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  Dr. Janet Patterson: Welcome to this Aphasia Access Aphasia Conversations Podcast, a series of conversations about the LPAA model and aphasia programs that follow this model. My name is Janet Patterson, and I am a research speech-language pathologist at the VA Northern California Healthcare System in Martinez, California. Today, I am delighted to be speaking with Dr. Elizabeth Madden, an Assistant Professor at Florida State University in the School of Communication Sciences and Disorders and an affiliate of the Institute for Successful Longevity. Liz also leads the FSU Aphasia Research Laboratory. Liz's research, teaching and clinical interests focus on rehabilitation of aphasia, and specifically on understanding the relationship between spoken and written language abilities in individuals with aphasia and developing behavioral treatments to address reading and writing disorders post stroke. Her work also addresses the impact of aphasia on the friendships and social well-being of people with aphasia and their care partners. These Show Notes accompany the conversation with Liz but are not a verbatim transcript.   In today's episode you will hear about: the power of friendship and what people with aphasia and care partners think about how aphasia can affect the ability to create and sustain friendships, the definition of literacy and its behavioral components, and behavioral treatments for reading comprehension deficit in aphasia.   In 2024, Liz was named a Distinguished Scholar USA by the Tavistock Trust for Aphasia UK. The Tavistock Trust aims to help improve the quality of life for those with aphasia, their families and care partners by addressing research capacity related to quality-of-life issues in aphasia. Congratulations on receiving this honor, Liz. Aphasia Access collaborates with the Tavistock Trust for Aphasia in selecting the awardees and is pleased to have the opportunity to discuss their work and the career influence of the Tavistock Award.   Welcome Liz, to Aphasia Access Conversations.   Dr. Liz Madden: Thank you, Janet. I'm really happy to be here today. I also say thank you to Aphasia Access and to the Tavistock Trust for Aphasia. I'm very grateful for this award and excited to have this conversation.   Janet: I'm excited to be talking to you, my friend and research partner in several endeavors that we've been working on over the last few years.   Liz, as we've said, you were named a Tavistock Trust Distinguished Scholar USA for this year, and you join a talented and dedicated group of individuals. How has receiving the Tavistock Award influenced your clinical and research efforts in aphasia,   Liz: I first wanted to extend that thank you to the Tavistock Trust for Aphasia, and specifically Henrietta, the Duchess of Bedford and the honorable Nicole Campbell, and just a very gracious, sincere thank you for all the time and effort and support they give to aphasia researchers. I would say, I'm just delighted and very humbled to be recognized this year. I would say further that this award motivates my work that is focused on trying to really make an impact on the lives and quality of life and successful living for people who have aphasia and continuing my work. My beginning work was really more impairment focused, which some of that we will talk about, and I really value that. But having this award, and the more I stay in the field, it is extending that and making sure that everything I'm doing always is directly related to helping the lives of people with aphasia.   Janet: That leads right into the question I'd like to begin with Liz, which is about your recent work investigating the role of friendship for persons with aphasia. I believe in the power of friendship and community during joyful times and also during the sad times in one's life. In Aphasia. Access podcast episode number 119, Finding the person in front of aphasia, I talked with your friend and colleague, Dr Lauren Bislick, with whom I believe you collaborate to investigate friendship and aphasia. How did you become interested in this aspect of aphasia, and what can you tell us about your work in this area and your collaboration with Lauren?   Liz: Lauren and I did our Ph.D.'s together. We both were mentored by Diane Kendall at the University of Washington, so Lauren and I are Ph.D. sisters. Also, we were both at Project Bridge, led by Dr. Jackie Hinkley in 2018. That's really where my interest in friendship began. That conference brought together researchers, speech-language pathologists, people with aphasia, and their friends and family. I was the researcher at a table, and we ended up being Team Friendship. Lauren was also at this meeting, but she was at Team Yoga; Lauren does a lot of work with friendship, but also with yoga. My other colleague who does a lot of friendship work with me is Dr. Michelle Therrien here at FSU. She primarily works with children who use AAC, but her main research is friendship. She and I had already had some conversations about the importance of friendship, particularly for people who have communication disorders. The idea was we leave the conference and to take action and carry out some of the goals that were generated from that discussion. So that's when I reached back out to Lauren, because she was at that conference. Then I also reached out to my friend, Michelle Therrien, and other individuals who became part of our Team Friendship, Dr. Sarah Wallace, who's also one of our good friends and collaborators, and Rachel Gough Albritton who is one of Jackie Hinkley's former doc students and here at FSU as well. and the office of research. That is the background of some conversations before Project Bridge, but really for me, coming back and actually starting studies addressing different aspects of friendship, which I know we'll talk more about, was really brought about by the Project Bridge conference.   Janet: That is quite a story, and I can see you sitting around the table and developing Team Friendship - good for you.   We all know, Liz, that one of the unfortunate consequences of aphasia can be the loss of or the diminishing of friendships, or the disruption of the communication skills important to developing and sustaining friendship and community. What have you learned from people with aphasia about their successes and challenges in sustaining and creating new friendships.   Liz: Yes, good question. Well, at that conference that I mentioned, there were five or six people with aphasia, and initially our table was labeled something like, What happens in the long run? and we started having conversations. It was very clear after our initial conversation that the group centered on relationships and friendship, so we shifted to being friendship only. I will say, just at that table, it became very clear to me, that's what rose to the top when the group was thinking about the bigger picture of living life.   In a research project we've done there was a small sample of 15 people with aphasia, and we talked to them over time. I think the timing of a conversation is really something important to keep in mind when we're talking to people with aphasia about any topic, of course, but particularly friendship. From other studies we've noticed that responses are really different. If we're talking during the early days, maybe the acute days, versus the chronic days, we'd get really different responses. Just a quick summary, again, this was 15 people and a unique set. Most people in our study were a part of aphasia groups, and, of course, really motivated to do research. But I will say, when we looked at their responses, when asked to think back to the early days, all different aspects of friendship, how supported they felt, or how they were able to communicate, and we compared it to their responses in the now. Overall, the pattern was less satisfaction, feeling less supported or less able to engage in those earlier days, but more of a recovery pattern over time, but again, not for everybody. There were still a few people in our group that were reporting not having many friends. Our paper had a different light, a positive light about friendships. Some of the other papers out there have a more negative tone. It's a very important area we need to address. I was happy to see this group reporting, now that they had been living with aphasia for several years, their pattern of more negative responses early, and a recovering pattern now. They reported making friends with other people who have aphasia, and finding at this point, who are those good friends.   There's other great work being done by other colleagues, Brent Archer, Jamie Azios and Katie Strong, who are studying the same topic. They had a great paper that describes who stuck around, they were examining the next steps of what it takes to support the positive recovery that we know does happen for some people.   Janet: I like the positive perspective you are taking. Given that one has had a stroke, and given that the this is the situation in life, what is the positive? What can you do? Who are your friends? Look at positive ideas rather than publishing research on all the negative aspects. Kudos to you for doing that.   Liz: Thanks, all of it's important, right? We have to know that. I think we had a special group. I think we had a particularly positive outcome, and it was good to know that friendships don't disappear for everyone. But I think there's something that those people had done and that their friends had done, that we're still trying to learn more about.   Janet: Thank you for that work. Liz. It makes me think about the aphasia journey in that it involves not just the person with aphasia, but also their care partners and all the people around them. In your investigations of friendship, what do the care partners of persons with aphasia tell you about their successes and challenges in sustaining and developing friendships? These friendships could be individual friendships or partner friendships or group friendships through social, religious or professional activities or even community groups.   Liz: Thank you for this question. I think it's sometimes a forgotten group that we overlook, the care partners, and the critical role they play in the recovery of people with aphasia. I always try to have us remember we want the care partners to do well on their own as people, and so we've done a couple projects. We've just finished data collection on a much larger study of 80 aphasia care partners, and I'm just getting into those data. We did a Qualtrics survey and also did experience sampling, where we used a phone app, and four times a day for two weeks, participants got these little pings, and they had to tell us, Where are you? What are you doing? Who are you with? How are you feeling? When was the last time you interacted with a friend? Was it a text? I don't have the amazing outcomes for you yet. This project was a much bigger follow-up to a project a few years ago with 35 care partners. We, of course, wanted to interview them but then COVID was happening, so we settled for a really nice Qualtrics survey.   I will say that these individuals were surprised when we were reaching out to them. They kept trying to schedule their loved one with aphasia, and we said, “No, we want to talk to you about your friendships.” And they were surprised, asking, “You want to talk about me.' I will say they were very excited that we wanted to know about them. Back to the timeline I shared earlier in that very small study, the profile was opposite. We asked them about their friendships before they were caregivers, the early stages of caregiving, and then now, and their comments kind of make sense. Across the group they reported in the early stages, they felt like they had really great friends, support and satisfaction. People were rallying around them, coming to the hospital to support them. Many of them had been caregiving for a very long time when we did a comparison, and their reported friendship satisfaction and support was actually lower now. The questions were not the same and the groups were different, but as I told you a few minutes ago, the people with aphasia were more negative in the acute stage, and our small group were more positive now with how they're feeling about their friendships, and the care partners were the opposite. They were feeling more supported in the beginning, and now as time has gone on, some of them report the friends aren't there as much. Some of them felt like they were a burden, or they didn't know how to engage, being very selfless. They have dropped their own social interests to take care of their loved one. We did see in that project, that the longer, the more months a person had been caregiving, was correlated with poor self-perceived friendships and also how they perceived their loved one's health. That was just their perception. If they perceived their loved one to have more health concerns, not just a feature but overall health, they also tended to rate themselves as not as satisfied with their friendship. Bringing in that piece of information and the caregiving burden into our new projects, we did actually get scales on resilience and caregiving burden depression. In this new project we replicated some of our same questions, and we're now trying to look more at overall well-being, seeing how resilience and purpose in life and caregiving burden might play a role.   Janet: That reminds me of the commercials, when you are taking off in an airplane or when you are thinking about being a care partner, you do have to take care of yourself as the care partner before you can give the best care to the person with aphasia. Anything that we can do to focus on the person the with aphasia, and also focus on the care partner, I think, is good in terms of developing and sustaining friendships,   Liz: Yes. Care partners definitely have a lot more to say, and we haven't actually been able to do face to face interviews yet, but we did have a lot of really rich, open ended responses and surveys that we're still looking through. A piece I'm really interested in, is we have that one-time perception when they did our one-time survey, now we have their responses, we can track how people respond over a two-week period, were they always at home with their loved ones and not responding to friends? I think there's just a lot and again, trying to understand from this group what are the positives. Who are the people that have these positive responses? Then, of course, the next big steps are trying to provide more research resources and interventions for both care partners and people with aphasia. Our group has not yet reached out to friends, so that's a big part to come. I think other researchers have examined friends and a key part intervening with these friends too.   Janet: People with aphasia and care partners have different friendship styles and needs, and when aphasia disrupts communication, it can also affect the way a person approaches friendship. As speech-language pathologists, I believe that we can play a role in guiding a person with aphasia and a care partner to develop communication skills that can support friendship efforts. Liz, what are some ideas or actions that you might think of for speech-language pathologists in a busy clinical practice? What kind of actions can they take to support friendship activities, for a person with aphasia, recognizing, of course, that we are all different in our friendship activities. Also recognizing that you're at the very beginning of some of this work, I'm hoping that you have some ideas you might be able to share with us.   Liz: Yes, actually our very first friendship project addressed this topic. It was led by Michelle Therrien, and we surveyed about 40 speech-language pathologists trying to find out their view of the role that they think they should play. They find friendship to be very important. They find it to be in their scope of practice. But not surprising, were not aware of resources. They felt overwhelmed with how much speech-language pathologists have to cover, right? But it was really good to know that the group we reached out to found it to be a very important part of their practice that they want to address. I think you hit on something really important, that we teach and adopt having a person-centered care model, and we know that it's part of what we ask about. The simplest thing is asking. We don't need tools. We just need to make sure it's part of what we ask, making sure we're talking about relationships, talking about friendships.   There are some really great tools that do exist. There's the Stroke Social Network Scale by Sarah Northcott and Katerina Hillary from the UK. Katie Strong, Brent Archer, Jamie Azios and Natalie Douglas are a wonderful group who have been studying friendship. They've used the Social Convoy Model in some of their papers. It has a great visual that they have used, and therapists can also use. Basically, it is mapping out the social network of who's most important, which could be used one time, or as a pre-post measure. There are different ways, formal or informal, of trying to monitor someone's social network or how they feel supported. I don't think there's a target number of friendships and I don't think more means better, but it could be just making sure we're checking in and that we know that's an important part of therapy. We want them to be able to communicate and interact with friends. Speech-language pathologists are creative in to how to make that happen.   Janet: I agree with that view Liz, and I hope that speech-language pathologists will feel comfortable being creative and asking people about their friendships or what they might need to help maintain or sustain their friendships.   I would like to turn now to the topics of reading and literacy, which I know you have been investigating. While these terms are related, they are not synonymous. Would you please explain the difference between them and how you are investigating both in your research?   Liz: Yes. Thanks. That is a good question. To be honest, the first answer is not very scientific. When I was writing papers it was getting cumbersome to always write reading and spelling/ writing. The term came to be when I wanted to make sure that I was making it clear that I wasn't just focused on reading, but also concerned with the spelling and writing components. With my colleagues, Jessica Obermeier and Aaron Bush, we started using the term literacy for some of our work. People will have different ideas of what literacy might entail. I have been describing treatment as “literacy focused”, working on reading and spelling and writing.   My initial work was very much focused on reading, and over the past several years I became more interested in trying to also add on the spelling component. If we're working on spelling and writing it gives us a chance to inherently work on the reading. If we're only focused on reading, it doesn't bring in the writing. There's a time for them to be separate, I fully agree. There are also times where they can be targeted at the same time.   Janet: That makes perfect sense. When I think about how we discussed in the past, reading for pleasure, or reading to gain knowledge, or reading for information, or reading for safety, so many different aspects of reading, literacy also factors into how you use reading in those situations.   Liz: Yes, and so in a lot of day-to-day communication, you need both, right? It's for text messaging, right? We need to read it and respond in a written way, also emails. There are lots of instances where for the for the interaction to go well, we need to be able to read and respond in writing, such as filling out forms, email, texting, social media. For a lot of interactions we need both for there to be a successful written language exchange.   Janet: Liz, as part of our work with the Academy of Neurologic Communication Disorders and Sciences, Aphasia Writing Group, you and I were part of the team who critically reviewed treatment approaches for reading comprehension deficits in persons with aphasia. You've also investigated, as you mentioned earlier, specific aspects of reading deficits in persons with aphasia. What are some of the insights that you have gained from this work? And by the way, it was such a pleasure doing that critical review of treatment for reading deficits, and there was a lot of interesting information that came to light in that paper.   Liz: Yes, thank you. I was going to comment that I remember we thought we were going to have all these papers to go through and really and that review, we were very much focused on papers where the main outcome was reading comprehension. When we stuck to what our aim was, there really weren't that many papers that that met the aim of that project. So that really brought to light that it really is an area of our field that doesn't have enough attention.   Some of my recent projects, as I mentioned with Aaron Bush and Jessica Obermeier, we've talked to people with aphasia and gotten their perspective of before and early days. I really like doing this research over time. Things change, but we learned just how important reading and writing are to people with aphasia, and that they really want to work on it. I think we've seen when we looked in the literature, there wasn't much there. When we've talked to people with aphasia and speech-language pathologists, they want to work on reading, and they're not sure how. That further motivates me that this is an area to work on.   In some of my beginning work, I was Diane Kendall's research speech language pathologist for a few years before I did my Ph.D., and I exclusively delivered her phono motor treatment. In that research trial, the main outcome was word retrieval, but the therapy that she designed inherently worked a lot on reading and writing. We retrained every phoneme - how to say it, what your mouth is doing, and also the graphemes that go with the phonemes. As her research speech pathologist, that's really when I got very interested in reading. I'd be in these sessions, and we'd finally bring out the graphemes that go with the phonemes. I recall telling people that this is going to get better – and it did not. That connection between the phonemes and the graphemes, for a lot of people, wasn't there. In that clinical experience as her research speech pathologist is when I realized that the treatment improved reading for some people, but not for everyone. So that's my background of really getting focused on reading.   In the last few years, I've been working on adapting that original version of treatment that was for word retrieval. I've added some components to make it more focused on reading. I've been working with Olga Burkina, who's at the Kessler Stroke Foundation, and has an NIH grant where she is pairing exercise with this reading focused phono motor treatment. It's fun to be a part of that group exploring the idea of doing aerobic exercise to improve the brain blood flow, and to see if that's going to help improve reading treatment. Again, the idea being going forward is what the treatment might change.   There are some other projects also. I'm working with Will Graves at Rutgers. He is using computational modeling to have us stop guessing which treatment. We're trying to get a really good baseline assessment, trying to find out about semantic impairment, phonological impairment, and then we're using this reading focused phono motor treatment. We also have a reading focus semantic feature analysis. I really enjoy getting to work with different researchers who have these wonderful, big questions, and that I'm getting to support it as the speech-language pathologist on these projects focused on reading and writing and phono motor treatment. So those are some exciting projects I'm involved in right now.   Janet: That's exciting, because you started out by saying there were only a few papers that we found that really address reading treatment, and you're right.  It's daunting, then how do you select the reading treatment? How do you help this person with aphasia who wants to improve their reading comprehension? I think it's exciting that you've got all these different avenues and are working with a variety of people to investigate treatment.   Liz: Yeah. And the one thing I'll add to that is part of that, that review we did, for some people those treatments are helping reading comprehension. But for some people, I've been trying to work on the next step. I have a very small dataset where I've added a semantic comprehension stage to my adapted photo motor treatment. I'm in the very early stages of this and I'm sure it's fine to say, but I've been having these really exciting conversations with Kelly Knollman-Porter and Sarah Wallace. They're also Tavistock Trust recipients, and they study reading from a different perspective, using text to speech, compensatory and very focused book reading. They're very comprehension focused, so we're at the very early, fun stages of where we are in our thinking. I think there might be a middle step we are missing, but we are talking about taking these impairment focused treatments, which I think have a role, and have a participation, functional part of it. That's another emerging, new collaboration, where we are coming to reading from different perspectives, and we're trying to see where we can get with that goal, back to this comprehension question, improving functional reading, maybe from impairment and compensatory approaches.   Janet: I think that's the right approach to take, and I think it's exciting, because we have to remember that everybody reads differently. Some people like reading, some people don't enjoy reading. They read what they have to, but they don't particularly enjoy it. So, if we all come to it from different perspectives, we all have different strengths that we bring, and different deficits as well, and different needs or designs, just as is so many things with aphasia. Start with the person with aphasia, asking What do you want to read? What problems are you having? Then use that as a guide to selecting an impairment-based treatment or text to speech treatment, or whatever. I think that's exactly the right approach.   Liz: The one thing the treatment we were talking about, phono motor treatment, in general, is a phonology treatment. The good thing is that my focus is asking, is it improving reading? I'm also extending it to writing. We do know at its core, it's a language treatment, so it is nice that it can be tweaked to serve the person's main interests. I think that's important, that we are trying to work on what people want to work on, but we want to make sure we're improving, if we can, not just one language modality, and we know that these abilities are supported by similar brain structures and underling cognitive processes. That's something else we've been trying to work on, being person centered and at the same time trying to maximize generalization - lots of pieces. I am finding now what's most motivating and exciting is trying to make sure that we're doing things that people with aphasia find important, and how also to keep the whole science moving forward in this way that's going to have functional, important outcomes. That people with aphasia are going to be able to do what they want to do to the best that they can.   Janet: Absolutely! But then there's the scientific challenge of how do you collect the data? How to best observe specific outcome data on performance measures, but also collect the person-centered data. How do you collect data that really can speak to whether you're having a success and whether this might be generalizable or transferable to another person?   Liz: I think it's important that we need both. I always say, and some of my collaborators may not like it, but if in the person reported outcome, a person with aphasia is telling us that they feel better and that they are communicating better in life, and those measures should not be optional, those measures to me, a critically important part of seeing this treatment successful. There are different ways to do that and different ways to capture their perspective. For example, if trained reading words moved this much and if the patient reported outcome change is greater, then I find that to be a success. If the reverse happens, I find treatment not successful. If my probes showed gain but the person with aphasia does not see it or feel it, then I don't find treatment to be a success. So, I think it's really important that persons with aphasia tell us different things, and we need to have many assessments in both of those categories. I think, when possible.   Janet: You're absolutely right. When you think about many of the treatments that we're doing, they are not necessarily easy, and they take time, and you have to stay the course. I think you know, I've been interested for a number of years in motivation and engagement, and what keeps people motivated and doing what they're doing. If you've got a treatment that you can see over time, small changes in your specific reading outcomes, but not so much of a change in the person centered outcomes, or person reported outcomes, how do you know the person is still really engaged and motivated and willing to slog through your treatment in order to get to the place that you hope they will? I think you're correct when you're assessing the importance of the person reported outcome.   Liz: Yeah, that's good. And then that's a whole other like measure in itself, right? The key of motivation we've talked about in some of the trials. The one person who didn't do very well, and just in our conversation, sometimes it for different reasons. That wasn't motivating for that person. There's that's a whole very important piece that a lot of us have a lot of room to improve in how we capture that and support that.   Janet: Which is a challenge when we're trying to devise treatments for, say, reading or anything that can be applicable to a wide range of persons with aphasia. Kudos to you for meeting that challenge as best you can.   Liz: We're working on it. But I do really think that it's changing. Sometimes I feel like there are impairment-based people and life participation people, and I don't think it needs to be that way. It's fine if we only study one area. We can't all study everything, but I think as a whole they complement each other very well. And so I'm just excited to see that it seems like things are moving in a really exciting way, where people who study aphasia in various different ways now seem to have the main outcome, asking is this going to help people with aphasia feel better, communicate better, and look forward to something different in life? I think we're all seeing that that's what we're supposed to be doing, and how we do it is going to look really different, and that's great. I think we're moving in the right direction.   Janet: Very well said. I think, and you obviously do as well, that literacy and reading skills are crucially important to individuals with aphasia in so many ways, such as life skills reading or pleasure reading. Acknowledging that we all have different skill levels and preferences, what are some ideas that you might have identified that speech-language pathologists can use to support the literacy and reading desires and activities for a person with aphasia?   Liz: Great question. I think my answer is very similar to the question about what can SLPs do to help support friendship? I think being person centered. You said earlier, right, we all have different interests. Somebody might say it's not one of my goals and I really don't want to spend a lot of time on this. But just having those conversations and person-centered measures and using supported conversation we can easily gather important information. There are some really good patient-reported outcome measures that ask about reading, so maybe use some of those existing tools. The Comprehensive Aphasia Disability Questionnaire has a nice scale that talks about different aspects of reading as well as other aspects of language. But at the minimum, I think finding a way, even just to draw your own scale and then trying to find out in their life, what are different activities where they want to or need to engage, right? Texting, email, restaurant. I mean, we think about it, we're reading all the time throughout life. So, I think finding the reading need is a general interest and then getting really specific is one way to do it. Another thing could be, as I mentioned before, our brain relies on similar structures and language networks when we are engaging in spoken language and written language. So oftentimes improving our reading and writing improves our spoken abilities and vice versa. So even if it's not the main goal in treatment, for example if the main outcome might be word retrieval, I really believe multimodal learning is important. If, after you've gone through what you want to do say writing it, having them repeat it, maybe copy it, even though that's not the main goal, and it's not slowing the therapy, if it's working for you and your client, then I really think, at the minimum, using written language to support spoken language has a good role. I also think the opposite can be true using spoken language to support written language. So I do think that it's important that we know we are addressing all of language, and that that language skills really do usually move up and down together in aphasia.   Janet: Well said, again. Liz, thank you so very much for joining me today in this fascinating look into friendship, literacy, reading and aphasia. And again, hearty congratulations to you on being named Tavistock, Distinguished Scholar. On behalf of Aphasia Access, I wish you well in your research and clinical efforts, and thank you for taking the time to speak with me today. At this point, I'd also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcast, including this fascinating discussion with Liz Madden.   Liz: Thanks so much, Janet, I feel like you could just chat with you all day. Thank you again for giving me a chance to highlight some of my work. Also I want to thank everyone with aphasia who has participated in my projects, all my students and collaborators, Aphasia Access and the Tavistock Trust for Aphasia. Thanks again.   Janet: For references and resources mentioned in today's podcast, please see our Show Notes. They are available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I'm Janet Patterson, thanking you again for your ongoing support of Aphasia Access. References Antonucci, T. C., & Akiyama, H. (1987). Social networks in adult life and a preliminary examination of the convoy model. Journal of Gerontology, 42(5), 519–527. https://doi.org/10.1093/geronj/42.5.519 Archer, B.A., Azios, J.H., Douglas, N.F., Strong, K.A., Worrall, L.D. & Simmons-Mackie, N.F. (2024). “I Could Not Talk . . . She Did Everything . . . She's Now My Sister”: People with Aphasia's Perspectives on Friends Who Stuck Around. American Journal of Speech-Language Pathology, 33, 349–368. https://doi.org/10.1044/2023_AJSLP-23-00205 Azios, J.H., Strong, K.A., Archer, B, Douglas, N.F., Simmons-Mackie, N. & Worrall, L. (2021). Friendship matters: A research agenda for aphasia. Aphasiology, 36(3),317-336. https://10.1080/02687038.2021.1873908   Madden, E.B., Bislick, L., Wallace, S.E., Therrien, M.C.S. & Goff-Albritton, R. (2023). Aphasia and friendship: Stroke survivors' self-reported changes over time. Journal of Communication Disorders, 103, 106330. https://doi.org/10.1016/j.jcomdis.2023.106330 Madden, E., Conway, T., Henry, M., Spencer, K., Yorkston, K., & Kendall, D. (2018). The relationship between non-orthographic language abilities and reading performance in chronic aphasia: An exploration of the primary systems hypothesis. Journal of Speech Language Hearing Research, 61, 3038-3054. https://doi.org/10.1044/2018_JSLHR-L-18-0058 Madden, E. B., Torrence, J., & Kendall, D. (2020). Cross-modal generalization of anomia treatment to reading in aphasia. Aphasiology, 35, 875-899. https://doi.org/10.1080/02687038.2020.1734529   Purdy, M., Coppens, P., Madden, E. B., Freed, D., Mozeiko, J., Patterson, J., & Wallace, S. (2018). Reading comprehension treatment in aphasia: A systematic review. Aphasiology, 33(6), 629–651. https://doi.org/10.1080/02687038.2018.1482405 Strong, K.A., Douglas, N.F., Johnson, R., Silverman, M., Azios, J.H. & Archer, B. (2023). Stakeholder-engaged research: What our friendship in aphasia team learned about processes and pitfalls. Topics in Language Disorders, 43(1), 43-56. https://10.1097/TLD.0000000000000302   Therrien, M., Madden, E. B., Bislick, L., & Wallace, S. (2021). Aphasia and Friendship: The Role and Perspectives of Speech-Language Pathologists. American Journal of Speech-Language Pathology, 30(5), 2228-2240.   Resources   Stroke Social Network Scale reference and materials: https://cityaccess.org/tests/ssns/      Aphasia Access Conversations Episode #119 - Finding the person in front of aphasia: A conversation with Lauren Bislick

