryn Shelley 35:42

Thank you so much.

Ellen Bernstein-Ellis 35:42

Our pleasure. I'm gonna thank our listeners as well. And for references and resources mentioned in today's show, please see our show notes and they're available on our website, www.aphasiaaccess.org. And there you can become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy that Kathryn described at the start of the show. And if you have an idea for a future podcast episode, email us at info at aphasiaaccess.org For Aphasia Access Conversations, I am Ellen Bernstein-Ellis, and just thank you again for your ongoing support of Aphasia Access

References and Resources

Aphasia Center of West Texas, https://aphasiawtx.org/

• Aphasia Anecdotes including Ann's story (from website)

https://aphasiawtx.org/about-us/

Brooks Rehabilitation Aphasia Center: https://brooksrehab.org/services/aphasia-center/

Aphasia House, University of South Florida: https://healthprofessions.ucf.edu/cdclinic/aphasia/

State of Aphasia Report, Aphasia Access: https://www.aphasiaaccess.org/reports/

Board Source, https://boardsource.org

Nonprofit Management Center, https://www.nmc-pb.org/resources

National Council of Nonprofits, https://www.councilofnonprofits.org/

Nonprofit Life Cycle, https://speakmanconsulting.com/resources/nonprofit-lifecycle-matrix.pdf

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong and I'm a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Jytte Isaksen. We'll be talking about Making Communication about Healthcare Everyone's Responsibility: Communication Partner Training for Health Care Professionals

Jytte Isaksen is an associate professor at the Department of Language and Communication, University of Southern Denmark in Odense, Denmark. She has a background as speech and language pathologist. Jytte lectures in the speech-language pathology and audiology programs in evidence-based practice, qualitative research methodologies, neurogenic communication disorders including aphasia, and other clinical subjects. Jytte's research is centred around communication with people with aphasia, for example communication partner training of health professionals, but she is also interested in outcome evaluation of aphasia therapy, involvement of people with aphasia in research, and supporting access and services for people with aphasia in low- and middle-income countries. A current research project of hers is about families living with aphasia and how to make sure that they get support throughout the care pathway. Jytte is a part of the international research group Collaboration of Aphasia Trialists, where she serves in the executive committee and as chair of the working group Societal Impact and Reintegration.

In this episode you will:

• Learn about the importance of trained healthcare providers who can communicate with people living with aphasia.
• Be introduced to the KomTil method of training developed in Denmark.
• Be inspired to consider how you might incorporate communication partner training with healthcare providers in your community.

Katie: As we get started, I wondered if you could you tell our listeners exactly what is meant by communication partner training. And why is it so important for health care providers?

Jytte: Thank you so much, first of all, Katie and Aphasia Access for inviting me to talk about this topic that is very close to my heart. I think that conversation communication partner training, CPT, is defined in different ways in literature. But one of the definitions that I usually stick to is that CPT is an umbrella term that covers different types of complex interventions for communication partners of people with aphasia, and possibly the person with aphasia themselves. And why is it important to healthcare professionals? I would say it's important for everyone working with a person with aphasia because you need to be able to communicate with them. No matter if you are a nurse, or a physiotherapist, or anyone in the healthcare system. The secretary on the ward that needs to communicate with people with aphasia. You need to be able to express yourself in a way that people with aphasia better understand you, but also support them in their expression so that they can say what they really want to say, or some of it at least.

Katie: Absolutely. I completely agree. Being able to have conversations about your healthcare is just so important. So important. What role do speech-language pathologists play in the training of healthcare professionals?

Jytte: We play a very important role. I think it's a way of opening up participation in life, including in healthcare, for people with aphasia. Since we are the professionals especially trained in being able not just to treat, but hopefully also to communicate with people with aphasia, I think we as a profession are a good way into that. But I will later in this podcast talk about how other healthcare professionals can also be CPT providers. We have tried to do that in the project I will tell you about later today.

Katie: Yeah, that's so exciting. I'm really excited to talk about your work. I was wondering though if you could tell us how you got interested in the area of CPT.

Jytte: Yeah, that's a good question. Mainly because so many clinicians in Denmark were interested and still are interested in CPT. I think it was back in early 2000, some of my clinical colleagues went to the Aphasia Institute in Toronto, Canada and got trained by Aura Kagan and colleagues in the Supported Conversation for Aphasia, or the SCA program. They got back to Denmark, wrote a little bit about it, told a little bit about it, but it didn't really get that traction in the beginning. Maybe we weren't ready for that. I was more or less newly qualified at that time.

An evaluation of the Danish neurorehabilitation system was written up in 2011 and my now retired colleague, Lise Randrup Jensen from University of Copenhagen, was invited to evaluate and show the evidence around everything related to aphasia. What she enhanced in that evaluation was that there was moderate evidence that healthcare professionals trained to be better communication partners could have a different impact on people with aphasia's participation. That was picked up mainly at that time by one medical doctor. I should say, this is my interpretation of everything. That medical doctor or consultant in neuro, I think it was acute neurology, she said "I want to have this implemented in this hospital. So, no matter who is working with people with aphasia here should be trained to be better communication partners." So, I think they are very brave. They employed a clinician that was already trained at the Aphasia Institute, and they employed Lise as a researcher on this part-time. Then they started to train all their staff to do research on it and then it really started to get some traction. They not only wrote at some point a research article, but they were also invited out into different health professional communities. They wrote in the nursing magazine, and the physio magazine, and so forth. All of a sudden, so many people around the country knew about SCA specifically, and went back to their SLP asking, "Can we be trained in this method?" And, somehow, I got interested. It was very natural that I picked it up together with Lise and then we started to do research together.

Katie: It's fantastic, the energy, it's such an the organic way that it came about. That seems really authentic and people being interested. All of the different disciplines. Showcasing and getting work out in interdisciplinary audiences is so important. Yeah, I love that story. Thanks for sharing. So, I'd like to get into a little more of the details. You've taken a lead role in training healthcare providers in Denmark, and I was hoping you could talk us through a little bit about how the training was developed and the philosophy behind your training.

Jytte: Yeah, as I mentioned previously, it was a lot of SCA going on, and there still is in Denmark. So many of us, Danish clinicians and researchers, have been to Toronto and gotten SCA training. But we got back with a material developed in a Canadian context with English speaking videos, and we had to do some adaption. But it was hard to know what could we change and still call it SCA. So, at some point, I was invited into a project at the local hospital in Espia, where I live on the west coast of Denmark. It was really a nurse at the acute ward there that also had read about SCA, and she went to one of the project people there saying, "I think we should be taught some kind of CPT." And then it started.

So, our project man, he was very great at getting people together. Very funnily, he knew what SCA and CPT were because his daughter studied to be an SLP and wrote her master thesis about it. Lots of clinicians from that hospital, from the neurorehabilitation unit that the acute hospital usually would send their patients to, and then to the five surrounding municipalities that got the people with aphasia out where they lived afterwards. They got together, some researchers, me as an SLP researcher, and a colleague from public health. It wouldn't be right to say we were doing something new. So, we were standing on the shoulders of the giants, like Aura Kagan and Nina Simmons-Mackie, and other people that have worked before with CPT. We invited healthcare professionals from all stages throughout the care pathway, but definitely also people with aphasia and significant others. At first, we started with studying, "What is going on here? How do you communicate in this area of Denmark? How does the transfer happen between hospitals and from hospitals out into community care?" We got some ideas on what could be better. But then we again invited people in to do some co-design and co-development with us. So, that was how it all started. But you also asked about the philosophy, Katie.

Katie: That's alright. Well, before we get into that, I know many of them might, but I'm not sure if all of our listeners know what you mean by co-design.

Jytte: Yeah, I'm not sure that I know that either, Katie.

Katie: Well, how are you thinking of it?

Jytte: I claim I use co-design in many of the things I do. By that, I mean we invite all of the relevant stakeholders in. Well not all, but at least some of the relevant stakeholders for whatever we were going to develop. In this case, it was a CPT program, but it was also some support materials, and we developed a few other things I can talk about later. We have done workshops with them [stakeholders] asking them different questions, very open questions in the beginning. Our overarching goal from the beginning was not to create CPT, or communication partner training. It was to create cohesiveness throughout the healthcare system. It would be a good idea, we assumed, that all the way from when you were hospitalized until you finished your treatment out in your own home or in the community, that you would meet staff that knew what aphasia was, that knew how to communicate with aphasia, that used some of the same support materials. So, we asked them very openly, "How could that look? What is needed for that to be a reality?" We were quite sure from the beginning that some training had to take place. So, really, the CPT program called KomTil that we developed was a part of answering that more broad question.

Katie: Yeah, it's really a beautiful way to get something to work. I think that's why it's been so successful in your country, because you really brought it in from the ground up. People are truly interested, and then getting input from the health providers who are going to be using it, and the stakeholders, people with aphasia, family members. Thank you for sharing. I think that it's certainly something that's easier said than done, and you're showing us that it can be done, so thank you. So, did you want to remark on the philosophy?

Jytte: Yeah. So, I'm sitting here with the sheet in front of me. I think you will all be able to have a look at it and Katie will talk more about that later, where you can find it. But we have what we call our strategies and tools. There is a drawing, and it really looks like a dart board. There is a bullseye in the middle, and that is what is really most important to this training. It's also important for me to tell you that it has been people with aphasia and their family members that have told us what they found was most important. That strategy is called "person-to-person". With that, we mean that in any kind of healthcare contact, it's important that both the person with aphasia, but also the healthcare professionals, remember that it's two humans really talking together. It's not about if you have aphasia or not, or if you are a nurse or not, it's about two people having to communicate. So, you need to try to work on creating a relationship. Be respectful to each other coming from different systems and with different points of view. The last point is to be honest about what you don't know or what you don't understand. When you don't understand what the person with aphasia is saying, instead of pretending, it's okay to say, "I'm sorry, I don't understand what you're saying." So, that's the bullseye of our figure.

The next circle around the bullseye is parted into two, and one is called "your court", like you are part of the tennis court. Those are the strategies that you can do yourself without making too much effort. So, you could slow down your speech rate. You could have a natural tone of voice, knowing that you are speaking to an adult competent person. Emphasize key words in your oral speech. Have short sentences, yes-no questions, one question at a time. So, that simple communication advice that many of us are using with clients, but also advise other people to use with people with aphasia. Also take your responsibility in the communication because you know, or are being taught, in the CPT program that you really need to not control but be responsible for moving forward the conversation and providing support. Then the other half of that middle circle is "know your co-player". So, know who is on the other side of the court. Try to think about, "Who is it that you are speaking with? How must it be to have aphasia and not be able to express yourself in the way that you would like to feel that you are competent and intelligent?" It's as Aura Kagan always says, "the aphasia is masking who you are, and your competencies". Make sure that there is enough time for the person with aphasia to give their response if you ask a question, or if they want to formulate something. Also, make sure that you understand each other. Try to check if, "What I understood you said was this and that. Is that true?" or "What I tried to say before was this and that, are you with me?"

Then there is the outer ring, divided into four parts and we call them "strategies". They may be extra. Some of them are quite natural in communication and some of them are not so much. One tool could be "pointing", so be more intentional about when you point at your body, towards things, and at the person you're communicating with. The next one is also rather natural. Try to use "facial expressions, gestures, body language", and be intentional about it. Like right now as we are talking Katie, my hands are everywhere but it doesn't mean anything. But I could use my hands to be more precise in underpinning what I'm saying, and the same with my facial expression. Then the last two tools are the ones that are a bit more unnatural. "Write down keywords". So, have pen and paper ready and write the keywords in whatever you were talking about. We're talking about tools, Katie, then I would write down tools on this sheet of paper. You could also use keywords if you want people to point at different choices you give them. So, it can work as a support for what you say, but it can also be something you write down based on what the person with aphasia says to make sure, "Have I understood you right?" In the written keywords section, we also have drawings. So, we could draw to show something more visually. The last one is "pictures" or any kind of pictorial support. Especially the last two things, written keywords, drawings, and pictures, need some kind of preparation. You need to have pen and paper with you. You need to be willing to draw. Many people say to me, "But I don't draw, and people can't see what I'm drawing." Also, the pictures. Either you need to prepare the conversation and have pictures with you, or have a tablet or a smartphone, or have physical pictures that you can point at and talk about. So that was a long explanation about the KomTil.

Katie: Beautiful. So, this KomTil graphic will be in the show notes. The reference will be there as well as the articles that Jytte's talking about, so please check them out. I think brings [these strategies] to an intentional and simplified way. It really makes it make sense, breaking those things up into different areas. Wow, fantastic.

Jytte: Can I add one thing, Katie?

Katie: Of course.

Jytte: The idea with this model was also like, "Could we start in the middle, and actually solve or bridge over some of the communication challenges between us and the person with aphasia by just really being present and trying to build a strong relationship?" Or maybe a little bit more is needed. Maybe I need to slow down and do a little instead of starting in the outer circle with drawing or pictures because maybe it's not needed. You should use it if it's needed. If not, no need to do it.

Katie: Yeah. That's so important. I was actually earlier this week having a conversation with our local aphasia support group. We were talking about how to talk with your health care providers, and I think they would agree that being treated like a person and having that relationship is really the place to start. Well, you all have not only developed this, but you also are training different healthcare providers, speech pathologists, or other disciplines on how to train other people on communication partner training. So, could you talk to us about what's important about consistency in this program? Also, how does somebody become a trainer?

Jytte: Yes. So as SCA, that also has a train-the-trainer model, we have made the same. Because it's really not good to develop something and then keep all the knowledge within that small group. We wanted KomTil to have its own life, so that people could get trained as trainers and then go out into their workplaces and train their colleagues. That would also mean that you would have KomTil trainers in many places with specific competencies that could underpin implementation, train new staff, do some refresher training. So, that was really the intention from the beginning. For this to be sustainable, we need a train-the-trainer model. This is then a little bit different compared to most other CPT programs. We have chosen together with the co-designers we had in the beginning that it was not only SLPs that could be KomTil trainers. Our very first group of KomTil trainers when we were still a research and development project was a good group of SLPs, but also OTs and PTs. We had a few nurses, we had a nursing assistant. I think that is almost what I'm most proud about, especially when I look at those trainers today. They got trained, I think it was back in 2018 we did that. Here where I live, the local hospital is just down the road. When I speak with that nursing assistant and nurse on the acute neuro ward and listen to them still doing the training, still inspiring their colleagues, I get inspired, and I get very proud as well.

Katie: What a beautiful thing. I mean, that's just oh wow!

Jytte: Yeah. Also, I guess it's different because in the beginning, it was very much assumed you had to know a lot about aphasia to be able to train CPT. But I think we have cut it down to a model. Yes, there is information about training, but what is really needed in order to be a good communication partner is not necessarily a lot of knowledge about aphasia. Many of them know something because they work with people with aphasia, but it's a lot about how best to communicate with people with aphasia, and then training in it. So, really just practice, practice, practice. We have continued using that model. At the moment, I'm training a group together with a colleague in Iceland online. I also train with another colleague, some Danish healthcare professionals, and again, not just SLPs. We have a nursing assistant, nurse, and special education teacher onboard in our current group. So, the model is like that.

You are also asking, "How can you become a KomTil trainer?" At the moment, we have been charging a little bit here in Denmark when we have trained people. The group in Iceland is my second group outside the country. My second online teaching experience and the first teaching experience was a very mixed group. I got contacted together with Suzanne Beeke, who works with CPT for family members, by the World Federation of Neurorehabilitation because some, not necessarily only SLPs, also medical doctors and neuropsychologists, were interested in receiving training. That was right 'bang' in the middle of the pandemic, so we met with them sometimes online. Well, they're all over the world, so we had to do that anyway. Then we agreed to make an online KomTil training for them. Now there are KomTil trainers in Egypt, Colombia, Serbia, Austria, and Greece. That was a crazy experience, but very fun. Some of the countries have really started using this and have trained their colleagues.

Katie: Wow, what an impact. What an impact. So, how many hours is the training for the train-the-trainer? What kind of investment of time do they put in?

Jytte: So, when we do the face-to-face package here in in Denmark, it's four full training days. We usually see them once a week for four weeks and would usually prefer a two-week break in the middle because we would like them to go out and use the KomTil strategies and tools themselves as well. When we have been training online, it's not just the training, we're also talking to them about how best to take a tool from one cultural context and not just do a linguistic translation, but also do a cultural adaption. But you can't meet for four full days on Zoom, you would go bananas. So, what I do with the group from Iceland at the moment is meet with them five times spread over five months. We expect them to read more and be a bit more proactive in acquiring this program because we can't be face-to-face so many hours online.

Katie: I love that there's some adaptability in that. That's great.

Jytte: What they then learn when they become a trainer is to give what we call the basic training. The training package is developed for their colleagues then. It's a two times three hours training. Again with a two-week break in between so you can go out and do some practice from time one to time two. A part of the train-the-trainer program is also adult learning strategies, implementation, implementation science, and I think we change a little bit every time we do this. Because we are not there yet, and we probably will never be. But what we hear from our trainers is, "Oh, it's so hard to get out and implement this, we really need more knowledge than that." So that's really what we are very much working on at the moment. To be a bit more sharp in how to talk about implementation and how to get some good strategies out to people that need to not just convince their managers to spend time, but also get the trained colleagues to use the strategies that we taught them. And not just for the first month, but for the rest of their working career with people with aphasia.

Katie: Absolutely. Well, this all just sounds fabulous. And it sounds like it's working. But how do we know for sure? Have there been any measures that have been developed for the training?

Jytte: Yeah, we did develop some measures. Not exactly as a part of this project because so many clinicians here in Denmark also use SCA. They still should do that, I think it's a great program as well. Together with Lise from University of Copenhagen, and Iben Christensen and students we developed the Health Professionals and Aphasia Questionnaire, HPAQ, and it has been tested. It's a 16-item, self-report questionnaire. It can be given pre-post training to the participants (i.e., the health care professionals). It's really measuring if they think that they have become better. "Do I know what to do when I don't understand a person with aphasia? Do I know what kind of support I have in the system? Do I know what to do when things go wrong?" But it is measuring it from one side. We still need outcome measures or tools to measure the exact conversation, but that could be an observation tool. Many of you know that Aura Kagan developed that for her SCA training. There's the Measure of Support in Conversation and Measure of Participation in Conversation.

Katie: Yeah, we can put those references and the HPAQ in the show notes too if people are interested in checking that out more.

Jytte: And then we need an outcome measure for people with aphasia. But of course, you can't measure that "you have been speaking with staff that was not trained, and then they went on training, and now they maybe speak with you in a different way" because people with aphasia would be hopefully long gone from that hospital or wherever the training took place. But it would be nice with an outcome measure measuring the communication accessibility and the level of support. The Aphasia Institute has done the different CAMS measures (the Communication Accessibility Measures in Stroke), I think it is.

Katie: I believe so too, yeah.

Jytte: There is a version for frontline staff, there is a manager's version and there's also a version for people with aphasia, but it's very lengthy. And it has not been developed for this purpose, so I think there's still a gap there to be filled out.

Katie: Yeah, but some great things in the works and the HPAQ currently available. Fantastic. Well, I know in some of our previous conversations that this original project had some grant funding, but I believe that's ended now. But the program is still running today, and as you've been talking about, it sounds like it's growing, which is amazing. Can you share how the project has been sustained?

Jytte: Yeah, I have already said a little bit about the nurse and the nursing assistant down the road. So, we have those KomTil trainers from the first group of trainers. We have the training course we are doing face-to-face at the moment in Denmark, it's our third one. Hopefully we will be able to offer those training courses in the future as well. I know I'll be giving one with a clinical colleague later this year. Here, I'm connected with University of Southern Denmark, and I teach future SLPs. They have an elective course in our master's program that they can choose. They get the train-the-trainer training if they choose that course. So, hopefully lots of clinicians will come out here. The first 25 came out last year, and I'll repeat it later this year in the fall.

Katie: Fantastic. Well, you talked about that this is really something that started in Denmark, but that has grown into a more global effort. I know you recently had a publication in 2022 in International Journal of Speech-Language Pathology (IJSLP) with some colleagues that aligns with the Sustainable Goal Development 17. Can you tell us a little bit about that? I'm not sure if I know all about that, and I'm not sure if our listeners do, but talk to us about the importance of that.

Jytte: Yeah. So, the Sustainable Developmental Goals 17 is about partnerships, especially partnerships between developed countries and developing countries. That was really the idea when we first got in touch with the World Federation of Neurorehabilitation. I forgot to mention India, actually, when I mentioned all those countries. It was India, Egypt, at that point, also a physician from Kazakhstan. So, different developing countries where the SLP services are not necessarily that good, and that are maybe even more dependent on other healthcare professionals knowing something about aphasia and being able to communicate with people with aphasia. Maybe there are not at all or very few SLPs at hand. So, that was really what the project was about at that point. Then we ended up sort of sticking the Sustainable Developmental Goals to the whole framework of the work we have done because it was a special issue (in IJSLP) on the UN Sustainable Developmental Goals.

Katie: Wow, that's just amazing. As I'm listening to all of the things that we've talked about today, really CPT training takes a community effort, right? It really seems like it takes a lot. I'm sure a lot of our listeners, and myself included, are thinking, "Wow, this is a really big effort. I'd love to see something like this happen in my own community, but it just seems so big." Do you have any tips that you could share with clinicians or researchers who are listening who might be interested in starting something in their own facility or region?

Jytte: Yeah, I could say many things. First of all, I think I will say "just do it". I mean, the whole story I have told here is that in Denmark, it has all been very grassroot-led. It was clinicians thinking this was interesting, let's go to Toronto. It was clinicians asking managers or their colleagues, "Why don't we teach you some strategies for you to be able to better communicate with people with aphasia?" And get some training. I know there's online training available, the Aphasia Institute. Get in touch with me maybe to see what we could do together. I think there are several people that could provide some training to you. Then go out, find your people that would advocate for this as well. Try to tell other healthcare professionals the consequences if we are not able to communicate well with our patients/clients with aphasia. There are so many devastating consequences, as many of you would know already. Also, when we just look separately at the healthcare system. Like we know that people with aphasia are communicated with less when they are hospitalized, they are at greater risk of different types of adverse events, they fall more. Maybe they take the wrong medication because they don't understand what we have taught them. They have longer hospital stays, they are at risk to get back into hospital again because of different things when they are discharged home. So many devastating consequences should talk to everyone really, no matter if you are a manager, or if you are the staff on the ground, that you should do this. I'm sure everyone would be a better healthcare professional if they have those strategies and tools in their working toolbox. It's not enough to be a great nurse, you also need to be a great nurse that can communicate with people with aphasia, in order to be a great nurse to that specific group of patients that you're serving.

Katie: Absolutely. Well, I love this! You're inspiring. And the "Just do it." I hear your message also in that we need to get out of our offices and really go out and start collaborations with colleagues. Beautiful.

Jytte: And I know many people do that already. Value that, but also spread it more. I know of many people training ambulance drivers and all sorts of staff. I think this could go on at so many different levels of healthcare and community.

Katie: I agree. You've got my wheels turning too. I spoke last month to the Michigan Stroke Program, and they are primarily frontline providers and a lot of EMTs, and so it makes me think a little bit about that continuum of care. I love it. Well, as we wrap up, any final thoughts you'd like to share with our listeners?

Jytte: Oh, that's a good question. I have already said "go out and do it". I'm sure that so many of you support communication with people with aphasia every day. So many of your colleagues are already watching you when you do it. So, try to be a bit more expressive about that and say, "This is what I usually do, could you maybe try to do this?" It doesn't need to be complicated. That's really what we have tried to build into this model that I have talked to you about today. Don't start with pictures and keywords if you think that is complicated and not natural for your communication style. We can get most people to ask yes-no questions, or sit down, have a quiet conversation, and be respectful and slow down the pace. As we have said many times when doing this training, this is not rocket science at all. Many of us are doing this but teach everyone you meet on your road when working with people with aphasia to try to do some of the same things.

Katie: Absolutely. Well, Jytte, it's been a fabulous conversation. Thanks so much for joining us today.

Jytte: Thank you, Katie. It has been so nice to be able to talk about this.

Katie: Lots of food for thought. So, listeners, check out the show notes. I'll have all the links to the articles and the KomTil visual that you'll really want to make sure you take a minute to download and some other things that we talked about during today's conversation.

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

Contact information for Jytte Isaksen – Email [email protected] Twitter @jytteisaksen

Resources

Aphasia Institute - Supported Conversation Training – https://www.aphasia.ca/communication-tools-communicative-access-sca/

Aphasia Institute – Communication Access for Measures for Stroke (CAMS) https://cams.aphasia.ca/

Aphasia Institute- Measure of Skill in Conversation (MSC) and Measure of Participation in Conversation (MPC) https://www.aphasia.ca/health-care-providers/resources-and-tools/rating-scales/

Bertram, M., Isaksen, J., Toft, L. E., Olsen, A. M., & Breckling, M. (2021). Evaluering af projekt Forløb for borgere med afasi samt afrapportering af implementeringsopfølgningen KomTil – fra udvikling til drift. Unpublished report from University of Southern Denmark.

Cruice, M. Johansson, M. C., Isaksen, J., & Horton, S. (2018). Reporting interventions in communication partner training: A critical review and narrative synthesis of the literature. Aphasiology, 32(10), 1135-1166. https://doi.org/10.1080/02687038.2018.1482406

Isaksen, J., Beeke, S., Pais, A., Efstratiadou, E-A., Pauranik, A., Revkin, S. K., Vandana, V. P., Valencia, F., Vuksanovic, J., & Jagoe, C. (2022). Communication partner training for healthcare workers engaging with people with aphasia: Enacting Sustainable Development Goal 17 in Austria, Egypt, Greece, India, and Serbia. International Journal of Speech-Language Pathology. https://doi.org/10.1080/17549507.2022.2145355

Kagan, A. (1998). Supported conversation for adults with aphasia: Methods and resources for training conversation partners. Aphasiology, 12(9), 816-830. https://doi.org/10.1080/02687039808249575

Kagan, A., Black, S. E., Duchan, J. F., Simmons-Mackie, N., & Square, P. (2001). Training Volunteers as Conversation Partners Using "Supported Conversation for Adults With Aphasia" (SCA): A controlled trial. Journal of Speech-Language-Hearing Research, 44(3), 624-638. https://doi.org/10.1044/1092-4388(2001/051)

Kagan, A., Simmons-Mackie, N., & Shumway, E. (2018). Revised rating anchors and scoring procedures for Measure of Skill and Measure of Participation in Conversation between adults with aphasia and their conversation partners. Toronto, ON: Aphasia Institute. Retrieved from https://www.aphasia.ca/wp-content/uploads/2020/05/VF-MSC-MPC.pdf

Kagan, A., Simmons-Mackie, N., Victor, C. J., & Chan, M. T. (2017). Communicative Access Measures for Stroke: Development and evaluation of a quality improvement tool. Archives of Physical Medicine and Rehabilitation, 98(11), 2228-2236.e5. https://doi.org/10.1016/j.apmr.2017.04.017

Randrup Jensen, L., Fromsejer Heiberg, R., Isaksen, J., Berg-Beckhoff, G. (2021). Psychometric properties of the Health Professionals and Aphasia Questionnaire (HPAQ): a new self-assessment tool for evaluating health communication with people with aphasia. Aphasiology, https://doi.org/10.1080/02687038.2021.1900534

Simmons-Mackie, N., Raymer, A., Armstrong, E., Holland, A., & Cherney, L. (2010). Communication partner training in aphasia: A systematic review. Archives of Physical Medicine and Rehabilitation, 91, 1814-1837. https://doi.org/10.1016/j.apmr.2010.08.026

Simmons-Mackie, N., Raymer, A., Cheney, L. (2016). Communication Partner Training in Aphasia: An Updated Systematic Review. Archives of Physical Medicine and Rehabilitation, https://doi.org/10.1016/j.apmr.2016.03.023

Acknowledgements – A special thank you to Serena Chase from the Strong Story Lab at Central Michigan University for her assistance in the transcription of this episode.

Please note: Be sure to scroll down to the next page to find the KomTil visual and citation.

Cite as: Bertram, M., Isaksen, J., Toft, L. E., Olsen, A. M., & Breckling, M. (2021). Evaluering af projekt Forløb for borgere med afasi samt afrapportering af implementeringsopfølgningen KomTil – fra udvikling til drift. Unpublished report from University of Southern Denmark.

Welcome to this edition of Aphasia Access Conversations, a series of conversations about topics in aphasia that focus on the LPAA model. My name is Janet Patterson, and I am Research Speech-Language Pathologist at the VA Northern California Health Care System in Martinez CA. These Show Notes follow the conversation between Dr. Chaleece Sandberg and myself, but are not an exact transcript of the conversation.

Dr. Chaleece Sandberg is Associate Professor in the Department of Communication Sciences and Disorders in the College of Health and Human Development at Penn State University. She directs the Semantics, Aphasia, and Neural Dynamics Laboratory (SANDLab), which focuses on finding ways of optimizing language therapy for adult language disorders, with a primary interest in aphasia. Specifically, work in the SANDLab explores the neuroplastic processes that take place during successful therapy and how to enhance these processes. Additionally, SandLab work explores how cortical reorganization due to aging affects the way we interpret the cortical reorganization that results from language therapy.

In today's episode you will hear about:

1. the importance of impairment-based treatment in a person-centered approach to aphasia therapy,
2. the role of linguistic complexity in selecting treatment stimuli and supporting generalization,
3. how speech-language pathologists can add aspects of counseling to treatment activities.

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Dr. Janet Patterson: Welcome to this edition of Aphasia Access Conversations, a series of conversations about community aphasia programs that follow the LPAA model. My name is Janet Patterson, and I am a Research Speech-Language Pathologist at the VA Northern California Health Care System in Martinez, California. Today, I am delighted to be speaking with my friend and research colleague, Dr. Chaleece Sandberg. Dr. Sandberg is associate professor in the Department of Communication Sciences and Disorders in the College of Health and Human Development at Penn State University. At Penn State, she directs the SANDLab, that is the Semantics, Aphasia and Neural Dynamics Laboratory. Efforts in the SANDLab are aimed at finding ways of optimizing language therapy for adults with language disorders, with a primary interest in aphasia. Specifically, the lab explores the neuroplastic processes that take place during successful therapy and how to enhance these processes. Additionally, the lab work explores how cortical reorganization due to aging affects the way we interpret the cortical reorganization that results from language therapy.

In 2022, Chaleece 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 this well-deserved honor, Chaleece.

Aphasia Access collaborates with the Tavistock Trust for Aphasia in selecting the awardees and is pleased to have the opportunity to discuss their work and the influence of the Tavistock award.

Welcome Chaleece, to Aphasia Access Conversations,

Dr. Chaleece Sandberg: Thank you so much for such a lovely introduction. I'm so glad to be here doing this with you and I'm so thankful to the Tavistock Trust for this recognition.

Janet: Chaleece, as we said, you were named a Tavistock Trust Distinguished Scholar USA for 2022 and join a talented and dedicated group of individuals. How has the Tavistock award influenced your work, both your clinical and your research efforts in aphasia.

Chaleece: So, first of all, I am so incredibly honored to be recognized as belonging to such an amazing group of scholars. These are definitely people that I admire, and I look up to and I want to be more like, and so receiving this award is not only supporting my ability to push some ideas forward that I've been having, but it's also giving me more confidence to go all in and make quality of life, an even larger focus in my teaching and research.

Janet: That is terrific to hear, because I think quality of life is so very important for all of us. We sometimes forget that idea when we get focused on our treatment or specific treatment protocol. In preparing for this interview Chaleece, I read several of your publications, including your work in treatment for lexical retrieval, and the Theory of Complexity. Would you briefly describe this theory and your work in this area?

Chaleece: I'd love to. The Complexity Account of Treatment Efficacy was introduced by Cindy Thompson, who is actually my research grandma, Lewis Shapiro and Swathi Kiran, who was my Ph.D. mentor. What they were finding was that while they were doing the Treatment of Underlying Forms, which is a treatment that supports sentence processing, when you train more complex sentence structures, like object class, something like, "It was the porcupine who the beaver hit", right, you're going to get generalization to not only other object clefts, but simpler structures, like WH questions, so something like, "Who did the beaver hit?" Using this logic, Swathi started exploring the effects of semantically based therapies for word retrieval and found that training atypical words in a category promotes generalization to typical words in that category. The idea is that you're basically training this wider breadth of information that applies to more items. In the case of typicality, you're training semantic features that are really characteristic of these atypical items, like that "a penguin doesn't fly but swims", and that you're also training these really typical features that apply to everything in that category, like, "a penguin lays eggs like most other birds".

In my work, I've extended this logic to training abstract words. Now with abstract words the mechanism of generalization is slightly different. Rather than words sharing semantic features, they share associations. So, we train words in thematic categories, like "hospital" and "courthouse", where there are these strong associative links between abstract words like "diagnosis", and concrete words like "doctor". The reason that it's more beneficial to train abstract words rather than concrete words is because they have a wider range of these associative links, so they can activate more concepts when you get that spreading activation within the semantic system. We've started calling it Abstract Semantic Associative Network Training for that reason, or it's AbSANT for short.

Janet: I think that is so fascinating. It makes sense because you're looking at a way to optimize therapy, which is what the SANDLab is all about. How can we, from a theoretical perspective and with data to support what we're doing, how can we be as efficient as possible in achieving the outcome that we would like to have for a person with aphasia? I think it's a perfect example of theoretically based treatment.

That leads me though, to the next question to say, I love your research. And I love that it's taken however many years and starting with grandma, Cindy and then Swathi, and now you. That's a lot of effort and a lot of work that clinicians don't have. The theory is so powerful, so I'd like to ask you, what are your thoughts on actions that clinicians might take to easily incorporate these treatment principles, or this treatment, into their clinical activities.

Chaleece: I've tried to really consider clinicians and keep clinicians in mind when I've been thinking about AbSANT. One thing that I've done is, I've made absent available for free on my lab website (SANDLab). There's also a tutorial published in Perspectives of the ASHA Special Interest Groups. And the idea is that that's kind of an easy to go to for clinicians. And even though we've only actually used a couple of categories in our research, so we focused on courthouse and hospital, we actually did norming on I think it's 17 categories, thematic categories, like football and holidays. And all of those words are available on the website, I also don't see why you can't create your own categories that are going to be personally relevant for your client.

One of our AbSANT clients that we had in our research study, after they were done, the husband wanted to continue to work with his wife on words for the holidays, actually. And so we talked about it, and he came up with some words in the category Christmas, that would be good targets, and they went off and used it. And it helped. They were very happy.

Janet: Kudos to you, Chaleece, for doing it like this. What you just described, about a person sitting in therapy and using your words and what you had created, and then going off and creating their own with your assistance, that is exactly what I think should be happening, as we think about therapy. That feeds quality of life, that feeds a person's ability to move back into whatever they want their life to be. Kudos to you for making this freely available to clinicians. They don't have to go digging into research papers or into journals to find and to piece together your work, it's there on your website. By the way, the link to your lab and this information will appear in the Show Notes that accompany this recording. So, thank you for that. I appreciate it. And I know clinicians will as well,

Chaleece: I understand being pressed for time, and I did want to make this as easy and accessible as I could

Janet: Chaleece, at the heart of your work in aphasia, as we just mentioned a few minutes ago has been optimizing treatment. One of your research interests supporting this direction, has been examining the neurological mechanisms that underlie behavioral change following treatment. Conducting research on this topic is challenging for many, many reasons. Yet, I think it's very important to aphasiology as we seek to understand the elements of a treatment protocol, and how the brain changes in response to stimulation. So, with that large question and that large research area, what have you learned from your work in this area?

Chaleece: You are right, it is a very challenging area to work in. One thing that is heartening is that my work seems to agree with some of the heavy hitters out there who are doing this work on a much larger scale. I think that in order to really get at the root of these questions, we do need these really large-scale studies across different sites that are going to be able to gather enough data so that we understand fully what's happening. But basically, it seems like no matter how chronic the person is, there is neuroplasticity related to treatment gains. We still don't really have a definitive answer regarding things like which hemisphere is better? Or is increased or decreased activation better? But it's looking like the answer is actually going to be quite nuanced and related to individual variability, which again, speaks to this idea that the more data the better. Luckily, there is a working group in the Collaboration of Aphasia Trialists, or CATS, that's working on this question. I am a part of that group and very honored to be a part of that group and contributing to this work. I do have some results from a pilot study that I did as a doc student. We found that left inferior frontal gyrus pars triangularis, so basically, Broca's Area appeared to be especially important for the AbSANT outcomes. We also found that when we saw generalization from the abstract to the concrete words, that areas that are normally responsible for concrete word retrieval, were being activated after therapy more so than they were before therapy. That's some nice evidence that generalization is actually affecting areas of the brain that are responsible for those items that are being generalized to. I have yet to analyze the data from my current study but stay tuned.

Janet: Oh, we will. I think that there's a large body of data, as you said, from other people who've done larger studies, and lots of people have been focused on this question for a while, and you are as well. It's a bit daunting for clinicians, again, to think about how to wrap your head around the idea and the evidence. We all believe that the brain is changing, but to wrap your head around the evidence that says, "Well, how is this happening?" and, "What can I do that will facilitate it happening a little bit more quickly or a little bit more thoroughly?" So, I realize I'm asking you a speculative question that's sort of out there, but I'm going to ask it anyway. What are some of the ideas from your work that clinicians may find useful to think about on Monday morning, when they walk in to interact with their clients who have aphasia, and their family members and care partners.

Chaleece: I think one of the things that I really would like to underline is don't be afraid to challenge your clients. We actually learn better when we're challenged, and learning is what's going to cause those changes in the brain. Probably the most important thing that I would like for clinicians to take away from my AbSANT work is that it's worthwhile and not impossible to work on abstract word retrieval using a semantically based approach. Abstract words are so important for natural conversation. Training them seems to really help support retrieval of concrete words as well, and so you get more bang for your buck. I found that people, especially those with a little bit milder aphasia who are up for the challenge, really enjoy the metalinguistic discussion, and the chance to defend these really strong opinions that people have about the personal meanings of abstract words. And, again, the most important thing in terms of l the neural imaging in the neuroplasticity is that the brain always has the ability to change. I realize that our clients are later in life, they've had a stroke, maybe they're in the chronic phase of recovery, and they can still show neuroplastic changes. One of my highest achievers, in my study, when I was a doctoral student, both behaviorally and neurophysiologically, one of the people who showed the most neurological changes was 20 years post stroke.

Janet: That's amazing. When you talk about abstract language, it makes me think that so much of what we do, or at least as I look back on a lot of the treatments that we do, single words or visual nouns or concrete nouns, very simple, sometimes we say functional words. But then you step aside and listen to people talk and so much of what people's conversation contains is nonliteral words and abstract words. We don't talk like the words that we're using in therapy, and it makes perfect sense then, the way you're approaching this challenge of aphasia, to try to make your work more like what people with aphasia are going to experience during conversation. It's a big problem and a big challenge, but I think you're up to it, and I'm looking forward to seeing some of more of your work on AbSANT. Especially since it's such a challenging area of work. I appreciate you giving us specific suggestions of things that we might do Monday morning when we see our patients. So, this is not just a conversation and it's not just another academic lecture in how we think about treatment, but it has some very important real world applications for us. Thanks so much for that piece.

I'd like to switch for a few minutes, Chaleece, and talk to you about your interest and work in bilingual aphasia. How did you become interested in this line of work? And more importantly, what have you learned from your work in this area.

Chaleece: So, I've always been interested in learning other languages. I have actually attempted to learn a few languages and have not been that successful. But one thing that I realized while trying to learn these other languages is that I was really intrigued by the way languages work. As you're learning another language, you start to really kind of put the pieces together and see kind of under the hood of what's actually happening. And so, I got my undergraduate degree in linguistics, and I think that this kind of fascination with how languages work also partly fueled my interest in aphasia in the first place. I remember sitting in my language in the brain class, and a light bulb went off, I was like, "Oh, my gosh, this is exactly what I want to study!" This idea that this full language system that was completely developed, all of a sudden can get destroyed by damage to particular areas. And so, you know, that kind of set the stage for me wanting to study aphasia. And then when I got into Swathi's lab and she was doing bilingual research, I was so excited. I was like, "Oh, I am totally on board with this". So, I volunteered for all the bilingual studies that I could, actually not speaking any other languages myself, but realized that I can still research other languages, even if I don't speak them. That was kind of an "aha" moment for me, which was very nice.

During my Ph.D., I got to know Theresa Gray, who was a fellow doc student, and she and I became really good friends. After graduation, we immediately began a collaboration. This was good news for me because I had gotten a job at Penn State, and we're in Central PA and there is not a huge bilingual population there. But there is an excellent center for language science at Penn State started by Judy Cole, Janet van Hell and Carol Miller. That has really helped to support my efforts in understanding bilingualism in general, and bilingual aphasia. So, the work that Teresa and I have done together has actually been really focused on getting culturally and linguistically appropriate materials out to bilingual clinicians. That was where we saw that we could do kind of the most good in this area.

But along the way, we found some really interesting patterns related to cross language generalization and language dominance and cognitive control. We've also had some really interesting insights from our students who've been working on these projects who have just made comments about the adequacy of the assessments that we're using. And so we're really starting to think about how that's going to affect what we know about people's languages that they speak as we're trying to figure out, you know, what's going on, after a stroke with these different languages. And it also just kind of brings to the surface, that there are so many limiting factors for individuals who don't speak English as their first language or don't speak English at all. There's such an enormous service disparity, at least in the United States, and work in aphasia research has been so English centric, that it's created these major barriers to having adequate services. But luckily, we're starting to kind of get on the ball a little bit, this field is receiving a lot more attention. There are some really great researchers on the case. I've been to some recent conferences where there have been a lot of great presentations. The Saffran Conference was dedicated to this idea, there was a great workshop by Jose Centeno. At the Academy of Aphasia, there were some really great presentations there on this topic. So I feel like we're, we're moving forward in trying to close the gap in services for people who are bilingual.

JANET: I agree with you on that. And many times, it's also on the clinician. Clinicians might be bilingual themselves, but they might not be. How can you best support the clinicians who does not share a language with the client or the family members yet still has to serve that individual? It's, again, another challenging area that you've undertaken the study. You are busy, I bet.

So in addition to everything you've been doing over all these years, I mean, the complexity and absent and bilingualism, you also have now added something to your area of interest. I'd like you to talk for a little bit about that, if you would, and that is your interest in counseling persons with aphasia. How did you become interested in that area of research? And I ask, because it just seems that there might be a story of a professional journey here. I love to tell stories and hear them, so I think this is a story that wants to telling.

Chaleece: All right, well, yeah, twist my arm.

Janet: Good, I was supposed to be twisting your arm, because I want to hear your story.

Chaleece: So, my husband and I, when we first got to Penn State, we became friends with a couple of people who are over in counselor education. The more we got to know each other and talk more about our work, the more we realized that we were missing a lot of information in each of our fields. I never had any training and counseling, and my friends, who were counselors, hadn't really heard of aphasia. One of these friends, you know, after we had started talking about aphasia, actually, her brother had a stroke and had aphasia and so this became a very personal topic for her. She's a rehabilitation counselor and I was so shocked to learn that this was not something that she had been taught in her training, not something that she had really come across. So, we decided to start lecturing in each other's classes, and start exposing each other's students to these ideas that we felt we had missed out on in our training. We also started digging into the literature, because we wanted to see exactly what was out there, like were we crazy and thinking that this was like missing information from each of our fields. And we weren't crazy, we weren't alone. There's a whole slew of professionals in mental health that don't know about aphasia and SLPs, on the whole appear to not feel adequately prepared to do any sort of counseling. So, we decided that we wanted to write a couple of papers to help practicing clinicians to provide counseling and for SLPs, to kind of understand more about counseling skills, and for counseling students to understand more about aphasia and things that they could do to help people with aphasia, and kind of bring more awareness to the issue. We also applied for some internal funding to start an interprofessional education project, aimed at better preparing our counseling students to work with people with aphasia and our SLP students to provide basic counseling. We're starting this in terms of a one off. We take one counseling student and one SLP student. We need to have them work together with a person who has aphasia, who's expressed some desire for counseling. Every semester we rotate out and have a new group. This has been such a rewarding experience. I've learned so much from my colleagues, the way that I teach my pastor students, the way that I run my research experiments, the way that I mentor students in my lab, all of that has changed so much, I kind of feel like my eyes have been open to this, this whole issue. In turn, I feel like I'm helping my students to be much more mindful in the way that they approach clinical practice and research to like, truly put quality of life first.

Janet: I think that's exactly right, and the way we should be thinking, and I agree with everything you said about counseling. We have a little project where we've been looking at motivation, which is different, I realize, but it strikes me that when you think about how we counsel and bring that into our treatment, and also think about motivation, or patient engagement and bring it into treatment, there's so much more that helps us facilitate behavioral change in a patient than just a specific treatment protocol that we're delivering. Because if we haven't got someone who we can empathize with or we can connect with or who's interested in change or understands why we're doing what we're doing, it's going to be a very long road, if we're only focused on the impairment based or the specific treatment protocol. So, I think it's great that you're exposing your students to different professions and really thinking about counseling. It's a great idea.

So that's a big journey that you've undertaken, and I'm sure it's not stopping here. It's an interesting journey. It's more exciting as I hear you talk about it; I hear the excitement in your voice and the passion in your voice. It's almost like you want to do everything, but of course, you have to go to sleep, and you know, there are limitations.

Chaleece: Right, right. Yeah, all of those things, right?

Janet: Yeah. Oh, exactly, exactly. But I will bet that you have a lot of new ideas out there and you are considering some next steps, both in clinical research and clinical activities. I heard this story of starting from a linguistic basis and maybe focused impairment, and now you're completely coming around, I don't think it's full circle, I think it's more like full spiral. You're still thinking about complexity and AbSANT, but you've got other pieces that I think will make a rich program. What are your new ideas that are percolating in that brain of yours that you'd like to see move forward?