Welcome to this Aphasia Access Aphasia Conversations Podcast, a series of conversations about aphasia, the LPAA model, and aphasia programs that follow this model. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Conversations Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am the host for our episode that will feature Lauren Bislick, in which you will hear about friendship, yoga, mental imagery and aphasia. These Show Notes accompany the conversation with Lauren but are not a verbatim transcript.   In today's episode you will hear about: the value of friendship in our lives and Mission SPEAK, ideas for creating an accessible yoga program for person with aphasia, and the value of mental imagery.  Dr. Janet Patterson: Welcome to this edition of Aphasia Access Conversations, a series of conversations about the LPAA model and aphasia programs that follow this model. My name is Janet Patterson, and I'm a research speech language pathologist at the VA Northern California Healthcare System in Martinez, California. Today I am delighted to be speaking with Dr. Lauren Bislick, a newly minted Associate Professor at the University of Central Florida, in the School of Communication Sciences and Disorders. Lauren is also the director of the UCF Aphasia House, and the director of the Aphasia and Related Conditions Research Lab. Across her work efforts, Lauren investigates the diagnosis and treatment of acquired apraxia of speech and aphasia, the value of mindful body practices such as yoga, friendship development, and interprofessional education and practice.    In 2023, Lauren was named a Distinguished Scholar USA by the Tavistock Trust for Aphasia UK. The Tavistock Trust aims to help improve the quality of life for those with aphasia, their families and care partners by addressing research capacity related to quality-of-life issues in aphasia. Congratulations on receiving this honor, Lauren. Aphasia Access collaborates with the Tavistock Trust for Aphasia in selecting the awardees and is pleased to have the opportunity to discuss their work and the influence of the Tavistock award.    Welcome Lauren, to Aphasia Access Conversations.   Dr. Lauren Bislick: Thank you, Janet, and thank you Aphasia Access for having me. Also thank you to the Tavistock Trust for the review team for nominating me and for selecting me. I'm truly very honored to be a recipient of this award.   Janet: It's a well-deserved award. Lauren, as we said, you were named a Tavistock Trust, Distinguished Scholar USA for 2023. You join a talented and dedicated group of individuals in this award. How does receiving the Tavistock award influence your clinical and research efforts in aphasia?    Lauren: First, I'll say again, I was truly honored to receive this award and was definitely surprised. The nomination announcement occurred at the Clinical Aphasiology Conference, and they didn't give us a heads up that the announcement was coming through, so I was very surprised. I think in terms of how this has influenced my clinical and research efforts as an academic, and as a clinician. I think a lot of people can relate to that feeling of imposter syndrome, and so receiving this award has helped me push that feeling to the side a little bit in some aspects of my work and of what I do. It's also allowed me to feel very proud about what I've been able to do. but more so through my collaborations and my students and the community that we have at UCF. It's allowed me to grow connection. Since receiving this award, people have reached out to me to talk about collaboration or wanting my help in terms of more of a consultant role. It's allowed myself and my lab to reach a larger group of people and has definitely supported that emphasis on quality-of-life work, which is not necessarily the training that I focused on when I was in my doctoral program. That's been something that I've come into in my time as an assistant faculty member or a junior researcher. It feels very good to be acknowledged for that and for these lines of work being supported.   Janet: And well deserved, for certain. Lauren, I would like to begin by asking you about your recent work investigating the role of friendship for persons with aphasia. I believe in the power of friendship and community during joyful times, and also during sad times in one's life. One of the unfortunate consequences of aphasia can be the loss or diminishing of friendships, or the communication skills important to developing and sustaining friendship and community. How did you become interested in this aspect of aphasia? And what conclusions have you drawn from your research?   Lauren: Thank you for this question. One of the things that I talk about frequently in both my aphasia course and the motor speech disorders for our graduate students, is how individuals with acquired communication disorders, whether it be linguistic, or motor based, is that their social circles get smaller, and we know that's a problem in life. Friendship is an essential component of quality of life, and as you said, whether celebrating the good things or you're going through a hard time you need those friends. This is an important area that I believe gets overlooked although now we have a couple of different groups looking at friendship and aphasia, which is wonderful. I actually have to thank Dr. Elizabeth Brookshire Madden for pulling me into this work. She is at Florida State University, and I like to call us aphasia sisters. We went through the same doctoral program, and she was one year behind me. We became very close during that time, both as friends, but also in the work that we do. [Aphasia Access note: Elizabeth Madden was selected as a Tavistock Distinguished Scholar USA in 2024.]   One of the other faculty members at Florida State University, Michelle Therrien, does work on friendship, but in the pediatric world. This grew out of conversations between Liz and Michelle, where they started talking about how we can look at friendship and aphasia. Clearly, we all believe it's an issue, but it hasn't been well investigated. That was shortly before the team Project Bridge Conference, which is really what helped initiate this kind of area of research for our group. Liz and I met at the 2018 Project Bridge conference and started facilitating a friendship group; she took the lead in this area. I got pulled to the yoga group, which we'll talk about later. Liz talked with a number of care partners of individuals with aphasia, and started discussing their social groups, and then friendship. Leaving that conference, she had some really great ideas about where to go next and what was needed in the area of friendship. From there grew her team of myself, Michelle Therrien, Sarah Wallace, at the University of Pittsburgh and Rachel Albritton, who's also at FSU.    In our first study, we did a survey with SLPs trying to ask if SLPs see friendship as being an issue? You know, is this us projecting, or is this something that clinical speech-language pathologists are seeing as an issue? If so, are we addressing it in the field? What that initial study showed us was that, yes, SLPs report that their clients are experiencing loss or difficulty with friendships. They also reported that there are barriers, there aren't assessments that ask about friendships, and there aren't interventions. So, while they see this as an important thing, and something that SLPs believe that this was within our scope of practice, they need a little more guidance as to how to support people with aphasia in terms of maintaining friendships, and then also developing friendships.    Following that study, we then spoke to people with aphasia and also spoke to caregivers of people with aphasia to get their perspectives and their lived experiences. What happens to friendship, immediately after a stroke? In that acute phase? What happens to friendship during that chronic phase? And then where are they now? What we found through these conversations is that many individuals reported that their friendships had changed after they acquired aphasia, both in the acute phase and the chronic stages. The same could be said for caregivers as they are navigating this world as caregivers. They are experiencing changes in their friendships. With aphasia being a chronic condition, this is something that people are living with for the rest of their lives. Friends can kind of be there in the beginning, and that acute care phase where they send messages or come by to say hello and show their support. As they realize that the communication impairment isn't going away, they don't know what to do and may get a little uncomfortable, feeling bad that they don't understand their friend with aphasia, or they don't know how to support them in their communication, or this problem isn't disappearing. This is me projecting, but I believe that's what's happening and what we're seeing is that people with aphasia, and their caregivers are reporting this loss. They also are reporting gaining new friends as they become ingrained in social groups. They meet other people with aphasia or care partners of other individuals with aphasia and develop friendships that way. They are also reporting smaller social groups, smaller groups of friends from their pre-aphasia life, dwindling for a lot of people. We think from our research what we're finding is that we really need interventions that target friendship maintenance and development. Some of that may be as simple as providing education, inviting friends into the therapy room. We do this with care partners, we can also offer this to friends to see how we are interacting with your loved one with aphasia. We can provide key tools to support communication; I really think a big piece of it is education. We've got to find the best way to navigate this in the clinical world. I think that's the next step not only for our group, but for the other groups that are looking at Friendship.    Janet: Lauren, you make some very good points in those comments. I wonder, do you have some brief thoughts or very specific ideas about how as clinicians, we can act in ways to optimize the friendship activities of our clients, or their care partners, recognizing though, that everyone has different styles and needs for friendship? It's like you say, we should not be projecting our desires and our styles and our needs onto our patients, but rather listen to them and figure out what their needs and desires are?   Lauren: Number one, right there, is listening to our clients, listening to their loved ones, what do they need? As I mentioned before, I think education is a really big piece of this. That may mean just having some materials as a speech-language pathologist that you can send home with family members that they can give to friends, right, so not just materials for that care partner, or the person with aphasia, but materials for friends. Here's something that will educate you a little bit on what aphasia is, there are some ways that you can successfully communicate with your friend with aphasia, here's what to expect. I think some of it is people just don't understand. They don't live in our world clinically, working with people with aphasia, working with people with communication disorders. For some, it's that they've never been exposed to, and so there's a discomfort with the unknown. I think education is huge. Also inviting friends. If you're going to have a counseling session with a care partner, and a person with aphasia, and their loved one, would they like friends to be at that table? Ask them. They may not, they may want it just for them and to be quiet and personal, but they may have some really close friends that they know they're going to lean on and want to be there. Opening the opportunity to invite other individuals and also inviting friends to support groups. Bringing friends to support groups, I think, would also be a space where friends then can observe interactions among people with aphasia, as well as their loved ones, and can have an opportunity to interact with other people with aphasia. So those are a few things that I think we can do right now. There are through many of the different resources like ARC [Aphasia Recovery Connection], for example, there are opportunities for education, communication partner training, and those are things that we can also plug friends into   Janet: Those are some very good ideas, Lauren, very good ideas. You have also worked to address the isolation felt by people with aphasia, and severe acquired communication impairment through your lab's Mission SPEAK program. Can you tell us more about this program, please?   Lauren: Absolutely. Mission SPEAK stands for Mission to Promote Socialization, Participation, Engagement, Advocacy and Kindness, for people with severe acquired communication disorders. This grew out of a lack of participation among some of our community members who had more severe communication impairments. They felt that they were just unable to be successful in a group setting, and tried some of the aphasia support groups, but didn't feel like they were being heard, or that they had equal opportunity, or were just frustrated by it. It didn't feel right for them. And so, I started thinking about, well, how can we provide an opportunity for individuals who feel this way, or maybe they're just more introverted which could be another piece to why they don't want that large group. How can we provide opportunities where they're still getting to practice communication in a safe space, develop friendships, and just be able to interact to combat those feelings of isolation that people with aphasia and other acquired communication disorders report. Mission SPEAK is a program where the students in my lab, both undergraduate and graduate students, some are CSD, some pre-med, some in their med programs, where they have the opportunity to meet with an individual with aphasia or another acquired communication disorder on a weekly basis to have a conversation. It's all via Zoom. These meetings can take any shape that the person with aphasia or the communication impairment and the student want to go with it. We have some individuals that meet to actually practice what they're learning in therapy and so the clinician has connected with my students to say ‘Hey, can you go over this homework with them or allow them opportunities to practice' and sometimes the clinician will hop on to Zoom as well. We also have opportunities such as one of my students and one of our friends with aphasia are reading a book together and so they do shared reading. In another pair we have a young man who really just needs interaction, so he meets with two different students, and they just have conversations over shared interests. Sometimes his mom is there to help support communication. We see as time goes on that as the individuals are getting more comfortable with each other, and the students are getting more comfortable, there are emerging areas where there are overlapping interests, or maybe the student is learning from the person with aphasia say, about sports, for example. We have one group where our friend with aphasia is a huge sports fanatic. He was meeting with two young women in our undergraduate program who knew very little about some of these sports and so he's taught them. It's really fun. Again, they meet at least once a week. We have one individual that at one point was meeting with three separate students three times a week. The friendships that form from these smaller groups are something special. For some of these folks it's intergenerational, for others they are peers. What you see is that the students don't want to give up this opportunity. I have some students who have been meeting with their friend with aphasia for over two years now. They've gone from their undergraduate programs through their graduate programs, and they've just developed a friendship and don't want to let go of it, which I think is phenomenal. This is something that I would like to see open up as chapters across different universities. Students want these interactions so badly and there are so many people with acquired communication disorders that need an outlet, and that would benefit from this safe space to work on their skills to just have fun. It really can be whatever they want it to be.   Janet: What a great idea. You've got my brain spinning. And I've been making notes about some clients I've been thinking about who would benefit from exactly what you're saying, just the opportunity to have an interaction and conversation. Wonderful.    Lauren, another avenue that you've been interested in is the practice of mindfulness, especially yoga practice. How do you see yoga practice supporting the LPAA philosophy of living well, with aphasia?   Lauren: Love this question. I have to backpedal just a little bit to answer it to say, I was never a yogi until I started my doctoral program. If you know me, I'm 5'11”. I'm tall and I grew up playing all the tall-person sports and pretty much was of the mindset that if you're not huffing and puffing and soaked in sweat, then it wasn't exercise or it wasn't beneficial. Well, I was wrong. In my doctoral program, I was dealing with imposter syndrome. I'm also a first-generation college student. Being at that level, and with all the different hurdles that a doctoral program offers, I was really feeling that imposter syndrome and anxiety that surrounds it. Somebody suggested starting yoga, and it's what got me out of bed in the morning, and really grounded me to face my day and feel as confident as I could in my skin during that time. After doing it for a few years, I just had this aha moment of, wow, I would love to bring this to the aphasia community. It's helped me with my anxieties and my areas of self-doubt and has just allowed me to also be present. I can only imagine for some folks with aphasia the anxiety that they may have surrounding communication, or just feeling okay with where they are in this part of their journey and that acceptance piece. Then I pushed it off. I said, well, I can't do that now I have to wait until I get tenure, I've got to focus on this very systematic treatment development program. I can't do more things.    Then in 2019 when I was an assistant professor, just my first year at UCF, I went to Project Bridge again thank you, Jackie Hinkley. While I was there, there was a small group that consisted of Dr. Amy Dietz and her friend with aphasia, Terry, who were at a table, and they were promoting yoga for aphasia. I was walking around, and I saw that table and I thought it was amazing. I went over there to have a conversation with them. Amy Dietz had just finished a small pilot project looking at methodology of how we make yoga accessible. And so I talked with Amy and I talked with her friend with aphasia, Terry, about their experience, and then more people started coming to that table; Susan Duncan, who is aphasiologist and a speech-language pathologist and a yoga practitioner, and then also a person with aphasia, Chase Rushlow and his mom, Deanna Rushlow. All the whole rest of that conference, we hung together, and started planning out the trajectory of how to bring accessible yoga to people with aphasia and to the aphasia community. Chase had experienced yoga, post stroke, and as a person living with aphasia with his mom, they shared their story about how it brought them together, and how it grounded him, how he found Zen. It was so fruitful being able to have these conversations with people with aphasia, and also their care partners, and them telling us what yoga has done for them. Not only did we all have our own experiences with yoga from myself, Amy and Susan, but then we also were getting this feedback from the rights holders, right from our patient stakeholders. And so this group moved forward.    Sorry, I had to backpedal there a little bit. Since that time, I'm so proud of what we have done as a team and what has unfolded. I was very fortunate to meet a yoga therapist named Karen Cornelius here in the Orlando area and together, we've been able to build an accessible adapted virtual yoga program for people with aphasia. It started as kind of this feasibility study with our own aphasia community group here in Orlando, getting feedback from them, figuring out how to make the language accessible, what visuals are helpful? What do people with aphasia want from a yoga practice, were there things that they liked, or things that they didn't like. We've had this really long but very informative process of delivering yoga from a yoga therapy perspective, caring experience, and then figuring out what to spend more time on and how to present things verbally and visually. Now I feel like we have this ongoing, strong, adapted yoga community that we're able to offer. We offer it every Friday at 11am. And we have participants from all over the US. We still have a strong group from Florida, from the Orlando area, but we've got people that participate from California, we've got folks from in the middle of the state, we've got people from Kentucky, we've got people from Pittsburgh, we have people from up north. And we also have a participant from Bermuda. It's amazing to see all of these individuals who would have never met each other otherwise come together so that they can have a yoga practice. For some of these folks, they participated in yoga before their stroke, and then had a really hard time getting back into it afterwards because of the language impairment, the language barrier really. Yoga is a very language heavy practice. The modifications that we've made have been really helpful in making it accessible. But then we've also brought in others that never looked at yoga before and experienced it for the first time and have heard their report that they reap the benefits of it. What we're seeing in both our qualitative research, and also in our quantitative research is that people are reporting reduced stress after participating in at least eight weeks of yoga, better sleep quality, and increased resilience. Some have discussed better pain management, so they feel like their pain, although it's not gone away, that they are able to go about their daily life without pain taking as much in terms of resources from them as it did prior. The biggest thing to I mean that sticks out is people are talking about self-acceptance. Yoga has helped them accept where they are right now in their journey. The last thing I'll say along these lines is there is something so powerful about having individuals come together in this group and there's conversation that happens at the beginning and at the end, just like you would if you walked into a yoga studio. I think it's that they're all working on a common goal, in this hour, and very little of what's being done is focused on communication, the effort is taken away. They're really just sharing a space with each other, enjoying that space, doing something that's making them feel good. And they're not having to think about their impairment. There's something really special with this group.    This work has now been funded by Orlando Health, which is our one of our big hospitals in the area. We're working with an interprofessional team and actually bringing yoga therapy into the inpatient rehabilitation program. This has been really neat, because Karen, the yoga therapist, and I are working with an interdisciplinary team of speech-language pathologists, physical therapists, occupational therapists, and recreational therapists. We'll have a group of individuals and all of these different professionals in the same room, and we're getting feedback from the professionals about what they like, what's facilitating this program for them, and what are the barriers. At the end, they will be the ones running this program, and they are very committed to keeping it up and running. We're also of course, getting the feedback from the people with aphasia and other brain injury survivors in this group, as well as their caregivers that are coming in and participating. I think now I can say I've done a good chunk of research in my life, and this area is the most fun and the least amount of work. Everything has happened organically. There has not been a moment where it feels like this really is work, or I don't want to do this. It's all just unfolded so beautifully. I feel so fortunate to be a part of this, I'm so thankful that Project Bridge pushed me into this, in a sense, when I thought I had to put it off for years and years to come. It's been a lot of fun. For our listeners, we have an ongoing yoga program on Friday mornings at 11 am EST, that is run by a yoga therapist who is amazing, and well versed in aphasia. I welcome people to join us.   Janet: I am moved by your story, Lauren, both your individual journey through your doctoral program and finding yoga to help your own self, and then taking that into the aphasia community. Several times you've used the phrase, ‘your journey through life' or ‘your journey of life'. And isn't that true? We're all on a journey, and it changes year to year, or decade to decade, if you will. It's exciting to know that you're finding a way to connect people with aphasia to a larger community that focuses on yoga, for example, rather than focusing on the impairment that they have living with their aphasia. Thank you for that. It sounds like it's a great success, and I hope it will continue to be so good for you.   Lauren: Thank you.   Janet: Lauren, another area of investigation, you're examining the benefit of motor imagery and home practice, for enhancing treatment outcomes in persons with apraxia of speech. This is a little bit different from yoga and mindfulness. But yet at the same time, it's about what people can do in their own selves, I think to improve their communications and improve their interactions with others. Will you describe this work and your current findings, please?    Lauren: Absolutely. And you really did hit the nail on the head because it does overlap a lot. It's different in that we are working on the impairment here, but the motor imagery piece grew out of what I was seeing with yoga. Many of our participants have hemiparesis, for example, or they might have apraxia of speech or more severe aphasia. When they are unable to produce a certain movement, or unable to say a certain mantra, we tell them just to visualize. If you can't move that arm that is fine, or if you can't move it to the extent that you want to that is okay, just imagine that arm moving. Just imagine or hear yourself saying this affirmation.    Based on what we were doing with the yoga I started digging a little deeper into the research on motor imagery and mental imagery, and that's where this idea arose. Surprisingly, there hasn't been a whole lot of work using motor imagery for rehabilitation of apraxia of speech. There's been a little bit of work in the area of stuttering, and motor imagery is used significantly in sports medicine, athletic training for professional sports, and musical training, and also rehabilitation of limb and gait, but really very little about speech. And so, I found a hole. My thought was maybe this motor imagery piece is a start, it's something that people can do at home without much support, and maybe it will impact their performance, either that day or in a therapy session a few days later. I wrote a grant and it was funded through the National Institutes of Health. The grant focused on looking at the impact that motor imagery has when combined with behavioral speech treatment. My thought moving forward was that I got my Ph.D. not only because I wanted to know more and wanted to create treatment programs, but I wanted to prove to insurance that healing the brain post stroke, or rehabilitation of speech and language post stroke, is not the same as healing a broken bone. It takes a lot more time. It's ongoing. In my time, I have not seen a change in insurance. In fact, I think it's gotten worse. So my thought into this is we've got to give clinicians and people with communication impairments the opportunity to work more from home. What can they do on their own to bolster the impact of those few treatment settings that they actually are getting, if they are treatment seeking individuals. The idea is, the hope is, that through motor imagery, what we're doing is priming the neural network. Patients can go home with targeted stimuli that they're working on, for example, and just imagine themselves saying it accurately, thinking about how the articulators are moving, visualizing themselves being successful. Hopefully, we're priming those networks. Then when they go into that treatment session, those networks are primed and perhaps we see a boost in performance. The hope, the long-term goal, of this is to build a home practice program that can be accessible to people in the comfort of their homes, easily and free of charge. The speech-language pathologist can also interface with the program to put stimuli into it, for example, so that it can support what they're working on in therapy. We're still in the early phases, but we just completed our first qualitative interview after somebody has completed the whole program, and they really liked it. I thought people were going to be bored with motor imagery because we're not yet allowing them to say anything. In the motor imagery piece, we really want to focus on what does imagery add, but they really enjoyed it. Our first participant, what he said was that at first he didn't like it, he thought it was weird. After we went through practice for a few weeks, he would come into the therapy session and we would do a probe and afterwards if I commented that he did really well on that today, or in the treatment session itself, or if I was seeing a lot of success with certain targets, he would say ‘the homework, the homework'. My thought was that he felt like the homework is helping. He was encouraging and felt like it was helping. We've only run a few people through, so right now, it's preliminary findings, but what I'm seeing is a benefit when they are going home and having this opportunity to practice. Even though it's not verbal practice, it's motor imagery, I'm seeing a change when they come into the session. The study itself is funded for three years, and we have the opportunity to provide free therapy for 18 individuals with co-occurring apraxia of speech and aphasia. I'm excited to see what that group data look like, but right now, and with just the conversations that we're having with the folks that are coming through, I feel very optimistic about this program. It will definitely need to grow, I don't want it to be only motor imagery forever. It's a good first step.   Janet: That is very exciting to hear. I look forward to reading the results as you have more and more individuals with apraxia of speech move through your program.   Lauren, as we draw this interview to a close, I wonder if you have some lessons learned that you would share with our listeners, as well as some Monday morning practices, that is actions that we can take on Monday morning to improve our interactions with persons with the aphasia or apraxia of speech.    Lauren: So I think first, and this is reflecting on what I do, I know many individuals out there, whether you are clinically working with the population, or you're doing research, you're in an area where you are giving. We are giving to support a community. The same thing that I tell our caregivers is to do something for you first, that will allow you to continue to give to others. What is something can you identify, something every day. When there's a little bit of something that you can do for yourself that just fuels you to be the best clinician, the best researcher, the best partner, parent, the many hats that people wear, to your community. That may look different for everyone. For some people, maybe it is meditation, for others maybe it's yoga, maybe it's running, maybe it's baking, everybody has their thing, but identify that certain something that gives you the energy and maybe the groundedness to serve your community.    One thing we've touched on, and if you're listening to this podcast, you know this, but listen to our friends with aphasia. Their perspectives give us so much more than we could ever pretend to know. I've learned so much from my friends with aphasia, even moving forward and in my research - thinking that I know what people want, talk to them, and then the realization this actually isn't an issue, this other thing is. Seek better understanding, otherwise, we're going up the wrong ladder and putting our efforts in the wrong area.    Building community through shared interests, that's what I'm trying to do a bit, and also incorporate student involvement; use your resources. With Mission SPEAK we really are trying to build community through shared interests. It's really neat to see how this unfolds. Even when you have a person with a communication impairment or a person with aphasia, who is maybe 30 years older than the student that they're meeting with, there are shared interests. And it's so neat, what they learn from each other and how this partnership grows, and this friendship grows. Then you also have peers, folks who have acquired communication impairments that are close in age with our students, and that takes on a life of its own as well. Try to match people up based on shared interests, or at least having someone that is really eager to learn. Also being open. Building community through shared interests supports what we've done with yoga. Here are folks that are finding peace and community and enjoying this activity together. It could be anything doesn't have to be yoga.   One other is interdisciplinary practices. When we're thinking about our friends with aphasia, not just thinking about the aphasia or stroke, when we're working with our more acute care friends, or those that are still on that rehabilitation trajectory. Stroke Survivors are dealing with more than aphasia, and I think sometimes we can lose sight of that. Making sure that there is an interdisciplinary team or you're offering interdisciplinary supports, asking what else do they need. I find that I've learned so much from my colleagues in physical therapy and occupational therapy. I work closely with an assistive technology professional who has just unlocked for me the world of supports that are out there that help people live well with aphasia, and also with hemiparesis. Supports such as for cooking with hemiparesis, supports for a computer adapted need, supports many things, such as positioning, seating, getting out there and playing sports, again, in an adaptive community. There are so many things that have happened, I think, over the last decade to make things more accessible for people post stroke. Educate yourself on what's out there.   Janet: Those are great ideas. Thank you so very much. And thank you, Lauren, again for taking the time to speak with me today about the Tavistock Distinguished Scholar Award, and about your work in aphasia.   Lauren: Thank you very much for having me.   Janet: You are so welcome.    I would also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcasts. For references and resources mentioned in today's show, please see our show notes. They are available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, please email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I am Janet Patterson, and thank you again for your ongoing support of Aphasia Access.   Lauren, thank you for being with me today and congratulations on being named a Tavistock Distinguished Scholar on behalf of Aphasia Access and the Tavistock Trust. I look forward to learning about your future accomplishments, and seeing how you help people with aphasia and apraxia of speech on their journey of life. References   Madden, E. B., Therrien, M., Bislick, L., Wallace, S. E., Goff-Albritton, R., Vilfort-Garces, A., Constantino, C. & Graven, L. (2023). Caregiving and friendship: Perspectives from care partners of people with aphasia. Topics in Language Disorders, 43(1), 57-75. https://doi.org/10.1097/TLD.0000000000000301    Therrien, M.C., Madden, E.B., Bislick, L. & Wallace, S.E. (2021). Aphasia and friendship: The role and perspectives of Speech-Language Pathologists. American Journal of Speech-Language Pathology, 30(5), 2228-2240. https://doi.org/10.1044/2021_AJSLP-20-00370  Resources   Aphasia Recovery Connection (ARC)        https://aphasiarecoveryconnection.org  Aphasia and Related Conditions Research Lab and Mission SPEAK https://healthprofessions.ucf.edu/communication-sciences-disorders/aphasia-and-related-conditions-research-lab/  Project Bridge     Project Bridge - Research Community in Communication Disorders