Chaleece: So, I've applied for sabbatical? I haven't heard back yet whether or not I've received it, but I'm hoping that I can spend the next year focusing my efforts, specifically on what I see as being health disparities. It is related to both bilingualism and mental health and aphasia. So one of the things that I'm really interested in is, is expanding our IP program for counseling and SLP students. I'm also hoping to work with Jose Centeno to work to address service disparities in bilingualism. I know that that's a really big topic of interest for him and our interests seem aligned on there. I'm excited to learn more from him. I'm planning to meet with Amy Dietz and work with her to think more about some of these holistic approaches to aphasia rehabilitation. I've really enjoyed hearing about her yoga program that that she's been doing. I've always had this kind of nagging thought this was something that she and I kind of talked about and really connected on, it kind of goes back to interprofessional practice. It's this idea that we tend to ignore all of these other things that we don't see as being language related, right? We don't think about diet and exercise and sleep on cognitive outcomes. But there's so much research out there showing how these things can affect your thinking. So they must be affecting the rehabilitation outcomes in people with aphasia.

I have been interested in the role of exercise in aphasia rehabilitation, we I'm part of an am CDs writing group, and we did a review looking at the effects of exercise and aphasia. There's just a huge gap in the literature. So it's definitely an area that we should be focused on. I don't currently have an exercise research project going but, in the meantime, I have actually partnered with Francine Cohen at Temple to establish Aphasia Cycling Club. This thought had been in the back of my mind for a long time, my husband and I are avid cyclists. And I thought, you know, if people with aphasia could find this much joy in in cycling, and if they could do it together, like that would be great. But then I hesitated because I thought, you know, would they actually be interested? Is this something that anybody wants to do? Am I just a freak, because I like cycling, and I think everybody else should. But I decided to go ahead and reach out through the ARCH network, and I got a surprisingly positive amount of responses back that people were really jazzed about this. Frannie was one of those people that got back right away and said, "I am an avid cyclist, and I would love to do this." So, I got really excited about it. I got pushed a little bit in the direction by Deb Myerson and Steve Zuckerman, because I don't know if people are aware, but they did this stroke across America campaign where they rode from Northern California all the way to Boston, to spread awareness for aphasia, they have stops along the way. I recommend looking it up because it's a very inspiring journey that they took. These things got me thinking that this could work. We've started meeting with some physical therapists and adaptive sports people in Philadelphia and in Hershey so far, to try and get this going. We're hoping to try and get some people in Pittsburgh as well. We're super excited about where this could go. If anybody listening to this has any suggestions, please contact me. I'm happy to receive any sort of feedback and suggestions that people have to offer.

Janet: What a terrific idea! Francine is such an enthusiastic person and. I think with the two of you leading this, it's just going to grow greatly, I think sometimes as we talked earlier, we get so focused on the language, we forget the people with aphasia would like to do other things. Or maybe they did other things before they had their strokes, and perhaps they have some physical challenges right now, so we tend not to think about bicycling. I think it's awesome. A Bicycle Club. That's wonderful.

Chaleece: I hope it works out. I hope that it provides people with as much joy as it's provided me,

Janet: I bet it will. I can see you doing something like, even if there's someone who has aphasia, who simply cannot end up riding, but if you have riders, and you take videos, and you involve the people who cannot ride with you in that manner, well, that also achieves a quality of life goal. I think.

Chaleece: That's a great idea.

Janet: Good. I hope it works out. I think of that because we have an friend who's an avid bicyclist, and he always straps on his head camera and will post his videos all the time about places he goes. Your cycling group, your aphasia cycling club, can do the same thing. What a great idea, I look forward to seeing it actually happen and seeing the videos that you make and the work that you do.

Chaleece, as we bring this conversation to a close, I would like to ask you to reflect on your interest in aphasia, your work with persons with aphasia and their family members and care partners, and in particular, your amazing journey from starting as a linguist to developing a bicycle club for people with aphasia. And I'm wondering if you have any pearls of wisdom, you might share with our listeners, or what I sometimes like to call Monday morning practices. And by that I mean ideas that clinicians can incorporate into their busy practices quickly and easily to perhaps change their thinking or change how they engage with clients.

Chaleece: In reflecting on my journey, I really maybe just to encourage other researchers to think about, so I started out really kind of focused in this kind of an impairment based mode, and gradually moved over to this person centered care, but I haven't discarded the idea of impairments based treatment, right? The idea is that you just kind of, house that in, you know, you fold it in to your person-centered care to the life participation. From my own research, the things that kind of float to the surface for me are, first that the brain can change long after the chronic stage has started. This, this idea of a plateau, I know that I feel like I'm preaching to the choir, probably about this idea, but it's still kind of amazing to me, how many people still feel like this is there's a plateau, right.

The other is not to be afraid to work on challenging tasks, like digging into the meanings of abstract words. With supportive conversation I found that this can be very rewarding, even for people who have very limited verbal output. In terms of I don't know, Monday morning practices like something easy to incorporate. I feel like I'll my pearls are kind of borrowed. There's a great one that I borrowed recently from Linda Worrall's amazing presentation as IARC. She suggested a way to form a simple habit was to just ask two questions at every treatment session. This could be a small change just to form better counseling habits as SLPs. She suggested at the beginning of the session to ask, "How are you feeling?", which is a very different question from "How are you doing?" It allows people to open up a little bit more and actually talk about how they're feeling. Then at the end to ask, "What is the best thing that you're going to do today?" I started doing this as soon as she mentioned, I'm like, I'm going to do this. And I did it. I started doing it with all of my clinical research sessions that I do. It's really helped me to form better relationships faster with my research clients. I feel like they are telling me more about themselves. They really open up at the beginning of the session telling me how they're feeling, and that actually helps me to gauge how I go about this. Yes, for treatment research, you have a protocol, right? But the way you go about these treatment steps, you know, you can frame them in different ways, right? If I have a client who's feeling very anxious, I can say before each thing that we do that's challenging, I can say, "Okay, take a deep breath. All right. Now let's do this. This piece of the puzzle." That seems to really, really help, It helps me to know where my clients are at to begin with, and asking "What they're doing? What's the best thing that you're doing today?" It's just so much fun to hear people get really excited about what they're doing. Sometimes they might say, "Well, nothing today, but tomorrow, I've got this great thing planned." It's a really nice way to end the session on a really positive note,

Janet: Borrowed or not, those are excellent pearls, and they are simple things that we can do. I do remember Linda Worrall's talk that you were referring to. It makes so much sense. We have these grandiose ideas, but you have to start with a couple of small things and how can you change your behavior tomorrow, very small, but that will pay great dividends. It sounds like those changes have paid great dividends for you already in your research sessions.

Today's conversation for me, has been exciting and interesting and thought provoking and would like to thank my guest, Dr. Chaleece Sandberg for sharing ideas, results, outcomes and thoughts from her clinical research journey in aphasia. Chaleece I greatly appreciate your taking the time to speak with me today, and again, congratulations on receiving a Tavistock Scholar Award.

Chaleece: Thank you so much. This was delightful. I

Janet: would also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcasts and learning from all of the guests that we've had over the years.

For references and resources mentioned in today's show, please see our Show Notes. They are available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, please email us at info at aphasia access.org

For Aphasia Access Conversations, I am Janet Patterson and I thank you again for your ongoing support of aphasia Access

References

Kiran, Swathi, and Cynthia K. Thompson. "The Role of Semantic Complexity in Treatment of Naming Deficits: Training Semantic Categories in Fluent Aphasia by Controlling Exemplar Typicality." Journal of Speech, Language, and Hearing Research 46, no. 3 (June 2003): 608–22. https://doi.org/10.1044/1092-4388(2003/048

Mayer, J., Sandberg, C., Mozeiko, J., Madden, E. & Murray, L. (2021). Cognitive and linguistic benefits of aerobic exercise: A state-of-the-art systematic review of the stroke literature. Frontiers in Rehabilitation Sciences, 2. https://doi.org/10.3389/fresc.2021.785312

Sandberg, C. (2022). Tutorial for Abstract Semantic Associative Network Training (AbSANT): Theoretical rationale, step-by-step protocol, and material resources. Perspectives of the ASHA Special Interest Groups: 7, 35–44. https://doi.org/10.1044/2021_PERSP-21-00176

Sandberg, C. W., Bohland, J. W., & Kiran, S. (2015). Changes in Functional Connectivity Related to Direct Training and Generalization Effects of a Word Finding Treatment in Chronic Aphasia. Brain and Language, 150, 103–116.

Sandberg, C. W., Nadermann, K., Parker, L., Kubat, A. M., & Conyers, L. M. (2021) Counseling in Aphasia: Information and Strategies for Speech-Language Pathologists. American Journal of Speech Language Pathology, 30(6), 2337-2349.

Thompson, C. K., Shapiro, L. P., Kiran, S., & Sobecks, J. (2003). The role of syntactic complexity in treatment of sentence deficits in agrammatic aphasia: The complexity account of treatment efficacy (CATE). Journal of Speech, Language, and Hearing Research, 46(3), 591–607. https://doi.org/10.1044/1092-4388(2003/047)

Worrall, L. (2022). The why and how of integrating mental health care into aphasia services. Presentation to the International Aphasia Rehabilitation Conference. Philadelphia PA, June.

URLs

AbSANT Abstract Semantic Associative Network Training. SANDLab. https://sites.psu.edu/sandlab/projects/absant/

Academy of Aphasia

https://www2.academyofaphasia.org/about/

ANCDS Academy of Neurologic Communication Disorders and Sciences.

www.ancds.org

ARCH Network Aphasia Resource Collaboration Hub

https://aphasiaresource.org

Collaboration of Aphasia Trialists

https://www.aphasiatrials.org/

Eleanor M. Saffran Conference

https://www.saffrancenter.com/conferences

Stroke Across America

https://www.stroke.org/en/stroke-connection/stroke-onward/stroke-across-america

Interviewer info

Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic communication impairments. 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 Marie-Christine Hallé about her work on including significant others in aphasia rehabilitation, communication partner training, and knowledge translation.

Gap Areas

This episode focuses on Gap Area #4, markedly insufficient training and education of family or carers regarding aphasia and communication strategies; and Gap Area #9, lack of services specifically for family members of people with aphasia across the continuum of care.

Guest info

Dr. Hallé is a lecturer at the University of Quebec at Trois-Rivières and the coordinator of SAPPA, a service for significant others of people with aphasia in Quebec Province, Canada. She completed a PhD in speech language pathology at University of Montreal, and a postdoctoral fellowship in knowledge translation at McGill University. Her work aims to support the inclusion of significant others in aphasia rehabilitation, as well as communication partner training. To promote the uptake of these best practices, she studies professional competency development among speech language pathology students with respect to evidence-based practice and counseling, as well as professional practice changes among clinicians. She is a recipient of the 2022 Tavistock Trust for Aphasia Distinguished Scholar Award.

Listener Take-aways

In today's episode you will:

• Learn about changes in family relationships due to post-stroke aphasia.
• Understand how speech-language pathologists can support significant others of those with aphasia across the continuum of care.
• Identify barriers and facilitators to implementing communication partner training.

Edited show notes

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 impairments 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. Marie-Christine Hallé, who was selected as a 2022 Tavistock Trust for Aphasia Distinguished Scholar, USA and Canada. In this episode, we'll be discussing Dr. Hallé's research on significant others' experiences of post-stroke aphasia, communication partner training, and knowledge translation.

Dr. Hallé is a lecturer at the University of Quebec at Trois-Rivières and the coordinator of SAPPA, a service for significant others of people with aphasia in Quebec Province, Canada. She completed a PhD in speech language pathology at University of Montreal, and a postdoctoral fellowship in knowledge translation at McGill University. Her work aims to support the inclusion of significant others in aphasia rehabilitation, as well as communication partner training. To promote the uptake of these best practices, she studies professional competency development among speech language pathology students with respect to evidence-based practice and counseling, as well as professional practice changes among clinicians. Marie-Christine Hallé, welcome to the Aphasia Access podcast. It's great to have you here.

Marie-Christine Hallé

Thank you.

Lyssa Rome

I wanted to start, as we often do, with asking you about whether you've had any "aha" moments—significant experiences that were critical in your development as a speech language pathologist?

Marie-Christine Hallé

Great question. In fact, I have an "aha" moment, which is also kind of an "uh-oh" moment—like the perception of a problem.

When I first began to work as a speech language pathologist in rehabilitation, I was very interested and motivated to work with people with aphasia and their significant others as well. I had completed my master's in speech language pathology, during which I had done a research project. I had read transcripts and analyzed interviews of significant others of people with aphasia. It raised my awareness regarding what significant others can go through—the challenges that they can have when communicating with the person with aphasia.

So I was really motivated to try to make a difference in their lives, to help them to better communicate with one another. But in my clinical practice, I had the feeling that I didn't actually succeed to go there. I was expecting to have these conversations regarding how to help them communicate with one another. But I was not seeing significant others that frequently. Or when I was seeing them, I sometimes had the feeling that the conversation I had with them was—not superficial—but I didn't get to the communication challenge I was expecting that I would get.

So this was kind of my "uh-oh" moment that motivated me to do a PhD. Because at this point, I was like, maybe we don't need to develop a new intervention, targeting significant others, maybe we need to better understand what is the experience of significant others? What are they what they are going through. And also to know about the experiences of speech language therapists as well. And if we better understand both experiences and how they fit with one another, maybe we can better try to actually help them and have the conversation I was expecting to have with them.

Lyssa Rome

That makes a lot of sense. I think a lot of us in clinical work find our ideals don't always match up with the reality. Right? And that specific, "uh-oh"/"aha" moment, brings us to the gap areas that we've been trying to highlight in the podcast. These are the gap areas that were identified in the State of Aphasia report by Nina Simmons-Mackie that was published in 2018. In our conversation in this episode, we're going to be focusing on two gap areas that you've identified here. The first one is Gap Area #4, which is markedly insufficient training and education of family or carers regarding aphasia and communication strategies. And the second is Gap Area #9: lack of services specifically for family members of people with aphasia across the continuum of care. So obviously, those areas are important to you and your work.

I wanted to continue by talking about how that "uh-oh" moment led you into some early papers, and early research that you did, looking at how aphasia changed relationships between people with aphasia and their care partners or significant others, and specifically, between mothers and daughters, where the mothers had post-stroke aphasia. So can you tell us a little bit about that research?

Marie-Christine Hallé

Yes. This research was conducted with four adult daughters of mothers who had aphasia, and we try to look at their relationships. We have identified how adult daughters helped their mothers and the different types of behavior that they could have. We identified how the type of behavior the daughter had was related to how daughters perceived their mothers.

So daughters could perceive their mothers as vulnerable or as having difficulty. They could also perceive her as having abilities. And sometimes when the major was seeing the mother as someone with difficulty or someone vulnerable, daughters would help their mother in a protective manner by doing things. Not at their place, but on their behalf or doing things for them. Like calling to take some appointment with a doctor, or sometimes censoring themselves, like avoiding some conversation. Like a daughter is saying that she had marital issue and she didn't want to worry her mother. So she would avoid having this discussion with her mother.

And the opposite, when daughters perceived more their mothers as having abilities, they would adopt trusting behavior. So encouraging their mothers to do things on their own, even if they may have some difficulty. So a daughter saying that she went to the bank with her mother, but she let her mother go and meet with a bank teller. Even if she saw her mom having some difficulties, finding her words, she let her mother try by herself. Or whenever they were using some communication strategies, recognizing that the mother had something to say. They were recognizing their competency. So that was a way of trusting her.

So we we kind of saw different type of relational scenarios, sometimes the mother could react by being satisfied, or sometimes being dissatisfied by the daughter's reaction. But we also identified how aphasia seem to complexify the adjustment to the relationship, because sometimes daughters seemed to avoid communication to solve their problem.

I have an example in mind of a daughter, who in the first place, kind of trusted her mother. She was living with her. She trusted her mother by going by herself to run some errands. So she left her mother alone in her house. So the daughter could go by herself go run some errands. But when she came back, she saw her mother was worried or crying. So she told herself—the daughter, she didn't speak about it with her mom, but she told herself, "I left my mother home, when I came back, she felt worried, I shouldn't do that again. Next time, I need to go to the grocery I'll wait for my mom to be somewhere else at an appointment. So I won't leave her alone." So instead of having an open discussion with the mother, asking, "What was going on? Are you worried? What could we do next time?", she decided by herself not to solve this problem through communication. So it shows how aphasia can make this adjustment more complex, because you need to adjust to life with post-stroke aphasia, you may need to take some new roles and responsibilities, but because of aphasia, you may kind of avoid the use of communication to actually solve this problem.

Lyssa Rome

It sounds like some of those trusting behaviors really had to do with recognizing the underlying competency of the person with aphasia, these mothers with aphasia, and maybe also their abilities. I'm wondering how, recognizing that and sort of seeing these different kinds of perceptions that the daughters had about their mothers and the mothers had about their daughters and their level of satisfaction or dissatisfaction—how did that influence your own focus in your work on how speech language pathologists involve significant others in aphasia care?

Marie-Christine Hallé

I think it had the influence about how important it can be for us as speech language pathologists to involve significant others to better communicate with the person with aphasia, but to help them reveal and recognize their competency through communication. So this was kind of the the influence it had. How we can see that through communication, or that the competency that you can reveal through communication could then have influence on the relationship and domains other than communication.

It can even lead to a virtuous cycle, where you communicate with one another, you see the other's competency during communication, but that can also foster some trusting behavior that can contribute to the person's autonomy. And at the same time as a caregiver, potentially, eventually less sense of burden, because the person can do things on her own. And the more the person does things on her own, the more you can see her as competent, as having abilities. That can nourish those trusting behaviors. So it's how we can connect what happens in communication, and what happens in the relationship outside communication as well.

Lyssa Rome

That makes a lot of sense to me. And I think that speaks to how central communication is for and how being successful in communication can have really broad impacts in the rest of someone's life and in their relationships and their sense of self as well. You've written about these experiences that significant others have of aphasia, and how that relates to their relationship with the person with aphasia in their life, and also their relationships with rehabilitation services. And I'm curious about if you could say a little bit more about what you've learned in those areas as you continue to study significant others and their experiences of aphasia?

Marie-Christine Hallé

Yeah, so by studying their experience of rehabilitation, what I learned is how significant others, when they get to rehabilitation after acute care, they get there in a state of being centered on the person with aphasia. So following the hospital, they may have feared to lose the person. They were there day in, day out at the hospital to take care of her, sometimes to speak on their behalf, making sure she receives good services. And then when they arrive in rehabilitation, they are in this state of being focused on the person with aphasia. So when they meet with health professionals, when they talk with health professionals, they talk about the person with aphasia. At the same time, health professionals respond by also being focused on the person with aphasia. So this kind of put significant others in the state of seeing rehabilitation as being about the person with aphasia, not necessarily about themselves. So this even influences their expectation of rehabilitation. If, for them, rehabilitation is about the person with aphasia, they will be satisfied by rehabilitation services as long as it fulfills their needs related to their caregiver role.

But what was really a revelation for me was also that what it can involve is that a significant other could speak of rehabilitation in really positive terms, saying, "Oh, that was a five star rehabilitation." So they are very satisfied. But at the same time, they could also talk about struggling in their everyday life, needing some respite or having some challenges, maybe communicating with one another. So this is something else that I learned—how there was this possible coexistence between being satisfied with the services, but at the same time, going through some difficult stuff, and all that, because the rehabilitation was associated with the person with aphasia.

Lyssa Rome

Right, so they're not expecting or maybe even getting the message early on that aphasia rehabilitation is about more than just the person with aphasia, and that they also could benefit from, say, speech language pathology services, is that is that right? Is that getting it?

Marie-Christine Hallé

Yeah, absolutely.

Lyssa Rome

Where does that bring us in terms of what clinicians should know about how we can perhaps do a better job of bringing significant others in—I don't know, earlier on or in more meaningful ways—so that they feel part of the rehabilitation process.

Marie-Christine Hallé

So I feel there's something about the message we tell them. Yes, they can be centered or focused on the person with aphasia, but we have to think about what is the message we tell them, as well. So should we maybe be more explicit in telling them that aphasia is a family thing? That aphasia, yes, it happens to one person, but it affects all people surrounding the person. To let them know that the rehabilitation process can be about them as well. So I think there's something about these kinds of messages we tell them.

We also found that sometimes it could not be comfortable for them to think about them or sometimes some of their needs could be more kind of implicit at certain points, like their need to have a better relationship or better communication with the person maybe more implicit. So those more implicit needs, maybe we can more explicitly bring them or introduce them to significant others, so that they can feel that it's legitimate to feel the those kinds of things.

We can open discussion by saying we know how for some people communication can be sometimes difficult. Or sometimes you can understand one another but sometimes the topics you have in conversation are not the same topics as before. Or sometimes you can feel frustration we've heard this from other significant others. What about you? So to make it to make it okay to feel this or to help them maybe identify those needs that may be more implicit at certain points. So to open the discussion, make it okay, tell them like very clearly that it can be about them, that we can be here for them as a family unit.

Lyssa Rome

What you're saying rings so true to me, and the importance of letting significant others know that their experience of aphasia is also important and also worth addressing. You also then studied, I think, maybe more generally, but maybe you can tell us more about what else significant others need from the rehabilitation process?

Marie-Christine Hallé

Well, by studying their experience of rehabilitation, and understanding that they were focused or centered on the person with aphasia, it helped to identify a variety of needs that significant others can have. Something that can be helpful is how we can associate significant others' different needs in relation to the different roles that they can have.

So when I said that significant others associate rehabilitation with the person with aphasia, or maybe themselves as caregivers, so there have they have needs as caregivers—the need to have information, the need to have tools to help the person with aphasia, the need to have hope that things are going to be okay, or the need to be part of the rehabilitation team, the need to feel that they are considered as a partner in this rehabilitation experience. Those can be some things we have identified related to the caregiver role.

But they also have other needs. Like I said earlier, when I talked about communication, so they can have the need to have a better communication with the person with aphasia, the need to have a better relationship with the person with aphasia, and this is more related to themselves being, well,l significant others or are people with an affective link with someone with aphasia. So, spouse, daughter, friend, and in their kind of role, they have their communication needs and needs to have better relationships. And when we think of significant others as patients themselves, we also identify that they have the need for support, the need to be supported, and the need for respite. So we can see this variety of needs.

Some of these were previously documented before my work. But this understanding of the rehabilitation process kind of helped to classify significant others with their roles. When you think of an iceberg, some needs are kind of outside of the water, or the obvious one that you see, those related to their caregiver role. And some other needs during their rehabilitation process, maybe when I say implicit, those that are hiding. Because they don't talk about those needs, or because they are still not clear to them to formulate them as needs so that they can ask for help.

Lyssa Rome

Can you say a little bit more about what some of those under the surface needs were that you were able to identify in these qualitative studies that you were doing?

Marie-Christine Hallé

Yes. So I remember a spouse, when she was talking about communication, she didn't say clearly or explicitly, "I want to have better communication with my husband." But she said, "evenings," I don't know how to say not "evenings are long, but that are less busy as before, like, not boring, but like the time is different now that their the way we spend our time together is different because we don't talk much to one another." So this is also what I mean by implicit—it's that there was this feeling of discomfort regarding communication, but it's not necessarily formulated as, "I want to better communicate." More at this point, it can be kind of a discomfort.

Lyssa Rome

Yeah, and it sounds like also maybe a sense of loss, right? We used to have this evening that was full of conversation, and now we don't have that anymore. Thinking about those needs both the explicit ones and the implicit needs, what role does communication partner training play in how we as speech language pathologists can support the significant others of people with aphasia?

Marie-Christine Hallé

I think it's by helping them to keep on using communication to maintain their relationship. You spoke earlier about the idea of loss—so, that the loss of the way communication used to be or the way the relationship was before. So to keep on communicating with one another, and to use communication to solve problems. Like when I spoke earlier of how aphasia can make it more difficult to adjust to life with aphasia. So, if we train communication partners to use different strategies to keep on communicating with one another, to find still enjoyable time to communicate, they can use communication more frequently for the pleasure of communicating, and also for the use of solving some problems they can have in relation to the new role and responsibilities they can have. To help them to keep on having frank and honest communication, like authentic communication. When they keep on talking about what they used to talk about, even if sometimes some subjects may be more complex. But how can we still get to some authentic, significant topics that they would like to talk about. Even perhaps, how it can help to have more balanced relationships. So because we talked about the needs significant others can have as caregivers, but they are not only caregivers. So if they don't want to feel only as caregivers—and the same thing for the person with aphasia, if the person with aphasia wants to feel that person as still a spouse, still a daughter, can the communication have something authentic, that still feels like their previous relationship? So not just as someone helping someone else. That's what I mean about this idea of a more balanced relationship.

Lyssa Rome

And I think that that really underlines the importance of communication partner training to the Life Participation Approach, right? Because if communication partner training is allowing people to fulfill other roles, other than just being a care partner, but also still being a spouse, still being a daughter, or a sibling, or in some other role—the original role—with his change of aphasia, then in order to support that, we as speech pathologists need to be able to really help people learn better communication strategies.

Marie-Christine Hallé

Yes, and when you were speaking, I was also thinking about, as you said, the these other roles they can have. You know, earlier I've talked about their need for respite, the need to be supported, and how we can even help them to have support from the person with aphasia. In this idea of balanced and authentic communication and relationship, it can be interdependent, right? So the spouse or significant other can help the person with aphasia, but if they want to stilll have the relationship they used to have when you can communicate and have the person with aphasia still play a role of support, that can also be a way to fulfill their needs. But yes, to make this connection with this Life Participation Approach, where both members of the dyad can play their the different roles that they can play in their social life.

Lyssa Rome

Yeah. Given the importance of that, it seems like that leads very clearly into some of your other work that involves looking at how speech language pathologists include significant others and how SLPs think about their work involving significant others. You did some really interesting research on that question. One of the things that really stood out to me in your paper was this idea that SLPs thought about working with significant others, as—and this is a quote from the paper—"a challenging bonus to the fundamental patient-centered approach." Can you explain a little bit more about that?

Marie-Christine Hallé

Yes. So this idea of the "challenging bonus" is while analyzing the data and the interviews, there was this dimension of bonus, like of a positive addition. When speech language pathologists were speaking of their work with significant others, they saw this as a positive addition to their fundamental approach. They were explaining that their focus was on the person with aphasia. That was the focus of their work. That was the focus of their intervention. And if they could meet with significant others, then that was like the cherry on top. The basis was working with the patient with aphasia. And the positive addition was, "Oh, well, if I can meet with the significant other, then it's even better than they can provide me some valuable information about the person with aphasia, then I can better adapt or tailor some intervention to the person with aphasia because I have more information from the significant other about the person with aphasia."

So this is the expression challenging bonus, it's how I identify the bonus part in the interviews. And this idea of a challenge is that even if this was seen as something positive, it was also seen as something challenging because speech language pathologist said that they sometimes had a hard time to actually meet significant others, to have access to significant others. So this idea of a challenge is this idea that they didn't meet with them frequently. And also, the idea of a challenge is that they were also careful about not overburdening significant others or not causing stress to the significant others, perhaps recognizing the vulnerability that significant others can have as well. So this also contributed to this idea of that positive addition, that is still challenging to to make happen, or that you have to be careful also, when when meeting with significant others.

Lyssa Rome

It sounds like there are some barriers to involving the significant others. And you sort of touched on those briefly—the idea that it's hard to access significant others sometimes. And also then some barriers having to do more with attitudes, like I don't want to overburden this person who's already feeling perhaps burdened. Can you talk a little bit more about some of the barriers and facilitators that you found when talking with SLPs, or when interviewing SLPs for your research? About sort of, what about the barriers and facilitators and about what they consider an ideal kind of practice in this area?

Marie-Christine Hallé

Yeah. In fact, even though it was hard sometimes for them to meet with families, when I asked SLPs the question, what would your ideal practice look like? Let's dream there are no barriers, what would you do? So this, there was this idea that, in an ideal world, they would meet with significant others, probably in their house. Like, to go in with significant others and people with aphasia, to go in their house to support them in a really natural and authentic kind of environment to have conversations. So when they dreamt, that's when what their practice looked like.

Even though the goal of this research project, at this point, was not to focus on or to study barriers and facilitators, because we didn't know what we would find. When I was doing this study, I wanted to know what was speech language pathologists' experience, but I could still infer some barriers and facilitators. So when I said that SLPs said they had a hard time to meet with significant others, I think there was perhaps this idea of the timing that was maybe difficult.

What was fascinating is that speech therapists working in inpatient rehabilitation were saying that they didn't see significant others that often, because they were probably busy with other therapies, or they were still overwhelmed maybe by what was going on. On the other hand, you had speech language pathologists working in outpatient rehabilitation saying, "Well, now that some time has passed, significant others need some respite. So we don't see them that much anymore."

So in terms of more specific barriers, there was this idea of the timing. Also, something related to the experience of speech language pathologists—and it's also related to the fact that they didn't see them that often. They didn't see them often, so didn't didn't have that much experience working with them. And some of them said, "I first want to be comfortable working with the person with aphasia, and then when I'll get more comfortable working with the person with aphasia, I can work with significant others as well." But at the same time, they didn't see them that often.

Also, the impression that speech language pathologists were not necessarily allowed to go and meet patients in their house, it was not part of their the policies, or the institutional rules, where they worked. So this was a barrier also. And the way that speech language pathologist could perceive communication partner training, they say, so sometimes, "If the significant other or the person with aphasia, if they are focused on recovery, or if they are at the beginning of their grieving process, I cannot necessarily introduce them to communication partner training." Or some SLPs would say, "I don't want to… I can do communication partner training, but as long as I don't add more stress to the dyad." So there was this idea of a need to have different conditions there. But these conditions are not often altogether present.

Lyssa Rome

It points to kind of gap, I think, between what we know about the value of communication partner training, and then how SLPs are actually able to practice. And I think that you have been working on ways to bridge that gap. And your work on knowledge translation and implementation has sort of led in that direction, it seems to me. Can you say a little bit more about that?

Marie-Christine Hallé

Yeah. So once I had completed my PhD and had this indication of a gap, as I said, that was not the intent, it was more like an exploratory study, but it pointed to a gap, to some indication of a barrier. So afterwards, I went and studied more, I would say, intentionally, the current practices regarding communication partner training.

I have conducted a study that is not published yet. But in the province of Quebec, I have studied using surveys and medical chart reviews. What were the current practices of speech language pathologists regarding communication partner training? And this kind of confirmed this idea of a gap. Because it was a minority of speech language pathologists that would use that very often with people with aphasia. And then what I did was also to explore, intentionally, those barriers and facilitators to use communication partner training by asking speech language pathologists what are those barriers using a framework, using a theoretical framework—the theoretical domains framework—that is constituted of domains that are recognized as influential in one's behavior, like a professional practice. So we know that our professional practice can be influenced by our knowledge, our skills, our environment, the influence of people around us, the beliefs about our own capabilities. So these are some of the domains. So we've asked questions to speech language pathologists regarding those domains.

The idea is if we can identify and kind of classify those barriers in terms of domains, then we can identify and develop knowledge translation strategies that will aim to overcome those specific types of barriers. Because the better you know what is the essence of the problem, what is the essence of the barrier, then you can better adjust.

Lyssa Rome

I wonder when when we're able to overcome some of those barriers that you've identified, and translate the knowledge, what will our treatment look like?

Marie-Christine Hallé

Good question. And, well, if I respond, like in a simplistic manner, since there is a gap, I think that what we would aim for, or what we would expect our practice to look like is to have more frequent use of communication partner training. Or maybe a more… not a systematic offer, because you want to adapt the intervention to the dyad or the people you have in front of you, but still maybe offering it more often, discussing this more often. But I think that once we overcome these barriers, our practice could be different—and not only our practice, as speech language pathologists, but also I think, our practice as a whole team, because we are influenced by our colleagues as well, right?

So I think what the practice may look like, across the continuum of care, is we may have some different messages or discourse, like we've talked about earlier. Like from day one or early on following the stroke, in acute care, we may, as a team—as speech language pathologist, neurologist, nurse, physical therapist—give people the message that what happened to them is a family thing. So if early on, give people the message that they they have the right to be involved, they have the right for some needs to be fulfilled, then this may improve their level of readiness when we introduce this idea of communication partner training,

I also think that what our practice as a team may look like is to make sure that everyone from the interprofessional team is trained and uses communication strategies. So from day one, from acute care, people with aphasia and families will see people using communication strategies. It will not be an SLP thing. So if we want to kind of improve the buy-in or the acceptance regarding the use of communication strategies, if more people use it, it can contribute to this idea that it's acceptable and it's feasible. Because if not, you may think that it's an SLP thing. The SLP is the person able to do it, she will or he will become our translator. But if everyone uses it, then it can even give the message that I'm able to do it. And it can even be kind of empowering. So I think our practice can be different in that manner, as well.

And I think that our practice as speech language pathologists can also be different in the way we introduce what is communication partner training, like developing kind of an argument about how we present this, and how we react when people tell us that they are not interested. The idea is not… we don't want to force people, you know, to receive communication partner training. But if they tell us that they are not interested, that they are focused on recovery, do we just say, "Oh, okay, no, you're not ready." Or should we have an open discussion, asking them, "What do you fear about communication partner training? How do you understand it? What do you think will happen if we use this training?" So we have access to some of their beliefs that they may be afraid that if we use some communication strategies, that the language will not get better. So if we have access to their belief, we can kind in a more adapted manner respond to this and potentially negotiate with them in a collaborative manner, but to help them take an informed decision about the care. So this is, I think, what the practice could look like.

Lyssa Rome

Yeah, the idea of everyone from the neurologists and the nurses and the whole rehab team using communication partner training is such a dream, I think, for all of us in the field. And I can see how if we had that, that kind of modeling, from very early on, it sort of normalizes using strategies in a way that I think would really change things. So, to wrap up, I'm curious, what would you leave SLPs, the clinicians listening to this? How should we be thinking about including significant others in our work?

Marie-Christine Hallé

I think we should see inclusion of significant others as a necessity, as opposed to a bonus. To feel that this is the basis of our work. To see that our patient is the family unit. I really liked this analogy of a family system as a mobile—you know, that you put above a baby's crib? And the analogy is not from me, it's from people when I was trained in using family centered care. But you know, if you take a look at the mobile, and that is constituted of different pieces, and if wind blows on one piece of the mobile, the rest of the mobile, the other pieces, will move as well. If you pull or push one piece, the rest will move as well. And the other pieces that will move will influence, again, the other pieces. So you know, the pieces are related. They influence one another. And this is what families are. So if we see them as interrelated, interconnected, and as the whole unit being our patient, I think that can be a way to change our practice.

Lyssa Rome

What a great image. Thank you so much for talking with us, Dr. Marie-Christine Hallé. I really appreciate it.

Marie-Christine Hallé

Thank you so much to you too. It was a pleasure to talk with you.

Lyssa Rome

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

References and Resources

SAPPA

https://aphasie.ca/en/projet-sappa/

24 hour virtual Teach-In

Marie-Christine Halle, 24-Hour Virtual Teach-In

Google Scholar

https://scholar.google.com/citations?user=ybWvcBIAAAAJ&hl=fr&oi=ao

Selected References

Shrubsole, K., Power, E., & Hallé, M. C. (2022). Communication partner training with familiar partners of people with aphasia: A systematic review and synthesis of barriers and facilitators to implementation. International Journal of Language & Communication Disorders.https://doi.org/10.1111/1460-6984.12805

Hallé, M. C., Le Dorze, G., & Mingant, A. (2014). Speech–language therapists' process of including significant others in aphasia rehabilitation. International journal of language & communication disorders, 49(6), 748-760. https://doi.org/10.1111/1460-6984.12108

Hallé, M. C., & Le Dorze, G. (2014). Understanding significant others' experience of aphasia and rehabilitation following stroke. Disability and Rehabilitation, 36(21), 1774-1782. https://doi.org/10.3109/09638288.2013.870608

Hallé, M. C., & Le Dorze, G. (2013). A Grounded Theory of Caregiving Based on the Experience of the Daughter of a Woman with Aphasia. In Ball, M.J., Müller, N., & Nelson, R.L. (Eds.). Handbook of Qualitative Research in Communication Disorders (p. 271-282). Psychology Press. https://doi.org/10.4324/9780203798874

Hallé, M. C., Duhamel, F., & Le Dorze, G. (2011). The daughter–mother relationship in the presence of aphasia: How daughters view changes over the first year poststroke. Qualitative health research, 21(4), 549-562. https://doi.org/10.1177/1049732310391274

Welcome to this Aphasia Access Aphasia Conversations Podcast. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am today's host for today's episode that will feature Dr. Nina Simmons-Mackie and Dr. Jamie Azios. These Show Notes accompany the conversation with Dr. Simmons-Mackie and Dr. Azios but are not a verbatim transcript.

In today's episode you will learn about:

1. Lache Pas La Patate! and aphasia
2. The importance of being mindful of gap areas in aphasia service and research
3. Moving aphasia care best practices from knowledge to action

Dr. Janet Patterson: Welcome to our listeners. Today I am delighted to be speaking with two individuals who are well known in the field of aphasia rehabilitation, Dr. Nina Simmons-Mackie and Dr. Jamie Azios. Nina and Jamie authored the text, Aphasia in North America, which is also known as the State of Aphasia Report. The original State of Aphasia Report was published by Aphasia Access in 2018, and contains information describing, among other topics, the frequency and demographics of aphasia and its impact on individuals and society, and aphasia services and service gaps. The State of Aphasia Report is a valuable resource for clinicians, researchers, administrators, and third-party funding agencies as we seek to craft a rehabilitation atmosphere that balances the treatment evidence base, the resource support for community aphasia groups, and the principles of client centered care. An updated State of Aphasia Report is forthcoming.

Each of our Podcasts in 2021 and 2022 highlighted at least one of the gap areas in aphasia care mentioned in the original State of Aphasia Report. For more information on the original State of Aphasia report, check out Podcast Episode #62 with Dr. Liz Hoover, as she describes these ten gap areas and their impact on aphasia rehabilitation. Our conversation today takes a broader view of the aphasia service gaps, crossing all ten gap areas. My questions for Nina and Jamie will ask them to reflect on the impetus for the original State of Aphasia Report, as well as the changes that appear in the updated State of Aphasia Report.

My first guest is Dr. Nina Simmons-Mackie, Professor Emeritus at Southeastern Louisiana University in Hammond, Louisiana. She has received the honors of the American Speech-Language-Hearing Association, the Louisiana Speech-Language-Hearing Association, and the Academy of Neurologic Communication Disorders and Sciences. She has published numerous articles and chapters and has had many years of clinical, academic and research experience in the area of adult aphasia. Also joining me today is Dr. Jamie H. Azios. She is the Doris B. Hawthorne Endowed Chair in the Department of Communicative Disorders at the University of Louisiana in Lafayette. Her research interests include qualitative research methodologies, understanding perspectives of people living with communication disabilities, co-constructed conversation and aphasia, and the impact of communicative environments on social participation and inclusion. She has published articles related to client centeredness, communication access, and life participation approaches to aphasia. Welcome Nina and Jamie to Aphasia Access Conversations and our discussion about the State of Aphasia Reports.

Dr. Nina Simmons-Mackie: Thanks Janet, happy to be here.

Dr. Jamie Azios: Really excited and honored to be here. Thanks for having us.

Janet: Good, and I look forward to a great discussion and learning about the State of Aphasia Reports. Nina and Jamie, I would like to begin our chat today by asking about the original State of Aphasia Report. Many of our listeners are familiar with the book, which is a resource published by aphasia access, describing the social, financial and life quality consequences of aphasia. It contains current statistics, compelling stories, and a one-stop report to understand the state of aphasia care in North America. Nina, you were the impetus for this project and oversaw its production. How did you organize a team to think about the need for this project and envision the value it could provide to people with aphasia, clinicians, medical and rehabilitation professionals interested in aphasia, administrators, and organizations who fund aphasia research?

Nina: Well Janet, when I started out in the field of aphasia, it wasn't all that difficult to review the literature on an aspect of aphasia. Now, the amount of information is just overwhelming. A kernel of an idea started forming as I was involved in a variety of projects that required a huge amount of effort gathering statistics and references to justify different types of services for aphasia. As I talked to lots of colleagues floating the idea for a comprehensive report, everybody agreed that it would be immensely helpful to pull data from diverse sources into one document. Something that could be a quick reference for grants or advocacy or program proposals.

I also had some personal experiences at the time that highlighted some gaps in the system of care for aphasia. So, it really struck me as a worthwhile undertaking and the board of Aphasia Access was really supportive of the idea. We succeeded in pulling together a diverse team of experts to serve on an advisory committee to review the chapters and vet the information. The report was originally envisioned as a relatively brief statement of gaps, but as I got into the literature, I realized that it was too much for just a short paper. In fact, it turned into 163 pages in the original document published in 2018. Now, it's been about five years since this publication, and so much has happened in the aphasia world. So, we felt like it was time for an update. Next year, we hope the state of aphasia will be published. Jamie graciously agreed to join me in this project, researching and writing the updated report. Jamie, you might have some comments on the update.

Jamie: Yeah, it's been so fun to work on this project with Nina. I've learned a lot from reviewing all the work in our field, and other fields too. Just getting my feet wet with the kind of experiences that Nina was talking about, pulling together this key information from so many places. It's been really challenging, but it's also been really rewarding.

I didn't realize just how much has changed in the last five years. There're just some amazing things happening in terms of aphasia programming, and technology, and attempts at overcoming gaps and equity and inclusion. That's not even talking about the way stroke and aphasia care has been impacted by our worldwide pandemic. So, in terms of what's new for the update, you can expect us to hit on all those new key areas. We're really going to try to highlight both the gaps and solutions over the last five years.

Janet: You both describe such an exciting project. Time flies, and things happen. And if you get busy in your own little world, sometimes you don't recognize all the things that are going on around you and all the changes. This is a great idea that you had 100 years ago Nina or maybe five or six. I'm glad Jamie, you're part of the current project. One component of the original State of Aphasia in North America is a list of ten gap areas, and you mentioned those a moment ago Jamie, gap areas in aphasia care and aphasia research. In planning our podcasts, we identified at least one of these gap areas to highlight in each interview. The ten gap areas are listed in the show notes for this conversation and discussed in Aphasia Access Podcast Episode #62 with Dr. Liz Hoover. So, Nina and Jamie as well, how did your team identify the gap areas for the original State of Aphasia Report and consider the potential for their influence on aphasia care and research?

Nina: Well, really the gap areas grew directly out of the data. It was similar to a literature review. The main difference is that a typical literature review addresses a specific topic, whereas this report addressed any topic that might be useful to advocate for aphasia services. So, the sources included government statistics, some original surveys of clinicians in North America, and grey literature. Both Jamie and I have a background in qualitative research so our approach has been pretty much like qualitative research. We take a broad-based look at the literature and identify themes that seem like topics that would be important in advocating for aphasia services. And then as we dig in and begin collecting the information, the gap areas become fairly obvious. In other words, we don't just think up gap areas. They represent what is described in the aphasia literature.

Jamie: We mentioned this earlier, but one of the big gap areas that's going to be recognized in the update, likely because of the impact of COVID and our shifts to engaging more digitally, is the idea the inaccessibility that people with aphasia have when it comes to using technology. We know that there has always been a digital divide, but it seems like COVID, and the loss of face-to-face contact has really widened that gap. Also widening that gap is just the fact that older people in general are using technology more and people with aphasia seem to be falling behind when compared to their age-matched peers due to these accessibility issues. The data show that people with aphasia don't text as much as other people their age, they seem to have more difficulty retaining technology skills, they have difficulty using social media platforms. We know that these things are critical for maintaining social connection. So even before COVID, we saw an increasing use of technology to access information, interaction, across a range of activities. But during COVID, and even after COVID, there's an absolute explosion. We do plan to dedicate a chapter to technology and accessibility.

Janet: That's good, which leads me right into my next question for the two of you. I wonder if you would reflect on the original State of Aphasia Report and its contents and describe the changes in the information in the updated State of Aphasia Report? In particular, would you comment on the ten gap areas in the original report, and any changes in the updated report? I know you've alluded to a few of them in the last few minutes, but I'd like you if you will, take a few more minutes to be a little more specific about the nature of the gap areas, and how they're changing as we look forward to the updated State of Aphasia Report.

Nina: I think the original report definitely raised an awareness of the gaps and aphasia services. Those gap areas remain relevant, so it's not like we're going to drop out gap areas. But the good news is that there's been a surge in the research and the literature relative to some of those gaps. It's typical that there is a significant lag from research and publications to implementing research into actual daily practice. This is what's interesting relative to the update, looking at how those gaps have affected actual daily practice. I think there have been two Podcasts on implementation that aphasia access has presented. One was Rob Cavanaugh talking about issues in implementation back in October, and Natalie Douglas talked about implementation science in 2021. That's significant relative to the gaps and aphasia services that we've recognized. I'll give you an example. A very recent Podcast by Sameer Ashaie addressed mental health and people living with aphasia. Mental health services was a big gap identified in the original 2018 report. Now, as we've updated the report, we find that attention to mental health and daily aphasia practice continues to be a significant gap. Not many SLPs are screening for depression and mental health professionals remain relatively uninformed about how to conduct counseling with people with aphasia. But it's been said that approximately seven or eight years is often the time it takes to move from research to implementing research in daily practice. The good news is that the literature in the area of mental health, for example, has surged since the 2018 report. We found 47 new papers on mental health and aphasia published in just the past five years. That's a typical journey that we see from a gap in service to implementation of the services and awareness of the problem and recognition of the need to change have to happen first. I think we've met that requirement of building awareness of a lot of these gap areas.

Now, we have to focus on how to move from knowledge to action, meaning that SLPs and other health care professionals have to figure out how to address things like mental health in daily practice. I see the report as helping us see where we are on that road to best practices, and possibly pushing faster than the seven-to-eight-year gap in research to practice. Also, one of the gap areas was in SLPs addressing participation in daily practice. A very similar thing seems to have happened in that there's an increase in research in participation-oriented activities and therapy. But the actual practice, according to a survey that we've done recently shows that SLPs are about the same as they were in 2018, relative to actually integrating participation-oriented tasks into daily practices. I think it gives us an outline of where we have to move with this current report.