Dr. Janet Patterson: Welcome to this Aphasia Access Aphasia Conversations Podcast, a series of conversations about aphasia, the LPAA model, and aphasia programs that follow this model. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Conversations Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am the host for our episode that will feature Robin Pollens, in which you will hear about the transformative power of mentoring. These Show Notes accompany the conversation with Robin but are not a verbatim transcript.   In this episode you will hear about: 1. the presentation of the Aphasia Access, Sandra O. Glista Excellence in Mentoring award to Robin Pollens, 2. stories about mentoring from Robin's career as a speech-language pathologist, and 3. the power of a mentoring relationship to affect the relationship with people whom you mentor, from whom you receive mentoring, and with whom you share mentoring opportunities.   I am delighted to be speaking with my dear friend and longtime LPAA colleague, Robin Pollens. Robin is an ASHA certified speech language pathologist and held the positions of adjunct assistant professor in the Department of Speech, Language and Hearing Sciences at Western Michigan University, and clinical supervisor and coordinator in the Aphasia Communication Enhancement program. She also provided clinical speech-language pathology services through home health, and skilled nursing outpatient clinics.   In addition to her focus on LPAA, Robin is passionate about graduate education in speech-language pathology, palliative care, interprofessional collaboration and ethics, and has written and lectured nationally and internationally on these topics.  In 2023 Robin was awarded the Sandra O. Glista Excellence in Mentoring award from Aphasia Access. 2023 marks the inaugural award given to both Robin and Leora Cherney from the Shirley Ryan Ability Lab in Chicago. The “Sandy” is awarded by Aphasia Access and recognizes an exceptional mentor who has demonstrated unwavering commitment, unparalleled guidance, and profound impact on the professional and personal development of others working in the aphasia community. The award is named in honor of Sandy Glista, one of the founders of Aphasia Access, and is a testament to her enduring legacy, and a reminder of the transformative power of mentorship.   Welcome Robin, to this edition of Aphasia Access conversations. Ms. Robin Pollens: Janet, thank you. Thank you so much for all that intro, and it's nice to be here to talk with you today. I want to also right now, thank Aphasia Access for this honor. It was especially meaningful, towards the end of my career, to receive a mentorship award and to hope there's something that I did, or I said, or I wrote over the years that was meaningful to somebody else. I also appreciate that I'm sharing this inaugural award with a wonderful friend, Leora Cherney, and that this award is named for my close friend and collaborative partner, Sandra Glista. It's a real honor to have received it and an honor to talk with you today, Janet. Janet: The feeling is mutual about talking with you, Robin, and the honor is certainly well deserved. Robin, as I mentioned earlier, you were honored with the Sandra O. Glista Excellence in Mentoring award. This award recognizes your commitment to mentoring individuals who are part of the aphasia community, including clinicians, researchers, persons with aphasia, and their care partners, students and others. Through Sandy Glista and this award, we are reminded of the transformative power of mentoring. Robin, how do you envision the value of mentoring to individuals and to the Aphasia community?  Robin: When I received this award, it set me on the road to reminiscence. I remember being in, I think, undergrad, studying Speech and Hearing Sciences and I had not yet done any clinical work. I had the opportunity to sit and observe a grad student doing an aphasia assessment with a patient. I was sitting behind this two-way mirror and I'm watching, and my mind is going, “okay, she holds up this card; and then she writes something down; and then she has someone point.” That's what my mind was doing. Sitting behind the two-way mirror with me happened to be a visiting professor from Australia named Anne. She turned to me and said, “Look at all of that empathy”. And I went, in my mind, “Empathy, what does that have to do with it?” Then I looked through the mirror, and I saw that this grad student was talking softly and looking kindly in her eyes, and kind of patting the client when she got frustrated. I thought, “Oh, I guess that's part of this.” So I'm thankful for her (Anne) and I feel like she was my first mentor. She only said one sentence to me, but it set me on a path for what it means to be an SLP. I know that recently, like in the last five years, there's been more discussion in our field about the importance of counseling, and mental health and people with aphasia. When I would be watching a grad student doing therapy, and I'm supervising, sometimes I would see them having what I would call a counseling moment. I would make sure to let them know later, saying perhaps, “I saw when the patient was frustrated, you stopped the task and you talked with them kindly. They told you about some things that were happening, and you gave an empathic comment.” This is the way that I think about mentoring, that it's a pathway to learning or growth that comes out of your own experience, and then it goes on to others and recreates. I can go on and on with stories.         Janet: Please do tell stories, Robin, because I'm fascinated by stories. I have another question though, Robin, as you continue to tell me your stories, you've led right into the question that's on my mind. People may think of mentoring as one way, such as the experience that you had sitting behind the mirror and watching the graduate student. I see mentoring as an interactive relationship that goes multiple ways. I would love to hear more of your stories and learn about your thoughts about interactive mentorship. Does that make sense to you?  Robin: Yes, I do like that framework that you just said, Janet. And when I knew I was going to be doing this discussion with you today, of course, I went online, and I looked up mentoring to see what kind of definitions I might find. I actually found a website that I liked; it was Art of Mentoring. The definition for mentor they used was a coach, a connector, or even a challenger to help their mentees reach their full potential. The mentee will lead the relationship, inviting the mentor into their own inner dialogue to assist in working through, and I really liked that. I think that's ideally how the relationship can work. So, for example, when I was supervising the students in the ACE program, when it got to be in the middle of the semester, we would have a midterm conference and I would always say, “Tell me about your goals for yourself for the rest of this semester, how would you like me to help you?” The answers were so varied, there were some people that were very focused on the clinical learning tasks, they might say something like, I'm having trouble being in the conversation and keeping track of data, or this patient's talking so much, I don't know how to navigate the session to get everyone involved. So, there were clinical skills. Whereas there were other people that would say something like, I get so anxious before the session, I'm so nervous, it takes me a while after I met it to really be able to focus on what's happening. Those are two very different kinds of goals, and I wouldn't have known as their supervisor and mentor for that situation if I hadn't asked, and if they hadn't, let me know. So, I do think that that's important. I also think sometimes we have to seek out our own mentors; that's part of the relationship. In the beginning of my career when I was in my clinical fellowship year, I didn't have one of these strong clinical fellowship, amazing experiences that some people did, I was in a public school, and I had someone who was my supervisor. During that time, I was able to get a position in a different city, working in the hospitals, and another supervisor agreed to keep following me as the supervisor. In the hospital, I had some new patients that had had injuries, and I wasn't sure what to do. My supervisor didn't know anything about that, and I ended up going to a conference in Braintree, Massachusetts, and they were talking about this new thing called Rancho Los Amigos Scale, and I learned about it and brought it back. Sometimes throughout our careers, I think you need to actively seek out a mentor. I think I remember that Aphasia Access started a program where if you wanted to be a mentor, or you have a mentor, you can let them know; I think that's great, because there's always things that go on as your career continues that you may want to get some guidance for. Janet: What I'm hearing you say, Robin, if I can paraphrase your words, is as an individual, a good thing is for one to be open to mentoring opportunities, whether you provide them or acknowledge them, when you see a student or a colleague performing in an empathetic manner, or for your own self seeking out someone to give you assistance. The mentoring could be a large role, such as in a CFY, or a lengthy one such as a  two- or three-year relationship, or it could be a very short-term kind of mentorship. This seems to me to be what you're saying, make yourself open to learning and interacting with all sorts of people, because they can have an influence on your life, and presumably, you on theirs as well.  Robin: You summarized that great Janet. Yes, and I know that when I was working in home care quite a long time ago, I remember feeling in awe of the family members, the amount of care and the total concern, and they modified their life to care for their loved one. All of a sudden, I remember that feeling, and then fast forward two decades later, when some of my family members had illness, and I was in that role. I was drawing upon what I learned from them, which in turn, I share with our families of the people with aphasia when they're having medical situations. So hopefully, we're just all doing this for each other, throughout our lives.   Janet: What's the phrase “together, we're more powerful”, that's not it exactly, but our thinking together and the little pieces of information about mentorship or actions about mentorship, that you can recall from 15 or 20 years ago, that can help you today, are just as important as the word someone says to you this afternoon, about how you can be a better clinician, or you can give guidance to someone who is seeking it from you. Exactly. Robin, in your position at Western Michigan University, I know you have mentored numerous students, and we could probably talk for months or years about wonderful stories. Some of them, most of them, I'm sure are successful, but there probably were a few that were less successful mentorship relationships. I know that you've mentored students, what I'm interested in learning from you is have you also mentored persons with aphasia or their care partners?   Robin: Yes, and I think there are different ways to mentor somebody with aphasia. I think the piece of it I'm going to pick up on has to do with helping them express their identity, helping them to reach their level. And again, I think for me, the roots of it came actually long before I knew about Life Participation Approach to Aphasia, it wasn't really articulated yet. I remember working in home care with a woman in her 40s. She had her stroke, and she had severe aphasia. But also, all of a sudden, she could no longer work as a crossing guard. That was her work, as a crossing guard for the elementary school. She also was no longer part of her caring circle at church, she was the one that greeted people, and sent get-well cards. I think that one really struck me because I was also on the caring circle at my temple. So, we ended up in therapy focusing on reading and writing, but in the context of being able to write sympathy or get-well cards. She made a dictionary of phrases you could write and things like that. So, fast forward to being in the ACE program, which was created by myself and Sandra Glista, to be a place where goals were addressed, not only the impairment level, but also the participation level, and there's certainly countless examples there I can think of, even from way back in the beginning, because it's in the article that we wrote. There was an organization in our city called Senior Corps, and it's actually in many states still. We trained some of the volunteers to communicate with people with aphasia, and then matched them with some of our people with something they wanted to do. So, one of the people ended up being, with his conversation partner, part of a bowling league, an accessible bowling league. He was young, he'd always been in sports, and he was just sitting home so that was his identity. Another person was matched with a woman who ended up going into a first-grade art class in elementary school once a week and helping out in that art program with her conversation partner. So, these were things that we started saying, we're working on communication, but we're also in some way guiding them towards a meaningful and participatory life. So that's one way, I hope that I've been a mentor for some people with aphasia. Janet: I bet you have been a mentor for a lot of people with aphasia, because I can just visualize you thinking, and tapping into all the information from your former mentors, as you try to find ways to help an individual with aphasia, and his or her care partner or friend, take that step to being able to do whatever it is that they'd like to do, as well as they can possibly do it. I'm glad that you've had all these mentoring opportunities, and I think you're a leader in this field.   Robin: Thank you, Janet. I'd also say I think a way to be a mentor with someone with aphasia is also just having an authentic relationship with them, when their communication changes so much and people don't know how to communicate with them, and they don't know how to communicate with others. Being someone that they know they can talk with, they can relate with and laugh with, I think that in and of itself is a valuable way for interacting with somebody who has a sudden change in their communication.   Janet: You're talking about accepting someone for who they are, meeting them where they are, and together, you have a relationship that is built on trust, so that that individual would be more willing to accept from you, ideas that you suggest. They may be wacky ideas at the moment, but they certainly work in the long run. That relationship helps you both accept information from each other. I'm really curious, you've told us several stories about mentoring, and we'd love to hear many, many more. Can you think of a favorite mentoring experience you've had in some part of your career? Tell us one about one of those.   Robin: Sure, I'll name the one that I just got to go through. That was mentoring the next coordinator of the Aphasia communication Enhancement Program, which is Alison Mezcal. I had the great pleasure to stay for a semester while she was there, and we were able to do all of the coordinating. I already knew that she was a great clinician, she already knew the ACE program, she had been our student 10 years before. But the coordination piece, which is scheduling, and contacting people and planning, and all that would be new. So, we got to do it together over the semester and that was so satisfying to be able to do that. I also literally cleaned out the office and all the files and all the things so that it was ready for the next person. I know many people don't get to leave their position with the opportunity to do that, to directly mentor the next person, and it was a great pleasure. Janet, on the mentoring website, they talked about their logo, and it was two geese flying in, here's what they said, “The geese at the front of the flock improve the aerodynamics to make it easier for the followers to fly; the geese at the back honk to encourage the front geese to keep pushing forward.” And they are constantly shifting position, meaning the mentor could be leading from behind or in front, and sometimes just flying alongside. And that's what I had the opportunity to do with Allison. So that was a great pleasure.   Janet: That was a great story, Robin. I just imagine the warmth it brought to your heart as you watch this living thing that you and Sandy created many years ago, move on to the next generation. But you know, I thought about something else, too, that this is part of, I think, what might be thoughts that a mentor has to consider. So, you've invested a lot in your ACE program, quite a bit over the years, and your heart and soul are in that, and you have mentored the next generation beautifully. But now you have to step aside. The next generation may have different ideas or may take it in a slightly different way, or may do things that you never even thought about. So, part of what a mentor has to do I would imagine, is also take a deep breath and know that you've done the best job you can. But then step aside and maybe your job now is to be at the back of that flock of geese and keep honking as the program moves forward under a new leader and a new director.   Robin: Excellent. Yes, and that's very fun. I have great confidence and hope, and in a couple of weeks Alison and I are meeting for coffee, and I want to sit back and just hear all about the things that she's creating.   Janet: That's wonderful. You are indeed a wonderful mentor, Robin, you've been a great mentor to me over the years, sometimes you knew it, sometimes you didn't, as a result of the conversations we've had, and through the different projects that we've done over the years. Let me turn to a slightly different topic now. We've mentioned this a couple of times already, that for many years you worked with Sandy Glista, who is a dear friend to both of us. I believe that being honored through this award, receiving the “Sandy”, it must bring warm thoughts of your days working together. Please tell our listeners about how Sandy's friendship and collegiality have influenced you during your career.   Robin: I would say in the beginning, which would be the late 1990s, I'd say Sandy initially was a mentor, the kind of mentor that many people spoke about. In this regard, she was a connector, she connected people together. Well, she connected me to you, Janet, when you and myself and Ellen and Glenn did a project years ago on Cybersafety for people with aphasia. I was doing homecare and Sandy was working on a project with keeping elders communicating. She invited me to be involved in this project and start having some Western students intern with me. Then she invited me to do a presentation on a topic she was starting out investigating, interprofessional education, which was a new thing. We were in a college, and we had OT and social work and all the different disciplines together. They did a presentation, I brought in my team, my home care, OT PT, social work team, and we proudly presented a case. It was after that, that she was going to be going on sabbatical and she asked me if I would take her place in working with people with aphasia at Western, and that's when I began actually working at Western, in 2002. Once she came back, we started talking, and creating and planning this new version of an aphasia program and for a couple of decades, we were collaborative partners. We would add to each other, fit to each other, enjoy being together, and have a wonderful creative experience, creating these ideas that we had and seeing them happen. If we did anything such as write something or present something, it was always Sandy Glista and Robin Pollens, or Robin Pollens and Sandy Glista, whether they were even present or not, because the ideas germinated from both of us. So, if you ever have the opportunity to have a work relationship like that, it's a real gift.   Janet: Our listeners can hear, I hope, the joy in your voice, as you're talking about that relationship you had with Sandy. I know that was a very special relationship for the two of you. I can see because I'm looking at your face right now, I can see the joy in your face. Recalling the close times and close work that you and Sandy had together, I'm sure that there were some disagreements or seeing things from different perspectives, but your last statement saying that it was a wonderful working relationship and you you'd like to see everyone have that kind of close, creative relationship, is admirable. So, thank you for that insight. Robin. I'm also wondering who were some of the mentors that you and Sandy drew upon? Robin: When Sandy went on sabbatical, she visited national and international aphasia centers, and she brought back the inspiration and the sense of community that she experienced there. I was reading the World Health Organization ICF with its impairment, activity, and participation parameters, and I could envision how we could use this concept to create goals for clients, and to create participation groups where clients could work on their impairment-based goals in the context of an activity of choice. Sandy and I studied relationship centered care, which came out of the Fetzer Institute here in Kalamazoo, and we envisioned a program where family members or care partners were part of the mission of a program. Finally, in our collaboration, we created a sequential way to educate the students through the semester to be able to provide this type of SLP treatment. On the first page of the article we published in 2007, you'll see a long list of people who inspired us. Those were ACE program mentors and as ACE continued, Elizabeth Nadler, Marie Koss-Ryan and Suma Devanga added their creativity supervisors. And I would add that once Aphasia Access was formed, there were many people in Aphasia Access, who became our collaborative mentors. So, thank you to everyone.   Janet: Robin, you said something about interprofessional education and interprofessional practice, and it kind of got lost in a sentence, and I'd like to circle back to that and acknowledge that you and Sandy were visionaries in this area. Nobody else was talking about interprofessional practice, or publishing about it, or making it happen. You and Sandy were at the forefront of that.  I remember those papers that you wrote, talking about the value that each one of the rehab professionals could bring to the treatment of the patient and how they we can all reinforce the goals for the patient, the various goals. So, we all owe you a debt of thanks for that, as well.   Robin: I didn't realize that was that different. I just realized that we had the opportunity since we were at Western and there were the other professionals there, that each semester, we ended up creatively finding ways to coordinate with OT, or bring in a social worker or whatever it was. I have enjoyed watching the growth of this area of interprofessional over the last years and seeing how it's appreciated.   Janet: I think it's very important. A previous Aphasia Access Podcast, #84, was with Mary Purdy, who talked about interprofessional collaboration and related a specific story where she and a physical therapist work together to achieve the particular goal of one of their clients. Another podcast, #78, with Michelle Gravier, Albert Mendoza, and Jennifer Sherwood described an interprofessional exercise program. I'm so glad that there is a greater appreciation for interprofessional education and interprofessional practice these days. So, Robin, as we bring this conversation to a close with thoughts, or as I like to call them Monday Morning Practices, do you have ideas that you could share with our listeners, things that they might either think about in the long term, or that they might do on Monday morning when they see their clients?   Robin: Well, I almost feel teary as I'm answering this, but I'm going to work through this teariness. I'm thinking about beginnings. And I'm thinking about endings. And so, I'm thinking about making sure that in the beginning, if someone's in the hospital and has new stroke or new aphasia, whatever it is, that you are giving them hope, as described as important in the article way back by Avent, Glista and others, and I can't talk without giving a story, Janet. I'm remembering in homecare, seeing a new patient with severe aphasia, not much talking. The wife left the room while I was in the session, and I noticed a deer's head on the wall. So, I took out a piece of paper and I wrote down some written word choices, you know, baking, gardening, hunting, whatever. I said, “Tell me, I want to learn about you.” And he pointed to hunting, so we ended up having the whole conversation using supportive communication strategies and written words. At the end of the almost hour, his wife came in the room, and I said to her, “Oh, I just was hearing about the time that he and his brothers went up hunting up by Lake Michigan, and they had that rainstorm, and then the roof was leaking.” She looked at me and said, “How did he tell you that?” So, I took out the piece of paper, and I showed her our conversation, basically, with words and drawings. He had already gone through acute care, and inpatient rehab so I said to her, “Didn't anybody show you this along the way?” And she said, “No.” So that's one of the messages that I often like to express - the importance in the beginning of giving the family a method to be able to communicate because that's a way of giving hope. I can also quote another colleague of mine, Marie Koss-Ryan, who did some acute care pretty recently: same thing - she went in the room, new stroke, new severe aphasia. He was trying to read his menu to order breakfast and couldn't do it. So, she took out her iPad, pulled up a page of juices, and said,” What kind of juice do you like?” and he pointed to tomato juice. A little while later the tray came and then his wife came for the day visit and she saw the tomato juice, and she burst into tears? Marie asked what was wrong, and she said, “How did somebody know he drinks tomato juice every morning for breakfast.” She took out her iPad and showed her how you can pull up pictures. To me that's giving hope through a way to communicate. So that's the piece from the beginning. And I can't help but mention just briefly, to also remember if you are working in palliative care and end of life care, to also show up as a speech-language pathologist that can help people to be able to communicate as best as they can, even if it is at the end of their life.   Janet: Those are, are very important points, I think, to start us off to remember the power of communication. And then also to know that there are lots of messages people wish to convey towards the end of their lives. How can we help them convey those messages? Robin, this has been an amazing conversation. And I know that you and I will have many more opportunities to talk to each other. I just wish we had many more days right now to listen to the stories and share the thinking and the insights and the bits of mentorship we have received from each other and from people in our clinical worlds. So, thank you so much for speaking with me today. I am proud to call you my friend and my colleague, and again, congratulations on receiving the Sandra O. Glista Excellence in Mentoring award. I know Robin, that when I asked you to be interviewed for this podcast, you were initially reluctant, as is your style. I'm so glad that you finally agreed because the messages that I'm hearing in our chat today, they're far beyond you and me. They're about the power, the transformative power, of mentoring, no matter who you are, or who you mentor. So, I thank you, and on behalf of Aphasia Access, I want you to know how humbled I am by your long-standing commitment to mentoring. I believe that even though you are retired from Western Michigan University, you have many future mentees that will also be humbled by your long-standing commitment to aphasia, to people with aphasia, to their care partners, and to mentoring.   Robin: Thank you, Janet. Thank you very much. And I guess I will say this ended up being a gift that you gave me to be able to do this. I mean, we should all do it for each other to give them a chance to reminisce and tell their story and get perspective and life. So, thank you.   Janet: You are more than welcome, Robin. I would also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcasts. For references and resources mentioned in today's show please see our Show Notes. They are available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, please email us at info@aphasiaaccess.org. For Aphasia Access Conversations, and again thanking you Robin Pollens, I am Janet Patterson and I thank you all for your ongoing support of Aphasia Access.                           To engage in further conversation about mentoring, Robin can be reached at robinpollensslp@gmail.com     Reference List APPENDIX B: Rancho Los Amigos Scale-Revised. (2011). Continuum (Minneapolis, Minn.), 17(3 Neurorehabilitation), 646–648. https://doi.org/10.1212/01.CON.0000399079.30556.03   Avent, J., Glista, S., Wallace, S., Jackson, J., Nishioka, J., & Yip, W. (2005). Family information needs about aphasia. Aphasiology, 19(3–5), 365–375. https://doi.org/10.1080/02687030444000813   Glista, S.O. & Pollens, R.D. (2007).  Educating clinicians for meaningful, relevant, and purposeful aphasia group therapy. Topics in Language Disorders 27(4), 351-371. https://doi.org/10.1097/01.TLD.0000299889.62358.6f   Pollens R. (2003). Home care. Hom Healthcare Nurse, 21(5), 348. https://doi.org/10.1097/00004045-200305000-00015   Pollens, R.D. (2020). Facilitating client ability to communicate in palliative end-of-life care: Impact of speech–language pathologists. Topics in Language Disorders 40(3), 264-277. https://doi.org/10.1097/TLD.0000000000000220     URL The Art of Mentoring    https://artofmentoring.net/what-is-mentoring/   Aphasia Communication Enhancement Program, Western Michigan University https://wmich.edu/unifiedclinics/vanriper/aphasia   Fetzer Institute       https://fetzer.org/   Aphasia Access Podcast Conversation #84 Interprofessional Practice and Interprofessional Education: In Conversation with Mary Purdy https://aphasiaaccess.libsyn.com/interprofessional-practice-and-interprofessional-education-in-conversation-with-mary-purdy   Aphasia Access Podcast Conversation #78 A Llama, a Resistance Band, and Neil Diamond Walk Into a Bar - An Interprofessional Exercise Program for Individuals with Aphasia: A Conversation with Michelle Gravier, Albert Mendoza, and Jennifer Sherwood       https://aphasiaaccess.libsyn.com/a-llama-a-resistance-band-and-neil-diamond-walk-into-a-bar-an-interprofessional-exercise-program-for-individuals-with-aphasia-a-conversation-with-michelle-gravier-albert-mendoza-and-jennifer-sherwood

Tess Connolly LCSW talks with Janet Philbin, a Licensed Clinical Social Worker, Certified Clinical Trauma Professional, Certified Hypnotherapist and Certified Conscious Parenting Coach. Today on the podcast they discuss conscious parenting, what it is and how we can start shifting our parenting journey and building our connection with our tweens and teens.  Learn about Janet's background and how she has come to work with parents and coaching conscious parenting.    Tess and Janet discuss what conscious parenting is. Tess and Janet both emphasise that it is never too late to connect with your tween/teen. Janet states that all our children really need is to be seen, be heard and to know that they matter. Janet explains, connection not correction to us.  Tess and Janet talk about the importance of setting clear boundaries and Janet offers us an example of how to do this.  Tess and Janet talk about ‘Parental triggers' or as Janet likes to call them ‘Parental Pokes' Janet offers some ways of how we as parents can look more into conscious parenting and how we begin to make the shift in our parenting.  Janet tells us about her book ‘Show Up For Yourself' Janet is most grateful for being here having this conversation, she is grateful for open and honest conversations where we can help ourselves and learn to help others.      You can find Janet's book here

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: Lache Pas La Patate! and aphasia The importance of being mindful of gap areas in aphasia service and research 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 info@aphasiaaccess.org. 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.    