Jamie: Yes, and that makes me think of some of the work that I'm working on now for the updated version in communication access, which was also a gap area in the original version of the State of Aphasia Report. Something that's really struck me is that over the last five years, so far there's been 25 new communication partner training studies in healthcare settings. That includes training healthcare providers or healthcare students that are going to be working, mostly the studies are in hospitals. That's amazing, in the past five years that's a lot of work that's been done in that area.

But the other thing about that work is that has helped us learn more about the complexity of delivering an intervention like that within a health care system. A lot of the studies that have come out have also showed, by interviewing nurses and other health care staff that have been trained, that even after training healthcare providers still seem to have a really narrow understanding of what communication supports are, or there might be a burden for implementing those into their daily routine care tasks and other things that they're doing. In general, nurses have expressed more critical than positive views about the relevance and the usefulness of communication partner training. It seems like healthcare professionals know the strategies are good. They know they need to use the strategies, but then they kind of get stuck in a place of uncertainty about how to switch up when it doesn't quite go the way that they expect it to go in an interaction. I remember one of the quotes from a paper that talked about this was a nurse saying something like, "I went to use a strategy. I know it didn't work. The patient became increasingly frustrated, and I needed to use a different strategy, but I just didn't know what to do." So, in thinking about moving forward, it's great that we see this work coming out, but it's a continued focus on shaping these programs and understanding the systems that maybe we need to approach it a little bit differently or make some adjustments so that we're really carrying through with the goal of the intervention and the outcomes are as we expect them to be and are positive.

Janet: This is exactly research into practice. Isn't what you just described, Jamie, much like all the human nature that we do? When we first learn something we're not so sure about it, and we don't quite know what to do when things don't go as we anticipate. The more familiar we become, the better we are at switching up as you say or changing or keeping our goal in mind, which is exactly what I'm hoping that we can talk about and the information in this updated State of Aphasia Report will help clinicians and researchers.

Nina, you mentioned two things that are something that I think about a lot and first of all, was your comment about the Podcast with Rob Cavanaugh. That was my Podcast with him, and we had a wonderful conversation. I love his ideas paying attention to, how do we actually deliver the service and are we doing what we think we are doing? And given the specific confines that we are working within, are we able to achieve the effect that we want, or do we have to make some changes? To me that seems like an important line of thinking and of research coming up about how we can make a difference given what we have or given whatever constraints we have.

The other comment that you made is about depression and mental illness. I think back to my Podcast with Rebecca Hunting-Pompon and some work that she's been doing, really looking at depression and the prevalence of it among people with aphasia, and it's greater than we think. So, your comment about identifying it as a gap area and what we're going to do. How are we going to take research into practice so that we can actually address those points that you're making. Which goes into my next question to ask you, as we look forward to the future of aphasia care, and specifically, as we move from research into practice, how might you see the information in the updated State of Aphasia Report and the gap areas that you'll identify within that publication? How do you see that continuing to guide aphasia care and research?

Nina: I think like the first report, the updated report will continue to raise awareness of major areas of need for people living with aphasia. I think it'll continue to serve as an advocacy tool. I know people have told me that they've pulled out parts of the original report to present to administration, and people have borrowed statistics to put into grants and things like that. So, I think those kinds of activities would continue. The report highlights areas where research is desperately needed. For example, there's a whole section on social isolation in aphasia, and we have data that's grown in the past five years verifying that this is a problem. This updated report shows that we haven't really seen very much in the way of intervention research or models for relevant interventions to address social isolation. I think as people read the report, they'll recognize areas where research is needed, and exactly where models need to look at practical ways to implement these different interventions. The report can highlight those kinds of questions so that researchers and clinicians can begin to address those questions in the next five years. It's just kind of a little push to keep the system moving along to be more efficient and more focused on addressing the needs of people living with aphasia.

Jamie: You know, another thing is, I think it's going to be good as Nina said, directing researchers and clinicians into maybe some practices that we need to make sure that we incorporate whenever we're thinking about what research is valuable, and what research is worth doing and the impact of that research on the people with aphasia. Something that's coming up as maybe a new gap area or continued gap area is the idea of stakeholder engaged research and including people with aphasia in that process. That was another Podcast that we just recently, I think, had in the last month or so. Something that Dr. Jackie Hinckley said that really struck me was that research that's produced in collaboration with stakeholders is efficient, even though it's more time consuming. That's because it has a better chance of making it into actual clinical practice. It can also be incorporated much quicker than research that's solely dictated by the interest of the researcher who likely doesn't have a full understanding of the barriers or the institutional problems that exist in a space. So, that's another idea of just thinking forward in ways that we hope that these gap areas are going to be addressed.

Janet: Both of you just in answering this last question and in things that you've said earlier, have touched upon the concept of how do you go from research to practice and most specifically, in the area of clinician work? It's lovely to say things, but how do you actually do it? How do you implement it? How do you get comfortable with a particular action and being able to change course, if that action is not working? I know it's important for aphasia clinicians and researchers to be mindful of the gap areas in aphasia care and to address them in their work, but that is a charge to us that is sometimes easier said than done. During our Aphasia Access Conversations, we've asked guests for their thoughts on how clinicians and researchers can implement actions in their daily activities to address a gap area. Importantly, we've asked our guests to consider actions that are easy to implement yet may have a broad impact on persons with aphasia or the family or the clinical environment.

I wonder if you would each share with our listeners some of your ideas and thoughts on how aphasia clinicians and researchers can remain mindful of the gap areas in the midst of their busy schedules, and feel comfortable incorporating specific actions? I see, and I know you see it as well, you get busy in a clinical life and all the daily activities, and you start to forget, "Oh yes, I should be mindful of the gap, but I forgot because I had a report to write." So, I wonder if you could give us some very practical ideas, thinking from the perspective of a clinician and how they can bear in mind the gaps and how their actions might relate to them?

Nina: Well, one of the different things in the updated report from the original report is it will include solutions that are drawn from the research literature. But of course, the problem that you alluded to is much of our research is not always feasible in the whirlwind of everyday practices. I think the message for researchers that Jamie alluded to, is to make the interventions that are being trialed more practical by getting the input of stakeholders, of clinicians, of people with aphasia, to see if they're generalizable to everyday practice.

I think the biggest need is for all of us to remain aware of gap areas, so we're not just thinking about language, but thinking about mood, and family needs and daily lives. Awareness of gaps is the first step towards improving those services. One of the things we used to talk about a lot was long-term and short-term goals. The terminology now is sort of moving towards talking about aims and targets of therapy. Using that terminology, we need to be sure that the aims of therapy, that is the ultimate goals, are stated in terms of participation in chosen life roles or activities, not in terms of WAB scores, or how many words a person can name. In other words, the ultimate targets that are worked on in therapy need to lead to meaningful outcomes. To me, one of the most practical things is for us all to envision goal setting in a way that places us in the position of looking at what gets in the way of those big picture aims. It's not always just things like language problems. It may be other things like confidence, depression, poor support for partners, lack of opportunities to communicate with other people. So, thinking more broadly about those ultimate aims or goals for each person with aphasia helps us see what the most efficient targets are for therapy. If a big barrier is depression, then that needs to be addressed or improved, because word finding won't make any difference if the person is too depressed to engage with other people. I guess what I am saying is, being aware of gaps in services and of the domains that impact life with aphasia helps the clinician to orient to what is needed most for that person, rather than what we habitually just go in and do every day.

Another suggestion is to get help. Going back to the example of the mental health needs. Maybe investing initial energy in training some mental health professionals on your rehab team or in your community how to communicate with people with aphasia, and how to do that kind of specialized counseling that's needed for this population. Then, when somebody pops up and you feel that they're depressed, you have a resource there that you can refer the person with aphasia to, so that it doesn't fall on your own shoulders to manage the depression yourself. The same thing goes with using the rehab team to increase participation. So that whole idea of dividing and conquering. As I said, the updated report shows that SLPs don't focus that much on participation-oriented activities. But if the rehab team all identified a participation goal in unison, that interprofessional kind of approach, and then all worked together towards fulfillment of that aim or participation goal, then it takes a little of the burden off the SLP in their daily frenzy of activity.

Janet: You know, Nina, you gave an excellent example. Another good example and an illustration of that was in a conversation with Mary Purdy a little while earlier this year, where she talked about interprofessional education. One of the goals, which is exactly what you said, was how do you get the rehab team thinking about it? The example that she gave was from her own personal experience about everybody was working towards helping an individual. The problem, what got in the way, the individual wanted to knit and couldn't knit. So how do they all work together, from language, from the occupational therapist, and physical therapist, to remove the obstacles and then allow the rehabilitation to consider. So, that's exactly right. And, Jamie, I know you've got some ideas as well.

Jamie: Well, that was just inspiring. It makes me want to go be a clinician every day again in long term care, because it's just really inspiring to think about change in that way of clinical practice. What came to me when you said easy to implement, but have a broad impact, it brought me back to a paper that I was reading. It's by Mia Loft and colleagues, and it's called, Call for Human Contact and Support. It's a paper about stroke survivors and their experiences in inpatient rehabilitation. Essentially, what they communicated was that they just wanted to be treated like humans. They wanted to be asked how they were doing. They wanted to be talked to like they were a person and not a patient. The really interesting thing was that they felt like these negative experiences really derailed their rehabilitation and motivation to get better, because they were so worried about what was going to happen after they left this place, "What happens when I go home? Am I going to go back to work?" These really negative emotional feelings disrupted the very start of their rehabilitation journey. Instead, what they ended up doing was kind of sitting in isolation most of the time and feeling like their interactions with healthcare workers were negative. That made me think back to the tiny habits talk that Linda Worrall gave at IARC. We as SLPs, we're the models for what good communication looks like in those settings. I think it's kind of our responsibility to start building those habits into our own practices. It might change a little bit of a shift in our view about what therapy looks like, and what's our role in that situation. It might take us recognizing the importance of stopping and asking somebody, how are you doing, but really listening. Maybe starting small with some of those tiny habits and being a model can really influence our other colleagues that we're working with of the importance of these small things in the rehab journey for the patient, especially early on when they're dealing with these emotional consequences of diagnosis.

Janet: You mentioned the word motivation, which of course was another previous Podcast with Mike Biel talking about the role of motivation. Everybody says, "oh yes, yes, motivation is important to consider." But nobody really does much about it. I mean, how do you know if somebody's motivated or not? To your point about sitting in isolation in the care facility, you can't just say that patient is not motivated, therefore, we're not going to do a particular activity. Until you have a discussion, you don't know. You don't know what they want to achieve, which is back to your comment earlier Nina, about what does this patient want to achieve in the long run? What is the aim here? And if you can have those conversations, find out the motivation, I think you have a greater likelihood of a maximum outcome, positive outcome of the rehabilitation journey.

I thought of something and wonder about this idea. Wouldn't it be fun...well, maybe it wouldn't be fun, I don't know, developing a little sort of cheat sheet or a little card that the Aphasia Access might put out that has these gap areas. If it's cute, designed well, it may be something that clinicians could put on their badge or keep on their clipboards. Instead of having to remember it in their brain, it's all right there in front of them - "Remember about these gap areas is you provide a service to an individual with aphasia."

Nina: That's a great idea. Little infographic that's something people can carry around and remind themselves. Good idea.

Jamie: Yeah, I love it.

Janet: Well, thank you. Let's see if it comes to pass because it truly is, I think very difficult to bear everything in mind when you're in a busy schedule. Anything that we can do to help a clinician have an easier life, like you don't have to remember the gap areas, they're right here in front of you, we'll see. It's an idea.

As we draw this interview to a close, Nina and Jamie, I wonder if you would each reflect on your work and experience in aphasia rehabilitation, and in preparing the State of Aphasia Reports. Are there a few pearls of wisdom, or lessons learned or words of guidance you might offer our listeners, as they interact with persons with aphasia, and approach aphasia care on a daily basis?

Nina: Well, I'm not sure I have any pearls, maybe some grains of sand to irritate the thought process. I think the first point I would make is understanding, or deeply understanding the values of a life participation approach to aphasia, is critical to achieving relevant and meaningful outcomes. I think the most important clinical skill, and I alluded to this earlier, is knowing how to set meaningful participation goals in collaboration with clients. Once we learn this, then the rest sort of falls into place because you're thinking about the big picture and what is important where. I think that's a key thing is learning how to write those big picture goals, and then see how to get there.

I think everyone involved with aphasia should read Linda Worrall's Seven habits of highly successful aphasia therapists. I think her PowerPoint on that topic that she presented is available on the Aphasia Access website. It's a common sense and elegant outline of the Must Do's for any aphasia therapist. It's seven things that make a good aphasia therapist, and if each item on her list were addressed, we could probably scratch off a bunch of gaps in services. I think that's another one of the things that I would recommend.

Jamie: Yeah, that is a great paper. It's been so influential for me and working with people with aphasia, but training clinicians, it's a great paper. I don't have any pearls of wisdom, either. I guess my only advice and Nina you've probably heard this saying before. This is something that is said down here in Cajun country in our French culture. It's "lache pas la patate". It means, "don't drop the potato". Essentially what that means is, even when things get really hard, don't give up. So if you're a clinician working in a situation where it's really hard for you to feel like you can achieve some of the things that we're talking about today, don't give up and know that we're all working towards this goal. We are recognizing these issues. I promise you, we're all thinking about these things, and that we're in it together.

Janet: I love that phrase, Jamie. I'm going to learn to have it trickle off my tongue and I'm going to use it frequently. That's a great idea. Doesn't it really describe how we want to be acting as humans. We're all in this together. Be a human. This person with aphasia is another human and we're trying to help this human with aphasia, given the skills that we possess that they perhaps don't. But they possess skills that we perhaps don't so together, we're on the rehab journey. Say it again, the phrase. "lash……"

Jamie: Lache pas la patate

Janet: Lache pas la patate. We're going to remember that phrase.

Thank you, Nina and Jamie for being part of the Aphasia Access Conversations, and for your efforts in creating the State of Aphasia Reports. I look forward to reading the updated version and seeing how its information will influence aphasia rehabilitation, and how it can assist clinicians and researchers as we continually work to improve care for and partnership with persons with aphasia and their families. I especially, am thankful that we had such a fun conversation, and I learned a new term today. The conversation we had continues to make me mindful of how we interact with everyone in our world, especially those people who have aphasia and their family members. And the people who work with or treat those people who have aphasia and their family members. And thank you to our listeners.

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 Janet Patterson. Thanks again for your ongoing support of Aphasia Access.

Conversations, Gap Areas, References, and Words to Live By

Aphasia Access Conversations

Episode #62 - Identifying gaps in aphasia care and steps toward action: A

conversation with Aphasia Access Board President Liz Hoover

Episode #77: Voltage drop and aphasia treatment: Thinking about the research-

practice dosage gap in aphasia rehabilitation: In conversation with Rob Cavanaugh

Episode #72: Implementation Science, Aphasia, and Sauce: A Conversation with Natalie Douglas

Episode #67: Considering depression in people who have aphasia and their care

partners: In conversation with Rebecca Hunting Pompon

Episode #89: Aphasia is a complex disorder: Mental health, language, and more – A

conversation with Dr. Sameer Ashaie

Episode #84: Interprofessional Practice and Interprofessional Education: In

conversation with Mary Purdy

Episode #69: Motivation and engagement in aphasia rehabilitation: In conversation

with Michael Biel

Episode #88: Everyone's an expert: Person-centeredness in the clinic and research - A

conversation with Jackie Hinckley

2018 State of Aphasia Report - Gap Areas

1.Insufficient awareness and knowledge of aphasia by health care providers and the wider public

2.Insufficient funding across the continuum of care

3.Insufficient availability of communication intervention for people with aphasia (need for services)

4.Insufficient intensity of aphasia intervention across the continuum of care

5.Insufficient attention to life participation across the continuum of care

6.Insufficient training and protocols or guidelines to aid implementation of participation-oriented intervention across the continuum of care

7.Insufficient or absent communication access for people with aphasia or other communication barriers

8. Insufficient attention to depression and low mood across the continuum of care

9. Lack of a holistic approach to community reintegration

10. Failure to address family/caregiver needs including information, support, counseling, and communication training

References

Fogg, B.J. (2019). Tiny habits: The small changes that change everything. Boston: Houghton Mifflin Harcourt.

Loft, M.L., Martinsen, B., Esbensen, B, Mathiesen, L.L., Iversen, H.K. Poulsen, I. (2019). Call for human contact and support: An interview study exploring patients' experiences with inpatient stroke rehabilitation and their perception of nurses' and nurse assistants' roles and functions. Disability and Rehabilitation, 41:4, 396-404, DOI: 10.1080/09638288.2017.1393698

Worrall, L. (2022). The why and how of integrating mental health care into aphasia services. Presentation to The International Aphasia Rehabilitation Conference, Philadelphia PA: June.

Worrall, L. (2019). The seven habits of highly effective aphasia therapists. Presentation to the Aphasia Access Leadership Summit, Baltimore MD: June.

Words to live by

Lache Pas La Patate!

(Don't Drop the Potato!) This saying means that even when things get difficult, don't

give up. It is a testament to the resiliency and enduring spirit of the Cajun people. Cajuns are known for their strong family and community values. During difficult times everyone comes together and helps each other out.

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 communication impairments. 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 Jasvinder Sekhon about her work on enabling SLPs to feel confident and competent in counseling people with post-stroke aphasia and their families.

Gap Areas

This episode focuses on on Gap Area 8: Insufficient attention to depression and low mood across the continuum of care.

Guest info

Jasvinder Sekhon is a speech-language pathologist currently working clinically in Melbourne, Australia. Since graduating from La Trobe University in the early 1990s, Jas has worked across the continuum of care in public health services in Victoria, Australia and briefly in Singapore. Jas has been involved in the aphasia community for many years and co-convened the inaugural online Australian Aphasia Association national conference in 2021.

Jas has recently completed her PhD, where she investigated counselling education that enabled SLPs to feel confident and competent using counselling to support the psychological wellbeing of individuals with aphasia and their families after stroke. Jas' supervisors for her doctorate were Professors Jennifer Oates and Miranda Rose from La Trobe University and Professor Ian Kneebone from University Technology of Sydney. Her studies sit under the research program Optimising Mental Health and Wellbeing of the Aphasia Centre for Research Excellence and Rehabilitation. The director of this CRE is Professor Miranda Rose.

Listener Take-aways

In today's episode you will:

• Learn about the stepped model for psychological care.
• Understand how speech-language pathologists can support psychological well-being for people with post-stroke aphasia.
• Identify the role of speech-language pathologists within an interdisciplinary team providing psychological care for people with post-stroke aphasia.

Show notes edited for conciseness

Lyssa Rome

Welcome to the Aphasia Access 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 impairments in my LPAA-focused private practice.

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 pleased to be today's host for an episode featuring Jasvinder Sekhon. Jas is a speech language pathologist and PhD candidate at La Trobe University in Australia, and recently submitted her thesis. She currently works part time as the senior SLP at a not-for-profit community health organization in Melbourne. Her studies are part of the research program, Optimizing Mental Health and Wellbeing at the Aphasia Center for Research Excellence. She has been involved in the aphasia community in Melbourne for many years, and is a member of the Australian Aphasia Association. She co-convened the first online Australian Aphasia Association national conference in June, 2021.

Today we'll be discussing Jas's research, which focuses on enabling SLPs to feel confident and competent in counseling people with post-stroke aphasia and their families.

In the Aphasia Access Conversations Podcast, we've been highlighting the gap areas identified in the State of Aphasia report by Dr. Nina Simmons-Mackie. In this episode, we'll be focusing on Gap Area 8, insufficient attention to depression and low mood across the continuum of care. For more information about the gap areas, you can listen to episode number 62, with Dr. Liz Hoover, or go to the Aphasia Access website.

So Jas, what led you to want to study counseling training for speech language pathologists?

Jasvinder Sekhon

Firstly, thank you so much to the listeners and to Lyssa for this opportunity. So my impetus for my PhD arose from observing a range of emotional issues occurring frequently in people with aphasia and their families. My clients had issues such as depression, worry, frustration, low confidence, and distress. And despite my many years of experience in the field, there were many times that I felt inadequate to respond adequately or effectively to my clients' emotions.

So in doing this research, I found that I was not alone. Survey studies of SLP practice and post-stroke aphasia rehabilitation from Australia, the US, UK, and South Africa have found that the majority of speech pathologists feel that they have low knowledge, skills, and confidence to assess or manage emotional and psychological well-being in their clients with post-stroke aphasia—and this includes their families. So working with colleagues on the stroke team who had mental health training, such as psychologists and social workers, I learned many counseling techniques, and also learned about counseling approaches and brief therapies that I thought could be useful for speech pathologists in their work.

As part of my PhD studies, I've also undertaken further reading and some short courses in counseling. And I am privileged to have had the supervision of professors Miranda Rose and Jennifer Oates of La Trobe University, and Professor Ian Kneebone, from University of Technology, Sydney, who have a wealth of professional and research experience in the fields of psychology, stroke, and counseling, and speech-language pathology.

Lyssa Rome

So can you tell us about an experience that for you points to the value of incorporating the Life Participation Approach to Aphasia into your clinical work?

Jas

Jasvinder Sekhon

Thanks. Yes. So early in my career, I focused on impairment-level therapies. And I think there's evidence to say that's the area that we are most trained in. But I also felt something was missing. An example was one day a client I was treating in her home, literally sent me packing. After day in, day out, I was focusing on just impairment therapy, which was the comfort area. After she threw me out and after tending to my wounded ego and reflecting, I realized that I had not found out what was meaningful to her and what she wanted out of her rehabilitation. I was being very clinician-directed, and I drove the focus of therapy. She was a busy, active, courageous single mother of two teenage girls and had stuff to do and places to go. And I was not addressing her needs, or her wants, for her to fully participate in her life. And my therapy was not aimed at helping her to achieve these life participation goals.

So since then, I have pursued a holistic, biopsychosocial view of aphasia rehabilitation, and I now spend time to ensure I hear the person's story, understand their needs, wants, and goals from speech therapy, and I collaboratively set out an action plan towards meeting these goals. The assessment and management of psychological well-being is an important part of post-stroke aphasia rehabilitation and comes up often in speech therapy. I have certainly found counseling skills to be essential in my clinical practice.

Lyssa Rome

Thank you. I feel like most of us in clinical practice would recognize how common it is for people with aphasia to also be dealing with low mood or anxiety. Certainly I, and I think others, worry at times about whether we're really meeting the emotional needs of the people whom we're working with. I know that there's been some attention to this for years. It seems like increasingly researchers in the aphasia community have been thinking more and more about these issues and recognizing their importance. I know this last summer, and IARC, Linda Worrall's keynote address, and other sessions focused on counseling for people with aphasia. Here in the US, ASHA has a new special interest group that's focused on counseling. And those are just two examples. I think that there are many more. I'm wondering how you see awareness of this issue changing?

Jasvinder Sekhon

Yeah, the emotional and psychological issues associated with communication disorders have been well-recognized for decades, as you said, and probably since the establishment of the discipline of SLP. The presence of psychological issues after stroke and aphasia is not new. The need for psychological care in post-stroke aphasia is also not new. I think what is changing is, in awareness, I guess, is who is responsible for providing psychological care in stroke services, how this is done, and when this is provided. This includes describing and defining psychological care, that is within the scope of the stroke team, which includes SLPs, and identifying training or education gaps to fulfill these expected roles, and ensuring that the provision of psychological care is ethical and effective.

Thankfully, we have a model that provides evidence-based guidelines that addresses many of these questions. And this model is the stepped model for psychological care after stroke by the UK Government. Professor Ian Kneebone was part of the group that helped develop the psychological care model. Also, the work by Dr. Caroline Baker in translating the stepped model for post-stroke aphasia rehabilitation, highlighted further evidence for rehabilitation interventions specifically to prevent and treat depression in people with mild or no depression within the scope of speech language pathologists.

Lyssa Rome

So can you tell us a little bit more about this stepped model?

Jasvinder Sekhon

The stepped model for psychological care is a framework for interdisciplinary psychological care after stroke. The stepped model outlines the role and responsibility for the multidisciplinary team in the assessment and management of emotional and cognitive conditions after stroke. Central to this model is that the whole team take responsibility for the identification and management of psychological issues, with clearly established referral pathways to specialist support services in the case of more severe psychological concerns.

There are four levels of the stepped model, and SLPs have a role and responsibility to support psychological care at level one and level two, for those who are experienced and trained. So at level one, there is no psychological disorder present and it's applicable to most or all stroke survivors. So level two describes stroke survivors with mild and transient psychological issues, and can be addressed by experienced speech language pathologists with adequate training, and who are supported by clinical psychologists or neuropsychologists with special expertise in stroke. At level three, and level four, the assessment and management of psychological issues require specialist psychology staff. So the model actually helps speech-language pathologists define their scope of practice in psychological care, and this includes counseling.

Lyssa Rome

So that leads me to wonder about the definition of counseling within speech-language pathology. How would you how should we be thinking about it?

Jasvinder Sekhon

Counseling is broadly defined as a purposeful conversation arising from the intention of one person, family, or couple, to reflect on and resolve a problem with the help of another person, and in this instance, the speech-language pathologist, to assist in resolving or progressing that problem. It may be helpful to think of all counseling interventions as methods of learning. All approaches used in counseling are intended to help people change. That is, to help them think differently, to help them feel differently, to help them act differently. In other words, in the case of post-stroke aphasia, counseling aims to help the client progress their goal within their rehabilitation journey.

Lyssa Rome

Thank you. That's really helpful, I think, to think about it as ways to think differently, feel differently, act differently. And in service of those goals, and the goal of helping people change, I'm wondering what kinds of psychological interventions can speech-language pathologists be expected to provide?

Jasvinder Sekhon

So at level one, emotional and psychological issues are mild and transient and don't impact discipline-specific therapy for example, aphasia therapy. At level one, emotional problems resolve quickly, and speech pathologists, as I mentioned before, definitely can support psychological well-being at this level.

Key interventions at level one, include counseling skills, such as active listening, normalizing the emotions and the experience, building effective relationships, providing psychological advice and information to family and peers to facilitate adjustment and build the skills for self-management and for autonomy with the communication issue. Goal-setting, problem-solving, peer support, motivational interviewing, managing stress, routine assessment and review of mood are also recommended at level one. Enabling peer support and positive relationships, including by providing communication partner training, aphasia choirs, and self-management workbooks are also identified at level one.

Lyssa Rome

You've just described a bunch of different kinds of interventions that we as SLPs might be providing. But you also said before that many SLPs don't feel confident to assess and manage psychological well-being very effectively. So I'm wondering if you could say a little bit more about that.

Jasvinder Sekhon

Yeah, we conducted a systematic review of SLP counseling education in post-stroke aphasia, and found that most universities reported to provide counseling education to SLP students. However, few actually provided counseling education specifically for supporting the psychological well-being in post-stroke aphasia. So it's possible that many speech pathologists may have very little preparation to address the significant emotional and mood issues in people with aphasia after stroke.

We found after speech pathology qualifications, speech pathologists reported a range of counseling education that they received. Some, again, with no training, up to PhD qualifications in counseling. But speech pathologists did report that they received counseling education from working in stroke care—so from their peers in stroke care—and also, many speech pathologists sought further education, professional development, in-services from external sources, counseling courses. So counseling, education and experience, we found, was positively correlated with feeling more knowledgeable, more skilled, and confident for supporting psychological well-being in post-stroke aphasia rehabilitation.

Lyssa Rome

With that in mind, and in order to help prepare SLPs to fill that role as you just were describing, you created a counseling education program. Can you tell me a little bit more about that?

Jasvinder Sekhon

We designed a counseling education program based on our systematic review of counseling education that speech pathologists currently receive and the stepped model for psychological care after stroke. Our program consisted of seven hours of self-paced learning and it was an online module and a workshop which was three hours, where clinicians practiced their counseling skills with peers. Topics included speech pathologists' role and responsibilities for supporting psychological well-being in post-stroke aphasia rehabilitation within that multidisciplinary team model and within the stepped model for psychological care. We included counseling theory and foundations of counseling skills, and how to apply these to speech pathology practice and specifically to the issues that we were describing common to post-stroke aphasia rehabilitation.

We trialed our counseling education program with 49 practicing speech pathologists in Australia. We measured these outcomes before and after the training program, and also after five weeks of completing the training to see if the effects were maintained. Thankfully, the results of the trial were positive and we did find significant and large effects of the program on speech pathologists' self-efficacy and self-rated competency for counseling in post-stroke aphasia. Also, these effects were maintained at five weeks follow-up for both of the outcomes.

Lyssa Rome

That's so exciting. So for those of us who didn't get to participate in your research and who would like to get started now, or would like to brush up on our counseling skills, or deepen our counseling skills, what resources can I and other speech-language pathologists access to help them feel more confident in this area.

Jasvinder Sekhon

If you have access to stroke mental health professionals, for example, psychologists or social workers, have a chat with them and organize some training in those level one interventions that were described. Maybe discuss sourcing counseling education from external providers, or your team. Interventions that you could look at sourcing for these inservices could include problem-solving and solution-focused approaches, motivational interviewing, counseling training, foundation counseling skills, for example, behavioral activation, and person-centered counseling. Family sensitive and family therapeutic approaches are also vital and support speech pathologists to provide that level one intervention.

There may be short courses for supporting mental health after stroke available via your National Stroke Association or via ASHA. The new special interest group that you mentioned would also be a fabulous resource for that peer support and professional development. For example, Speech Pathology Australia has teamed up with a local national mental health organization, called Lifeline Australia, to run counseling courses for speech pathologists.

As we have preliminary evidence that our online counseling education program was feasible and effective for improving speech pathologists' confidence for counseling to support psychological well-being in post-stroke aphasia, we are seeking further funding to make this program into a short professional development course for SLPs, and hopefully it will be widely available for anyone who would like to take on this further education.

Lyssa Rome

I look forward to that. So when speech-language pathologists are better prepared to address the psychological well-being for our clients who have aphasia, how will our practice look different?

Jasvinder Sekhon

It's a great question and a big question. I think ideally, speech pathologists will feel prepared and confident in their role and feel prepared and knowledgeable in their scope of practice in counseling. I think practice guidelines for counseling will be clearer, and clearer in defining scope and boundaries, skills required, and processes for that interdisciplinary practice when addressing the psychological wellbeing of people with aphasia and their families after stroke. Speech pathologists will be able to conduct appropriate screening for social and psychological issues and to know when and how and who to refer to as required.

I think speech pathologists who are appropriately trained will also be able to use a range of counseling skills to support the client to learn communication strategies for participating in conversations relating to all aspects of their lives, as well as strategies for supporting social and psychological well-being. These include strategies for maintaining social networks, building new networks with support from peers, and strategies for coping, adjusting, self-care strategies, and also living well with aphasia. Speech pathologists will also know how to support their own mental health and that of the stroke team members. We also will be able to measure competence for counseling in clinical training and professional practice. This is an area still in its infancy.

I think finally, most importantly, the psychological well-being of people with aphasia and their families will be effectively and efficiently supported from the start of their stroke rehabilitation journey. And risk for mood disorders will be minimized or prevented and positive outcomes enhanced for all domains of health and well-being.

Lyssa Rome

I look forward to that day. Jas Sekhon, thank you so much for being our guest on this podcast.

Jasvinder Sekhon

It has been my pleasure, Lyssa. Thank you again to Aphasia Access for this opportunity. If anyone has any further questions or comments or would like to find out where things are with our counseling education program, please don't hesitate to contact me via the email, which will be available with this podcast, or through La Trobe University. Thank you again.

Lyssa Rome

Great. We'll have that information in the show notes for today's episode. For more information on Aphasia Access and to access our growing library of materials, go to www.aphasiaaccess.org. For a more user-friendly experience, members can sign up for the Aphasia Access Academy, which is free and provides resources searchable by topic or author. If you have an idea for a future podcast series topic, email us at info@ aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.

References and Resources

Jasvinder Sekhon on Twitter: @holistic_commn

Email: [email protected]

Australian Aphasia Association https://aphasia.org.au/

Centre for Research Excellence in Aphasia Recovery and Rehabilitation, La Trobe University https://www.latrobe.edu.au/research/centres/health/aphasia

Lifeline (Australia) https://www.lifeline.org.au/

Psychological Care After Stroke (NHS) https://www.nice.org.uk/media/default/sharedlearning/531_strokepsychologicalsupportfinal.pdf

Speech Pathology Australia https://www.speechpathologyaustralia.org.au/

Baker, C., Worrall, L., Rose, M., Hudson, K., Ryan, B., & O'Byrne, L. (2018). A systematic review of rehabilitation interventions to prevent and treat depression in post-stroke aphasia. Disability and Rehabilitation, 40(16), 1870–1892. https://doi.org/10.1080/09638288.2017.1315181

Baker, C., Worrall, L., Rose, M., & Ryan, B. (2021). Stroke health professionals' management of depression after post-stroke aphasia: A qualitative study. Disability and Rehabilitation, 43(2), 217–228. https://doi.org/10.1080/09638288.2019.1621394

Doud, A. K., Hoepner, J. K., & Holland, A. L. (2020). A survey of counseling curricula among accredited communication sciences and disorders graduate student programs. American Journal of Speech-Language Pathology, 29(2), 789–803. https://doi.org/10.1044/2020_AJSLP-19-00042

Kneebone, I. I. (2016). Stepped psychological care after stroke. Disability and Rehabilitation, 38(18), 1836–1843. https://doi.org/10.3109/09638288.2015.1107764

National Health Service (NHS), UK. (2011). Psychological care after stroke: improving stroke services for people with cognitive and mood disorders. https://www.nice.org.uk/media/default/sharedlearning/531_strokepsychologicalsupportfinal.pdf

Nash, J., Krüger, E., Vorster, C., Graham, M. A., & Pillay, B. S. (2021). Psychosocial care of people with aphasia: Practices of speech-language pathologists in South Africa. International Journal of Speech-Language Pathology, ahead-of-print, 1–11. https://doi.org/10.1080/17549507.2021.1987521

Northcott, S., Simpson, A., Moss, B., Ahmed, N., & Hilari, K. (2017). How do speech-and-language therapists address the psychosocial well-being of people with aphasia? Results of a UK online survey. International Journal of Language & Communication Disorders, 52(3), 356–373. https://doi.org/10.1111/1460-6984.12278

Parkinson, K. & Rae, J., P. (1996). The Understanding and Use of Counselling by Speech and Language Therapists at Different Levels of Experience. European Journal of Disorders of Communication, 31(2), 140–52. https://doi.org/10.1111/j.1460-6984.1995.tb01757.x

Sekhon, J., Douglas, J., & Rose, M. (2015). Current Australian speech-language pathology practice in addressing psychological well-being in people with aphasia after stroke. International Journal of Speech-Language Pathology, 17(3), 252–262. https://doi.org/10.3109/17549507.2015.1024170

Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. (2019). Counselling training for speech–language therapists working with people affected by post‐stroke aphasia: A systematic review. International Journal of Language & Communication Disorders, 54(3), 321-346. https://doi.org/10.1111/1460-6984.12455

Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. L. (2021). Counselling education for speech-language pathology students in Australia: A survey of education in post-stroke aphasia. Aphasiology, ahead-of-print, 1-30. https://doi.org/10.1080/02687038.2021.1967280

Victorino, K. R., & Hinkle, M. S. (2019). The development of a self-efficacy measurement tool for counseling in speech-language pathology. American Journal of Speech-Language Pathology, 28(1), 108–120. https://doi.org/10.1044/2018_AJSLP-18-0012

Welcome to this Aphasia Access Aphasia Conversations Podcast. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am the host for today's episode that will feature Dr. Sarah J. Wallace from Queensland, Australia. These Show Notes accompany the conversation with Dr. Wallace but are not a verbatim transcript.

In today's episode you will hear about:

• clinical meaningfulness and research wastage: defining and addressing,
• minimal important change: defining and measuring,
• four "Monday Morning Practices" to create clinically meaningful outcomes.

Dr. Janet Patterson: Welcome to our listeners. Today I am delighted to be speaking with Dr. Sarah J. Wallace from the University of Queensland. In this episode we will be discussing the topic of operationalizing treatment success: what it means, the research efforts supporting this idea, why it is important to think about as we plan and deliver aphasia treatment, and suggestions for implementation in daily clinical practice.

Dr. Wallace is an NHMRC Emerging Leadership Fellow, NHMRC Senior Research Fellow in the School of Health and Rehabilitation Sciences at the University of Queensland in Australia. She is also a Certified and practicing Speech Pathologist. Her research interests include communication disability in ageing and enabling and measuring meaningful change in language and communication impairment in individuals with post-stroke aphasia. She uses qualitative and mixed methods to explore the lived experience of communication disability and works in partnership with consumers and clinicians to co-produce clinical interventions and methodological approaches that support the production of meaningful outcomes.

Among her interests in aphasia assessment and rehabilitation is a focus on measurement of aphasia and rehabilitation outcomes, in particular, outcomes that are real and are meaningful to persons with aphasia. Sarah led the ROMA group, Research Outcome Measurement in Aphasia, a group that has published three papers reporting efforts to identify standard outcome measures used in aphasia research. In addition, with colleagues across the world, she published a paper examining methods of operationalizing success in aphasia treatment in research and daily clinical practice. Foremost in this body of work is what I perceive to be Sarah's desire to bring together ideas from persons with aphasia and their family members, assist clinicians and researchers to identify effective and efficient rehabilitation techniques, and to measure treatment outcome in a relevant and scholarly rigorous manner.

Welcome to Aphasia Access Conversations, Sarah, and thank you for joining me today.

Dr. Sarah Wallace: Thanks, Janet, for this invitation.

I would like to start today by acknowledging the traditional owners of the lands from which I'm joining today, the Turrbal and Yuggera people, and pay my respects to their ancestors and their descendants who continue cultural and spiritual connections to country.

Janet: Thank you very much. I appreciate that acknowledgement.

Sarah, throughout your career, you have published papers focusing on aspects of aphasia rehabilitation, many of which explore the topic of measuring and standardizing outcomes in aphasia rehabilitation. How did you become interested in exploring this aspect of aphasia?

Sarah: Before I completed my PhD, I worked first clinically, as a speech pathologist, and later in a government policy role in the area of aged care quality and safety. I really loved both of these roles for different reasons. As a clinician, I could make a difference at an individual level. But with the government role, I realized the huge impact you can have when you're influencing practice from a systems level. So, when I went on to complete my Ph.D., I really knew that I wanted to do something big picture. At the time, there had been a few big studies coming out with no results. There was a lot of talk about how important it is to get research design right. Then as part of my work at the time, I was reading the World Health Organization, World Report on Disability, and that's where I really started learning about this concept of research wastage and the importance of having a really considered approach to the way we measure outcomes when you want to use data efficiently beyond an individual study. That really appealed to me, particularly given that, within aphasia, we tend to have small sample sizes and really need to make the most of the data that we collect.

Janet: Sarah, we often hear the term clinically meaningful in relation to aphasia outcomes. How would you define that term from the perspective of a person with aphasia? And also, from the perspective of aphasia clinicians and researchers?

Sarah: This is an excellent question. This is something that I was really interested in during my Ph.D. It's this idea of what is a meaningful outcome. And who actually gets to decide that? And are we measuring what matters to the people who live with aphasia, and the clinicians who work with them? I remember reading at the time, and one of my favorite quotes is from a paper by a researcher called Andrew Long. He says, in practice what actually gets measured depends on who wants the data, and for what purpose. I really think that the idea of clinically meaningful depends on who you're asking, and why you're asking. As an example, in the studies that we conducted with people with aphasia and their family members, they thought improved communication was really important. But they also identified a range of outcomes that related to participation, to attitudes, to psychosocial well-being. But then things change when you look at a different stakeholder group. We also spoke to clinicians and managers around the world, and they identified a range of outcomes. But the really interesting part was that improved language itself wasn't actually considered essential. The top outcome that they came up with actually related to family members, that they understand how to communicate with the person with aphasia. I think what it comes down to is the message that I've really tried to share from my research is that different outcomes matter to different people. And we can measure them in so many different ways. And that this is something that we really have to think carefully about.

Janet: Listening to your responses to these first two questions, I can feel the energy! I can feel this passion looking at aphasia rehabilitation from a larger perspective, outside the actual treatment that gets delivered, and thinking about how we make sure that our treatment is the right thing, and is measuring the right thing, whatever, as you say, the right thing is. It depends on who's looking for the data. You've maintained that focus of how can we become a better entity, better clinicians, if you will, at the broader scope? Does that make sense to you?

Sarah: Yeah, it does, and that idea really resonates with me. I think that's definitely been a feature of the work I've done and the work that I continue to do. It's very focused on collaborative efforts and how we can make the most of what we have, so that we can ultimately improve outcomes for people with aphasia.

Janet: I do think we need to pay attention to this. We cannot just assume that if we give a test pre and post treatment, it is a meaningful outcome to a person with aphasia or to their care partners or to a third-party payer.

Sarah, you have led the ROMA group, that is Research Outcome Measurement in Aphasia. As I mentioned earlier that group published three papers describing standardized assessment measures suggested for use in aphasia rehabilitation outcome studies. Would you briefly describe the genesis of the idea for this work and the studies the group has published?

Sarah: Following on from what I mentioned earlier, this was during my Ph.D. Once I had this idea that I wanted to do something to help reduce research wastage in aphasia, I started reading more about approaches to standardizing outcome measurement and came across the work of the Comet Initiative, which is a group that brings together people who are interested in the development of standardized sets of outcomes, which they refer to as Core Outcome Sets. There's this idea that a Core Outcome Set is essentially the minimum outcomes that should be measured in treatment studies of a particular condition. And that really appealed to me. So, we went from there, we conducted a series of studies looking at different stakeholders, gathering thoughts and perspectives about what an important outcome actually is. We conducted a scoping review of outcome measurement instruments so that we could try and match those outcomes to available tools. And then we've had a number of consensus meetings, where we've tried to pair those two things together.

Janet: I think the work of the ROMA group is important, and being part of that group, it's exciting to watch the minds of people all over the world, contribute their various perspectives, and have discussions about the different measures and the value of the measures. While I think it's wonderful to work at this level, this broad level of perspective, at some point, it has to inform our daily clinical practice. How do you see that happening?

Sarah: Yeah, that's a really good question. Essentially, we conduct treatment research so that we can help clinicians and people with aphasia and their families to make informed decisions about treatments. What's going to help? What's the best treatment for a particular issue and for a particular person? To answer these questions, researchers need to measure the effects that a treatment has on a person, what we refer to as outcomes. When we're measuring different outcomes in different ways it makes it harder to compare data, to combine it across studies, and to draw strong conclusions about which treatments work best.

Core outcomes also need to be relevant, and this is the other part that has been really exciting to me. They should capture results that are important to people who live with that condition. Ultimately, I think that the clinical relevance of the ROMA Core Outcome Set lies in what it is hopefully doing - helping to produce the best evidence that we can get for aphasia treatments, so that those treatments can then be implemented into practice in order to improve the lives of people with aphasia and their families.

Janet: I think that those papers should be required reading for every speech-language pathologist dealing with people with aphasia, and also other rehabilitation professionals, because it helps if we can all be thinking in the same way, as you said, to think about treatment candidacy and does one treatment work better, or for a specific person. or someone with a particular aphasia profile, than another kind of treatment? How do we make good clinical decisions for our patients? That's exactly, I think, what you're saying.

I mentioned also earlier that with several colleagues, you recently published a paper titled Operationalizing Treatment Success in Aphasia Rehabilitation. That paper was published in the journal, Aphasiology. I am a great fan of that paper and would like to begin by asking you why it would be important, in your mind, to operationalize treatment outcomes, given the variability that we see among aphasia patients.

Sarah: Thanks, Janet. And yeah, and this is a great paper. It was led by Caterina Breitenstein and other researchers from the Collaboration of Aphasia Trialists. This paper is really trying to answer the question, "What is a successful outcome from treatment?" What are the ways in which we can actually measure that treatment success? This is such an important question because research will end in clinical practice and so much hinges on this decision? Whether a treatment is successful is going to depend on how we define success and whether we can measure that success in a way that can actually be captured.

Janet: Sarah, in light of your thinking about the different stakeholders, how might operationalizing treatment success differ for the various stakeholder groups that you've identified? That is, people with aphasia, family members, clinical and other medical professionals, medical administrators, and aphasia researchers?

Sarah: This is really that idea that different outcomes are important to different people. If we think about this from a societal perspective, or from a healthcare funders perspective, any treatment that's provided as part of clinical care needs to be cost effective. So that might be something that from a funders point of view is a really important outcome. For clinicians, the ability for someone to take part in conversations and to communicate in different settings and roles is something that, through my research, was identified as an important treatment outcome. Then from the perspective of people with aphasia, not surprisingly, it's improved communication. But it's all these other things as well. It's being able to participate in a conversation. It's having a sense of recovered normality and a feeling of autonomy and independence. So again, I really think it's the idea that it really depends on who you're asking, and the perspective that they're coming from.

Janet: Your comments make me think about work done by Jackie Hinckley and others about stakeholders being part of deciding research questions or research directions. It also makes me think about work done by Michael Biel and others about motivation and engagement. All of these, I think, have a bearing on the research or the clinical enterprise. Are people engaged? Are they willing to commit time and resources to a rehabilitation enterprise because they see value in it, and because they see that there's a likelihood of a good outcome. I believe that what you're doing in terms of thinking about operationalizing helps move us along in that direction.

Sarah: Absolutely. I think that's a really important point, that if someone can't see the relevance of what they're working on in therapy, for example, then they're not going to engage in that process. It really starts with goal setting, and really identifying, working with a person to identify, goals which are really going to be functionally relevant to them and to their day-to-day life. I think if you can get that part right, then everything else follows on from that.

Janet: In your paper, you and your colleagues describe the concept of minimal important change, as a way of determining clinically relevant improvement on an outcome measure, considering the average statistically significant change across groups, as well as statistical significance at the individual level. Can you unpack that concept for us and describe how it relates to daily clinical practice?