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 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 a Research Speech Language Pathologist at the VA Northern California Health Care System in Martinez, California. These Show Notes follow the conversation between Dr. Papathanasiou and myself, but are not an exact transcript.   Dr. Ilias Papathanasiou is a Professor of Speech and Language Therapy at the Department of Speech and Language Therapy, University of Patras, and a Research Associate at the Voice and Swallowing Clinic, the First ENT Clinic of the Medical School of the National Kapodistrian University of Athens Greece. He is a Fellow of the American Speech-Language-Hearing Association and has received numerous awards and recognition for his tireless efforts on behalf of aphasia awareness and rehabilitation research in the international community.  In today's episode you will hear about: considering LPAA values across social, cultural and international norms, increasing aphasia awareness through actions in the local community, mentoring speech-language pathologists who are learning about aphasia and LPAA in countries initiating aphasia rehabilitation services. Dr. Janet Patterson: As Ilias and I start this podcast, I want to give you a quick reminder that this year we are sharing episodes that highlight at least one of the gap areas in aphasia care identified in the Aphasia Access, State of Aphasia report, authored by Dr. Nina Simmons-Mackie. For more information on this report, check out Podversations episode # 62 with Dr. Liz Hoover, as she describes these 10 gap areas or go to the Aphasia Access website. This episode with Dr. Papathanasiou focuses on gap area number seven, insufficient or absent communication access for people with aphasia or other communication disorders, and gap area 10, failure to address family and caregiver needs including information, support, counseling, and communication training. I hope our conversation today sheds additional light on these gap areas.    With that introduction, I would like to extend a warm welcome to my friend and noted aphasiologist, Dr. Ilias Papathanasiou. Welcome Ilias and thank you for joining me today on Aphasia Access Podversations.   Dr. Ilias Papathanasiou: Thank you very much for this kind invitation. I'm thrilled to be with you and speak about aphasia from a rather international perspective. As you know, I have been trained in UK, I work in Greece, and have been active in many places around the world and working with developing countries, for people with aphasia.   Janet: Ilias, I'm just thrilled to have you here, and as a side note to our listeners, Ilias and I have already been talking for about an hour sharing wonderful stories about aphasia and international aphasia. Sadly, most of that won't be caught on this particular tape, but I hope a good bit of it will, because Ilias, you are a fount of information, not only about aphasia, but also about aphasia and the international community. Let me start by saying that our listeners, Ilias, are likely very familiar with the LPAA model, which as we all know, places the person with aphasia at the center of decision-making, to support them in achieving their real-life goals and reduce the adverse consequence of aphasia. How do you think social and cultural norms play a role in understanding the LPAA model?   Ilias: This is a very interesting question, which we'll have to answer. But first of all, I think we have to start with what is aphasia and how the implications of aphasia start in the community. I will say, aphasia is a language impairment, first of all, which is related from the focal lesion, which has, of course, great effects on the person with aphasia, on the quality of life, on the social network and the person, on the making friendships, on how the person functions, and the everyday environment. Now, how the person functions in the everyday environment, is related to many, many social norms. I have been working for 15 years in UK and then back to Greece. And I think that's changed my perspective. What is the social role? What the social model can offer in aphasia, because we have two different societies so they believe there are too many different societies around the world which can see aphasia as a different perspective. Taking the example from Greece, I think Greece has got a much-closed family network and supportive network comparing with other developing countries. I mean, the traditional Greece accepted that people will live with or very near their children, will have family nearby, they have their friends nearby, and they will try to - the family - to take the leadership support of the person with aphasia. This is something which might be a bit different with the USA. So in this way, the decision relies on the person and their LPAA approach of getting together and having a chat, which is not what it is for me. It is totally different, it is different in that there you have to help the participation for these people. From this perspective, I will say that life participation approach, if you take a very more wide perspective, is how we take behavior. How we take behaviors doing therapy, not only to the linguistic background because we have to start from there, you know, it's a language impairment, but also to changing behaviors of the people surrounding, to the society, and even to the government policy some time. And there's not only you know, intervening to the benefit to the person and facilitated the person which of course is correct, it's not only that. I will bring the examples. How many hospitals around the world are aphasia friendly? How many documents used by the government are aphasia friendly? And they think this access to solve this information is restricted to the people with aphasia. That is not only in USA, but I think is around the world and even you know, in different parts of the world. Some other movements of people with special skills, for example, people with visual impairment, or hearing impairment, they have been around much longer than the people with aphasia, and perhaps their network, their lobby has achieved much more changes on their policy or in the government. But for people with aphasia, this has not been the case as yet. I think this is something which can work because life participation has to be multi-directional. It is not only to change. The direction of a life participation approach, as I have to say, is a market direction, is multimodal. It has to start even from changing the attitude of the person with aphasia, changing the attitudes of the people surrounding aphasia. Telling you that you are of the society in which they move. Perhaps look at the activities which there are. But most important, changing also the government issues, the policy issues, so to make the environment to enable the person with aphasia to participate. It is very different that in Greece, perhaps, we do not have this approach as you expect in USA. Because as I said in the beginning, there is very close family network, which take that role quite importantly, and there are cases that the family will take out the person, because their close family relations, the person will continue to participate in everyday activities with the family, and perhaps helping them to be as active in the social roles as they were before.   Janet: That makes a lot of sense. You really need to think about the LPAA model with respect to the culture where a person with aphasia lives and where their families are. Let me ask you also, Ilias, in Greece, where you live and practice, how do persons with aphasia participate in speech-language treatment, and you've talked about there isn't really a practice model like LPAA, but it's more of folding the person with aphasia into the family. How do people with aphasia participate in speech-language pathology, and then move into the family?   Ilias: Speech-language pathology in Greece is very new. So, some of the public hospitals do not have a speech pathologist, yet. The first graduates from the Greek programs is about 20 years ago. It's really new and most of them have been focused on pediatrics. The rehabilitation of adults and especially with aphasia is very new in Greece. Also now we have started having some rehabilitation centers. People with aphasia are facing rehabilitation on the acute states in the hospitals, people will stay there for three or four days, having the medical checkup, and then move to a rehab unit. In the rehab unit, which will stay for two or three months, they will have more impairment-based one to one therapy on a daily basis. And then, but surrounding them at the rehabilitation center, is always the family member, which will be visit them daily, taking them to activities and whatever. And then in most of the cases the person will move back to the family. They might continue rehabilitation with an outpatient, private speech therapist, which the family supports at home. This setup will help them integrate within the family network. And usually, you know, people are still looking after, say, if they are married and live as a couple, the woman or the man will look after them, take them out to activities that simply would come around, and help, and take them to the different activities and everyday events, helping them to go out and socialize within the family network. We are still in the network that people are visiting each other, you know, the social events and the family events very often, which is quite important. The person still carries on the routine, and there is the physical disability that might restrict the person to go out, but the family will find a way to communicate and have some activities of what they want to do. And usually, I will say, that the integration after is more related to the family. Now, that can happen, I will say about 70%, 75% to 80% of the cases. Still there will be cases with no family and no support or whatever. In that case, there will be some nursing homes. They're very limited, the nursing homes. Someone would go to a nursing home if they are totally dependent on physical abilities, like they cannot walk, not take food and tube fed or whatever. The rest will be with supports in the family.    On the other hand, what has happened in the last years is that people pay privately, a carer to be with the person with aphasia, or an elderly person. Most likely the carer be an immigrant from another country and perhaps they do not speak the language. From that perspective, the family will go in and help this person. And that's how it helps. You have to look at what is a norm for an elderly person with aphasia. Not another person with aphasia, but what is known for an elderly patient in Greece. Say if someone retired, then what she likes to do usually in Greece, is to be close to the family and see the grandchildren, to be close to do some activities. Some of them they might have a summer house with they go and spend some time with the grandchildren there. So again, for a person without aphasia the activities will be surrounded the family. This continues to exit. So, if someone with aphasia has the grandchildren coming to his house and play, and he wants them, that will be a quality of life for him, to see them and play and communicate. This is very nice because this will give him a motive to do things for himself. But also, the kids will be aware of what is aphasia, and what happened, and that will increase in some ways awareness.   Janet: It sounds like there is a lot of responsibility the family members assume for integrating the person with aphasia into the daily activities and their daily roles, and the fun and the work of family life.   Ilias: This is happening in all aspects. The elderly people stay with the family, stay connected. You know, I will not think that Greek person will leave the parents away from them. It's like you know, they will help and will support them. They might not live together but there will be close family support   Janet: Ilias, you work in a university clinic. At that clinic how do you implement the ideas of client- centered practice or LPAA in your work and your work with students,   Ilias: I don't work directly with aphasia at the university clinic, I work on the voice and swallowing clinic. I teach about aphasia with my students. What I say to them is give them is examples from every day. Usually in my classes there is discussion of the psycholinguistic, cognitive neuro model. And also, there are different lectures of putting them into their functional or community participation approach with aphasia. There are no projects in Greece, like clubs with people with aphasia and community settings where they can go. And from one perspective, I'm not sure if we need that. First is from the family, from the personal view. You don't take the people who have aphasia and put them in another place with people with aphasia, to interact only among them. The point is to integrate them in the community activities and not to you know, go from the house to another room because they will meet another 10 people, unless there are community activities for them to do.  The community activities surrounding it are doing the things which you can do before. What I tried to do with my students is first to teach them to find out what an elderly person needs; how the elderly person communicates. It is very common in Greece to have the coffee shops where people go and have a coffee and play cards. I said to them, go and play cards with your grandfather to see how he communicates, to see what he feels, to see what he needs. If you learn to play cards with your grandfather and your grandparents, you will learn to communicate with a person with an aphasia, because really you have to approach the level and the needs of that person. That is my philosophy with my students - go interact with the people on different events and not be so centered to yourself, and what you think. Go and find out what they want. So we tried to create activities within the class, which we will look on these different perspectives. There is no settings like nursing homes, which they have got people with aphasia in Greece, because people are living in their own homes, about 80% - 90%. The family is there. What we mean by the life participation approach is going back to the family life, going back to the community, because that is the most important to the person's needs and he wants to be close with a family.   Janet: As you're doing that, and teaching your students and role modeling, I imagine you might find some obstacles to actually implementing client-centered care. What obstacles do speech pathologists in Greece face? How do you and your colleagues work to mitigate those obstacles and implement the care principles similar to those of LPAA, when you're working with the patients with aphasia,   Janet: First, you know, there are some physical obstacles. For example, if you live in a big city like Athens, in a block of flats, not all of them are accessible. For people to get out of the house is not always very easy. That is an issue, in general and is not like the United States, where you have homes on one level; people can park outside their houses and get in and out. Here it is totally different. It is like having access in place in New York City with steps to go up in one of these big townhouses. It is not easy for a person with aphasia. Think about it, if you live in a townhouse in New York with ten steps to climb and go in, a person with aphasia cannot do that easily; with a stroke, not with aphasia. This is a similar situation in most places in Greece. Even the new buildings have to have access for people with disabilities, but still, we have flats from the 1960s and 1970s, who do not have access. There are physical obstacles for people to come out and get involved.    Then the other big thing which you have to change is the awareness of aphasia. For people to understand that this person does not have intelligence problem, and this is just a communication problem. And that the people, you know, have the executive function, to function and to communicate. People who do not have that in mind, you have to change this way of thinking. A few years back in Greece, people were saying, ”Oh, he had a stroke, now he lost his mind.” I believe this is nothing new, what's happened in Greece, this happened in other parts of the world, the thinking that aphasia affected the intelligence of the person. We tried to change that, to say that aphasia is something which you have. You lost the ability to use your language and to communicate, but still you are the same person, nothing has changed. You still have got your thoughts, your feelings, your loved ones, this has not changed. And as I told you, there is also some natural recovery in different ways. The example, which I gave you before, when we had the chat, when I saw my person from the village where I was born in Greece, when I was living in UK, there was no service for aphasia in Greece. He never had therapy and he was someone with Broca's Aphasia and severe apraxia. His wife was taking him every day to the coffee shop, which he used to do, to see the same people and watching the people play cards, and he has found the natural way of communicating. That I think, is very important because he kept the activities. He kept the roles and that is the social model of the life of the patient. It does not mean life participation is to go to a club to meet other people with aphasia. Life participation means to return back to what you want, and what is your everyday activities, your family, and what it is important to you to do. That's what I tried to do with my students, tried to put them into this modality of thinking that you have to take into account what the person of aphasia is, and what the environment they live. It says a person should return to these roles are soon as they can.   Janet: Those are wise words very, very wise words Ilias, I think, especially the idea about going into the coffee shop. That makes perfect sense is a way of beginning to communicate and establish a pattern between the two of you for communication.   Ilias: Yeah, but this person did develop a pattern of communication with no intervention. You will say then, what would a speech-language pathologist do in this situation. And I will say, the speech-language pathologist will go there from the beginning, might work on the linguistic impairment at the same time, show his wife and facilitate all these changes in the life they knew, and perhaps, if she found a way, two months or three months down the line, to take him to the coffee shop. She should start doing that earlier, taking him out to everyday activities which he used to do before. Sometimes, you know, we have to think we are overreacting. Perhaps we have things in our mind, the therapist, which we say, “oh, you should do that, you should do that, you should do that.” The person really is not aware of what we're suggesting, you know, what I mean? We're very motivated for people to do more things and more things and get involved. But actually, the person, that is not what you want. Some simple things in life can make these changes.   Janet: Exactly.    Ilias: Give them this space to make the choices of what is meaningful to them. The thing, you have to take that into account, and that's what I say from the beginning. The behavior changes, not only the linguistic skills and on the family, but also to us. How we're able to understand as clinicians where to stop participating in the social interaction with them. Some people are lazy, some have got a different network. It's not all you know, what we want to push them to do?   Janet: You're exactly right, because you may have wonderful ideas as a speech-language pathologist, but they don't match with what the person with aphasia would like to do. You must respect their ideas and their wishes.   Ilias: It is not only respect them, because we do, I want to believe that we respect the wishes. We have to teach ourselves to take that into account when we give these wonderful ideas. It is a skill not to push the people, you know, not to push people too far. You have to give them the space, and I think that is quite important, too.   Janet: Let me take this conversation in a slightly different direction. What you've been talking about a lot is really awareness and support and understanding the culture of where a person and how a person with aphasia lives, and how their family lives. But let me take you in a slightly different direction by asking about the papers that you have published on several topics helping people understand aphasia. I'm thinking mostly about your papers on public awareness of aphasia and assessing quality of life for persons with aphasia. Will you tell us a little bit about this line of research that you've been doing, and how you see it informing clinical practice for speech-language pathologists who believe in the LPAA model and patient-centered care   Ilias: Now, you are speaking with someone who has got a very wide background in research. I have to say that my first research and my Ph.D. was about neuroplasticity and connectivity. I did that back in London at the Institute of Neurology, with TMS and connectivity in the middle 1990s, before all this idea about plasticity and connectivity came out.  It was very lovely to work with them. At that point, this was not very popular. I don't know why, but now it is. Perhaps people are not aware about all this work I have done with connectivity in neuroplasticity, back in the 1990s, even though it is published. But it's written in different way.    But coming back to Greece, I have to say, you have to start from a different perspective. Why is that? Because I come from a country who has totally different needs, comparing with UK who have more organized research. I will take that as a guidance or an advice to people who are going back to their countries of developing. There are countries who do not have, you know, the research programs you have in USA, and that are still developing countries. When I came back to Greece, I had to start from somewhere. The things which I needed were tests to evaluate aphasia, I need to see what the public knows about aphasia, and even what are some networks about aphasia, I need to start from epidemiological data. Because unless you work on an epidemiological data, you will not be able to go to the government and say the policies, how many people with aphasia exist and what changed. At the same time, Katerina Hilari in UK was doing the work on quality of life. We did a project with her here in Greece on the validation of the quality-of-life approach, which Katerina has developed, and has been used in Greece as well. With Katerina, we developed the first efficacy study in the Greek language, because we have to prove that the linguistic difference makes a difference. We took the semantic feature analysis in a different perspective, which is more approachable to the Greek. It will do the semantic analysis work, which has been published.    So really, coming back from here, you have to start from the basic and it is important for the local community in the country because you got to start. That's why I have the work which changed my direction some ways. We might speak about different approaches to aphasia in developing countries, when you go to the small countries, this is totally different. At the same time, because people have been starting my position in other countries, I have been invited to help them out in a different perspective. I have been working with Slovenia, for example, helping them to develop the test, and they are doing education about aphasia. Now I have contact with people from Middle East and they want the similar. Through my work with the International Association of Language and Communication Sciences and Disorders, IALP, as part of the Education Committee, we have a mentorship program for clinicians working with aphasia, something which perhaps you don't know. IALP and Tavistock trust, have put together a program and aphasia committee and we are mentors of clinicians in the developing countries. Right now, the IALP program has about twenty clinicians being mentored around the world. I have someone in Vietnam, which is very interesting. And the same time, from my role as the Education Committee, I have been involved in many of these places, which they asked you know, how to develop materials, how to do all this work to change the life of communication disorders. I think aphasia is part of that, because I have all that experience. I think you have to start off at that point with the research, you know, develop the tests, the materials to assess, and then go to the different aspects which we need of recovery. Taking in the national perspective, regarding tests, I will say, you do not have to translate the test, you don't translate the test, you adopt the test. And sometimes it's not possible to do that. Even some of the notes of the quality of life which you have, or the social approach, which you have in the case of the life participation approach with what we have talked before, might not be appropriate in a different country. But you have to think the principles behind that.   Janet: You talk about awareness, and it makes me think that it really is foundational to so much of what we think about with LPAA. You're talking about awareness of aphasia in government areas, in policy areas, in writing documents, in how families engage with people with aphasia, how the shopkeepers around the area engage with people with aphasia. Awareness is important and those of us who are enmeshed in aphasia, we just may take it for granted that everybody knows what aphasia is, or everybody knows how to talk with the person with aphasia, and that's just not so. You're telling me, and I believe you're right, that building awareness is so important to the foundation of building a successful aphasia culture, whether it's the rehabilitation culture, or the family culture, or the government culture,   Ilias: I want to say aphasia-friendly society, instead of culture.   Janet: That's a great way to think about it – aphasia-friendly society, larger than just the speech language-pathology community.   Ilias: Larger than that. With the Bruce Willis and all the issues these days about aphasia, it's a great opportunity to go out and speak what is aphasia. People now might know the word aphasia, but what actually is the effect on life and how we'll live with that. I don't think that people are aware of that, unless it is something they have experienced from their own household. I think we have to get involved, taking the opportunities not only to go to the TV channels or going to the media and speaking about it, using this opportunity to get involved to the changes in the society. I think that is what will be the opportunity. The media help up to one level, but speaking to the media, they will know what is aphasia but that will not change that of the society 100%. People have to be in phase with a person with aphasia, and they have to say, to interact, with a person with aphasia to understand what it is. In the smaller communities, that might be easier, because each knows each other, and that will be much easier. That is why Greece, who is a smaller community, this small village, in a small town is more acceptable, comparing where the neighborhood network and the neighborhood community is still very close, comparing with big cities, which we don't know who lives next to you. That helps people understand what's going on and helping the person with aphasia. We have to start from the local people instead of going to the media. They're here, and you go out and take the people with aphasia to breakfast. I say, going to the coffee shop, that will be another 15 people there, these people will know what happend and speak with them. These 15 people will go to a different level. This is how you spread the word of aphasia. It is not always that the media will do the best thing. That's what I think.   Janet: I think you're right; it takes many perspectives. And people working from many points of view to really build this foundation and the media, especially with the attention it's given in the last couple of weeks about Bruce Willis. The media certainly plays a point, but you're right, not the most important point or not the only point. We are the advocates, and we are the ones who need to lay the foundation for awareness,   Ilias: I think we have to go a step further. Like, yes, the media brought this case up, go to the governor, go to the policies, insist that there is a need there. It is the media in different ways. Go and speak with the politicians, the lobby. I don't think this has happened.    Janet: It happens in some places, but we can certainly do more. Which leads me actually to my next question. So in addition to being a leader in aphasia, in your country of Greece, Ilias, you also have a large international presence in the aphasia community. You've alluded to that, and that presence in the discussion today. But I want to take you a little bit further into that by asking, how do you see the LPAA model influencing aphasia services throughout the international community? I know you've already talked about it with respect to your Greek community, but what are you thinking about, or what are you speculating about with the larger international community?   Ilias: I think that we will be involved in the very international community, but we have to take into account their special social network, which every community has got, which is totally different. Perhaps the life participation approach will be different from one community to another globally, from one country to another. Each community has got different norms, so it has to be adopted to the different norms of the community. How that will happen, I think, is local people will take the history of it and try to disseminate, and they will adopt it locally. It has to be adopted locally, and how it will be applied with different societal structures, that also will be very interesting to see. As I say, working with these developing countries, I will be very interested to see how that will evolve, and how they will respect. Some of the countries think that aphasia therapy is only linguistic because they have different norms, or I don't know if there are some countries which think about intelligence. There must be. So it's a lot of education which has to happen in all these countries to do all this information.    Janet: That's a good perspective and again, brings us back to the work we need to do in terms of aphasia awareness, talking with our colleagues internationally, and connecting with people with aphasia and their families.   Ilias: It's very important because I think the world that will change as well, because the world is getting smaller. I think communication between different countries at different perspectives, now, it's much easier. Look at the different ways which this podcast works. This can have access to different people around the world, they can speak, have communication, have Zoom meeting. It's much easier to communicate and have access to different information. I think that will help to change. But on the other hand, you don't know how ready a culture is to accept this approach, because some technology is going too fast for some countries and cannot be persuaded to go faster in some modalities. I think it's much easier than it used to be 20 years ago to have access to all this information directly. I think this is a positive sign for more countries to approach to life participation approach.   Janet: Certainly, we've had some podcasts on this topic, and people are thinking about how do you connect, to do a group therapy for people with aphasia, using technology or Zoom or some other platform? Certainly, that is exciting and if it helps persons with aphasia, that's a great thing.   Ilias: Can we have a podcast with people with aphasia speaking from different countries?   Janet: I think that would be a terrific idea. We've had one podcast with some people with aphasia speaking, but they have been in the same location. We have had not podcasts, but I've been part of activities where people in different parts of the United States have been talking together on Zoom. I think that's an excellent idea, people with aphasia from different parts of the world gathering together to talk about their aphasia, I'm going to propose that topic to our team,   Ilias: I'm happy to facilitate that.   Janet: Excellent, I'll sign you up Ilias. As we bring this interview to a close, Ilias, I wonder if you have some pearls of wisdom or lessons learned about LPAA and aphasia services in Greece and around the world that you will share with our listeners.   Ilias: I will say first of all, listen to the person. Just note what the person wants. That is the most important thing. A person with aphasia, as Audrey Holland said, is able to communicate even if he has got the linguistic impairment. So as clinicians, as family, try to find the strong points of this person, and make the most of it, to make him an active member of the society. According to what he wants, she wants, do not impose things on the person, give them the opportunity. I think that is applied everywhere. With the different societal rules, people need different things. Just listen to this person, what he wants, and just use the stroke skills which they have, and facilitate to be an active member of the society. Don't ignore the linguistic impairment, change the behavior allowed at all different levels that we have discussed so far. That's what I want to give out of this perspective.   Janet: I think those very important pearls of wisdom, especially the idea of listening to the patient. It's not huge, it doesn't take a lot of effort, but it's so very, very important because it can form the foundation of the relationship that we have and the success that the person with aphasia can feel. Thank you for those, I will take them to heart and take them into our minds as well. I do appreciate Ilias, your insights and your dedication to serving people with communication disorders. Thank you very much for talking to me today.    This is Janet Patterson, and I am speaking from the VA in Northern California. Along with Aphasia Access, I would like to thank my guest, Dr. Ilias Papathanasiou, for sharing his knowledge about aphasia and his experiences in the international aphasia community. I am grateful to you, Ilias, for reflecting on LPAA and international aphasia services, and sharing your thoughts with us today.   You can find references and links in the Show Notes from today's podcast interview with Ilias Papathanasiou at Aphasia Access under the Resource tab on the homepage. On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasiaaccess.org. If you have an idea for a future podcast topic, please email us at info@aphasiaaccess.org Thank you again for your ongoing support of Aphasia Access.                 References   Papathanasiou, I. (Ed.). (2000). Acquired Neurogenic Communication Disorders: A Clinical Perspective. London: Whurr Publishers.  Papathanasiou, I. & De Bleser, R. (Eds.).  2010 (2nd ed.). The Sciences of Aphasia: From Therapy to Theory. London: Emerald Group Publishing. Papathanasiou, I., Coppens, P. & Potagas, C. (Eds.).  2022 (3rd ed.). Aphasia and Related Neurogenic Communication Disorders, Burlington MA: Jones & Bartlett Publishers.   International Association of Communication Sciences and Disorders.  https://ialpasoc.info  Tavistock Trust for Aphasia. https://aphasiatavistocktrust.org/  Ilias Papathaniou@facebook.com