Sarah: Yeah, absolutely. This is a really exciting idea, I think. Basically, minimal important change, and it is called different things, but this is the term that we've chosen to use, is the smallest change score above which an outcome is experienced by someone as being relevant or meaningful. I really love this idea, because what we're essentially doing is applying qualitative meaning to quantitative change on an outcome measure. To put this in an example, what this might actually look like, what we're asking is, for example, if I do a Western Aphasia Battery, and then do it again, how many points would actually tell me that that person had experienced a level of meaningful change. So that's what we're trying to work out to determine these benchmarks for meaningful change. We've actually recently received funding for this work, which is really, really exciting. We're going to be undertaking a project, where we use an anchor-based method to establish minimal important change scores for the measures that are in the ROMA Core Outcome Set.

Janet: That makes a lot of sense, because I know in the paper, there are some formulas and statistical representations and discussions that might not be easily familiar to some of our listeners. It was a tough read in some parts of your paper, for sure.

Sarah: Yeah, it is. It's probably not the sort of paper that you sit down and read from start to finish, I think. Some of these concepts are complicated, and they are a bit dense, but I sort of see that paper almost as a reference guide. I think it's the sort of thing that you can come back to, and it does, you know, tend to make more sense over time.

Janet: You did give us one example about operationalizing outcomes with the Western Aphasia Battery and minimal important change. Are there a couple of other examples drawn from this paper that you might share, bringing it to the level of our daily clinical practice?

Janet: Sure. Well, I think, overall, one of the really nice things this paper does, is it actually explains that you can determine treatment success in a number of different ways. We go through concepts around, what approach would we take if we're trying to work out does this treatment work for this particular population, and how well does it work? Then we have different approaches where we're looking at who does it work for, looking at individual change on outcome measures. It really walks you through approaches for group level analysis, looking at mean differences between groups in research trials, versus approaches for determining individual therapy response and outcomes, like minimal important change, and like smallest detectable change.

Janet: Is there an idea or a thought, from this paper and from your work in thinking about operationalizing outcomes that you might give to our listeners that they can put into practice on Monday morning in their clinical practice?

Sarah: Absolutely. This is something I've given a lot of thought about recently, because I think it's one thing to have a very theoretical sort of paper, and to think about the minutiae of all of these issues, but I think for clinical practice it comes down to probably about four different things. (One) I mentioned earlier, I really believe that meaningful outcome measurement starts with shared goal setting. You need to work with your clients to really set meaningful goals that are relevant to them, that they are invested in, and that are going to help them to achieve the outcomes that are important to them.

(Two) The next thing I think, is thinking about, "I have these goals." We have Clinical Practice Guidelines, we have research evidence, and I would encourage clinicians to use those resources to then really think, "Well, which treatments do we know are effective? Which treatment is most likely to work for the person that I have sitting in my clinic?"

(Three) The next part is when we really get to the measurement part of it, which is really thinking about what you want to measure. Thinking about those goals, thinking about your treatment, where would you expect change to happen following that treatment? Are you looking for a change in function? Or in a behavior? Or is it a feeling, is it confidence that you're trying to change or, someone's emotional wellbeing or an attitude? What is it that you're actually looking to change?

(Four) Once you've determined what you want to measure, it's then thinking about what's the most appropriate way of measuring that? For something like confidence, the best way to measure that is that it really has to come from the person themselves. It's a PROM (Patient Reported Outcome Measure), it's patient reported, it's self-report. But there are many other ways that we can measure things: performance on a task; a report from a caregiver or significant other; it could be a clinician rating or report. It's really then thinking about what's the best way of measuring this? There are all these resources out there like the Shirley Ryan Ability Lab, or Stroke Engine. There are websites where they break these measures down and can give you some information about their psychometric properties. Do they measure what they say they measure? Is this tool reliable? Is it sensitive enough to actually pick up change? I think if you can consider all those things, then you're well on the way to successful measurement.

Janet: That's a tall order! But I think it's a good order. Perhaps if we started Monday morning with just one of those things, and felt comfortable implementing shared goal setting for example, and that became an easy-to-do, relevant part of our clinical work, then we might move on to the other points that you're making and gradually incorporate them.

Sarah: Absolutely. I think at a basic level make sure your goals match your outcome measures. Make sure you're measuring what you're actually trying to change, I think is the basic message.

Janet: Sarah, that sounds like a pearl of wisdom to me. What I would like to ask you as we draw this interview to a close, reflecting on your career beyond the ROMA papers and this paper that we've been talking about, operationalizing outcome measures, and reflecting on your research and clinical career, you've just dropped one pearl of wisdom. Are there any others or lessons learned that you would like to share with our listeners?

Sarah: Yeah, sure. Thinking about my career sort of in total, one of the real highlights of it has been collaboration. I think working together is my other pearl of wisdom, so to speak. I think when we work together and we collaborate, we use our efforts to the best, and in the most efficient way possible, we can reduce research wastage, and we can really put our combined efforts towards improving the lives of people with aphasia. Me personally, I'm involved in a group called the Collaboration of Aphasia Trialists and they have a brilliant website. They're a global network of aphasia researchers, with a lot of resources on their website, which are intended for clinicians to use. They have a particular emphasis on multilingual assessment and outcomes and treatment, which is relevant to all of us in the world that we live in. We're often seeing really diverse populations in the clinic. So, I think yeah, that's my other pearl.

Janet: Sarah, I am an ardent recycler and believe in reduce, reuse, recycle. You've mentioned twice now in our chat, about reducing research and clinical wastage. I think that's a great phrase I want to remember, so that we're not continuing to reinvent the wheel, or spending time and money and resources doing things over again, and wasting, I thank you for that term and that idea.

Sarah, thank you also for being my guest, and the guest of Aphasia Access, for this episode of Aphasia Conversations. I enjoyed our conversation, and I will also say, I think we could probably continue to talk for hours about several other topics, especially related to motivation and engagement and measurement, but we'll stop for now. I learned a lot of new things in reading to prepare for our discussion and also listening and talking with you. I think that your work in aphasia rehabilitation and change measurement is important, very important, not just from an academic point of view, or a third-party payer or funding point of view, but most importantly from the patient's point of view, so that we are delivering the best, most effective treatment we can in the most efficient manner. So, thank you for being my guest today.

Sarah: Thank you for having me, it's been a pleasure.

Janet: I also would like to take a moment to thank all of you, our listeners, for your continuing interest in Aphasia Access conversations. As a reminder, check the Show Notes for today's episode for any references or resources mentioned in today's podcast. For more information on Aphasia Access, and to access our growing library of materials, go to www.aphasia.access.org. If you have an idea for a future podcast topic, please email us at info at aphasia access.org. Thank you again for your ongoing support of Aphasia Access

References, Links, and Podcasts

References

Biel, M., Enclade, H, Richardson, A., Guerrero, A. & Patterson, J.P. (2022). Motivation in aphasia rehabilitation: A scoping review. American Journal of Speech-Language Pathology, 31,2421-2443. https://doi.org/10.1044/2022_AJSLP-22-00064

Breitenstein, C., Hilari, K., Menahemi-Falkov, M., L. Rose, M., Wallace, S. J., Brady, M. C., Hillis, A. E., Kiran, S., Szaflarski, J. P., Tippett, D. C., Visch-Brink, E., & Willmes, K. (2022). Operationalising treatment success in aphasia rehabilitation. Aphasiology. https://doi.org/10.1080/02687038.2021.2016594

Hinckley, J., Boyle, E., Lombard, D. & Bartels-Tobin, L. (2014) Towards a consumer-informed research agenda for aphasia: preliminary work, Disability and Rehabilitation, 36:12, 1042-1050, https://doi.org/10.3109/09638288.2013.829528

Long, A. F., Dixon, P., Hall, R., Carr-Hill, R. A., & Sheldon, T. A. (1993). The outcomes agenda: Contribution of the UK clearing house on health outcomes. Quality in Health Care, 2 49–52. https://doi.org/10.1136/qshc.2.1.49

Wallace, S. J., Worrall, L., Rose, T., Le Dorze, G., Breitenstein, C., Hilari, K., Babbitt, E.… Webster, J. (2019). A core outcome set for aphasia treatment research: The ROMA consensus statement. International journal of stroke : official journal of the International Stroke Society, 14(2), 180–185. https://doi.org/10.1177/1747493018806200

Wallace, S.J., Worrall, L. Rose, T.A., Alyahya, R.S.W., Babbitt. E., Beeke. S., de Beer, C….Le Dorze, G. (under review). Measuring communication as a core outcome in aphasia trials: Results of the ROMA-2 international core outcome set development meeting. International Journal of Language and Communication Disorders.

Links

Collaboration of Aphasia Trialists. https://www.aphasiatrials.org/

Comet Initiative. http://www.comet-initiative.org/

ROMA COS. Core outcome set for aphasia research – The Collaboration of Aphasia Trialists Shirley Ryan Ability Lab. https://www.sralab.org/

Stroke Engine. https://strokengine.ca/en/

Aphasia Access Podcasts

Episode #69: Motivation and engagement in aphasia rehabilitation: In conversation

with Michael Biel

Episode #88: Everyone's an expert: Person-centeredness in the clinic and research - A

conversation with Jackie Hinckley

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Ellen Bernstein-Ellis, Program Specialist at the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences, and a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.

I'm today's hosts for an episode featuring Dr. Arla Good and Dr. Jessica Richardson.

We will discuss the SingWell Project and the role of aphasia choirs from a bio-psychosocial model. Today's shows features the following gap areas from the Aphasia Access State of Aphasia Report authored by Nina Simmons-Mackie:

• Gap area #3: insufficient availability of communication intervention for people with aphasia, or the need for services.
• Gap area #8: insufficient attention to depression and low mood across the continuum of care.
• Gap area #5: insufficient attention to life participation across the continuum of care.

Guest Bios:

Dr. Arla Good is the Co-director and Chief Researcher of the SingWell Project, an initiative uniting over 20 choirs for communication challenges around the world. Dr. Good is a member of the Science of Music, Auditory Research and Technology or SMART lab at Toronto Metropolitan University, formerly Ryerson University. Much of her work over the last decade has sought to identify and optimize music based interventions that can contribute to psychological and social well-being in a variety of different populations.

Dr. Jessica Richardson is an associate professor and speech-language pathologist at the University of New Mexico in the Department of Speech and Hearing Sciences, and the Center for Brain Recovery and Repair. She is director of the UN M brain scouts lab and the stable and progressive aphasia center or space. Her research interest is recovering from acquired brain injury with a specific focus on aphasia, recovery, and management of primary progressive aphasia. She focuses on innovations in assessment and treatment with a focus on outcome measures that predict real world communication abilities, and life participation.

Listener Take-aways

In today's episode you will:

• Learn about the SingWell Project model of supporting choirs and research around the world
• Learn which five clinical populations are the initial targets of the SingWell Project
• Discover how the SingWell Project is challenging the stigma about disability and singing
• Learn about some of the biopsychosocial measures being used to capture choir outcomes

Transcript edited for conciseness

Show notes

Ellen Bernstein-Ellis 02:58

I'm going to admit that aphasia choirs have long been one of my clinical passions. I'm really excited and honored to host this episode today. I'd like to just start with a question or two that will help our listeners get to know you both a little better. So Arla, is it okay, if I start with you? Would you share what motivated you to focus your research on music-based interventions? Do you have a personal connection to music?

Arla Good 03:29

I feel like I could do a whole podcast on how I ended up in this field.

Ellen Bernstein-Ellis 03:33

That'd be fun.

Arla Good 03:34

There's just so many anecdotes on how music can be a powerful tool. I've experienced it in my own life, and I've witnessed it in other lives. I'll share one example. My grandfather had aphasia and at my convocation when I was graduating in the Department of Psychology with a BA, despite not being able to communicate and express himself, he sang the Canadian National Anthem, perfect pitch-- all of the words. It's just an accumulation of anecdotes like that, that brought me to study music psychology. And over the course of my graduate studies, I came to see how it can be super beneficial for specific populations like aphasia.

So, I do have a quote from one of our choir participants that really sparked the whole idea of SingWell. It was a Parkinson's choir that we were working with. And she says, "At this point, I don't feel like my Parkinson's defines me as much as it used to. Now that I've been singing with the group for a while, I feel that I'm also a singer who is part of a vibrant community." And that really just encapsulates what it is and why I'm excited to be doing what I'm doing-- to be bringing more positivity and the identity and strength into these different communities.

Ellen Bernstein-Ellis 04:49

Yes, the development of positive self-identity in the face of facing adversity is such an important contribution to what we do and thank you for sharing that personal journey. That was really beautiful.

Jessica, I'm hoping to get to hear a little bit about why what your personal connection is to aphasia choirs and music.

Jessica Richardson 05:12

Again, so many things. I grew up in a musical household. Everyone in my family sings and harmonizes and it's just beautiful. But a lot of my motivation for music and groups came from first just seeing groups. So some early experience with groups at the VA. Seeing Dr. Audrey Holland in action, of course, at the University of Arizona-that's where I did my training. Dr. Elman, you, of course, so many great examples that led to the development of lots of groups. We do virtual online groups for different treatments, different therapies. We have space exploration. We have space teams, which is communication partner instruction that's virtual. So we do lots of groups. And of course, we have a neuro choir here in New Mexico. Now, I'm just so excited that there's so much research that's coming out to support it.

Ellen Bernstein-Ellis 06:03

Jessica, can I just give you a little shout out? Because you were visionary. You actually created these amazing YouTube videos of your choir singing virtually, even before COVID. And you came out with the first virtual aphasia choir. I remember just sitting there and just watching it and being amazed. And little did we know. I guess you knew! Do you want to just take a moment because I want to put those links in our show notes and encourage every listener to watch these beautiful virtual choir songs that you've done. You've done two right?

Jessica Richardson 06:44

Yes. And I could not have done it, I need to make sure I give a shout out to my choir director, Nicole Larson, who's now Nicole Larson Vegas. She was an amazing person to work with on those things. She also now has opened a branch neuro choir, just one town over. We're in Albuquerque and she's in Corrales and our members can go to either one. We coordinate our songs.

I'd really like to start coordinating worldwide, Ellen. We can share resources and do virtual choirs worldwide and with Aphasia Choirs Go Global. But I definitely want to give her a shout out. And then of course our members. I mean, they were really brave to do that. Because there was nothing I could point them to online already to say, "Hey, people are doing this. You do it." So they were really courageous to be some of the first.

Ellen Bernstein-Ellis 07:36

Do you want to mention the two songs so people know what to look for? And just throw in the name of your choir.

Jessica Richardson 07:42

We're just the UNM neuro choir as part of the UNM Brain Scouts. The first song was The Rose. The second song was This is Me from the Greatest Showman. And the song journal that you could wait for in the future is going to be Don't Give Up On Me by Andy Grammer.

Ellen Bernstein-Ellis 08:01

Beautiful! I can hardly wait. And there are some endeavors and efforts being made to create these international groups. Thank you for doing a shout out to Aphasia Choirs Go Global, which is a Facebook group to support people who are involved in neuro and aphasia choirs. I'll give a shout out to Bron Jones who helped start it and Alli Talmage from New Zealand who has worked really hard to build a community there. It's been really wonderful to have a place where we can throw out questions to each other and ask for opinions and actually dig into some interesting questions like, "What measures are you using to capture X, Y, or Z?" I think we'll get to talk about some of that today, actually. So thank you.

I encourage our listeners to listen to those two YouTube videos we'll put in the show notes. But Jessica, I'm going to give you a twofer here. I've been following your amazing work for many years, but the first time I got to meet you in person was at an Aphasia Access Leadership Summit. I wanted to ask you as an Aphasia Access member, if you have any particular Aphasia Access memories that you could share with our listeners?

Jessica Richardson 09:09

Well, it was actually that memory. So, I would say my all-time favorite collection of Aphasia Access moments, really was working with my amazing colleague, Dr. Katerina Haley. She's at UNC Chapel Hil. We were co-program chairs for the Aphasia Access 2017 summit in Florida. The whole summit, I still think back on it and just smile so wide. And you know, we went to the museum, we were at the Aphasia House, just so many wonderful things. All of the round tables and the presentations, they just rocked my world. And it's just something I'm super proud to have been a part of behind the scenes making it happen. And I also remember that you wrote me the nicest note afterwards.

Ellen Bernstein-Ellis 09:54

It was just because it impacted me, too. Personally, I felt like it just cracked open such a world of being able to have engaging discussions with colleagues. Tom Sather, really named it the other day (at IARC) when he quoted Emile Durkheim's work on collective effervescence, the sense of being together with a community. I'm seeing Arla, nodding her head too.

Arla Good

Yeah, I like that.

Ellen Bernstein-Ellis

Yeah, there was a lot of effervescing at these Leadership Summits, and we have one coming up in 2023. I'm really excited about it and hope to get more information out to our listeners about that. So I'll just say stay tuned. And you'll be hearing more, definitely.

I just want to do one more shout out. And that is, you mentioned international collaboration. I'd like to do a quick shout out to Dr. Gillian Velmer who has been doing the International Aphasia Choirs. I'll gather a couple of links to a couple of songs that she's helped produce with people around the world with aphasia singing together. So there's just some great efforts being done.

That's why I'm excited about launching into these questions. I want to start with an introduction of SingWell. Arla, would you like to get the ball rolling on that one?

Arla Good 11:09

For sure. SingWell began with my co-director, Frank Russo, and myself being inspired by that quote I shared at the beginning about singing doing something really special for these communities. We applied for a Government of Canada grant and we received what's called a Partnership grant. It really expanded well beyond just me and Frank, and it became a network of over 50 researchers, practitioners, national provincial support organizations, and it continues growing.

It's really about creating a flow of information from academia to the community, and then back to academia. So understanding what research questions are coming up in these communities of interests. And what information can we, as researchers, share with these communities? That's SingWell, I'll get into the research questions.

Ellen Bernstein-Ellis 12:03

Let's dive in a little bit deeper. What is SingWell's primary aim? That's something you describe really well in an article we'll talk about a little later.

Arla Good 12:15

So our aim is to document, to understand, group singing as a strategy, as a way to address the psychosocial well-being and communication for people who are living with communication challenges. SingWell, we're defining a communication challenge as a condition that affects an individual's ability to produce, perceive or understand speech. We're working with populations like aphasia, but also people living with hearing loss, lung disease, stuttering. I hope, I don't forget anybody. There are five populations. Parkinson's, of course.

Ellen Bernstein-Ellis 12:53

Perfect. So that's your primary aim. Do you want to speak to any secondary or additional goals for your project?

Arla Good 13:03

The second major pillar of this grant is to advocate and share the information with these communities. So, how can we facilitate the transfer of this knowledge? We've started a TikTok channel, so you can watch videos. We have a newsletter and a website that's continuously being updated with all the new information. We want to develop best practice guides to share with these communities about what we've learned and how these types of choirs can be run. And really, just mobilize the network of partners so that we're ensuring the information is getting to the right community.

Ellen Bernstein-Ellis 13:35

Wow. Well, I mentioned a moment ago that there's a 2020 article that you wrote with your colleagues, Kreutz, Choma, Fiocco, and Russo that describes the SingWell project protocol. It lays out your long term goals. Do you want to add anything else to what you've said about where this project is headed?

Arla Good 13:54

Sure, the big picture of this project is that we have a network of choirs that are able to address the needs of these different populations. I want the network to be dense and thriving. The home of the grant is Canada. But of course, we have partners in the states, like Jessica, and in Europe and in New Zealand. So to have this global network of choirs that people can have access to, and to advocate for a social prescription model in healthcare. Have doctors prescribing these choirs, and this network is available for doctors to see, okay, here's the closest choir to you. So, in some ways, this is a third goal of the project is to be building this case for the social prescription of singing.

Ellen Bernstein-Ellis 14:41

Before we go too much further, I want to acknowledge that you picked a wonderful aphasia lead, Dr. Jessica Richardson. That's your role, right? We haven't given you a chance to explain your role with SingWell. Do you want to say anything about that Jessica?

Jessica Richardson 14:58

Yeah, sure. I'm still learning about my role. Overall, I know theme leaders, in general, were charged with overseeing research directions for their theme. Aphasias, the theme that I'm leader of, and then monitoring progress of research projects and the direction of that. So far, it's mostly involved some advising of team members and reviewing and giving feedback of grant applications. I'm supposed to be doing more on the social and networking end and I hope to be able to make more that more of a priority next year, but I do think this podcast counts. So thank you for that.

Ellen Bernstein-Ellis 15:33

Well, you did a wonderful presentation. I should be transparent, I was invited to be on the Advisory Committee of SingWell, and I got to hear your first presentation at the first project meeting where each team leader explained their focus and endeavor. I was so excited to hear the way you presented the information on aphasia, because again, we know that for some people, aphasia is not a well-known name or word. And even though this is a very educated group, and I think everybody, all the leaders know about aphasia, but it was nice to see you present and put on the table some of the challenges and importance of doing this research.

One of the things that really attracted me when reading about that 2020 article is that you talk about SingWell having an ability versus disability focus early, Arla, could you elaborate on that?

Arla Good 16:22

Our groups are open to anybody, regardless of their musical, vocal or hearing abilities. And we compare it often to the typical talk-based support groups that focuses on challenges and deficits. Of course, there's a time and place, these can provide a lot of benefit for people living in these communities. So, this isn't a replacement for these types of support groups, But, singing is a strength-based activity. They're working together to create a beautiful sound and there's often a performance at the end that they're very proud of. We're challenging stigma, especially in a population like aphasia, where it would seem like, oh, you have aphasia, you can't sing? But, of course they can. We're challenging that stigma of who can sing and who can't sing. We find that it's just so enjoyable for these people to be coming and doing something strength- based and feeling good. Going back to that, quote I said at the beginning, right? To feel like there's more to their identity than a diagnosis. This is what keeps them coming back.

Ellen Bernstein-Ellis 17:22

Beautifully said, and I can't help but think how that really connects with the life participation approach. There's no one better than Jessica, for me to throw that back out to her, and ask how she sees the connection between that.

Jessica Richardson 17:37

Yes, absolutely. Their focus on ability and fighting loneliness and isolation and on social well-being is right in line with it. Because LPAA is really focusing on reengagement in life, on competence, rather than deficits, on inclusion, and also on raising the status of well-being measures to be just as important as other communication outcomes.

I want to make sure we also bring up something from our Australian and New Zealand colleagues, the living successfully with aphasia framework, because it is also in line with LPAA and SingWell. I can say they have this alternative framework. They also don't want to talk about the deficit or disability. It doesn't try to ignore or even minimize the aphasia, but it emphasizes positive factors, like independence, meaningful relationships, meaningful contributions, like you know that performance. So there's just so much value and so much alignment with what Aphasia Access listeners and members really care about.

Ellen Bernstein-Ellis 18:44

That's a great transition for what I was thinking about next. I was very excited to see people talking about the 2018 review by Baker, Worrall, Rose and colleagues that identifies aphasia choirs as a level one treatment in the step psychological care model for managing depression in aphasia. So that's really powerful to me, and we're starting to see more research come out looking at the impact of participating in aphasia choirs. I'm really excited to see some of this initial research coming out.

Maybe you can address what some of the gaps in the literature might be when it comes to group singing? And its impact on well-being. Maybe Arla, we can start with that and then Jessica, you can jump in and address specifically communication and aphasia choirs. Arla, do you want to start out?