During this episode, Dr. Janet Patterson, Research Speech-Language Pathologist at the VA Northern California Healthcare System, speaks with Dr. Mary Purdy about aphasia rehabilitation, Interprofessional Practice (IPP) and Interprofessional Education (IPE).    In today's episode, you will:   Learn how IPP and IPE are related, in concept and practice. Hear about the similarities and differences in IPP in inpatient settings and outpatient settings. Listen to ideas on delivering client-centered treatment in an atmosphere of IPP.   Interview Transcript: Janet Patterson: Welcome to this edition of Aphasia Access Podversations, 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 Healthcare System in Martinez, California. Today I am delighted to be speaking with my colleague and friend, Mary Purdy, about Interprofessional Education, or IPE, and Interprofessional Practice, or IPP. Dr. Purdy is Professor and Graduate Program Coordinator in the Department of Communication Disorders at Southern Connecticut State University in New Haven, Connecticut, and a speech- language pathologist at Hartford Health Care Rehabilitation Network. Mary has been involved with educating graduate students in the principles and practices of IPE for several years and is currently Chair of Southern Connecticut State University's College of Health and Human Services IPE committee. Additionally, she actively engages in Interprofessional Practice in the outpatient setting.  As Mary and I start this podcast, I want to give you a quick reminder that this year we are again sharing episodes that highlight at least one of the ten gap areas in aphasia care identified in the Aphasia Access White Paper authored by Dr. Nina Simmons-Mackie. For more information on this White Paper, check out Podversation Episode #62 with Dr. Liz Hoover as she describes these gap areas, or go to the Aphasia Access website.  This episode with Dr. Purdy focuses on gap area five, attention to life participation across the continuum of care, and gap area six, training and protocols or guidelines to aid implementation of participation-oriented intervention across the continuum of care. We focus on these areas through our discussions of IPE and IPP. Two previous Aphasia Access podcasts included conversations about IPE, Episode #7 with Darla Hagge and Episode #78 with Michelle Gravier, Albert Mendoza and Jennifer Sherwood. For so many reasons, IPE and IPP are crucial in creating and sustaining high quality aphasia rehabilitation programs. I hope our conversation today adds to the growing body of knowledge in IPP and IPE. With that introduction, I would like to welcome Dr. Mary Purdy to Aphasia Access conversations. Thank you, Mary for joining me today to discuss aphasia rehabilitation, IPP and IPE.  Mary Purdy: Well, thanks Janet. And thank you. It's really good to be here.  Janet: Let me just jump right in then Mary to say we've heard a lot about Interprofessional Education, or IPE, and Interprofessional Practice, or IPP. How do you define and think about these two related, but different concepts, both in general, and as they apply to aphasia rehabilitation?  Mary: Well, in general, when we think about IPP, the whole concept of collaboration, we know, leads to improved health care outcomes, and that's what we're all after, with our people with aphasia. In terms of the education students need, to learn how to collaborate with other professionals, and this can be quite complex. First of all, they need to understand what their own roles and responsibilities are, just related to their profession. Plus, they have to learn to work as a member of a team, and not just operate on their own, solo. In order to have students become comfortable in these roles, we have to provide them with opportunities to learn, and those opportunities, I think, really need to be both didactic and interactive.  Specifically, to aphasia rehabilitation, in addition to just general education about collaboration, students need to understand that individuals with aphasia really do have complex needs and to meet these needs, we have to focus on the patient. We hear a lot about patient-centered care, and that's really what it is that we need to be doing. So, students need to have some training in how to communicate with people with aphasia, and they need to get to the point where they can be comfortable training others to help communication. We have to help our patients identify what their goals are.  Interprofessional collaboration and practice, and patient-centered care really is all about the patient goals. They have to be really included with the whole program. Students have to be comfortable in aiding patients in identifying their goals, and they have to understand how other professionals can help meet those goals. You know, when we work with our clients, we of course, are focused on communication, but our patients are so much more than that. We have to look at them as the entire person that they are and recognize that we as speech pathologists can't take care of all their needs by ourselves. So, we have to bring in other professionals to help the clients meet their goals. The other thing is, we know that patient's needs change, as they adjust to life with aphasia, and they move throughout the continuum of care. As those needs change, the team members may also change, so students need to recognize that collaboration and interprofessional practice is always in flux. It's an ever-changing concept, in terms of practicing interprofessional collaboration. As clinicians, we need to practice what we preach, we have to remain focused on our patient, what their needs are, what their goals are. It can be difficult at times given time constraints and other constraints within the healthcare environment, but we really do need to try to make the effort.  Janet: Hearing you talk Mary, I'm envisioning a student, a graduate student, who is focused in trying to learn everything they can about the different aspects of communication disorders, not to mention everything about aphasia, and now we're asking them to learn more. That is, what an occupational therapist does or what a physical therapist does and how to organize that. Is that a daunting task for students?  Mary: I think so. As I said, they're learning what they themselves have to do, you know, what do I do as a speech-language pathologist. And so, when we start throwing everything else at them, I can imagine it's very daunting for students and it's hard to try to design educational opportunities that take into consideration where the student is in their whole educational process. I think there's a timing issue of how to be introducing all of these different concepts throughout the student's education.  Janet: Mary, as you recall from the introduction today, the White Paper authored by Dr. Simmons-Mackie identified gap areas in aphasia rehabilitation across the continuum of care, two of which I think relate to IPE and IPP. I would like to ask you about your thoughts regarding IPE and IPP and how they intersect with the LPAA model at three times: first, during graduate education as we teach and model for students who will become clinicians; second, during aphasia treatment in inpatient medical facilities; and third in the outpatient setting, including community aphasia groups. Let's begin with the educational environment. How do you teach and model IPE for your students? Can you tell us about some examples you use and how your students respond to your IPE activities?  Mary: First of all, in the educational environment when we're first really training the students, this is truly the IPE portion where we're preparing the students to learn the process of collaboration. Specific to aphasia, I usually start in my aphasia class. We have a couple of different case studies that we go through, that provide information to students about stroke, the professionals involved with stroke, then the person with aphasia. Through the case studies, I'm introducing them to the professions, and then to aphasia and how the professionals work with aphasia. Another thing that I do in class is, every semester students will interview a person with aphasia. They'll do a little language screen, and they'll interview a patient that comes up from our clinic. Recently with COVID, we've been doing this over Zoom, and it works fine. As part of that, they are instructed to ask the clients about their goals; what goals do they have both for clinic in terms of their communication, but also in general. Then later, we discuss what is needed to help the patient accomplish the specific goals, both within our own profession as well as outside. So, in class, there's a general introduction to IPE.  In the clinic, we've had some fun activities, very informative from multiple perspectives. One thing that we do is we have nursing students who are enrolled in their community health class, come into the clinic to perform a health intake with our individuals with aphasia. Now prior to that, our students have given the nursing students a little bit of background on aphasia, and we have the students view a video about it. And then when the nurses come into the clinic, they work with our students there together during the interview process. The nurses go through and ask all their questions and, I shouldn't laugh, but sometimes it's amusing to see the nursing students' reactions. They are just kind of flabbergasted in terms of, “okay, now what do I do?” For one client, the nurse was asking, the client, “Do you have a history of heart problems, cancer”, blah, blah, blah, blah, blah, and the client was responding “Yes” to everything. The nurse was saying “Oh, my gosh, you poor thing you've just been through so much”. I was in the observation room with the wife, who was saying he didn't have any of those problems. So, it was actually a very good learning experience for the nurse. Then our student jumped in and started using more pictures to try to help with understanding. We provided the supported communication prompts to help with that.  We've had therapeutic recreation come into the clinic, and we've had a few trips into the community. We've gone bowling, and that was interesting. The students learned about devices that are available to individuals who have hemiparesis. There are these stands that the person puts the ball on and just kind of pushes the ball off this rolling stand and it goes down the alley. Our students learn a lot about accessibility and what can be done to help our patients get around in the community a bit more. That's a couple of examples of what we've done in the clinic.  We also have worked with the Marriage and Family Therapy department to provide support to the spouses of the individuals with aphasia. I think that's another important aspect to make the students aware of, that aphasia doesn't affect just the person who has it. It affects everybody, and the spouses need support as well. Our students have sat in on and facilitated some of those sessions as well.  Some other opportunities our students have had are again related to assessment. We had our students go to the nursing lab, where they were doing simulations of assessments, and our students played people with aphasia. That was a lot of fun, and I tell you, it told me a lot about how much our students really understood about aphasia; it gave me some very good feedback as well. We've had a variety of different kinds of activities to educate other professionals about aphasia, to educate our students about the other professionals. So, it's been a lot of fun.  You asked about how the students responded to these activities, and an important component is the debriefing. After every activity, we always talk with the students about what they thought of the experience. They obviously they love the hands-on activities, they find those to be much more beneficial than the case studies and what have you. They've talked about how much they've learned about the patient; they're stunned often with the complexity of medical issues that the patients have, and it's sometimes led to new goals in our therapy sessions. We've had some goals where we would use aphasia friendly educational materials to inform the clients about their medications. We did roleplay scripts for community reentry, so that's been helpful for the students. It just increased their awareness overall. Their feedback was that it forces them to really look beyond just communication. And it also helped their interactions with the clients, kind of viewing them and accepting them as a real person, not just a client with a communication problem.  Janet: It sounds like such a rich experience for your students, when they're hearing it - the case studies, it's one thing to see those words on the piece of paper that says the patient has this diagnosis or has had that treatment, and then to see this person talk about, or try to talk about, whatever their concerns are, or their issues. I imagine the students must just be on one hand overwhelmed with everything, all the information that's coming to them, but very grateful for this experience, the whole interprofessional education experience,  Mary: They sometimes are overwhelmed, but I think the benefit outweighs the degree to which they're overwhelmed.  Janet: I'm sure that you can share stories of your own, thinking back to assure them that other people experience this, and you'll get better with time, and it will feel better and more natural in these kinds of conversations the longer you go in the career in the field of speech language pathology. Mary: I always tie in my personal experiences when I'm trying to explain one of these concepts. It does make it a bit more real to the students.  Janet: Well, that actually leads into my next question, Mary. You are, in addition to being the university faculty member, you are also a practicing clinician, and you use IPE and IPP in your work. How do you incorporate the ideas and the principles of IPP into your clinical activities, when you're in the inpatient medical settings, we'll talk about that setting for just a few minutes, the inpatient medical setting?  Mary: That's actually where I started my clinical career, in inpatient rehab, and it's always remained kind of dear to my heart, although it was very different back then, where patients would stay inpatient for three months. Two weeks they get now if they're lucky. In the inpatient situation it's a little bit easier to do collaboration because there usually are established team meetings. There are some requirements for accreditation related to collaboration. Though I have to say, that just having a group of individuals come together for a meeting doesn't necessarily include collaboration. I think it has to be approached very thoughtfully, in terms of what are we going to do to differentiate true interprofessional collaboration from just a multidisciplinary team? I think one of the main differences is truly staying focused on the patient and having more of a problem-based approach. We look at what are the issues with the patient and who needs to come together to address those issues. So, the collaboration is kind of built in through these regular team meetings.  In addition to that, though, I think the inpatient setting provides some unique opportunities. I've done a lot of co-treatment with PT and with OT. Just last week I was down in our makeshift apartment, it's actually a model of an apartment that has a bedroom, kitchen, everything, and I was working with OT. The OT was trying to help the individual manage with their one hand and also be conscious of the safety issues. The inpatient setting provides the opportunity for us to do some co-treatment as well. I've worked with PTs and OTs, trying to help the patient ambulate. We work on carryover of each other's techniques, and we educate each other about our own professions. Even at that level we have new OTS coming on the scene who had never worked with a person with aphasia. So, the co-treatments allow us to provide some of that education in a very naturalistic environment, which obviously is helpful to the patient. We also work together to figure out which discipline needs to address, what aspects of a problem. If a patient is having issues with problem solving, or flexibility, speech can address that, or OT can address that. So, we kind of work out who's going to do what, in a very non territorial way, which is fun.  One of my favorite projects that I did was a self-medication program. I work very closely with nursing to help educate the patient about their medications, what they're for, what the side effects are, what to do if there's a problem, and how to fill their med boxes. I took a lot of the information that the nurse was providing the client and incorporated that into my own therapy sessions in a much more aphasia friendly manner. It really is helpful in helping the individuals become a bit more independent. Anything that we can do to help increase their independence is so good for their psyche, for their motivation, and for their own self-worth. Not having to depend on a spouse to give them their meds is a big accomplishment. We also follow through on using techniques recommended by one profession in the other settings. So, I will make sure that I have patients positioned properly, when I'm working with them; I make sure that client has their communication book with them, or the OT would make sure the patient has the communication book when they're in the OT session. There's a lot of ongoing discussion about what we each need to be doing to help one another and help the patient.  Janet: That actually, it's both education and its practice, isn't it, because whatever you're learning and teaching new about aphasia in your classroom is also being shared, if you will, with your colleagues at the hospital, and they're teaching you, and you're doing it within the confines of the needs of a particular patient. So, I imagine that the interprofessional practice part, the education part of that, is just always there, is ongoing, and you don't make assumptions that the OT or PT automatically understand your goals in speech, nor do you automatically understand theirs for occupational or physical therapy. Mary: The education component really is carried on throughout, not with students, but as you said, with the other professionals. We're all always learning. I've been in this practice for more years than I care to count and I'm still learning things. That makes things fun and exciting and never boring.  Janet: When I think back, about the importance of LPAA and the importance of patient- centered care, when I think back on some of my practice 100 years ago, I wish I would have done things differently for patients. I could have been a much more effective clinician, but I wasn't thinking in that direction at that point in time. But I am now and I'm hoping that our listeners will also realize there's a lot out there that we can learn from, and we can impart to other professions as we all work to help patients. Mary: I cringe at some of the things that I did 30 years ago, but you live and learn. The end goal is always the same - we want to do what we can to help our patients. We want our patients to be able to lead fulfilling lives, how we get them there has changed, a little bit.  Janet: You've talked to us now about some of the activities you use when you educate students in IPE, and then you've talked about some of the things you do in Interprofessional Practice when you're in the inpatient setting. The third setting I would like to talk to you about is community aphasia groups and the outpatient setting. You may be the only speech-language pathologist on the staff, or you may not have access to other rehabilitation professionals in the outpatient setting like you do in the inpatient setting. How do you see IPE and IPP intersecting with the LPAA model in these clinical settings, either outpatient settings or community aphasia groups?  Mary: Personally, I don't work with community groups outside of the university and I think groups within a university are very different than groups in the community, you know, separate from an educational environment. I continue to work providing outpatient services to single individuals with aphasia, and without a doubt, thinking about collaboration requires more effort. Most of the time, the patients have already finished their OT and PT by the time they get to the Outpatient Center, at least where I am. I don't have those professionals nearby so collaborating would be difficult. But the thing is, even though they may have been dismissed from those other therapies, that doesn't mean that the patients don't still have needs, and their needs now might be very different than when they were discharged from the therapy, three months, or six months prior. I think we need to remain patient centered and always be thinking about, “What is this person doing? How fulfilled is this person? What are their goals?” The patient has been living with aphasia for a while now and so their needs have changed. They are, in my experience, branching out a whole lot more or wanting to branch out more so we have to know what their goals are for life participation, what is it they want to accomplish? Those goals may be completely unrelated to what I, as a speech-language pathologist, will be doing.  For example, one of my patients had always done knitting, she just loved to knit. She was lamenting that she wasn't able to knit for her new grandchild. I was asking her what was the main problem with it? Of course, she indicated her hand, she couldn't hold the knitting needles. I briefly talked with our OT in our clinic, and asked, “Would this be something that you think we should get another referral for? Is it something that you could really assist her with?” And the OT said, “Well, yeah, sure.” So, we did get a referral for her to get an OT eval, and the OT gave her a built-up knitting needle. I was familiar with them for pens, but I had never even thought of one on a needle. That enabled the patient to continue with her knitting. Granted, she was slower, and she might have missed a stitch or two, but she was so much happier that she was able to do that. And so, OT accomplished the goal of getting this patient back involved. I guess the moral of the story is, even if we're not directly working with the other professionals, they may be accessible, or we can get them re-involved, and so we need to keep an open mind about that, and not just think that, okay, they're done with PT, they're done with OT, because there definitely are things that can be done outside the realm of communication.  Having a good understanding of what our patients' skills are and what their challenges are, can also help us set realistic goals, help our patients set realistic goals. I remember working with a client a while ago who was living at home but needed assistance to get out of the house, to transfer into a car, and so on and so forth. I wasn't really even thinking about that, you know, the patient made it to my office, so I just kind of assumed that they could do whatever. The patient wanted to go back to going out to eat so we were working on scripts. I talked about this with the physical therapist as the patient was still receiving physical therapy. The physical therapist said to me that it's okay if she wants to work on that, but she's not going to be able to get into that restaurant, it's not accessible, physically accessible, and the patient has so much trouble getting out of her home into a car. The whole thing is very laborious and so the family doesn't really want to undertake that challenge at this point. They are willing to do it to get her to therapy, but the family isn't really ready to get her into the community yet. That just made me take a step back and think, “Well, duh! Yeah, of course!” I didn't have my goals aligned with what other professionals had for goals and what the patient had. Understanding more about our patients really can help us all, patient and professionals, align our goals, so that we can accomplish them in a more efficient manner. If a patient needs some therapy and isn't receiving it, we can always ask for referrals; they might be denied, but it doesn't mean we can't ask for them.  Janet: What you said made me think of a couple things. Something you said earlier that aphasia doesn't just affect the person with aphasia, it affects the family. So, when you're talking about setting goals, like your restaurant example, thinking about the PT goals, the OT goals, the family goals, the patient goals - maybe the patient's goal of wanting to be able to order in a restaurant could have been redirected to learn a script in preparation, maybe, for finding a restaurant script later on, but now, at this moment in time that isn't the best direction, as you said. So, it just makes me think really that aphasia is about the family, it is about more than just the person with aphasia.  Mary: Oh, absolutely. Patient-centered goals definitely are centered on what the patient wants, but I think have to be considered, along with what the family wants, and what's realistic. They're the ones that are existing together. They are the ones that are ultimately responsible for carrying out, or not carrying out, these different things. I think everybody needs to be on the same page. Janet: Something else you said also made me think - the knitting needle example. In addition to achieving a goal, or to listening to the patient, you're also modeling for the patient how to ask for something, or how to think about another referral, because a new set of skills has developed, or a new set of problems has developed, now that you're further along in the aphasia journey.  Mary: I think it's a part of our phase of therapy in general, I think increasing self- advocacy is a critical component, making them aware of what their rights are, and what they can be asking for and demanding. Then giving them the tools to do that is a major component of our therapy,  Janet: That is exactly what LPAA is, asking what it is the patient wants to do, looking around the environment, and asking how we can help the individual achieve those goals, and the family achieve the goals as well. So, your comments and ideas about IPE and IPP, I think are pretty exciting, Mary, I hear the excitement in your voice as you're talking. But I also think they're crucial to the way that we should be thinking about how to deliver rehabilitation services in the coming years and months ahead of us.  As we draw this Podversation to a close, what are the pearls of wisdom or lessons learned, that you would like to share with our listeners? And in particular, what practice suggestions might you offer to clinicians, as they try to incorporate principles of IPE and IPP into their own practices?  Mary: Well, I've certainly learned a lot. I've learned my lessons as I've moved through this journey. I do have fun with it, so it's always worth it. In terms of education, for educators and IPE, I think I would recommend starting small. Sometimes my excitement about IPE has led me to be a bit over ambitious, and that can get frustrating for me, it can get frustrating for my colleagues, and for my students. So, starting small I think, is a good place to start. We might set expectations that are not necessarily realistic for our particular environment or for a particular academic department. I think it's important to know that we can be effective with small changes, small changes in our curriculum, like incorporating the activities into the aphasia class. Another thing that has been helpful is finding a group of like-minded colleagues, because a lot of times many of these projects are carried out on our own time in the educational environment, so you have to be with others who are as excited about the project as you are to really make it work. I'd suggest getting involved with schoolwide Interprofessional Education efforts if they exist. If they don't exist, jump in and try to create them so that they can exist.  For clinicians, I think we have to practice what we preach - more follow through on the different principles that we're instilling in our students. I think as clinicians we have to stay patient-centered and think beyond just communication. Similar to what I mentioned for educators, start small. A meaningful change in the life of a person with aphasia doesn't necessarily require great amounts of time and effort. If we just think small, think of individual goals, little changes can have a big impact. Then finally, I would say, get to know your patient and be their advocate.  Janet: Those are good lessons for all of us and not always easy to do, but certainly worth the doing, I think.  This is Janet Patterson, and I'm speaking from the VA in Northern California, and along with Aphasia Access, I would like to thank my guest, Mary Purdy, for sharing her knowledge and experiences with us, as she continues her exciting and important work in IPE and IPP.  You can find references and links in the Show Notes from today's podcast interview with Mary Purdy at Aphasia Access under the resource tab on the homepage. On behalf of Aphasia Access, we thank you for listening to this episode of The Aphasia Access Conversations Podcast. For more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasiaaccess.org. If you have an idea for a future podcast topic, please email us at info@aphasiaaccess.org. Thank you again for your ongoing support of Aphasia Access.  References  purdym1@southernct.edu  Purdy, M. H., Hindenlang, J.& Warner, H. L. (2017). "Interprofessional Education: Take the leap." Presentation to the AMERICAN speech-Language-Hearing Association, November 2017.  Gurevich, N., Osmelak, D.R. & Farris, C. (2020). Interprofessional education between speech pathology and nursing programs: A collaborative e-platform curriculum approach. Journal of Interprofessional Care, 34(4), 572-575. https://doi.org/10.1080/13561820.2019.1657815 

During this episode, Janet Patterson, Research Speech-Language Pathologist at the VA Northern California Healthcare System, speaks with Dr. Linda Worrall. Linda is Emeritus Professor at the University of Queensland, a fellow of Speech Pathology Australia, and founder of the Australian Aphasia Association. They will be discussing IARC; a bit of history, the influence it has had on aphasia research and practice, and what to look forward to in 2022.   In today's episode you will:   Learn some history and exciting information about the 2022 International Aphasia Rehabilitation Conference  Find out the value of international collaboration to people with aphasia and to the aphasia research and clinical community Hear about tiny habits, change, and a challenge to ask ourselves, “If I had aphasia, I would want…”.     Janet Patterson: Welcome to this edition of Aphasia Access podcast, 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 Healthcare System in Martinez, California. Today I am delighted to be speaking with my esteemed colleague and friend, Dr. Linda Worrall. Dr. Worrall is an individual who, to most of us associated with Aphasia Access, needs little introduction. She is Emeritus Professor in the School of Health and Rehabilitation Sciences at the University of Queensland in Australia. She is a fellow of Speech Pathology Australia, and founder of the Australian Aphasia Association. This is only a small part of the tireless work she does to serve people with aphasia, their family members and care partners, and the clinicians who interact with them on their aphasia journey.   Today, my conversation with Linda focuses on her experiences with the International Aphasia Rehabilitation Conference, or IARC. As Linda and I start this podcast, I want to give you a quick reminder that this year we are sharing episodes that highlight at least one of the gap areas in aphasia care identified in the Aphasia Access White Paper, authored by Dr. Nina Simmons-Mackie. For more information on this White Paper, check out Podversations Episode # 62 with Dr. Liz Hoover, as she describes these ten gap areas, or go to the Aphasia Access website.    Today's episode with Dr. Worrall crosses all the gap areas as we talk about the upcoming International Aphasia Rehabilitation Conference. Aphasia Access is honored to host the 2022 International Aphasia Rehabilitation Conference, which will be held in June in Philadelphia, Pennsylvania. This event is based on a tradition of excellence and brings together 200 to 300 delegates, researchers and clinical specialists in speech- language pathology, linguistics, neuropsychology and rehabilitation medicine, all of whom are dedicated to aphasia rehabilitation.    Before moving on to our interview today, I want to take a moment to acknowledge our colleagues Tammy Howe, Eavan Sinden and Brent Paige, who chaired IARC 2020 in Vancouver. They collaborated to create a wonderful conference that unfortunately had to be cancelled in the middle of the pandemic. We appreciate their efforts and are glad we have been able to return to an in-person conference in 2022. I'm excited for the conference this year and in this discussion with Dr. Worrall, hope to spread that excitement to those of you who are listening.   I am honored to have Dr. Worrall as my guest today. We will be talking about IARC, a bit of history, the influence it has had on aphasia research and practice, and what to look forward to in 2022. Welcome, Linda. And thank you for joining me today.   Lina Worrall: Ah, thank you, Janet. I'm absolutely delighted to be talking about IARC.   Janet: Let's start our conversation today, Linda, with a bit of history about IARC. I know it's been around for quite a while, but I'm not sure exactly how long. How did the idea for IARC come into being, and when or where was the first meeting? Tell us about the sense of spirit and collegiality at those early meetings?   Linda: Sure. I joined the IARC conference in its second year, but I'm led to believe by Ilias Papathanasiou, who has recorded the history of this conference, that there were three people who said that we needed an international conference that focused on aphasia rehabilitation. And those three people were Maria Pachalska from Poland, Renata Whurr from London, and your very own Nancy Helm-Estabrooks. And so the first of these conferences happened in 1984, in Krakow, in Poland. I joined the next conference in Gothenburg in 1986, as a PhD student, and since then it's sort of gone mostly through Europe, but also to other parts of the world. So, Florence, Edinburgh, Zurich, Aalborg. And then I missed a few of those because I was in my childbearing years. But then I rejoined it in 1996, when it came to the US in Boston, and Carl Coelho and Robert Wertz convened the conference. Then it went to the very exciting one of Johannesburg in South Africa, Claire Penn organized that one; then Rotterdam, and then I hosted one in Brisbane in 2002. Then we went to a Greek island of Milos. We've also been then back to Sheffield, Slovenia, Montreal, came back to Australia and Melbourne, The Hague, London, Portugal and then the cancelled Vancouver one. But now it's back to the US and to Philly in June 2022. So that's very exciting.    So, these conferences, because they originated in Europe, the first few conferences, the sort of the spirit of the conferences was very much cross cultural, cross linguistic, because Europe has so many languages and so many cultures there. In the early meetings, there was a lot of that sort of sharing of information and how things were done in the different countries. But it's always been a very friendly and supportive conference. And you know, I just love the IARC.   Janet: From your perspective, Linda, what has been the guiding philosophy for IARC over the years of its existence?   Linda: Well, it's a very interesting conference, in that there is no organization that auspices the conference. It's an organic one. It is driven by the community, the aphasia community. So, I think the theme of the upcoming conference in June in Philadelphia is “the engaged community”. And that's what we've become. The conference, I think, has been pushed around the world, if you like, by this engaged community of aphasia researchers and clinicians. I think that's one of the key features of this particular conference, is that it has a very strong focus on clinical practice. It's research, but it's often research by clinicians, for clinicians. So, the guiding philosophy has been that each place that takes on the conference, molds it according to their context, so there's no financial sort of carryover, from one conference to the other. It's an entirely independent sort of conference, but it continues to grow. So, it's very interesting from that perspective.   Janet: That's really exciting to hear, because engagement is so very important. No matter what you're doing, whether you're working with a patient, whether you're engaging in research, and to see this community of researchers and clinicians engaging together to think about aphasia, I think is terrific.    Linda, IARC, as its name implies, is an international gathering with previous meetings in Portugal, Greece, although I wish I would have been at that Greek island, that must have been a fun conference, Australia, Britain and the United States. So, will you reminisce about the past meetings you attended? I'm thinking in particular about the synergy and the collaboration that evolved during the meetings, and after the meetings   Linda: Sure. The sort of collaboration that has occurred has become a very international, interwoven network. And so, what we seem to be doing is progressing the field as a whole, because we're collaborating together, we're always sharing sort of projects, we're hopefully not reinventing the wheel. So, the conference is also a sort of a place where there's a lot of meetups. For example, the Collaboration of Aphasia Trialists will often have a meeting at the IARC. Aphasia United often has a summit, what we call a summit. For example, the last one we had was in Portugal. We discussed the issue of aphasia, which is one of the major recommendations of the White Paper. That led to a paper by researchers and clinicians at that summit, that set up a bit of a research agenda and brought the attention of, hopefully, the research community, to the fact that we're not making progress on aphasia awareness; that the numbers have stayed the same pretty much for a long time. So, then that attracted the interest of a Ph.D. student, Claire Bennington, and she is an experienced clinician, and also Deputy Chairperson of the Australian Aphasia Association. Her whole Ph.D. is all about aphasia awareness. So that I think is a good illustration of how the sort of collaborations across the world then can progress some work forward.    I like the single-track format of this conference in that everyone is in the same room together. So that means that everyone gets a greater understanding of other's work. The posters, there's a lot of time and attention given to posters as well. You get an opportunity to talk directly to the people at length; it's always the place where there's the new ideas are coming through. And so that's always exciting to see what new ideas, what new therapy ideas, are being brought through into developing some evidence, maybe, for those ideas. In Australia, we often have to travel long distances to the conference, we've been scheduling afterwards a writing retreat of international researchers. And so, for a week, we just talk aphasia, and that has also been very productive because it brings the researchers closer together as well. That's something that, I think, has emerged from this particular conference.   Janet: You've said some really exciting things and ideas, simple things from the notion of progressing the field together as a whole, and working together and collaborating, sharing, because don't we all get better when we share and work with each other rather than trying to be in our little silos. You also talked about the single-track format, allowing everybody to hear the same thing, the same message, the same paper, but yet they have individual perspectives. So afterwards, we can all talk about that paper and there can be different perspectives on it, that will lead to collaboration and synergy.    Linda: Yes, yes.    Janet: That's an exciting thing that's happening.    Linda: Yeah.    Janet: Well, as interest is mounting for IARC 2022 in Philadelphia, and as we emerge from the pandemic, I believe it will be heartening to us to see each other in person again. The program is stellar. It's well rounded, and it offers content for everyone. Linda, you are one of the keynote speakers for IARC 2022, and I wonder if you might give us a little bit of a teaser or trailer about your talk and any other interesting presentations on the program. Just enough to further pique our interest in attending IARC in June.   Linda: Yes, of course. I'm very honored to be asked to be a keynote. My topic this time is about mental health and integrating mental health into aphasia rehabilitation. And so, I framed it within something I talked previously about, the seven habits of highly effective aphasia therapists. This presentation will delve much deeper into one of those habits, which is about mental health. I do try to put a lot of thought and reading and preparation into my keynotes so that clinicians can go away with some things that they can implement on Monday morning when they return to work. So that's sort of my aim. My rationale is, I think, is that every therapist will encounter someone with low mood, depression, or anxiety, if they are in the field of aphasia rehabilitation. I'm hoping to present some compelling evidence about why therapists need to integrate psychological care into their aphasia rehabilitation. I want therapists to walk away knowing how to do it. And I'm going to continue the habits theme, by using the concept of tiny habits. So that's the teaser, I'm going to try to distill all of this evidence and complexity into three tiny habits that integrate psychological care into a failure rehabilitation. So that's my challenge.   Janet: Ooh, and a big challenge it is.   Linda: Yes. Maybe some people have already sort of listened to or heard the tiny habits book, but it just resonates with me when therapists are so time poor, that integrating a tiny habit that is prompted by some other sort of therapy, or behavior in the clinic room seems to make a lot of sense to me. I know that as a clinician, that you are going from one patient to the next, and you just need some little trigger, or a prompt sometimes, and a set of words, maybe, to remember to do something, to do a good behavior. So that's the tiny habits framework.    I'm also very keen to hear some of the other presenters. Marian Brady is going to be talking about the RELEASE study. If you haven't come across the RELEASE set of papers yet, it's a step up from Cochrane in terms of the trustworthiness of this evidence. They have used a secondary analysis on over 1,000 individual participant data points, so over 1000 people with aphasia. They're asking some of the really important questions in our field, like the effectiveness, not only on language outcomes, but functional outcomes; they're asking questions about prediction; and they're asking questions and providing answers to things like timing, intensity, frequency and dose of therapy as well. That is going to be a great presentation.   And Miranda, one of the great thinkers, I think in aphasiology, Miranda Rose is continuing the theme of dose intensity in the chronic phase. She is heading up the Aphasia CRE [Centre for Research Excellence in Aphasia Rehabilitation and Recovery] in Melbourne, Australia. There are some fantastic Ph.D. students in that center, I think there's something like 37 or something Ph.D. students. So, there's a lot of work going on. Jytte Isaksen is talking about training medical staff, and honestly, I have no idea how she's done that. I find medical staff one of the biggest challenges, trying to teach them about conversation partners and how they need to modify their language. Suzanne Beeke is also talking. She's talking about her amazing website, Better Conversations, and she's from London. It's all about the dyad, you know, treatment that addresses, both people in the interaction. From that perspective, it's a really great sort of site for therapists, and there's an online learning program. I know that they have recently trialed that with primary progressive aphasia, too. Yes. So, they're some of the sort of the invited presentations that I'm particularly looking forward to. There's a lot of papers that I'm also just looking forward to in terms of presentations, things like Madeline Cruice's and Lucy Dipper's, LUNA program. It's about sort of discourse intervention, which is just going to be great. And then Aura Kagan is going to be talking about conversation partner training in the acute setting. I mean, I have always found that a really challenging sort of setting. And then of course, there's Nina's updated White Paper, Nina and Jamie Azios, and I'm really keen to hear the updated version of that White Paper as well. That's not even going along the posters, because the posters haven't been released yet. So there's, you know, lots of presentations, I think that people will just find really interesting.   Janet: It sounds like, and I tell you, you have piqued my interest far beyond what it was five minutes ago. So, I'm very excited to hear these papers. I read the RELEASE papers and I agree with your assessment, that they really are taking a look at important questions, clinical questions, that we need to be asking ourselves, how we can be more effective and more efficient in the work that we do. But I'm especially interested in hearing your talk, Linda, because I think the psychological aspect of what we do is very important. We talk to clinicians, saying, well, we should be counseling, or we should be talking to patients, and clinicians will say, “Well, no, wait a minute, I'm not a mental health professional, I can't do that.” And I would say, well, that's right, you cannot do the things that mental health professionals can do or should do. But you can have a listening ear, you can counsel people on better communication strategies. So, it's very definitely a part of our work, just having a conversation with the person with aphasia and their family member, having that conversation and being a person who shows care and concern for the person and the family, as well as for the aphasia and the change in the behavior.    We've done some work on motivation lately and depression with some research partners. One of the things that we did was review a lot of papers that reported on aphasia treatment. Many, many of them talked about motivation, but what they said is something like, well, the patient did not do well because they were not motivated, or the patient was discharged because they were not motivated. Fine. But there was no explanation of what made them not be motivated, or how did they figure out the patient was not motivated. And quite frankly, I think that motivating is part of what we need to be thinking about as clinicians because if a patient is not motivated, we need to figure it out - if it is just not the time for therapy yet? It might not be. Or is there something that we can do differently or better to engage the patient and the family member in this enterprise of aphasia therapy? I think the whole issue of mental health and emotional health, is just a critical part. It will help us be better, more efficient, more effective clinicians, I think.   Linda: Yes, I agree. I'll be talking about the stepped psychological care model. I think that provides some clarity around our role in mental health. It talks about preventing psychological health problems, and then it talks about interventions that we can do that are not, you know, like behavioral activation, doing things that are enjoyable, etc. We are part of the team for that. When people need, you know, psychological intervention, we still have a role in that psychologists need to be able to communicate with the person with aphasia. So, you know, that stepped psychological care model is, I think, very useful for understanding what our role is as the mood problems get more severe. But we've got a lot of roles even in the prevention stage, too.   Janet: Yes, we do.   Linda: My keynote will then sort of be preface to Brooke Ryan's reporting on the results of our large, cluster randomized controlled trial of an intervention aimed at preventing depression. She will be reporting on the results of that, too. That's the ASK trial.   Janet: Well, that will be exciting. I keep thinking back to this issue of the engagement that you talked about earlier, not only the community of aphasia clinical researchers, but also the engagement of the patient, the family and people in treatment. That is what makes aphasia therapy successful. We can have the best impairment-based or activity-based treatment, but if we're not engaged as a group, whatever the group means, then that reduces the likelihood for the optimal outcome, I think.   Linda: Yes, I agree totally.   Janet: So, I'm so excited about IARC. I want to tell our listeners that registration for IARC is easy. Just go to www.aphasiaaccess.org/IARC2022/. You can register there; you can also see the list of speakers and events. You can also just search on IARC aphasia and get the link as well.    Linda, you have talked about so many terrific aspects of IARC and now I would like to ask you for your personal opinion on a question, why attend IARC? By that what I mean is, what makes IARC different from other aphasia conferences? There are many aphasia-related conferences each year, we've been to many of them over the years, when our paths have crossed, and each of those has great programming. We also know though, that people have limitations, such as financial limitations, job related requirements, family responsibilities, or travel concerns. And we all have to carefully select what meetings we attend, because we can't attend all of them. So, what makes IARC stand out in your mind as a premier conference on aphasia?   Linda: I think it's in the name. International, it is truly international, and it has rehabilitation in the name. The focus is very much on rehabilitation, not so much about the nature of aphasia, it's about rehabilitation. The focus has been on translating the research to clinical practice and involving clinicians in that decision-making about what research needs to be done is very much part of that. Also, it's becoming more and more apparent that we need to involve our clients in deciding what research needs to be done too.  The Philadelphia conference is a hybrid conference, so you can attend in person or online. I think that overcomes some of the travel barriers. I think it will be a very well-presented conference from an online perspective, because I know that they're investing a lot of money into the platforms. It won't be just a Zoom-type thing; it is a bespoke platform that they're using.    I've been to most of the other aphasia conferences around the world and what I like about, and why I go to, this particular conference, is I think it's the diversity of the cultures. For example, we've got one of the presentations from Ghana this year. There's a developing speech-pathology field in Ghana, and that's just wonderful that's going to happen. From a research perspective I think all of the papers really have had a focus on optimizing outcomes for the person with aphasia and their family, so it tends to be a highly relevant, person-centered, clinician-centric conference. I think if you're a researcher, you will come away from this conference with so many fundable projects and international collaborators for that particular project. If you're a therapist, you will come away from the conference with plenty of ideas on how to improve your service, with the backing of evidence, and it may even be…fun. Not only the conference may be fun, but also that the therapy and the rehab that has the evidence can actually help clinicians, I think, remain engaged with their clients, too. So, yeah, I think whether you're a therapist or researcher, you will get a lot from this particular conference.   Janet: And you will have a lot of fun while you're doing it.    Linda: Yeah.    Janet: And that's important.    Linda, you are a role model. You truly are, for all of us whose lives are touched by aphasia, or who work to improve the lives of people with aphasia and their family members. So, as we bring this interview to a close, are there any pearls of wisdom or lessons learned, that you'd like to share with our audience?   Linda: Well, I think I've probably learned a lot of lessons from my career.   Janet: Haven't we all? Haven't we all?    Linda: Yes, absolutely. One trend that I am noticing at the moment is that as our profession ages, maybe, that there are more speech pathologists, and even professors of Speech Pathology, who either develop aphasia, or have family members who have aphasia, and that inside perspective, allows them to tell us what we're doing well, and what we're not doing so well. I've had some opportunities to talk to some of those speech pathologists and get their perspective on aphasia rehabilitation. Certainly, the three things that they keep coming back to is therapist listening, so that they can individualize their therapy to the person's day to day life and their goals; that the therapy needs to be functional, that it needs to be geared towards what the person wants to achieve; and the final thing that they keep saying is that family members need to be involved as well. That not only includes just the spouse, but in younger stroke patients particularly, Brooke Ryan's doing some work in this area, of working with children, of people who've had a stroke and who have aphasia who sometimes have been quite traumatized by finding their mother or father having a stroke. Or from the other side, the parenting with aphasia - having to parent young children when you have aphasia. Families do want to be involved.    So, I always try to think, and to bring it back to that personal thing of, “If I had aphasia, I would want…” If everyone could just reflect on what they would want if they had aphasia, then I think we would be moving more towards a person-centered approach. For example, I think any clinician who gets me as an aphasic client is going to struggle with my husband. Well, in terms of communication partner training, you know, he's just not going to be able to do it, I don't think. I really do not want to tell you the Cinderella story, nor do I want to be describing the Western Aphasia Battery picture description. I sometimes feel as if I'd like to do an advanced health directive – do you do those sort of things where you write down what you want to happen more towards the end of your life?   Janet: We do. And that's a great idea, do not give me the Western Aphasia Battery picture, do not tell me Cinderella.   Linda: That's right. Absolutely. You know, really thinking about, okay, well, if I had aphasia, what services would I want? For therapists to reflect on that and to build their services around that, as well as listening to what their clients want.   Janet: You mentioned the three things that patients with aphasia have said that they'd like the clinicians to do; listen, make the treatment functional, and involve the family. Those are so very, very important. I want to make sure I say that the sentence that you said, or the really the call to action, or the challenge that you're giving all of us, is to ask, “If I had aphasia, I would want…” That's a profound question. Because I suspect most of us go through our lives, thinking that it won't happen to us. But it might. And if it did, what would I want?    Linda: Yeah, yeah. The number of speech pathologists who have a parent with aphasia, sometimes this is the reason why they've come into the profession, and why they've come into this interest area. And so, you know, it will happen to our family members, or even to us. So, it helps us to think, rather than thinking of the client as being some other person, it's about making it more person-centered.   Janet: I think about years ago, I don't even recall the situation, but in a graduate class, I was talking about this issue, in not quite as enlightened a way as you are doing now, but I remember telling the students, if I ever have aphasia and you are my clinician, please don't ever make me name pictures. And that's exactly what you're saying here for us to be cognizant of what the treatment envelope is like, not just the specific treatment technique, but the desires, the reality of what the level of recovery could be, and the family members' desires and needs.   Linda: Yes, absolutely. Yeah, our patients, our clients have a lot to tell us, we really do need to listen to what they're saying.   Janet: I hope we do. I hope that we all learn to listen much better as the days and weeks and years go on in front of us.    This is Janet Patterson, and I'm speaking to you from the VA in Northern California, and along with Aphasia Access, I would like to thank my guest, Linda Worrall, for sharing her knowledge and experiences about IARC with us. I'm especially thankful to Linda, for talking about person-centered aphasia, for having this discussion about things that we can do to make the therapy session more engaging and more relevant for our patients and for their family members. I'm hopeful that each of you will join Linda and many others at IARC 2022. Remember that you can register at www.aphasiaaccess.org.   You can find references and links in the Show Notes from today's podcast interview with Linda Worrall at Aphasia Access under the Resource tab on the homepage. On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access Conversations Podcast Project. For more information on Aphasia Access, and to access our growing library of materials, and to register for IARC 2022 Please go to www.aphasiaaccess.org. If you have an idea for a future podcast topic, please email us at info@aphasiaaccess.org, and thank you again for your ongoing support of Aphasia Access.