Arla Good 19:35

This is a very exciting time, like you said, there is research that is starting to come out. People are starting to study choirs as a way of achieving social well-being, psychological well-being and so the field is ripe and ready for some good robust scientific research.

Most of the studies that are coming out have really small sample sizes. It's hard to get groups together, and they often lack comparison groups. So what I think SingWell is going to do is help understand the mechanisms and what is so great about singing and what singing contributes. The other thing I'd like to mention is that with SingWell, our approach is a bit unique compared to what some of the other research researchers are doing, in that we're adopting a very hands-off approach to choir. So we're letting choir directors have the autonomy to organize based on their own philosophies, their expertise, and the context of their choirs. So we call it choir in its natural habitat.

And this is giving us the opportunity to explore group effects. What approach is the choir director taking and what's working, what's not working? And to have this large sample of different types of choirs, we can learn a lot from this number, this type of research project as well.

Ellen Bernstein-Ellis 20:54

What I really love about that is getting to know some of these wonderful colleagues through Aphasia Choirs Go Global and hearing about what their rehearsals and goals look like. There are some amazing similarities, just like saying, "You're doing that in Hungary? But we're doing that here, too." And there are some wonderful differences. I really firmly believe that there are a variety of ways to do this very successfully, just like there are a variety of ways to run successful aphasia groups, but there's going to be some core ingredients that we need to understand better.

Just before I go too far away from this, how about you? Do you want to speak to anything we need to learn in the literature about aphasia choirs?

Jessica Richardson 21:35

Yeah, I mean, I don't think I'm saying too much different than Arla. Arla, may want to follow up. But the main gap is that we just don't have enough evidence. And we don't have enough, like she said, solid methodology, high fidelity, to even support its efficacy to convince stakeholders, third party payers, etc. Anecdotal evidence is great, and YouTube videos that we create are also great, but it's not enough. And even more and more choirs popping up around the world, it's not enough.

We need that strong research base to convince the people that need convincing. SingWell is hoping to add to that through its pilot grants, through its methodology that they share for people to use. And I'm hopeful that other organizations, you know, like Aphasia Choirs Go Global, can link up at some point with saying, "Well, I'm excited about communities like that that are also supportive of researching choirs." Arla, think I saw you're wanting to follow up.

Arla Good 22:31

I just wanted to add to something that Ellen had said about the power and diversity and having these different perspectives. And another goal of SingWell is to create, and it's up on the website already, it's a work in progress, it's going to continue growing, but a menu of options for choir directors who are looking to start a choir like this. Like if you want this kind of goal, here are some tips. So, if it's a social choir, you might want to configure the room in a circle. But if you have musical goals, maybe you want to separate your sopranos, your altos, tenors, and your bass. It's not one prescribed method. It's a menu of items that we're hoping we can through, this diversity of our network, that we can clarify for people who are trying to start a choir for themselves.

Ellen Bernstein-Ellis 23:19

I love that because I can hear in my head right now, Aura Kagan saying over and over again that the life participation approach is not a prescriptive approach. But rather, you're always looking at what is the best fit for your needs. Jessica, your head is nodding, so do you want to add anything?

Jessica Richardson 23:37

It's a way to shift your whole entire perspective and your framework. And that's what I love about it.

Ellen Bernstein-Ellis 23:44

We'll just go back to that 2020 article for a moment because I really liked that article. You and your authors describe four measures of well-being and there are potential neuroendocrinological, that's really a lot of syllables in here, but I'll try to say it again, neuroendocrinological underpinnings,

Arla Good

The hormones---

Ellen Bernstein-Ellis

Oh, that's better, thank you, the hormones, too. Could you just take a moment and please share what these four measures of well-being and their hormonal underpinnings might be?

Arla Good 24:11

For sure. The first one is connection, the connectedness outcome. So we're asking self-report measures of how connected people feel. But we're also measuring oxytocin, which is a hormone that's typically associated with social bonding.

The second measure is stress. And again, we're asking self-report measures, but we're also looking at cortisol, which is a hormone associated with stress.

The third measure is pain. And this one's a little bit more complex, because we're measuring pain thresholds. Really, it sounds scary, but what we do is apply pressure to the finger and people tell us when it feels uncomfortable. So it's actually well before anyone's experiencing pain. But we're thinking that this might be a proxy for beta endorphin release. So that's the underpinning there.

And then the last outcome is mood. This is also a self-report measure. And one of the types of analyses that we're running is we want to see what's contributing to an improved mood. Is it about the cortisol? Is it about just like deep breathing and feeling relaxed? Is it that or is there something special happening when they feel the rush of oxytocin and social connectedness? The jury's still out. These are super preliminary data at this point, especially with oxytocin, there's so much to learn. But those are some of the hormones, the sociobiological underpinnings that we're exploring.

Ellen Bernstein-Ellis 25:31

That makes for some really exciting research and the way you frame things, SingWell is supporting grants, maybe you could comment on how its biopsychosocial framework influences the methods and outcome measures that you want to adopt.

Arla Good 25:48

Sure, we do provide guidelines and suggestions for measures. Jessica alluded to this. We have it all up on the website, if anyone else wants to run a study like this. And then we have some that we're requiring of any study that's going to be funded through SingWell. And this is so we can address this small sample size problem in the literature. So the grant runs for six more years. It's a seven year grant. And at the end, we're going to merge all the data together for one mega study. We want to have some consistency across the studies, so we do have some that are required. And then we have this typical SingWell design. We're offering support for our research team, from what a project could look like.

Ellen Bernstein-Ellis 26:28

Well, this podcast typically has a wonderful diverse demographic, but it includes researchers. and clinical researchers who collaborate. So, let's take a moment and have you describe the grant review process and the dates for the next cycle, just in case people want to learn more.

Arla Good 26:45

Sure, so we are accepting grants from SingWell members. So the first step is to become a SingWell member. There is an application process on the website. We have an executive committee that reviews the applications twice a year, the next one is in scheduled for November. There's some time to get the application together. Once you're in as a member, the application for receiving funding is actually quite simple. It's basically just an explanation of the project and then it will undergo a review process. Jessica is actually one of our reviewers, so she can speak to what it was like to be a reviewer,

Ellen Bernstein-Ellis 27:21

That would be great because, Jessica, when you and I chatted about it briefly, I've never heard a reviewer be so excited about being supportive in this process. So please share a little bit more because I thought your perspective was so refreshing and positive.

Jessica Richardson 27:36

I have to say too, I have definitely benefited from having some amazing reviewers in my own lifetime. I definitely have to point out one who was so impactful, Mary Boyle, her review, it was so thorough, and it was so intense, but it elevated one of my first endeavors into discourse analysis to just like a different level. And just the way that she treated it as a way to help shape, she was so invested, in just making sure that we were the best product out there. I learned what the world needed to learn. I definitely learned a lot from that experience and from other reviewers like her that I've benefited from.

As a reviewer, whenever I review anything, I try to keep that same spirit. So when I was doing SingWell reviews, I made sure that I revisited the parent grant. I did a really good, thorough reread. I provided feedback and critiques from the lens of how does this fit with SingWell's aims? And, how can it be shaped to serve those aims if it isn't quite there yet? So it's never like, "Ah, no, this is so far off", it was just like, "Oh, where can we make a connection to help it fit?" Then trying to provide a review that would be a recipe for success, if not for this submission cycle, then for the next.

And as a submitter, even though I mean, we didn't have a meeting to like all take this approach. But I felt that the feedback that I received was really in that same spirit. And so I love feedback in general. I don't always love the rejection that comes with it. But I do love stepping outside of myself and learning from that different perspective. And I've really just felt that this thing while reviewers were invested, and were really just interested in shaping submissions to success,

Ellen Bernstein-Ellis 29:24

That's really worthwhile, right? So you get something, even if you're not going to get funding. You still get to come away with something that's valuable, which is that feedback.

We've been talking about measures and I'm really interested in that as a topic. Jessica, could you take a moment and share a little bit about how SingWell's pre/post measures are being adopted for aphasia? We all know that's some of the challenges. Sometimes, some of the measures that we use for mood, connectivity, or stress are not always aphasia-friendly. So what does that process look like?

Jessica Richardson 29:59

I will say they did their homework at the top end, even before the proposal was submitted. Really having you on the advisory board, and I was able to give some feedback on some of the measures. Some of the measures they've already selected were specific to aphasia. For Parkinson's disease, there are Parkinson's disease specific measures and for stuttering, specific measures. And for aphasia, they picked ones that are already aphasia-friendly. What I was super excited about too, is that they included discourse without me asking. It was already there. I think we helped build it to be a better discourse sample and we've added our own. So it's already in there as their set of required and preferred measures. But the other thing is that the investigator, or investigators, have a lot of latitude, according to your knowledge of the clinical population that you're working with, to add outcomes that you feel are relevant. That's a pretty exciting aspect of getting these pilot funds.

Ellen Bernstein-Ellis 30:58

So there's both some core suggested measures, but there's a lot of latitude for making sure that you're picking measures that will capture and are appropriate to your particular focus of your projects. That's great. Absolutely.

Jessica Richardson 31:09

I definitely feel that if there were any big issue that we needed to bring up, we would just talk to Arla and Frank, and they would be receptive.

Ellen Bernstein-Ellis 31:20

I've been very intrigued and interested in attempts to measure social connectedness as an outcome measure. You speak about it in your article, about the value of social bonding and the way music seems to be a really good mechanism to efficiently create social bonding. Is there something about choir that makes this factor, this social connectedness, different from being part of other groups? How are you going to even capture this this factor? Who wants to take that one?

Arla Good 31:50

I do, I can talk, we can do another podcast on this one.

Jessica Richardson 31:55

It's my turn, Arla. I'm just kidding (laughter).

Ellen Bernstein-Ellis 32:01

You can both have a turn. You go first, Arla, And then Jessica, I think you will probably add,

Jessica Richardson 32:04

I'm totally kidding (laughter).

Ellen Bernstein-Ellis 32:06

Go ahead, Arla.

Arla Good 32:07

This is what I did my dissertation on. I truly believe in the power of group music making. So singing is just an easy, accessible, scalable way to get people to move together. It's consistent with an evolutionary account that song and dance was used by small groups to promote social bonding and group resiliency. I've seen the term collective effervescence in these types of writings.

When we moved together, it was like a replacement for in our great ape ancestors, they were one on one grooming, picking up the nits in each other's fur. Human groups became too large and too complex to do one on one ways of social bonding. And so we needed to develop a way to bond larger groups rapidly.

And the idea here is that movement synchrony, so moving together in precise time, was one way of connecting individuals, creating a group bond. Singing is just a fun way of doing that. I've been studying this for about 15 years and trying to understand. We've pared it down, right down to just tapping along with a metronome, and seeing these types of cooperation outcomes and feelings of social bonding, connectedness. I do think there's something special, maybe not singing specifically, but activities that involve movement synchrony. We could talk about drumming, we could talk about dance, I think that there is a special ingredient in these types of activities that promote social bonds.

Jessica Richardson 33:37

There's been some of us even looking at chanting, there's research about that as well.

Arla Good

We should do a SingWell study on chanting!

Ellen Bernstein-Ellis 33:43

Jessica, what else do you want to add about what is important about capturing social connectedness? Or, how do we capture social connectedness?

Jessica Richardson 33:53

I think I'll answer the first part, which is, what is special about thinking about it and capturing it. It's something that we've slowly lost over decades and generations, the communal supports. Our communities are weakened, we're more spread out. It's also a way of bringing something back that has been so essential for so long. We've weakened it with technology, with just all the progress that we've made. It's a way to bring something that is very primitive and very essential back. So, that doesn't totally answer your question, though.

Ellen Bernstein-Ellis 34:31

When we think about the isolation related to aphasia and the loss of friendship, and some of the wonderful research that's coming out about the value and impact of friendship on aphasia, and then, you think about choirs and some of this research--I believe choir is identified as the number one most popular adult hobby/activity. I think more people are involved in choirs as an adult. It's not the only meaningful activity, but it's a very long standing, well developed one,

Jessica Richardson 35:03

We have to figure out how to get the people though who will not touch a choir with a 10 foot pole?

Ellen Bernstein-Ellis 35:08

Well, we will continue to do the work on the other groups, right, that suits them very well. You know, be it a book club, or a gardening group, or a pottery class, or many, many, many other choices.

Jessica Richardson 35:21

Or a bell choir?

Ellen Bernstein-Ellis 35:24

Bell choirs are great, too.

Do either of you want to speak to what type of measures captures social connectedness or what you're using, or suggesting people try to use, for SingWell projects?

Jessica Richardson 35:38

I think Arla already captured some of those with those markers that she was talking about earlier. Hormonal markers. But the self-report questionnaires, and that perspective. There's other biomarkers that can very easily be obtained, just from your spirit. So I think that's going in the right direction, for sure.

Arla Good 35:59

Yeah, we've also looked at behavioral measures in the past like strategic decision making games, economic decision making games, and just seeing if people trust each other, and whether they're willing to share with each other. We've asked people how attractive they think the other people are. Questions like this that are capturing the formation of a group, whether they're willing to share with their in-group. It's a question of in-group and out-group, and what are some of the effects of the in-group.

Jessica Richardson 36:26

And we're definitely exploring too, because we do a lot of neurophysiological recording in my lab. Is there a place for EEG here? Is there a place for fNIRS, especially with fNIRS, because they can actually be doing these things. They can be participating in choir, we can be measuring things in real time. While they're doing that, with the fNIRS-like sports packs, so sorry, fNIRS is functional near-infrared spectroscopy in case some of the listeners aren't sure.

Ellen Bernstein-Ellis 36:52

I needed help with that one too. Thank you.

I'm thinking about some of the work done by Tom Sather that talks about the sense of flow and its contribution to eudaimonic well-being, right? I think that's a key piece of what SingWell is looking at as well. It's exciting to look at all these different measures, and all these different pillars that you are presenting today.

And if people want to find out more about SingWell, do you want to say something about your website, what they might find if they were to go there?

Arla Good 37:25

Yes, go to the website, SingWell.org, pretty easy to remember. And on the website, you'll find all the resources to run a research study, to apply to be a member. We have resources for choir directors who are looking to start their own choir, we have opportunities to get involved as research participants if you're someone living with aphasia, or other communication challenges. There's lots of opportunities to get involved on the website. And you can sign up for our newsletter and receive the updates as they come and check out our website.

Ellen Bernstein-Ellis 37:57

That's great. I certainly have been watching it develop. And I think it has a lot of really helpful resources. I appreciate the work that's been put into that. How do people get involved in the SingWell project? You mentioned earlier about becoming a member. Is there anything else you want to add about becoming engaged with SingWell?

Arla Good 38:18

I think the ways to become involved, either becoming a member or starting a choir using the resources, or like I said, signing up for the newsletter just to stay engaged. And as a participant, of course, doing the surveys or signing up for a choir if you're one of the participants called.

Ellen Bernstein-Ellis 38:35

Thank you. I'm was wondering if you'd share with the listeners any sample projects that are underway.

Arla Good 38:46

For sure. So we have five funded studies this year. We have one ChantWell, which Jessica spoke about, assessing the benefits of chanting for breathing disorders. That's taking place in Australia. The effects of online group singing program for older adults with breathing disorders on their lung health, functional capacity, cognition, quality of life, communication skills and social inclusion. That is in Quebec, Canada. The third study, the group singing to support well-being and communication members of Treble Tremors. That's a Parkinson's choir taking place in Prince Edward Island, Canada. The fourth is how important is the group in group singing, so more of a theoretical question looking at group singing versus individual singing, an unbiased investigation of group singing benefits for well-being and that's also in Quebec. And then last but not least, I saved it for last, is our very own Jessica Richardson's group singing to improve communication and well-being for persons with aphasia or Parkinson's disease. So I thought I might let Jessica share, if she's open to sharing some of what the research study will entail.

Jessica Richardson 39:53

Oh, yes, thank you. When we first started our neuro choir, I had envisioned it as being an aphasia choir. And we had so much need in the community, from people with other types of brain injury. Our Parkinson's Disease Association, too, has really been reaching out ever since I've moved here. They have a group actually, they're called the Movers and Shakers, which I really love. So, we have a pretty healthy aphasia cohort of people who are interested, who also, you know, taking a break and only doing things virtually if they are interested, you know, since COVID. And then we have our Parkinson's cohort here as well, the Movers and Shakers, were following the suggested study design, it's a 12 week group singing intervention. They have suggestions for different outcome measures at different timescales, we're following that and adding our own outcome measures that we also feel are relevant. So we have those measures for communication and well-being, including the well-being biomarkers through the saliva. As she mentioned, already, we have latitude for the choir director, like who we want to pick and what she or he wants to do. We already have that person picked out. And we already know, and have all of that stuff figured out. There is some guidance, but again, flexibility for our session programming. And we have the choices over the homework programming, as well. We are really looking at this choir in the wild, and looking at those outcomes with their measures. So we're excited about it.

Ellen Bernstein-Ellis 41:22

I think you've just thought of a great name for a future aphasia choir, which is a "neuro choir choir in the wild"

Jessica Richardson 41:30

Well, out here, we're a choir in the wild, wild west.

Ellen Bernstein-Ellis 41:34

There you go. Absolutely. What have been some of the most surprising findings of the benefits of singing so far that have come in through the SingWell project? Either of you want to take that on?

Arla Good 41:46

I don't know if it's the most surprising, but it's definitely the most exciting. I'm excited to continue unpacking what's happening with oxytocin, I think it's a pretty exciting hormone, it's pretty hot right now. It's typically associated with being like a love hormone. They call it associated with sex, and it's associated with mother-infant bonding. If we can find a way that's not mother-infant or pair bonding to release oxytocin, that's very exciting. If group singing is one of those ways to promote this sense of "I don't know where I end and you begin, and we're one" and all those loving feelings. As Jessica mentioned, the missing piece, and how we relate to each other in a society, choir might be an answer to that. I'm really excited about the oxytocin outcome measure. Again, it's still very early, I don't want to say definitively what's happening, but it's a pretty exciting piece.

Jessica Richardson 42:45

I have a future doctoral student that's going to be working on this. That is the part she's most interested in as well..

Ellen Bernstein-Ellis 42:52

So there are some really good things that, hopefully, will continue to tell us what some of these benefits are and that it's important to fund and connect people to these types of activities. You said, this is like year one or two of a 6 year project, was that right? Or is it seven year?

Arla Good 43:09

It's seven year.

Ellen Bernstein-Ellis 43:10

So what is your hope for the future of the SingWell project?

Arla Good 43:15

The secondary goals would be the hope for the future, of actually creating change in the communities and getting people to think outside the box of providing care. Is there a choir that can be prescribed nearby? Is there a way to train these choir directors so that they have the correct training for this specific population? So drawing from the knowledge from speech- language therapy, from choir direction, from music therapy-

Ellen Bernstein-Ellis 43:42

Music therapy, right.

Arla Good 43:43

Of course, of course. So creating an accreditation program and training choir directors to lead choirs like this, and having this army of choir directors around the world that are doing this. So, this is a big goal. But that's what I hope to see.

Ellen Bernstein-Ellis 44:00

That's fantastic. And I think there's some researchers who are really working hard at looking at protocols and asking these questions. And I know, I've been inspired by some of the work that Ali Talmage is doing in New Zealand that's looking at some of these questions. And, Jessica, do you want to add what's your hope is as aphasia lead? Or, what you're thinking about for the SingWell project that you're excited about?

Jessica Richardson 44:21

We have to generate that evidence that we need and mentioning again, those 10 foot pole people, to reach out to let people know that choirs aren't just for people who think that they can sing. We definitely have had some very energetic and enthusiastic choir members who think that they can sing and cannot, and they're still showing up. Maybe you're the one who thinks that choirs aren't for you. If we can generate enough energy, inertia, and evidence to convince those that it might be worth giving a try. I think some of them are going to be surprised that they enjoy it and "oh, I can sing." So I think that to me is a future hoped for outcome.

And then again, seeing it spread out to other gardening groups, other yoga groups, all these other things that we know are happening within Aphasia Access members and beyond to see, okay, there's this methodology. This is what's used to study something like this, let's apply it also so that its efficacy data for these other approaches that we know and we see can be helpful, but we don't have enough proof to have someone prescribe it and to get those stakeholders involved.

Ellen Bernstein-Ellis 45:33

Yes. And we talked about the importance of some of the work that's being done with mental health and aphasia and how some of the information that you're pursuing could really tie in and help us support and get more work in that area as well. So really exciting.

I can't believe we have to wrap up already. I agree with you all, that we could just keep talking on this one. But let's just end on this note, I would like to find out from both of you. If you had to pick just one thing that we need to achieve urgently as a community of providers and professionals, what would that one thing be? What would you like to speak to? At the end of this discussion we've had today and Arla, you get to go first again.

Arla Good 46:15

The one thing we need to achieve urgently is to find a way to address people's needs in a more holistic way. And to see the human as a whole, that it's not just this piece and this piece and this piece, but all of it together? And how can we do that? How can we communicate better as practitioners, as researchers, so that we can address these needs more holistically?

Ellen Bernstein-Ellis 46:36

Thank you. Thank you. And Jessica, what would you like to say?

Jessica Richardson 46:41

I could just say ditto. I totally agree. So the end.

But I think the other part is from a clinician standpoint. What I hear most from colleagues that are out there in the wild, and former students, is that they want the "How to" info which is perfect, because, SingWell has a knowledge mobilization aim, and the exact aim of that is to develop and share best practice guides, which you know, are already mentioned, choir sustainability guides, how to fund it, how to keep it going. Really important. And they're going to update these regularly. It's going to be available in lots of languages. So that's something I'm especially excited for, for our community, because I know so many people who want to start a choir, but it feels too big and intimidating, and maybe they don't feel like they have the musical chops. But this will really help them get over that hump to get started and will address that need. And that desire, that's already there, in a big way.

Ellen Bernstein-Ellis 47:42

Thank you. I'm so appreciative that you both made this happen today. It was complicated schedules. And I just really, really appreciate want to thank you for being our guests for this podcast. It was so much fun. I'm excited to follow the SingWell project over the next seven years and see what continues to grow and develop.

So for more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasiaaccess.org And if you have an idea for a future podcast series topic, just email us at [email protected] And thanks again for your ongoing support of Aphasia Access. Arla, Jessica, thank you so much. Thank you.

References and Resources

UNM Neuro Choir:

https://www.youtube.com/watch?v=zQuamJgTVj8&list=PLy586K9YzXUzyMXOOQPNz3RkfRZRqtR-L&index=5

https://www.youtube.com/watch?v=guU_uRaFbHI&list=PLy586K9YzXUzyMXOOQPNz3RkfRZRqtR-L&index=6

https://www.youtube.com/watch?v=Q4_0Xd7HNoM&list=PLy586K9YzXUzyMXOOQPNz3RkfRZRqtR-L&index=7

www.singwell.org

Good, A., Kreutz, G., Choma, B., Fiocco, A., Russo, F., & World Health Organization. (2020). The SingWell project protocol: the road to understanding the benefits of group singing in older adults. Public Health Panorama, 6(1), 141-146.

Good, A., & Russo, F. A. (2022). Changes in mood, oxytocin, and cortisol following group and individual singing: A pilot study. Psychology of Music, 50(4), 1340-1347.