During this episode, Dr. Janet Patterson, Research Speech-Language Pathologist at the VA Northern California Healthcare System, speaks with Dr. Brielle Stark about the Distinguished Aphasia Scholar USA Award from the Tavistock Trust, technology, and aphasia rehabilitation, measuring discourse, and FOQUSAphasia. In today's episode you will hear about: Applications of technology to aphasia treatment, including provision of virtual care, Ideas for measuring discourse in a clinical environment, and FOQUSAphasia     Dr. Janet Patterson:  Welcome to this edition of Aphasia Access Podversations, 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 pleased to be talking with Dr. Brielle Stark, who is an assistant professor in the Department of Speech Language and Hearing Sciences at Indiana University in Bloomington, Indiana. Dr. Stark was a Gates Cambridge Trust scholar during her doctoral work, which focused on the effectiveness and feasibility of iPad-delivered speech-language therapy in adults with post-stroke aphasia. Using MRI, she also evaluated the neural correlates of inner speech in this population. During her postdoctoral fellowship, she researched brain and genetic biomarkers related to acquired language difficulties and language improvements following transcranial direct current stimulation in post-stroke aphasia. Presently, she's interested in modeling and predicting language reorganization recovery in acquired adult language disorders and in older adults, using structural and functional brain markers acquired from MRI. Brie is a co-founder of FOQUSAphasia, which brings together experts to improve the research on spoken discourse, specific to aphasia. Finally, she's interested in the relationship between manual gesture and language and communication and brain injury. In 2021, Brie was named a Distinguished Aphasia Scholar USA by the Tavistock Trust UK. The trust aims to help improve the quality of life for those with aphasia, their families and care partners. Congratulations on this honor Brie, and welcome to Aphasia Access Podcast.   Dr. Brielle Stark:  Pleasure to be here and finally to meet you in person. I say that with quotes since we're on a video, but close enough.    Janet: Agreed. I feel the same Brie. You were named to Tavistock Trust Distinguished Scholar in 2021. Congratulations again, as you have joined a talented and dedicated group of individuals. How has the Tavistock Award influenced your work in aphasia, both your clinical and research efforts?   Brie: Yeah, first, I was super humbled to join this group I admire all of the prior and current Tavistock Trust Award winners and also work with quite a few of them. It's a privilege to be a part of this group. But, you know, for me, something I've always thought about is, we can do science for science's sake, but for me, it's a lot more meaningful when we can make the science create meaningful outcomes for people with aphasia, include people with aphasia in designing the studies, and giving feedback on the studies. That's something I've tried to do throughout my career and hopefully am getting better and better at the more I do it. For me, that's the main point, is that we're doing science that's meaningful. That's our lab motto as well.   Janet: Isn't that so important now, because we read a lot of publications about treatments or ideas or assessments, but then they become very difficult to implement in the clinic. That's the whole world of implementation science, in fact we were talking about that just a little bit earlier, the challenge of implementing a treatment that we read about.   Brie: It's so difficult, and I have so much respect for people who work in the field of implementation science. I've dipped my toes into it and then promptly run away on a few occasions. At some point, I'll be brave enough to go back there. As a researcher without a clinical license, I often rely on clinicians to really feed back to me, is this worthwhile? Can we do this? Is this feasible? That's a really important part of my research and what my lab does, trying to make sure we're doing things that are useful.   Janet: Good for you because that is so very important. One of your research interests is technology, as it can be used with individuals with aphasia. As I mentioned earlier, this encompasses a broad range of topics such as iPads speech-language pathology, transcranial direct current stimulation, virtual treatment, and in particular, I want to highlight mentoring women in technology. Across all of these, is there a theme or an idea, or how do you see technology, such as you're using, influencing our clinical and research work with persons with aphasia?   Brie: Yeah, I love technology. Absolutely. I'm a member of a group here at Indiana University called the Center for Women and Technology. I've learned a lot through that group. For me, technology is a fantastic means of communication. Throughout my years, working with older adults as well as people with aphasia, you know, technology can really overcome a lot of barriers that are there for individuals. My prime example is that kind of feeling of aloneness, when you're recovering from a stroke when you're living with aphasia, and technology has a huge impact and kind of remediating that in many ways. So that's what got me interested in doing the iPad therapy many, many years ago. And it's kind of kept me interested, because I think we're moving toward a world where we want to create as many opportunities to communicate as possible. I think technology is one way to do that -not the only way, but definitely one way to do that.   Janet: You investigated telehealth and delivering therapy through telehealth didn't you, if I recall correctly,   Brie: We did a diagnostic mostly through a virtual platform. But the goal is actually, and we just recently got funding to do more of a telehealth model, we just recently finished a design where we were testing its feasibility. We brought people back for two different time points about a week apart. We wanted to make sure that people were comfortable with the task, we had everything lined up in terms of delivering things well, and also reliably amongst our testers. Now that we have that in place, and we just recently pushed out a paper on our actual methods, we're really excited to use it for an actual telehealth purpose.   Janet: Telehealth is so important, I think, and you know, at the VA, we've done quite a bit of that, in both assessment and treatment. I know that there can be significant challenges if the person doesn't have enough bandwidth, if they can't turn on their computer even. I applaud you for jumping into this arena to try to figure out the reliability and how valuable technology can be.   Brie: It is a tough one, I think our biggest hurdle to overcome has actually been the encryption on some of these HIPAA compliant conferencing apps where you just have to jump through about 12 different hoops to make sure you're logged in, you're not a robot, you're not someone who's going to, as they say, hack the conversation. We've had a few issues with that. But the other issue is obviously technology doesn't overcome all of the issues with reaching certain populations. I live in Indiana, I live in a relatively rural part of Indiana and still high-speed internet is not everywhere around here. We're not reaching everyone, but it's definitely one means of reaching more people.   Janet: I think so too, you know, you hear people saying, well, nobody puts down their phones these days, everybody's nose is buried in technology. I used to think that maybe that was a bad thing, but I'm not so sure now, especially when you mentioned earlier about using technology to address isolation that may occur with people with aphasia.   Brie: Yeah, I agree. I think it's a fine line between technology being an opportunity versus the only opportunity. I think we need to just make sure it's available if that is the preferred method. For many, I mean many in our clinic here, it's not the preferred method, so having the opportunity is quite nice. We recently had one of our participants in our aphasia group here move out of state, but wanted to stay in touch with their friends, so they often use technology to make sure that they can keep in touch with the group back here in Indiana. I think that's a great way to show when it is useful, even though that's not maybe their preferred method.   Janet: Well, good, I hope you keep going along this line of clinical research. Let me turn to another topic that's of interest to you - language organization in the brain. You've been looking at both neurotypical individuals and persons with aphasia. What are some of the findings from this area of work? And then, how do you see them as an application in our efforts in aphasia rehabilitation?   Brie: Yeah, that's a great question. I absolutely love neuroscience, it's one of the things I love teaching as well and I have that opportunity here with our masters SLP students, which is my favorite. For me, the first thing I was interested in was just a better understanding of how our brain actually does language. That is such a complicated question. For me, I came into it very much from that theoretical point of view, and a lot of my earlier work still looks at that, and I collaborate with people who are still really looking at that. More recently, I've been focused on to what extent can we learn something about the brain that tells us about some potential for recovery, or in some cases, a potential for decline? It's so important to try and figure out as much as we can, not necessarily to predict anything, but to improve our ability to tailor our treatments and to have candid discussions with people we're working with. I'm a pretty firm believer that we're never going to predict who's going to recover and who's going to decline because I think there are too many personal factors at play. But I think brain information can give us a lot of really useful things. An example being we've done some work with some collaborators on leukoaraiosis, which is white matter disease, mostly in older adults. it's pretty typical and many older adults, but it seems to be pretty prevalent in people who have had strokes as well. The extent to which there is more leukoaraiosis, in addition to, and even in most cases, is a better predictor than lesion volume itself, in stating whether someone will decline in their language abilities or not. It's this idea that there's something going on at the overall brain health level, that's important to understand. It's not just the stroke that's going to affect how someone is able to recover, for example. I think that's helped us think a little bit more globally about why we care about the brain and how we can use it in helping us understand these patterns.   Janet:  Your research is still at the early stages, and not yet with direct application to an individual sitting in front of you, right?   Brie: That's right. That's right. I think we I think we have a long way to go. Honestly, I think it's a design question, as well as a feasibility question. What I mean by that is the variability in people with aphasia is very large, right? We have individuals with different ages, who had strokes at young versus old age, who had different brain health factors. Then also, you have such different presentations of aphasia. It gets difficult, I think, to model brain changes when you have such variability. If you look at all of the work that's out there in neuroscience, it's lots of group studies of typical young adults. There is not very much variability in behavior there compared with what we're working with in terms of people who have language disorders. We have a long way to go, I think in making sure that we're answering the right questions and using the right designs, but I think we're getting closer.   Janet: I agree with that. I'll be looking forward to some of your work. Looking from the behavioral standpoint, as you mentioned, people with aphasia are so variable, not only in their type of aphasia, or their aphasia characteristics, but also in their personal characteristics, their interest in treatment, their ability to get to the clinic, their technology experience. All of these factors, this variability, contributes, I think, to a person's success or lack of success in treatment, and in general, in coping and living with aphasia. Taking all that into consideration when you're looking at brain function and language organization is very important.   Brie: Absolutely. Brain is one piece of the puzzle, right? And it doesn't, it certainly doesn't explain everything. I always chat with my students about the fact that motivation is so hard to quantify, to your point. I don't think that's something we're ever going to figure out as a brain basis, right? Someone's personal motivation to go to therapy, as you stated, or someone's environment, which is something we encounter a lot, like what's their social network like? What's their support system like? We're never going to be able to answer those questions with brain data alone. I think it's important to have that holistic point of view where you do understand the other factors at play. That's also why I like this LPAA model because there's an understanding of all of these factors contributing to the single person. I like that idea of designing studies in that way, as well.   Janet: We've been doing a bit of work investigating motivation, a couple colleagues and myself. We just keep going down this path and finding ourselves almost coming back to where we started, and not so much full circle, but full spiral because we seem to be back at the same point, but we're better, we're a little further advanced in our knowledge, but it's so difficult to understand the concept of motivation. I think that, as you mentioned a few minutes ago, clinicians or anybody really, but when we think about people who are working with people with aphasia, we tend to say, well, that person is motivated, or they're not motivated, but we haven't measured their motivation, we don't know what contributes to it. All of these factors, then are just part of what the brain does is it tries to reorganize itself and think through language and live with aphasia.   Brie: Absolutely, and kudos to you. That sounds like an intimidating research question.   Janet: It is, believe me, it certainly is. Let's turn now to discussing discourse production and analysis and aphasia, which I know has come to the forefront in your work lately. This topic, I think, has a long and storied history, long history. Despite many publications on this topic, clinicians and researchers remain in disagreement, or they lack clarity on the best way forward to use discourse analysis in a meaningful way in aphasia rehabilitation and clinical research. How did you become interested in discourse measurement in aphasia?   Brie: Yeah, that's a great question, and also a great synopsis of the history. I think there is an extremely long history and discourse is so fascinating because it is so interdisciplinary. I mean, discourse is interesting to people in linguistics, psychology, neuroscience, communication sciences and disorders, philosophy, it just goes across a lot of different disciplines. For me, I have always been interested in communication that looks like real life. Even in my Ph.D., I started focusing on it, reading a bit more about it, that continued through my postdoc, when I had an opportunity to do more independent research. Now in my assistant professor position, I decided that even though it scared me a little bit, I was going to tackle this. This scare is still real, but it's definitely fun. The people who are interested in discourse are some of the best people I've ever met. They're up for the challenge. That's why I've continued to really push, what I think is a kind of a difficult ball, up a hill, over these past few years. I'm interested in using discourse as a more natural outcome of therapy, but also a more natural outcome of just how people communicate, how we can actually talk about how people communicate. I'm all for naming outcomes as well, I think there's a place for those, I think there's a place for individual outcomes like that. I think discourse has a long way to go before it can come to the same standard and be used in the same way as a lot of the outcomes we have out there.   Janet: Isn't discourse what we do? When we tell jokes, when we tell stories, when we have conversations, when we connect any kind of speech, when we talk to ourselves. It is what we do. But it's so variable. You're right, there are so many challenges in trying to figure it out. I'm glad you're rolling that ball up the hill, and you have a lot of help to get that ball to the top one of these days.   Brie: I thank goodness for the help. Something I've just chosen to tackle is, and I'm really interested in, is how discourse changes according to the scenario that we're in. I really am interested in that. You know, the tasks that we give people to elicit language, how different is a discourse going to be if they're restricted to looking at a picture versus when they have to bring in some autobiographical memory, when they're talking about themselves, when it's emotional. That's something I'm super interested in, and I've done a lot of research on that. I'd like to now include people with aphasia in building those meaningful tasks. What do individuals with aphasia feel like elicits the language that reminds them the most of themselves? Some of the feedback we get is, “you are making me tell Cinderella again?” That type of feedback makes me feel like we're probably not asking the right question to get the best language sample from this person. That's something we're pursuing, my colleague and I, we're going to start really just asking the questions such as, “What do you feel like most resembles how you communicate on a daily basis”   Janet: There are several different kinds of discourse, we all we all know that. I just think about the life of anyone, the life of a person with aphasia, they want to tell a joke, or they want to tell a story, they want to whisper an endearment to a person who is close to them, they want to order coffee at the coffee shop, all those are such different kinds of discourse. Maybe they're not long, just a few words, but they are discourse. They do carry with them different requirements to be able to be successful in that. So good job for you for going in that direction.   Brie: I think it's really interesting. I think the other side of that is what do we extract from the discourse to actually demonstrate what we're looking for, right? I've chosen over the past few years, just because of my personal interest, to look at more linguistic things, an example is mean length of utterance. I work with colleagues, a Tavistock Trust winner, like Dr. Jessica Richardson, who works more on the functional side, you know, how many main concepts is someone producing? I think we're starting to get a better idea of what to actually pull out of the discourse to match what we think we want to measure. I think we're getting better at that, and that's something that I want to keep pushing for.   Janet: Good. I hope you do. I think that you're doing that through FOQUSAphasia. You're a co-founder of FOQUSAphasia. By the way, for our listeners, the link to FOQUSAphasia will appear on the Show Notes that accompany this podcast. It's FOQUSAphasia.com, right?   Brie: Yep, that's it.   Janet: You can access it that way. Anyway, you are co-founder of FOQUSAphasia, which is a group of researchers and clinicians who value the evidence derived from spoken discourse, and who want to improve the state of research, which will eventually translate into improved evidence-based practice for assessment and treatment of spoken discourse and aphasia. Tell me a bit about FOQUSAphasia, and the work this group is doing to support discourse analysis,   Brie: I would love to, it was co-founded by about four of us, gosh, back in 2019, actually, at a Clinical Aphasiology Conference in beautiful Montana. We decided that we wanted a venue where people could (1) network with others interested in this area, and (2) band together to actually achieve some of the goals that all of us clearly shared. As an example, we have one group that focused on best practices, and right after this meeting, I'm going to submit a paper from this group that's actually looking at standards for reporting on discourse. Similar to the Roma Consensus that Dr. Sarah Wallace worked on and spearheaded, and that you were involved, we went through a similar expert panel. We wanted to figure out how to enhance reproducibility, replicability, and the ability to just make assumptions across papers and discourse, what actually needed to be the bare minimum thing were reporting and had studied. That's what we asked people. We're going to put out a list of what we think is necessary and recommended to help create that foundation for the spoken discourse studies. We actually made it a little bit broader than just post-stroke aphasia, we were thinking more adult language acquired disorders. That's coming soon and it's one example of a band of people working together to try and achieve a goal. Another one has been highlighting early career researchers and clinicians in our lecture series. We've had a lot of people working on their Ph.D.'s, at a postdoc level, or people like me in their early career, come and talk about what they're doing with discourse. That's been really well received, we get lots of people coming to those and they're all archived for free on our YouTube channel as well. That's been great for visibility and getting people connected.   Janet: How can someone join FOQUSAphasia?   Brie: It's totally free. If you go to FOQUSAphasia.com, which is spelled FOQUSAphasia.com - Q stands for Quality - you can join us a member and then that gets you access to our forum, and also our mailing list. We send out upcoming events. and also use the forum to advertise studies to find other collaborators for grants, for projects. It's very much meant to be a clinician and researcher home for people who are interested in discourse from a variety of backgrounds.   Janet:  I've been on the site and I very much like some of the explanations you give about discourse, and how you describe the questions and the concerns that people have as we investigate it. I'm enthusiastic about FOQUSAphasia and hope that some of our listeners will join it and become part of this discussion as we figure out how better to think about discourse measurement. As I mentioned, I think Brie, I believe discourse comprehension and production is important, just in life, but especially it's important as we think about aphasia rehabilitation, because it is the heart of communication and connects us in so many ways. As FOQUSAphasia and other aphasia researchers around the world grapple with this complex topic and think about how best to measure discourse in individuals with aphasia. Are there pearls of wisdom you might offer to our listeners that they can put into practice tomorrow as they assess and treat their clients with aphasia?   Brie:  Well, that's a deep question. I think, yes. For me, the biggest thing is to come at it from a point of view of what is my treatment targeting, and what measure would be the most appropriate outcome? All of us have had linguistic training. We've taken psychology classes, we've taken all sorts of classes to let us think about the fact that if we're trying to measure something related to improved grammar, for instance, we should probably be thinking about a discourse that's going to be a little bit more robust in the type of things we're asking an individual to do and the type of grammar they're trying to produce. A good example is that there are a lot of treatments out there that are really focused on, let's say, word finding, semantic feature analysis, for example. If we're thinking of the best way to approximate word finding and discourse, we probably want to give people a sufficiently difficult example to try and make them probe for new words, right? So compared to giving them a picture that they're just looking at and just naming things, maybe we want to increase that difficulty a little bit and have some different prompts that we can ask them and measure. I know that sounds so simple, and so intuitive, but I don't think it happens a lot. I think people rely on using, for example, the picture description from the Western Aphasia Battery (Kertesz, 2006) as outcome, without thinking about if it is actually going to show improvement for the reasons I just stated? I think that's just having that critical thinking of what am I actually expecting, will help us to approach this. There are also some great perceptual tools that are now coming out. There's something called the Core Lexicon Checklist (e.g., Dalton et al, 2020) that's great to use on the ground. When you're looking for lexical access, that's a great one that's just come out. And I think those perceptual tools are going to keep getting better because we know that people who are on the ground in the clinic don't have a whole lot of time to sit there and analyze and transcribe everything. I think there are a lot of us trying to create tools right now that we can actually implement.   Janet: I think about some of the tools we have for discourse analysis, and they are very good. But as you mentioned, they take an enormous amount of time. These tools take a lot of time, far more time than a busy clinician has to analyze discourse. So what are we left with if we don't have a tool that we can use quickly and easily, and reliably to show the change in our patients as a result of therapy?   Brie: Yeah, I think what we're left with is unfortunately, an inability to reproduce a lot of these findings that are being published. You read a lot of these very well-done studies that are case studies or use several different people, and you just can't reproduce them, because the measures that they used either weren't reliable, to your point, or they didn't provide enough information about those measures in the paper. That's something I often encounter. For me, it's really thinking more from a research point of view of are we doing something that's useful, that can be implemented. I also want to be a little patient and say I think it's going to take a little bit of time for us at the research level to make the shift and make sure it's implementable. We need to keep moving forward, keep pushing it, but I think we're going to have to really give ourselves a little bit of time. I know that's an annoying answer. But I don't want to rush into it either.   Janet: I don't think it's annoying as much as it is realistic. For so long, people have just, as we talked about earlier, measured discourse in whatever way they wanted to or whatever way seemed appropriate at the moment. But now, if the goal is to try to be focused, reliable, valid, and really make a contribution in a meaningful, clinically meaningful way, it will take time to make sure that there's reliability, and that the advice that comes out of those actions is solid for clinicians?   Brie: Absolutely. I really do think, and I am going to say the ball analogy again, I think the ball is rolling. I think it's rolling quickly, because there are some great people working on these things all across the world at the moment. There are tons of groups that are not only improving outcome measures. I also want to point out, there are some groups that are creating treatments that are specific to discourse. The treatment itself is discourse oriented, and that has not been a focus for many, many years. Discourse has always been the outcome, but not necessarily the thing being treated. There is pretty substantial change, I think, coming and I'm really excited about it.   Janet:  You're right, and I'm glad that you mentioned treatments for discourse, because truly discourse has typically been used as pre-post testing, to show that there's been some sort of change, and that's fine. What has to happen and harking back to your interest in the language organization in the brain, what has to happen, so that the discourse itself can improve. Maybe the therapy has to be about the discourse, or some aspect of it, rather than having discourse be the pre-post measurement.   Brie: That's exactly it, and I think you'll find pretty much across the board it is so rare for therapies to, “generalize to discourse”, and I think we're thinking about it wrong. I think we're thinking that because we're training naming, we should see an outcome in word retrieval. But then we're forgetting that we've also chucked in the fact that we're requiring them now to use grammar. We're also requiring them to draw on some memory processes, and maybe some executive function, when we're asking them to do these discourse outcomes. If we train that also during treatment, I think it's going to make a lot more sense that we should be able to measure those things, that outcome   Janet: That's exactly right. Those are all the things we think about in research design. Not just research design leading to a study, but also clinical research design for what you're going to do with your patient, as you plan their treatment for aphasia.   Brie: Absolutely, and so much credit to clinical decision-making. Again, I have the benefit of a lot of time, and I give a lot of credit to people who make these decisions on very, very little time. I think it's going to be incredible to see how we can finally implement things in the research setting and really making them worthwhile for the clinician as well.   Janet: We just talked about clinical decision-making and for me, I think about mindful clinical decisions. People make clinical decisions all the time. I'd like to see them make those decisions based on evidence, not just the evidence in the literature, but also, thinking back to the evidence-based triangle, the characteristics the patient brings to the table for aphasia? Then adding in what you're learning about discourse, how do we find the best ways to measure the changes, to treat individuals with aphasia, and then measure the changes in discourse in persons with aphasia?   Brie: Yeah, absolutely. I like that. I'm going to use that mindful clinical decision-making now.   Janet: Well, good, go right ahead because that's what it's all about. People make decisions all the time. But if they don't do it mindfully, then you don't know why you've made that decision, or what you might expect. And I think mindful clinical decision-making helps us deliver the most effective and efficient treatment that we possibly can, which, of course is important for all of us and our patients with aphasia and their families.    Brie, your scientific and academic career has provided many interesting experiences and relationships for you, including recognition as a Tavistock Distinguished Scholar in the United States. Many of our listeners are research scientists, and many more are aphasia clinical specialists seeing patients on a daily basis. As we bring this podcast interview to a close, what advice or lessons learned, or interesting observations from your work in discourse measurement, and the use of technology with persons with aphasia, might you share with our listeners?   Brie: My biggest pearl of wisdom, I'm just going to make this very personal, is hearing and listening to the people around you. I really learned so much not only from my peers and the people who are my actual mentors, those that I would consider true mentors in the sense that I've worked for them or they're slightly more advanced than I am. I've learned equally as much from my peers as from my students and from the clinicians that I work with and lastly, from the people with aphasia, who are included in the study. We're just recently running this big study on inner language, how people with aphasia speak to themselves, why they do it, and how it creates a sense of self. I would never have approached this idea without having feedback from one specific person with aphasia that I worked with back in England. He said, “I have the world's richest inner experience, but it just I can't get it out”. That's been a seed in my head for about 10 years. So I just highly recommend just listening and being really open to what people want and what's important to them. I think that's going to be a key thing for driving forward meaningful research.   Janet: We'll keep that in mind. I think that's very important. A couple of studies have come out recently, and you mentioned this earlier as well, about asking people with aphasia and their families, what's important in research, what's important in the way we designed this particular study? Listening to them, and then incorporating those comments into your research design.   Brie: That's right. It's so motivational as well. I come from a very scientific training, I've studies neuroscience, psychology, and all of these things that have taught me how to think about design, but it really doesn't teach me what is meaningful, right? What do people want, what do they need, and so that listening is really important.    Janet: The difference between statistically significant and clinically significant or clinically meaningful, which is not always an easy gap to navigate.    Brie: It's not. That difference is sometimes huge, and sometimes not, but I think it's really valuable to know the difference.   Janet: It's true.    This is Janet Patterson, and I'm speaking from the VA in Northern California, and along with Aphasia Access, I would like to thank my guest Brie Stark for sharing her knowledge and experience with us as she and her colleagues investigate discourse and virtual assessment and treatment, and the use of technology in aphasia. You can find references, links, and the show notes from today's podcast interview with Brie at Aphasia Access under the Resource tab on the homepage. On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access conversations podcast project. For more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasia.access.org. If you have an idea for a future podcast topic, please email us at info@aphasiaaccess.org Thank you again for your ongoing support of Aphasia Access.     Reference Dalton SGH, Kim H, Richardson JD, Wright HH (2020). A Compendium of Core Lexicon      Checklists. Seminars in Speech and Language, 41(1), 45-60

A whole lotta shit goin!! Get yo shit off/ TI acquitted of all charges Brittany Renner “stepdaddy season in full effect” -city girls up by 6??? Big Adele or lil Adele? More lol nas x controversy/ met gala Diddy vs jermaine dupri -j lo vs Janet You ever cried over a girl?? Have you ever made a sextape?

During this episode, Dr. Janet Patterson, Chief of the Audiology & Speech-Language Pathology Service at the VA Northern California Health Care System talks with Dr. Rebecca Hunting Pompon, assistant professor in the Department of Communication Sciences and Disorders at the University of Delaware in Newark, Delaware, about depression, the effect it can have on people with aphasia and their care partners, and how speech-language pathologists can recognize and address depression during aphasia rehabilitation.   Guest Bio Rebecca Hunting Pompon, Ph.D., is an Assistant Professor in Communication Sciences and Disorders at the University of Delaware, and director of the UD Aphasia & Rehabilitation Outcomes Lab. Prior to completing a Ph.D. in Speech and Hearing Sciences at the University of Washington, she earned an M.A. in Counseling at Seattle University and worked clinically in adult mental health. Dr. Hunting Pompon’s research focuses on examining psychological and cognitive factors in people with aphasia, and how these and other factors may impact aphasia treatment response. She also trains and advises clinicians on interpersonal communication and counseling skills adaptable for a variety of clinical contexts.    In today’s episode you will learn: about the similarities and differences among sadness, grief, and depression, and sobering statistics of their prevalence in persons with aphasia and their care partners, how the behavioral activation model can assist clinicians during planning an aphasia rehabilitation program for an individual with aphasia and his or her care partners, 5 tips to use in starting conversations about depression with persons with aphasia and their care partners, and fostering their engagement in the therapeutic enterprise,  the value of community support groups for persons with aphasia.   Janet: Rebecca, I would like to focus our conversation today on your work investigating depression, and other psychosocial factors that patients with aphasia and their care partners may experience. Let me begin our conversation by asking how we define and think about depression, because I think everyone has an idea about what depression is, and how it may manifest itself in an individual’s interaction with family and friends, and certainly in the past year, as we've moved through this worldwide pandemic, focus on depression has increased. You have studied depression in persons with aphasia, and how depression affects their care, so first, let me ask, how do you define depression? And then how often does it appear in persons with aphasia?    Rebecca: Depression is a concept that so many of us are familiar with. In one way or another, so many people have experienced depression themselves, or alongside a family member, so I think it's such a common concept. Likewise, many people know that the definition of depression that we use most often is about a mood disorder. Usually, the two fundamental ways we think about depression, clinically, is that it is either low mood, or it can be a loss of interest, or pleasure. So of course, we all experience this from time to time, but depression is really a much more marked, persistent low mood or loss of pleasure, or interest, and it can span across days and daily life and make a tremendous impact. Those two features go with some other features like a change in appetite, fatigue and energy loss. Some people experience a slowing of thought or slowing of physical movement, or experience trouble with concentrating, or trouble with focus. It also could include feeling worthless or excessive amounts of guilt, and it also can be accompanied by recurring thoughts of death, which can be with a plan or more abstractly without a specific plan. Those are the constellation of symptoms that can go with that formal depression diagnosis.   Of course, aphasia, as we all know, comes with some significant changes in functioning after stroke or other types of brain injury. Loss and grief are commonly experienced by many people with aphasia and their families as well. Unfortunately, those losses that are experienced with aphasia can lead to depression in a significant number of people. Let me give you a little bit of context on that. In the general adult population, maybe like 9% of the population or so may experience a mild to major depressive disorder at some point; the number goes up for people that have experienced stroke to about 30% or so. In studies of stroke survivors with aphasia, the number is significantly higher. We recently completed a study with about 120 people with aphasia, and about half of them reported symptoms that were associated with a depressive disorder, mild to major. And I think it's really important to note that this is based on 120 people that were motivated to participate, to volunteer for research. We really believe that actually, depression may be experienced by a quite a greater number of people with aphasia, because we're not capturing those people that are at home, they're not engaged in speech therapy, and we really wonder if rates of depression in aphasia might be quite a bit higher.    Janet: That is a stunning set of statistics when you think about all the people who don't report, can't report, or don't come into the clinic, and their feelings; their ideas are pretty much lost in the world. I appreciate the comment that the people participating in your study are motivated, and they experienced depression. It's out there, and we need to pay attention to it. As a clinician, how might one recognize the presence of depression in a client?   Rebecca: Depression can be really hard to observe at times. A lot of people with depression can mask their depression and seem to be doing fine. I've had this experience working with a number of people who seem to be really thriving after their stroke, but then getting into the details and discussing their life and their reactions, we come to find that they're struggling far more than we perceive that they are. Other times we may get some sense of an experience of depression, maybe we observe a lack of initiative or motivation during treatment or get some sense that our client is just not enjoying his or her activities the way that they used to, or the way that we hear from their loved ones, how they used to participate in their life. What do we do if we're wondering, “Hmm, depression? Is this a factor for this particular person?” It can be helpful to ask about the specific symptoms of depression, sometimes more than asking, “Are you depressed?” I that's true for a couple of reasons. First, some of our clients may associate the label of depression as having a lot of stigma. Stigma around mental health has been with us for a very long time, unfortunately, and it's really a barrier to making sure that we can provide care and address issues like depression in many people, not just people with aphasia.  Of course, the other thing about the label of depression is that some people just feel very disconnected from that label. They might hear depression and say, “Well, that's not me, I don't really feel sad.” But again, as we talked a little bit ago about those features and symptoms of depression, it's not necessarily just a sadness, it's about mood and so many other things that go with depression. It can be helpful to talk about those specific symptoms instead of just the label itself.    I wanted to throw this in there too, sometimes I've been asked this by a number of clinicians, “How do I tell the difference between depression and grief?” The short answer is that grief doesn't come with feelings of worthlessness or guilt or shame. It's not the turned-inward type of experience, whereas depression can be turned inward. Ultimately speech-language pathologists do not need to feel like they need to be mind-reader's; they do not need to feel like, “I am not a mental health expert, so therefore I cannot ask.” We can ask about depression and depressive symptoms. We can ask ourselves, “Does this person's mood appear to influence their everyday life or their recovery?” That might be the thing that will push us forward to ask a little bit more about what their experiences are like. Helpfully, there are a couple of screening tools that are really useful for clinicians, regardless of type of clinician. One is the Patient Health Questionnaire. It's a depression scale, vaguely named. It's also called the PHQ. The PHQ is a nine, or there's also an eight, item version. They're very simple scales. They've been developed for clinical populations, so the phrasing is quite short and straightforward. They use a Likert scale and they're very well validated screening tools that are also free. I believe we're going to have the pdf of the PHQ-9, which is nine items scale, in the Show Notes.    Janet: Right   Rebecca:  Great. Another scale that's been developed specifically for aphasia, though, it's really addressing caregivers or other proxy reporters, is the Stroke Aphasic Depression Questionnaire, or the SADQ, and it's available also for free. There are a couple of different versions. Again, that's been created for people with aphasia in mind, specifically their caregivers. So that's really helpful tools. In Short, these are great tools to use, and just give us a little more information as we're having a conversation about depression. They then give us some ideas about what next steps to take, including referrals that we might be thinking about.    Janet: Rebecca, those are excellent ideas. And indeed, those two resources you mentioned will be in our show notes. You speak about depression in patients with aphasia, but I believe that depression also affects the care partners of a person with aphasia. What do you see is the role of a clinician in recognizing depression in a care partner?    Rebecca: This is really, unfortunately, true. Depression is experienced by caregivers, including stroke caregivers and aphasia caregivers, and depression symptoms align, and maybe not surprisingly, with the degree of caregiving effort that's required by the family members. In other words, caregiver depression, can be higher when caregivers are working with a loved one who has more severe functional impairment. Here are even more sobering statistics. There was a study conducted, it's a few years back, about caregiving adults, ages 66 and up, so it's a lot of our clients, family members, and spouses, etc. Those caregivers who reported mental or emotional strain had a 63% increase in mortality risk compared to caregivers who did not report strain. That's a really shocking and sobering to think about. The takeaway here is caregiving burden, as it's often called, that s just a very, very real problem with us. Given that caregivers are such an important part of our client's recovery, their health and well-being are just incredibly important. So how can we support them? They're not our primary concern, because our client is, so what do we do? What do we do for caregivers to support them? Of course, we can ask how they're doing, certainly. Then we can also provide some support resources, support groups, counseling services, and the fact that we are doing much more online now has opened up opportunities for both caregivers and clients to participate in lots of different ways, to connect virtually, and so that's great.    Another really great tool that can be used is called the Caregiver Questionnaire. It's a questionnaire that has 17 items and was developed by the American Medical Association. It just goes through a listing of common caregiver experiences that can really be illuminating for caregivers. I've given this questionnaire to caregivers in different contexts, including in caregiver support groups. What I hear from caregivers, once they go through those 17 questions, is often they're surprised. They're often not thinking a lot about how they're doing themselves, because they're very focused on supporting their loved one. It can be really illuminating for them to answer the questions and realize, “Wow, I am really fatigued I'm really tired. And maybe I need some extra support”. What I sometimes recommend to clinicians is having this questionnaire on hand and providing it to caregivers while you're working with the client, and then maybe checking in at the end of the session to say, “You know, how was that for you?” And it's an opportunity, again, to provide some support resources that they can explore on their own. I think it's a really handy way to just shine a light for caregivers, saying, ”Hey you're doing a lot, we recognize that and we know you need support, too.”   Janet:  I think that's very important. It reminds me of the message you see on the airlines, you know, put your own oxygen mask on first, so that you're better able to help the other people. If you're a caregiver, you must take care of yourself, and we must help the caregivers take care of themselves so that they can better care for our patients with aphasia.    Rebecca: Oh, my gosh, so true.   Janet:  Depression typically does not appear by itself. You've alluded to that and mentioned that earlier. In your experience and investigation. How does depression interact with coping skills, resilience or motivation? Are there other interactions that we may see in persons with aphasia?    Rebecca: Oh, my gosh, depression, part of the reason that I studied depression, among other things, is that it's a really interesting experience. It's part of a grouping of some biophysiological processes that are so intimately linked together. I hope you don't mind if I geek out a little bit here.   Janet: Geek away   Rebecca: Geek away - All right. We know that when we perceive something stressful, like, let's say we're near a potentially dangerous animal or something like that, it's classic example. It triggers systems in our body that helps us respond, right, we've heard of the fight or flight response, where our adrenaline system jacks up so that we can move quickly, right or get away from the danger, or if we have to, fight it off. Then once the danger is gone, our body goes back to its normal functioning state, the adrenal system stops pumping out adrenaline and our heart rate slows to a normal rate, all that good stuff, right? So of course, our body does pretty much the same thing when we're not in danger, per se, but we are experiencing or we perceive stress; that could be public speaking for some, or a big job interview. Then thinking about people with aphasia, maybe it's really stressful to make that phone call to somebody, even someone they know well. They don't feel confident about their communication ability, and that can be incredibly stressful. Even though it's not danger, it still can kick our body's stress systems into gear, activating that adrenal response, etc. Here's the thing, though, if our body is entering that stress state pretty regularly, it gets regularly flooded with these stress biochemicals that can impact multiple systems. We can handle those biochemicals, we were built to handle those biochemicals. But we weren't really built to handle them all the time, or often over a long period of time. If those biochemicals are circulating in our blood, they can really have a damaging effect on our body, and they have a damaging effect on parts of the brain, that are really important for us as speech language pathologists thinking about treatment, right? So those biochemicals, and cortisol is among them, can diminish functioning of regions of the brain that we need for things like attention and memory, things that are really important for learning, right? What do we do in treatment - we learn. At the same time, these biochemicals can increase parts of the brain, like the amygdala, that are really central for emotion. In other words, if we're experiencing persisting stress over a period of time, we may have impairments in memory and focus to a degree, and we may also experience depression, anxiety, and other mental health challenges. I got really, really interested in stress and depression a few years ago, and as you mentioned at the beginning, we created a scale for chronic stress for people with aphasia. Using that scale we found, just as we would in the general population, that there are very close associations between reports of perceived chronic stress and reports of depressive symptoms. The bottom line is that chronic stress is significantly connected to depression, and it's significantly experienced by our clients with aphasia.   You asked about coping skills and resilience and that's another area that I've been really, really interested in. We know that there's an association between depression and resilience, or how people cope with stress. As resilience goes up, depression tends to go down. But we also have seen that this relationship is more complex than I anticipated. We are currently validating a scale of resilience for aphasia. We really want to understand better how resilience and depression and other mental health challenges fit together, and then how we address them.   Janet:  I think that's very important work because we're, when we engage on the therapeutic endeavor, when we begin treatment, it is a partnership. And both the clinician and the patient with aphasia, but also the caregiver, we have to be in there engaged in that process and moving forward to achieve whatever communication goals we have in mind for the patient. If a patient is not engaged because of low coping skills or low resilience, because of depression, that can certainly affect our treatment,   Rebecca: Agreed. It's things that we don't really understand. I mean, we understand to a degree, for sure, but I think with some time and some additional research, we'll be able to understand much more clearly how depression and resilience impact treatment, and also how we can capitalize on resilience and build it. I'm looking forward to uncovering some of these associations and understanding them better.    Janet: Oh, I look forward to reading your work on that. I want to ask you now the next logical and perhaps obvious question, which is how may depression experienced by a person with aphasia adversely affect the treatment, as well as the quality of life in that person, and with the person's caregivers?   Rebecca: We've talked about people who have experienced depression in one way or another, and depression is really mean. It is really a mean, mean process, that can sap our interests in things that we like to do and screw up our sleep and our appetite. It impacts others around us, of course, but yes, absolutely, depression can dampen motivation. That's one of its features, it can dampen motivation to get out of the house, or for our clients with aphasia, it can diminish how much initiative they want to take with activities, especially social interactions that really help with language function and recovery. It may diminish their initiative to seek support or to reach out and start speech therapy. Then, even when a person has decided to actively engage in therapy, depression may also limit how much he or she can take away from that therapy experience to a degree, given that it's harder to attend to things, it's harder to concentrate, it's harder to remember, when you are also struggling with depression. Then it's also that all of those things that contribute to how well we can engage in treatment and adhere to treatment recommendations. We need a level of motivation and initiative and energy to tackle assignments that our therapists might have given us to work on in between our sessions. There are just multiple ways that depression could influence treatment, either through those diminished cognitive processes, or the impact on engagement, and adherence. There are just a lot of questions that we have, still about these impacts on treatment, and how they influence the outcomes of treatment.    Janet: One of the things we've observed in some work we've done recently is that people talk a lot about motivation, or resilience or coping, but people haven't yet figured out what that means or how to identify it. I'm very glad that you're doing some of this work to help us understand how we can best approach the treatment effort and really assure maximum engagement of the patients to achieve the goals that we want to achieve.   Rebecca: It is really interesting. There is some really interesting work going on in some other allied health disciplines that is, I think, helping us to pave the way in thinking about how to ask these questions about engagement. It's for our clients as well. I am excited to move forward on that.    Janet: You're right about that! Speech-language pathologists are by nature, compassionate individuals, and would be responsive to a person with aphasia or a care partner who seems to show depression. What guidance can you offer for clinicians as they plan and implement a rehab program for a person with aphasia, who shows signs of depression?    Rebecca: Oh, first of all, Janet, I agree. Speech-language pathologists are such a big-hearted bunch and that is just a real plus for our clients. There are a number of things that we can do to consider depression and treatment planning. In addition to being aware of the impact of depression, and those engagement and motivation issues, the cognitive issues, and the screening that we already talked about, we of course, can make appropriate referrals. This can be easier for some clinicians and more difficult for others. Some clinicians who work in an environment like an acute care or rehab environment, may have access to a psychologist or social worker, rehab counselor, someone like that who can help step in and provide support or other resources. For other clinicians who work in outpatient settings, the best referral might be to the client's primary care physician. Unfortunately, as we know, there are just not enough mental health professionals with aphasia expertise; we need so many more of those. That's a whole other discussion, isn't it? The primary care physician and support groups can be some of the first people that we refer to, if we are working in an outpatient setting. In addition to those things we can also provide some information and training to family members, and our colleagues and our clinical teams about supportive communication techniques. Interestingly, people with aphasia have talked about how interacting with people that know a little bit about aphasia and know how to support communication really can not only facilitate the conversation, but also help improve their mood, and give them a little boost. They also talk about how important it is to both acknowledge their experiences and perspectives and struggles, and to have at the same time, a positive outlook, to use humor, to celebrate goals. All of those things have been things that people with aphasia have talked about as elements that really help in working with clinicians and others for that matter.    Another thing that has come up, and you and I have talked about this a little bit, is also about the tremendous impact of mental health challenges for people with aphasia. We talked a bit ago about the very high incidence of depression in aphasia. And so, people with aphasia have said in previous work that they really wanted more information about low mood and changes that can come with stroke, around mood and mental health, and wanted an open forum to talk about that, and continue those conversations with caregivers as well. That open discussion about depression, about other kinds of mental health struggles, can really help normalize it, help destigmatize it so that we can address it more readily.    Janet: That makes sense. And you know, one of the key points I heard you just say is that, as a clinician, it's important for us to be aware of the community resources that are around us, whether they're specific individuals like neuropsychologists or mental health workers, or support groups or community groups. Bearing that in mind that we're not alone, as clinicians working with patients with aphasia, we have a whole group of people who can contribute to this rehabilitation effort.    Rebecca: Absolutely. And I was going to add, in addition to the myriad of people that can be around and supporting people with aphasia who are struggling with mood issues and other mental health challenges, support groups are really amazing. I would say if I gave a couple of tips for clinicians, but I had three things that I was thinking of, that we can really encourage for our clients, and one is to really seek out those support groups and other opportunities for connection with each other. I mean, I think we all know that groups can be so amazingly effective at not only providing some opportunities for social connection, but also that emotional support, and kind of perspective-checking opportunities for our clients can realize, “Oh, I'm not alone, others are also struggling in a similar way.” I'm the biggest cheerleader for support groups, as I think we all are,    This is one of those broken record things. Exercise is another incredibly, useful tool. We all know, of course, that exercise is good for our health and our cardiovascular functioning, all that good stuff. But it also so helpful in improving mood and cognitive functioning. Getting outside and moving around is just so important. There is just scads of research across many health disciplines that talks about this and reminds us about the importance of exercise.    Here's the other thing that I think is really cool to suggest to clients. And that is, in simple terms, do more of what you like to do. There's been some work around behavioral treatment approaches for stroke survivors, including those with aphasia, using a framework called behavioral activation. Thomas and colleagues in the UK have done a little bit of work around this. The basic notion is that by doing more of what you like to do, provided it's healthy and not detrimental, of course, can really help improve mood. When we do things we enjoy, it releases endorphins, and it gives us some sense of satisfaction and well-being. That's exercise for some people, not for everybody. Other people may find doing creative things, or learning something new, or engaging in something that feels like it's contributing in some way. Those can all be things that can over time, help improve mood and outlook. This can be a little challenging for folks with aphasia; the things that they think about or reach for, or things they enjoy, are maybe no longer available to them because of their language and communication impairment, or other impairments that have come with stroke. So again, the support groups are so helpful. They can be places where people have an opportunity to learn about new activities or connect with opportunities that may fill that hole of things that they like to do, new things that they hadn't discovered before. I always have more plugs for support groups.   Janet: The things that you mentioned, they're simple, they're easy, but they're so powerful. Sometimes we forget that the simple things can often have the biggest change or make the biggest change, or the biggest difference for us. It's a good thing that you have been reminding us of those things today.    Rebecca: Simple things, and sometimes combinations like a couple of simple things together can make a huge impact.   Janet: As important as the treatment techniques are to address specific linguistic and communication goals, an individual's mental health state and their feelings of engagement with the clinician and the process are just as important, as we've mentioned several times today, What advice or suggestions or lessons learned, can you describe for our listeners that will help them become better clinicians, and address the whole person in aphasia therapy, including our role as clinicians in counseling, and I don't mean the professional counseling that is reserved for degreed mental health professionals. I mean the communication counseling and quality of life communication counseling.    Rebecca: Yeah, even though speech-language pathologists are not mental health experts, there really are a number of very simple counseling skills that can help connect with our client s and more fully understand how they're doing, where are their struggles are, how are they doing in terms of mental health. When we understand them more fully, what's important to them, what they're struggling with, then it's easier to build treatment plans that fit them as individuals. So, if I'm putting on my counseling hat, I have a couple of things that I would prioritize, I think I have five, five things that I would prioritize as a speech-language pathologist using some counseling skills.    Janet: I will count them.   Rebecca: The first one is really to consider their stage post event or post stroke. If the stroke or the event is new, we may be working more with the family; they may be in shock, they may be overwhelmed and struggling to take in the information that we and our clinical team are providing to them. Those conversations differ tremendously from the conversations we might have with clients and families that are in the chronic stage, because they have a better sense of aphasia and of what it means for them, what their everyday needs are, etc. I think considering first of all, the stage post stroke or post event is really important.    The second thing I would say is to find empathy and unconditional positive regard. It is good to know that depression is complicated, and it can come with emotions, a lot of different emotions and experiences from anger and frustration and shame, and so sometimes our conversations around depression can be uncomfortable. I would say, approach these conversations in an open and honest way about the client's challenges and maintain that unconditional positive regard even when we're feeling that discomfort ourselves. If they are angry and frustrated, we also may feel angry and frustrated or defensive or something else that doesn't feel very good as clinicians, or for anybody for that matter. Just remembering that unconditional positive regard, that we really all want the same thing. We want improvement. We want improvements in life and to face things like depression and find some answers that will really help push clients forward.    The third thing that I would say is giving clients and family members our full attention and listen really actively and carefully. Sometimes this can be just an extra 30 seconds, an extra 60 seconds of listening using some reflective techniques that can really provide some critical information about our client, their needs and priorities that we can use in treatment planning. At the same time, this act of listening very deeply, and reflectively can help build our connection with their client and that's going to help promote engagement, adherence, and trust, which is just so essential for the therapeutic alliance.    The fourth thing I would say is communicate multi-modally. I would say this not just for clients, but for family members as well. I myself have been the caregiver in situations where a clinician, never an SLP I will say, has come in and talked to a loved one and it was wasted words and time because nobody could take in that information. It was feeling overwhelmed and that that information might have come in as just some noise; maybe we remember one or two words from it and couldn't take the rest of it away, just given everything else that we were processing in that moment. I always say, never just say something, say it and write it or diagram it. This is just again, so important with clients and families who are stressed, who are depressed or anxious in some way. It is just so hard to remember when we're feeling overwhelmed. We can really support our clients and families by communicating in a multi-modal way. Even almost as important as summarizing what we've said and providing information again, I had a caregiver once say never tell us more than three things at once, because the fourth thing is going to be lost. I took that to heart; I understand that that makes perfect sense. And of course, providing a lot of opportunities for questions is helpful. That number four had a lot of pieces to it.    Here's number five, and this is really obvious, developing mutual goals with our client and revisiting them. Sometimes when our client is struggling with depression, we might find their treatment plan seemed like a great idea, seemed like a great fit for our client, and just falls flat. If our client is really struggling to concentrate or engage in an activity because of depression, it just makes sense to stop and revisit those goals and make sure they really line up with the client's interests and priorities, but also how they're doing and how they're able to engage given everything else that's going on - mental health-wise and otherwise.    Janet: Those are five excellent tips, Rebecca, excellent. And again, they're not difficult things to do, but they're so important, especially if you do all five of them together. I think our listeners are going to be quite pleased to learn about these five ideas that you have.    Depression experienced by persons with aphasia is not new, we've talked about this earlier, certainly as long as there has been aphasia, there have been people with aphasia and depression. But although it's not new, it has not been well recognized or really well studied, as you mentioned earlier on. During the past year, as a result of changes due to the pandemic, such as the stay-at-home orders, limitations on in-person activities, and the increase in virtual care, I believe depression and associated mental health and self-care concerns have increased and have come to the forefront of our thinking. Have you found this to be the case?   Rebecca: It's interesting. We are in the midst of a study right now, that's looking at how our research participants are doing during the pandemic as compared to pre-COVID, pre-pandemic. We're not done, we're midway through, but so far, we're seeing some really interesting challenges that people are reporting with everyday functioning during the pandemic, which it doesn't surprise us, of course, we're all struggling with functioning, I think, during the pandemic. We're not necessarily seeing greater levels of stress for the group we've done so far. Some people are reporting more stress, and some people are reporting less, which is fascinating. I'm going to give you some examples. Some people have said that they're not really that bothered by not being able to leave the house. Then other people are talking about how they're not able to do the things that they've always done, and that's been really difficult and stressful for them. So clearly, there's a lot of variety of experiences that we've heard so far. I'm really looking forward to finishing up that study and just looking at all the data together. Maybe the next time we talk we'll have some better news or a clearer picture about what people's experiences are like.    Janet: I'll look forward to hearing about that.    Rebeca: Separately, a couple of months ago, we chatted with our friends with aphasia and just asked, “Hey, what's been helping you during these lock downs, during this time of isolation?” And here's what they said: they said things like games and puzzles and dominoes were helping; listening to music every day. One person found brain teaser books were helpful and fun right now; several people were cheering for support groups that they were attending online; playing with pets; connecting with family over FaceTime. One person talked about chair yoga. Those are the things that our friends with aphasia are doing that they say are really helping.    I think we're all thinking about self-care right now. It's just so important, of course exercise and getting outside and learning something new. I think we've all heard of countless people that have learned to bake bread this year, me among them. Taking care of things like a new plant, and then just finding ways to connect with each other, though a little bit different than we were doing it before.    Janet: That is so true. I think we've all been finding those new ways and new things and new ways of connecting with people. Rebecca, you've given us much to think about today. Depression may not always be easy to recognize in an individual, and certainly its management is multifaceted. As we draw our conversation to a close, what are some words of wisdom that you have to offer to our listeners who interact with persons with aphasia every day? And who may be wondering, “How do I start a conversation about depression with my clients, or my clients’ caregivers?”   Rebecca: I would say first, be yourself, be genuine. When we are able to genuinely connect with our clients and their families, it really does strengthen the trust, and build our relationship for some good clinical work together. Then ask about depressive symptoms, as we've talked about before, and communicating openly about depression; not something that we should, you know, hide away, but actually discuss and regularly check in on, as well as providing some resources and support for what to do when someone's feeling depressed or struggling with mental health. Then listening fully and acknowledging the experiences of our client, the good stuff, the difficult stuff, all of it. They're really the experts on life with aphasia and they are such a critical part of our clinical decision making. Then keeping our eye on the literature as there is more clinical research on depression, and other psychological challenges in aphasia right now than I think ever before, which is incredibly exciting. So just keep an eye on that. And then I think this is a really important one - take care of yourself. Clinicians working with people with communication disorders are also experiencing depression. It can be a lot over time, and no one can be a great clinician if their own health, their own well-being is compromised, so do what you can to take care of yourself. Again, simple things, several simple things we can do to just make sure we're our most healthy and going to be the best supporters for our clients and their families.    Janet: Those are some very, very good suggestions. If I'm right, you have a paper coming out in Perspectives soon, about counseling skills, is that correct?    Rebecca: Yeah, there should be a paper coming out soon about counseling skills, and also about stages using those skills, depending on the stages post event or post stroke, hopefully, that'll be coming out really soon.    Janet: This is Perspectives for the Special Interest Groups within the American Speech-Language-Hearing Association. I have to say, I remember, oh gosh, many, many years ago, I wrote a paper for Perspectives on depression and aphasia, and at that time, there was not very much written about it; people were thinking a little bit more about quality of life. As I reread that paper before talking to you today, I found myself thinking how much more information is available now, how much more in the forefront is the topic of depression, and mental health and psychosocial skills, and how pleased I am that there are so many people who are really recognizing the importance of having these conversations with our clients and caregivers.   Rebecca:  I'm so glad that there's more available now, but I have to say thank you, Janet, for blazing that trail those years ago, you have been an inspiration clearly and I'm glad that we are picking up the pace on these important topics.   Janet:  And you indeed are. This is Janet Patterson and I'm speaking from the VA in Northern California, and along with Aphasia Access, I would like to thank my guest, Rebecca Hunting Pompon, for sharing her knowledge, wisdom, experience and guidance about this most important topic, the effect depression can have on persons with aphasia, and their care partners.    You can find references and links and the Show Notes from today's podcast interview with Rebecca, at Aphasia Access under the Resources tab on the homepage.   On behalf of Aphasia Access, we thank you for listening to this episode of The Aphasia Access Conversations Podcast. For more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasiaaccess.org. If you have an idea for a future podcast topic, please email us at info@aphasiaaccess.org. Thank you again for your ongoing support of Aphasia Access.   Links and social media Lab website: UDAROLab.com Facebook: “UD Aphasia & Rehabilitation Outcomes Lab” AMA Caregiver Self Assessment Questionnaire (free pdfs; 5 languages): https://www.healthinaging.org/tools-and-tips/caregiver-self-assessment-questionnaire   Citations Modified Perceived Stress Scale: Hunting Pompon, R., Amtmann, D., Bombardier, C., and Kendall, D. (2018). Modification and validation of a measure of chronic stress for people with aphasia. Journal of Speech, Language, and Hearing Research, 61, 2934-2949. doi.org/10.1044/2018_JSLHR-L-18-0173   Patient Health Questionnaire depression scale (PHQ)  PHQ9 Copyright © Pfizer Inc. All rights reserved. Reproduced with permission. PRIME-MD ® is a trademark of Pfizer Inc. (open access)   Stroke Aphasic Depression Questionnaire (SAD-Q) https://www.nottingham.ac.uk/medicine/about/rehabilitationageing/publishedassessments.aspx  

Janet Patterson, Ph.D., CCC-SLP, Chief of the Audiology & Speech-Language Pathology Service at VA Northern California, speaks with Jessica Richardson, Ph.D., CCC-SLP, about aphasia, neural recovery, treatment outcome measures, and discourse, all at the center of her study to improve communication and life participation in persons with aphasia. These Show Notes are an abridged version of the conversation with Jessica. Jessica Richardson, Ph.D., CCC-SLP is an associate professor and speech-language pathologist in the Department of Speech and Hearing Sciences at The University of New Mexico. She is director of the Neuroscience of Rehabilitation Laboratory, the SPACE (Stable and Progressive Aphasia CEnter) within, and the UNM Neurochoir. She is also Outreach Director for the Center for Brain Recovery and Repair at The University of New Mexico Health Sciences Center. Her research focus is on improving assessment and treatment for adults with communication disorders following acquired brain injury (e.g., post-stroke aphasia, post-TBI cognitive-communication disorder) or due to progressive disease (e.g., primary progressive aphasia) in order to improve participation in everyday life activities. Her lab also studies the impact of brain stimulation on brain structure and function, as well as on behavioral outcomes, in these populations. She uses structural and functional neuroimaging (e.g., EEG, MRI) alongside narrative assessment (and other behavioral measures) to identify diagnostic biomarkers and/or to characterize recovery, disease trajectory, and response to treatment. Dr. Richardson is a 2020 Tavistock Distinguished Aphasia Scholar, USA. In the comments and highlights Below you will read about Jessica’s work and the influence the Tavistock award has had on her career. Janet: How has being named a Tavistock Distinguished Scholar USA for 2020 influenced your continued work in aphasia clinical research? Jessica: This award has reenergized my work. As we go along in our careers it can become easy to lose track of our mission and, as I did, begin to ask why I am following this path. The Tavistock award has a focus on helping people change the lives of people with aphasia, and  receiving this award reminded me of my mission and why I am here doing what I do every day, especially in 2020 which we all recognize posed an extra challenge to life. In addition, the Tavistock award supports networking with people around the country and the world to talk about ideas and building a bright future. Janet: Much of your work in aphasia has focused on measuring discourse production in persons with aphasia, in particular, conveying main concept information. How do you see production of main concepts in a discourse event as important in supporting successful communication between persons with aphasia and their communication partners?   Jessica: As you know, there are hundreds of discourse analysis measures out there. I began examining discourse using Brookshire & Nicholas’ CIUs – a measure that has power and limits and that clinicians both love and do not love. Brookshire & Nicholas also wrote about using Main Concepts as a measure of discourse and after reading about it, I was hooked! However, I could not find any tools using Main Concepts and so decided to do something about that. Communication requires that we give and receive information and the idea of Main Concepts focusses on packaging the gist of the information so partners will understand each other. If the packaging is faulty then the communication can be poor or can fail. Measuring and targeting how people package the gist of what they want to say is useful for our patients. Main Concept Analysis in assessment of person with aphasia is a psychometrically sound procedure, and clinically useful, but it only takes us so far because information has to also be organized. My team and I are expanding Main Concept Analysis by looking at story grammar and sequencing, using Main Concept Sequencing and Story Grammar Analysis because we know the packaging of the message is as important as the content. Janet: Clinicians working in a busy practice may find it challenging to add discourse measurement and treatment to their treatment plans for persons with aphasia, especially if the measures require a bit of time to administer or score. What advice or suggestions can you give to our listeners about how they can efficiently include discourse measures in assessment and treatment? Jessica: Another measure I have worked on is the Core Lexicon. Here is my message to clinicians: Dear Clinicians: Many researchers are dedicated to working on development of clinically useful discourse measurement. I am proud of recent work we published on utility Main Concept Measurement because it is clinically useful and does not require phonetic transcription. Our checklists and scoring methods are readily available to you. Other resources on discourse analysis available to you are a recent issue of Seminars in Speech and Language; a link in Aphasia Bank; FOCUS: Aphasia (Fostering Quality of Spoken Discourse in Aphasia). If you have questions about a measure and how to use it, do not be shy about reaching out to the authors. Janet: Another area of clinical interest to you has been using transcranial direct current stimulation, or tDCS, as a treatment technique. Here’s a multiple part question for you about tDCS: how does tDCS work; how do you use tDCS in aphasia therapy; and how can it enhance communication skills in a person with aphasia? Jessica: There are long answers to your questions that we could spend hours discussing. Let me give a short answer here. tDCS can modulate your brain; it is called neural stimulation but it is best to think of it as neuromodulation. tDCS does not make neurons fire or stop them from firing but modulates the ‘soup’ within which these neurons are firing. Electrodes are placed on your scalp and electrical current passes through your scalp and through your brain, and influences electrical communication that is already happening between your neurons. In aphasia therapy we pair tDCS with behavioral therapy with the goal of modulating electrical communication between neurons that is already happening during treatment tasks in hopes that you can encourage more involvement of desired brain areas and downplay involvement of less desired brain areas. So far, the most positive effects have been seen with naming treatment. We are in the early stages of pairing tDCS with discourse treatment and have promising results. The work I am doing now combines two areas of research that I love: brain stimulation and discourse, and I am happy to have received a grant to further my work in these areas. Janet: tDCS works together with behavioral treatment. How do you see tDCS fitting into contemporary aphasia treatment to support functional communication and life participation for persons with aphasia? Jessica: I think this technique shows promise and will help reveal untapped recovery potential. For so long we focused on the brain lesion: the site, the size, what it can tell us about what a person can and cannot do. However, the lesion is not a modifiable factor, and the focus should be on things that are modifiable. For example, we have not focused on or had the tools to examine the rest of the brain. What does the health of the rest of the brain tell us about what a person can or cannot do, and how much a person might improve? There are many observations about the rest of the brain that are important and perhaps tell us that these areas are not as intact as we thought. They may have low blood flow or be less connected, and these states may be modifiable. This suggests that we should use every tool available to us to aid recovery, including behavioral treatments, neuromodulation, and variable treatment dosage Using all the techniques available to us will help us push the recovery curve higher and longer, including focus on connected speech, which in turn, helps improve life participation. Janet: That is, as I see it, the heart of LPAA: where does the person with aphasia want to go and what are the pathways that can be used to get there? Certainly, using every tool available to us is important in planning treatment.  Jessica: Yes indeed. A new avenue of investigation for us is remotely supervised tDCS. This project will help us understand both tDCS and remotely supervised behavioral and neuromodulation treatment delivered in the home.   Janet: The pandemic of 2020 has taught us many things, including the value of virtual treatment for individuals, including those who have aphasia. Your work in remotely administered tDCS fits nicely with this changing view of treatment delivery. Your work in aphasia also encompasses several person-centered efforts. Tell us about some of your translational research and clinical projects such as recognizing the efforts of caregivers, examining fidelity in assessment and treatment, creating an aphasia choir, and investigating treatment dosage. Let’s start with your interest in supporting caregivers, what have you discovered? Jessica: First I would say caregivers are grateful to be asked about themselves. They are used to answering questions about their family member and appreciate the focus turned on them. Second, they are tired and want to rest. Third, they are in need of information about how to provide care for someone else, and how to do self-care. We discovered other interesting themes such as depression, quality of life, and fatigue. Addressing these issues is important to life participation because as we all know, life participation is not just about the person with aphasia, it is about the unit in which the person with aphasia lives. Janet: You make excellent points, Jessica. Several years ago my colleagues published a paper asking caregivers what information they had and said they wanted. The data suggested there is a gap between what information we think is being given to caregivers, we as speech-language pathologists and other medical professionals, and what caregivers think they are being given. It is a gap that should be filled. Another area of interest to you is assessment and treatment fidelity. When treatments are modified, sometimes without a clear foundation, it becomes difficult to track if the treatment is being delivered in the same way and that a clinician is being internally consistent. Fidelity in both assessment and treatment is important in assuring the best possible outcome for a patient.  What would you like our listeners to know about your work in fidelity? Jessica: This line of research came about in an interesting way for me, from thinking about it for a grant proposal, leading a roundtable discussion, and now investigating more closely. One thing I would like listeners to know is that it is important when reading a report of clinical treatment research to read carefully to determine that the treatment was carried out with a high degree of fidelity. If it was, then the stud is more likely to be replicated and the results are more believable. Researchers should think about fidelity as they design an assessment or treatment study; adhere to principles of fidelity during the project; and report their fideladventureity results. Clinicians should know that the manuals and operational steps available are important for interpretation. The example I sometimes give is that if one wants to use the results of an assessment procedure, for example to compare to the population listed in the assessment manual, then the assessment should be given exactly as described in the manual. If one has to off script, which certainly happens in a clinical environment, one must make note of those changes and consider that when interpreting the assessment results. The other note I want to make for clinicians is that if one finds oneself frequently making a change to an assessment or treatment protocol to accommodate a patient or situation, then the field needs to know. This is practice-based evidence (PBE), helping authors and researchers know how protocols should be updated or changed so that other people can implement it with greater effectiveness. Fidelity supports hearing more form clinicians through the PBE side instead of just the EBP side (Evidence-based practice). Janet: You are absolutely right, Jessica. Now let me ask you about your aphasia choir. Twelve years ago, I saw one of the first aphasia choirs begin at our site at California State University, East Bay. It was quite an adventure watching the unique choir members with aphasia navigate aphasia and music to become a unified choir. Two years ago, I gleefully (pun intended) watched your NeuroChoir post their first video – what a joy it was. To watch – all of you on the screen and singing away – impressive! Tell me about how your choir evolved and also how it continues to meet, especially in the midst of this pandemic? Jessica: I love our choir. There are so many aphasia choirs and it is great to hear that you were there for one of the first ones. Our choir began in 2016. I have a musical background which made me less fearful to begin and lead a choir than I might have been. We needed something more in our community or people with aphasia and I wanted to help provide that. We welcome people with any type of brain injury, not just aphasia, and although our membership waxes and wanes, we do have a core group of individuals who attend. During the pandemic choir has been a challenge. Singing together in a virtual environment does not work so well because of the audio and visual delay, and logistical issues such as people talking over each other. During our choir time we play musical games and other activities; everyone but the singer is muted; and we certainly long for the days we can meet in person again. Choir is different now, but there is still joy. Janet: In your video, I can see that in your faces and hear it in your voices. Talking with you today is a smorgasbord of mutually interesting topics and a fun discussion of translational research and clinical ideas, and how our worlds have intersected over the years. Moving to another topic of interest to both of us is treatment dosage – how to figure out how to deliver treatment in just the right amount so the result achieved is a positive outcome. That is, not giving too much treatment – more than is needed, or too little to effect an outcome. This is a tricky question with no easy answer. What insights have you learned in your work?    Jessica: This topic kind of hurts my heart, Janet, because we need more. More research into treatment, more treatment hours in a day, more treatment days in a week, better treatment schedules, remote treatment so patients can work at home, more inclusive founding mechanisms, more conversational partners and settings – we just need more. If one looks at the literature on animal learning, which I realize does not always directly apply to humans, we are nowhere near the number of repetitions or hours spent in treatment to produce those amazing results that have hacked into the neuroplastic principles. If we are really wanting to apply neuroplastic principles to research and clinical practice, which we should do, we have to find ways to facilitate this idea of more. At this point I look on this with sadness as there are so many obstacles to doing the “more” part of this. It will be critical in the coming years to get creative as a community to advocate for research into treatment dosage. Janet: I think you right about that. Add into your thinking that individuals are so variable that a dosage one might think appropriate for one person might not be so for another person. I can see how it hurts your heart and there is certainly a long way for us to go to figure out answers, however it is a worthwhile endeavor. Jessica, as you can tell form our conversation today, it has been so much fun to talk to you about our interests and your work. I am impressed with your work and dedication to serving people with aphasia. As we come to a close, what success stories or advice or lessons learned would you like share with clinicians working with people with aphasia using an LPAA model, across your clinical career, y our research career, or just across life in general. Jessica: That is a good one to end on. I would say first, there are lots of tools out there through Aphasia Access and other resources, so many that it may become overwhelming or difficult to navigate. When that happens, reach out – to people, organizations, and any source. The other issue is barriers to using the LPAA model. Sometimes one is in a place where there are barriers to implementing your ideas – I have certainly been there. Sometimes you have to move the barriers and sometimes move yourself to a place where those barriers don’t exist; moving professionally or ideologically. Sometimes however, one o the barriers might be yourself – are you getting in the way of implementing your ideas. I say that from experience as I had to get out of my own way to make progress. The last thing is to plead with clinicians to keep using your voice to advocate for people with aphasia. There are researchers who are clinically minded and they are wanting to listen to you and learn from you – your voice, your experience, your front line work with persons with aphasia, your barriers, and your victories in LPAA. Your voice and your viewpoint are valuable and influential, so please keep raising your voice because it has and will continue to influence the questions being asked in a positive way.   Janet: Thank you Jessica. That was a terrific response and an uplifting way to end our conversation today. It is clear that you have vision for how you would like to address the questions we have been discussing. I feel the enthusiasm coming across the airwaves and I hope our listeners will feel that as well and reach out to you if they have questions or comments. Thank you for your thoughtful responses to my sometimes-perplexing questions. This is Janet Patterson, speaking from the VA in Northern California, and along with Aphasia Access, I would like to thank my valuable guest, Jessica Richardson, for sharing her knowledge, wisdom and experience as a clinician, researcher, and advocate for people with aphasia.  You can find references, links and the Show Notes from today’s podcast interview with Dr. Jessica Richardson at Aphasia Access under the resource tab on the home page. On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials please go to www.aphasiaaccess.org.  If you have an idea for a future podcast topic email us at info@aphasiaaccess.org. Thank you again for your ongoing support of Aphasia Access.   Links  Publications: https://www.ncbi.nlm.nih.gov/myncbi/12WPcJZAUeOAR/bibliography/public/ Websites: https://shs.unm.edu/people/faculty/jessica-richardson.html http://www.jdrichslp.com/  YouTube:  https://www.youtube.com/channel/UCTQah61XG76Pt3PIKJvyB0A/playlists

Beth Mund gets to travel “at the speed of thought” with the incredibly fun Janet Ivey, from Janet’s Planet! With 12 regional Emmys, 5 Gracie Allen and numerous other awards, it’s evident that Janet Ivey is dedicated to producing quality entertainment that inspires, enlightens and entertains us all!  Frederick Beuchner’s quote starts our show and started everything for Janet: “You will always be called to the place where your deep gladness and the world’s deep hunger meet.” Little did Janet know that two profound teachers who showed her the planets and whispered in her ear, “science is not just for the boys” encouraged Janet to continue her love for science and to continue to be curious! Janet reminisces about all of her teachers- both the official teachers she’s had in school- and the students that inspire HER every day. You won’t want to miss every opportunity to listen to and learn from Janet in this episode!  BE SURE TO SHARE THIS EPISODE WITH A CURIOUS KID!  Here are just some of Beth’s favorite quotes from the show:  “People ask me all the time, what age group is this [Janet’s Planet] for?” They want to put it into a category. I answer, “yes!” - Science is for all ages.  We had Dr. Ken Carpenter on, and it was the best presentation, his amazing mission, his work with Dr. Carl Sagan, he tears up when he talks about Hubble sharing with these kids- then, my 7 year old from New Jersey named Lucas- he asked “Have you ever been to New Jersey?” I’m a firm believer in waiting for the genius to happen! After the uhming and ahing that seemed to be going on FOREVER- then he asks, “are you disappointed that Hubble never got another chance to get worked on after the last 10 years when it was serviced?” Brilliant! He’s talking about the Hubble being serviced 10 years ago! WE HAVE TO GIVE KIDS THE SPACE TO GET TO THAT GOOD QUESTION.  – Janet Ivey from the Casual Space Podcast  “If there was anything I could offer to educators or grown-ups with little ones- whether they are 5 or 19 or 50something, Sometimes it takes us a while to say what we feel, and what we are curious about, and it’s about giving people the space to do that.”   Where to find Janet’s work:  http://www.janetsplanet.com  About Janet and Explore Mars: https://www.exploremars.org/leader/janet-ivey/  Janet Ivey, President, of Explore Mars, Inc., and Creator and CEO of the award winning Janet’s Planet is committed to enriching the lives of children via education and live performances, TV, and online programming. With over 27 years in the children’s edutainment and space science outreach sector, Janet has captivated Nashville and beyond with her work. Her first Tedx Talk was in 2014 entitled, AWE,(Art, Wonder and Experiential) Inspired Science, her second Tedx Talk will happen May 3rd, at the Weiss School, entitled, “How To Inhabit Your Very Own Planet, #PlanetYou.” She has received 12 Regional Emmys, five Gracie Allen Awards, for her children’s series Janet’s Planet that airs on 140+ public television stations nationwide. Most recently Janet joined the Board of Directors for Explore Mars, she is an active NASA JPL Solar System Ambassador, on the Board of Governors for the National Space Society, the Educational Director of the Midsouth Chapter of NATAS, (National Academy of Television Arts and Sciences) recipient of the New World’s Institute’s inaugural Permission to Dream Award in 2016 and has won a STEM-FLORIDA Award for “Exploring Microgravity,” an educational video about gravity and microgravity, she wrote and produced for Space Florida. Janet’s Planet is a dynamic and fast-paced series is geared to 5-10 year olds and focuses on science, space, history and exploration. The short form series can be seen also on streaming sites, YouTube, BatteryPop, Club Jelly Telly and HighBrow in the UK. Her mission is simple, amplify the love of space, science and exploration and to encourage this generation that MARS is theirs.

Janet Kimmel is a certified personal trainer specializing in core and pelvic floor related concerns. This is a very under-served area in fitness and hushed subject of conversation. Janet believes that with the right information and exercise application, core and pelvic floor concerns should not be stopping anyone from enjoying an active lifestyle. In this interview, Kim asks Janet: You were an actor who ended up in the fitness industry. Can you share how that came about? Who are your clients? What do you hear midlife women say a lot? What's a prolapse? When does it flare up? Does it only affect midlife women? What do you do to help and how does it fix these issues? If someone can't visit your studio, what tips can you give them to do? To learn more about Janet, visit her website: https://www.alignmethod.ca

She’s spoken at the Women’s March on Washington, hosted a show for MSNBC, edited for Allure and Marie Claire, and written a New York Times bestselling memoir – and that’s not even half of the revolutionary work that trans writer and activist Janet Mock has done in her young career. In this episode, we talk with Janet about the writing process for her latest memoir “Surpassing Certainty,” the strong history and community of trans people in her native Hawaii, why the term “passing” is problematic for her, and why we should complicate our language when we use the word “woman”. For those of you who don’t know Janet: You’re about to become fans! Find Janet’s books, podcast (Never Before), and speaking events at www.janetmock.com. And follow Janet on Twitter!: @janetmock We’re going on break for TWO WEEKS! Kamau and Hari are going to miss you. So listen to their standup, read their books, watch them on CNN, and find them in person at http://www.wkamaubell.com/ and http://www.harikondabolu.com/. Thanks, and be back soon!

'Hear English' is a blog that provides podcasts and transcripts to help people learn English, find us at http://hearenglishhere.blogspot.com/.Free image courtesy of 'stockfreeimages.com'The Water Cooler (Slow)Too slow? Try the faster version in the next post. They may look like busy professionals, but the staff at Colourful Solutions Ltd (Colsol), aren’t always as serious or hardworking as they appear, and we find out what mischief they’ve been up to as they talk around the water cooler.Click above to listen.  You can get the mp3. here.Episode 5 - Root Vegetable Crisps (Slow) Too slow? Try the faster version in the next post. Featuring the vocal talents of Sophie Iafrate (Susan).  (Free sound effects courtesy of 'Soundjay.com'), Susan: Hey Keith, could you do me a favour?  I’ve got to photocopy this handout for a presentation with a potential client and they’re going to be here in five minutes and I’ve not arranged the meeting room.   Could you set up the projector and arrange some sandwiches nicely on plates, make sure there’s a jug of something to drink and stick the crisps in a bowl?Keith: No problem Susan, you know I’m always happy to help!  Which meeting room is it?Susan: Meeting room 2, you know, the one with the strange smell.  Great, thanks a bunch Keith, I owe you one.… later …Susan: They’re here!  Thanks so much for sorting out the room Keith.Keith (with mouth full): Glad I could be of assistance.Susan: And I suppose you earned the crisps you’re eating … wait a second … You greedy thing, you’ve eaten all the crisps in the bowl. Keith (still with mouth full): Sorry, but they’re my favourite flavour.  I couldn’t resist.Susan: You aren’t half annoying sometimes Keith.Keith: I said I’m sorry, but it’s your own fault really, if you got flavours I didn’t like then I wouldn’t be tempted.Susan: Next time, that’s exactly what I’ll do.  You don’t like those root vegetable crisps do you?Keith: Oh, with beetroot and carrot?  No, that stuff’s not for me, I like my crisps to be made of potato.Susan: Then from now on, I’ll get them instead.… later …Keith: Hi Janet, how did Susan’s presentation go?Janet: It went really well, they liked what she showed them and they’ve just emailed to say they want to commission us for the job. Keith: Fantastic, so they weren’t put off by the strange smell?Janet: Nope … but they were impressed with how well arranged everything was, and Susan tells me that you set up the meeting room, so thank you for that.  In fact, there’s another meeting to finalise a few details at 5.  Would you be able to set the room up again?Keith: Yeah, of course.… later …Susan: Thanks Keith, the room looks great!Keith: You’re welcome.Susan: Right Janet, I think we’re ready.Janet: Not quite, I filled up the bowl in the middle of the table, but for some reason it’s empty again.Susan: Oh Keith, I can’t believe you ate the root-vegetable crisps…you don’t even like them.Janet: You mean…you ate everything in that bowl?Keith: Err, yeah, I’m sorry, it was a bad joke.  I’ll get some more root-vegetable crisps from the canteen for you right away.Janet: Keith, to refill the bowl, you don’t need to go to the kitchen, you need to go to the stock cupboard, and then maybe you should go home early via the doctors.  The bowl wasn’t full of root-vegetable crisps.  Because of the strange smell, I had filled it with pot-pourri.

'Hear English' is a blog that provides podcasts and transcripts to help people learn English, find us at http://hearenglishhere.blogspot.com/.Free image courtesy of 'stockfreeimages.com'The Water Cooler (Fast)Too fast? Try the slower version in the previous post. They may look like busy professionals, but the staff at Colourful Solutions Ltd (Colsol), aren’t always as serious or hardworking as they appear, and we find out what mischief they’ve been up to as they talk around the water cooler.Click above to listen.  You can get the mp3. here. Episode 5 - Root Vegetable Crisps (Fast) Too fast? Try the slower version in the previous post. Featuring the vocal talents of Sophie Iafrate (Susan).  (Free sound effects courtesy of 'Soundjay.com'),  Susan: Hey Keith, could you do me a favour?  I’ve got to photocopy this handout for a presentation with a potential client and they’re going to be here in five minutes and I’ve not arranged the meeting room.   Could you set up the projector and arrange some sandwiches nicely on plates, make sure there’s a jug of something to drink and stick the crisps in a bowl? Keith: No problem Susan, you know I’m always happy to help!  Which meeting room is it?Susan: Meeting room 2, you know, the one with the strange smell.  Great, thanks a bunch Keith, I owe you one.… later …Susan: They’re here!  Thanks so much for sorting out the room Keith.Keith (with mouth full): Glad I could be of assistance.Susan: And I suppose you earned the crisps you’re eating … wait a second … You greedy thing, you’ve eaten all the crisps in the bowl.  Keith (still with mouth full): Sorry, but they’re my favourite flavour.  I couldn’t resist.Susan: You aren’t half annoying sometimes Keith.Keith: I said I’m sorry, but it’s your own fault really, if you got flavours I didn’t like then I wouldn’t be tempted. Susan: Next time, that’s exactly what I’ll do.  You don’t like those root vegetable crisps do you?Keith: Oh, with beetroot and carrot?  No, that stuff’s not for me, I like my crisps to be made of potato.Susan: Then from now on, I’ll get them instead.… later …Keith: Hi Janet, how did Susan’s presentation go?Janet: It went really well, they liked what she showed them and they’ve just emailed to say they want to commission us for the job.  Keith: Fantastic, so they weren’t put off by the strange smell?Janet: Nope … but they were impressed with how well arranged everything was, and Susan tells me that you set up the meeting room, so thank you for that.  In fact, there’s another meeting to finalise a few details at 5.  Would you be able to set the room up again?Keith: Yeah, of course.… later …Susan: Thanks Keith, the room looks great! Keith: You’re welcome.Susan: Right Janet, I think we’re ready.Janet: Not quite, I filled up the bowl in the middle of the table, but for some reason it’s empty again.Susan: Oh Keith, I can’t believe you ate the root-vegetable crisps…you don’t even like them.Janet: You mean…you ate everything in that bowl?Keith: Err, yeah, I’m sorry, it was a bad joke.  I’ll get some more root-vegetable crisps from the canteen for you right away.Janet: Keith, to refill the bowl, you don’t need to go to the kitchen, you need to go to the stock cupboard, and then maybe you should go home early via the doctors.  The bowl wasn’t full of root-vegetable crisps.  Because of the strange smell, I had filled it with pot-pourri.