Sep 20, 2021
Jerry Hoepner, a faculty member in the department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire, interviewed six very bright students about their experiences at the Aphasia Access Leadership Summit. Today, Dr. Hoepner is joined by Robin Pollens, from Western Michigan University to discuss their contributions and chat about student learning. So, get ready to kick back and enjoy these fabulous conversations.
As the title implies, we heard from six students from Florida, Michigan, Wisconsin, and California. They all attended the 2021 Aphasia Access Leadership Summit. Today, they will share a bit about their experiences and highlight why it is so important to engage students in Aphasia Access and teach them about the LPAA. I am joined by Robin Pollens, who many of you know as a wise teacher and mentor. She shares her perspectives on teaching and mentoring LPAA and some of the lessons she has learned from students. You’re in for a treat!
Abby Joski is a first-year graduate student at the University of Wisconsin – Eau Claire who served as a student ambassador at the Leadership Summit. She has served as a student clinician for the Blugold Aphasia Group and Chippewa Valley Aphasia Group.
Summer Marske is an undergraduate student, senior, at the University of Wisconsin – Eau Claire who also served as a student ambassador at the Leadership Summit. She helped compose many of the daily summaries at the summit.
Raveena Birdie is now a clinical fellow, formerly a graduate student at Cal State East Bay under the mentorship of Ellen Bernstein-Ellis. She and her peers gave a wonderful presentation on aphasia choirs and were awarded the inaugural Aphasia Access Student Presentation Award.
Nick Malendowski is a student at Central Michigan University who participated in the Strong Story Lab and collaborated on a project with Dr. Katie Strong and Dr. Jackie Hinkley on stakeholder engaged research.
Brandon Nguy is an undergraduate student at the University of Pittsburgh, mentored by Dr. Will Evans. Brandon gave a wonderful presentation on a scoping review of gender representation in aphasia research at the summit.
Clarisse El Khouri Faieta is a graduate student at Nova Southeastern University. She collaborated on a project with Dr. Jackie Hinkley and Dr. Katie Strong within the Project Bridge program on stakeholder engaged research.
We know that there are many more student voices and we value each and every one of them. For now, listen in on these fantastic students and you can refer to interview transcripts to see their wonderful definitions of the LPAA highlighted in yellow within the transcript.
Robin Pollens’ segment
Jerry Hoepner: Hi Robin, so good to see you today.
Robin Pollens: Good to see you today, Jerry.
Jerry: Yeah, happy to have a conversation about student learning with you, as I know, that's something that's really important to you and your previous work has certainly inspired me in terms of mentoring, students and teaching students so, really, a pleasure to have this conversation.
Robin: Thank you, I’m glad to be here.
Jerry: So, I proposed a couple of big questions to you about our student experiences at the aphasia access leadership summit and thought, maybe that would be a good way to start you know the fall semester talking about student learning and mentoring students in the LPAA. So, I’m going to start you with the first big question which is from your perspective, why is it so important to teach and mentor students in the LPAA approach?
Robin: I think a couple reasons. I think this is just the direction our field, thankfully, has moved into, not just for aphasia but, hopefully in general, where we no longer are thinking about what we're doing is just changing. Their speech in the room that they're in with us, but they were really thinking about it more holistically and how it impacts their life and students, I think they appreciate taking that approach once they get the hang of it, and I find that if we give them the tools to help them think about the bigger picture of somebody communication they get it right away, and if we start them out in the beginning of their clinical skill development. Thinking about people's impairment level and their participation level and their barriers in their environments, the wonderful World Health Organization, I see a framework that is thankfully part of our field now. If we model there for them right in the beginning and structure how they're thinking about meeting new clients, they can do it in a way. I feel like we ask a lot of the students because they're brand new and they're having to just think about how you say something to them, and you try to have them do something back and you write down what they're doing, and you keep track of a goal. I mean it's a lot of nitty gritty part of just doing therapy and yet we're asking them at the same time to think of a bigger picture.
Jerry: I’m so glad you started with that because I think you're right, it's easy to get kind of hung up on the building blocks of what speech therapy is right with. You've got to understand what the person's impairments are and then you got to understand what the assessment tools are and how to deliver those and then think about the intervention pieces and thinking more broadly, from the start is a good place to begin right as, or I would say begin with the end in mind right, so thinking of that bigger picture, so I bet you have some personal experiences of how kind of that plays out in a in a learning context.
Robin: Yeah, I have. I have several semesters that the end of the time had the students write a reflection thinking about the therapy that they just did and I framed it, I went back to the original LPAA statement back in 2000 where they were talking about how the clinician role is expanded beyond that of being a teacher or a therapist but they're also being a communication partner. To help them engage in conversation about their goals and their concerns as one thing, and the second new role is being a culture problem solver. So, if I provide that framework, these are the two different kinds of roles, you may have done, think about what you did this semester, how does it fit in? I find that the students get it that they're able to write down ways that their involvement in conversational interaction led to meaningful ideas, as well as how they ended up being a coach and a problem solver. It's interesting how we have to give them permission, in a way to just have conversation that that's an important thing it's not getting away from therapy that it's actually a part of therapy, so I'll just give you one example, one person was saying that when they were talking throughout the Semester. She was discussing all the barriers that the stroke could place and her ability to physically do her activities to do her work to do her, cooking things like that, and her concerns about coven and how that was impacting her ability to be with your family. And the same person later in terms of the problem solving and the coaching she said that the person was having trouble writing checks, and so it led to a new therapy goal of having a developing a format, where she would be able to write checks so from the conversation of meaningful life exchange comes real participation goals. And again, I believe that if we frame this from the beginning that this is what we're ever intention, I have found that the students are able to realize that that's actually what they're doing.
Jerry: But that's just a really elegant eloquent way of connecting the importance of real conversation and investing time in that not thinking it's something different than therapy, but as a part of therapy and as a really crucial part of therapy to get at things that matter to that individual your examples were just spot on with if you approach that in a traditional manner, you might never have known those things even happened to that individual correct.
Robin: Now I’d like to add one more thing on this part. Jerry, I think, using the life participation approach to a facial or any therapy makes for more meaningful work life. I think that the students, all of us if we're engaging this kind of work, we see the impact of our efforts, we receive from the clients from the patients from the people with aphasia we receive from them. The kind of relationship centered care interaction and it makes it so that I can then say to the students see how what a wonderful field you're engaging in it's so meaningful and they do by the end often. I'm sure all students do whether you're teaching for LPAA, our students at the end kind of feel sad or some connection when they're finishing up with their clients, I mean we all do, but I think if you have this kind of approach it adds to the possibility that that will happen for the students, and I like to model that awesome.
Jerry: Yeah, such an important piece, and I think it does make it, you know, make therapy more rewarding and invaluable to us as well, makes our everyday work more rewarding just doing something that has a lasting effect on that person's life. I remember my very first. From well my clinical externship supervisor always asked me at the end of each day to reflect on what I did that really made a difference in that person's life, and it was a hard thing to do, initially when you're like I spent 15 minutes with this person feeding them, I know. But it's a really important self-check to think about what you're doing, is it really making a meaningful impact and all of those things can, if you set them up the right way and if you go into that intentionally as you're describing.
Robin: I like that Jerry, never thought of it in those terms, but I’ve carried that with me to now.
Jerry: But it's certainly been a lesson for me, and we've spoken to my mentor in a previous podcast, Mary Beth Clark, and that's always an impression that she has left on me to be sure. So, additional thoughts that you have about the importance of teaching LPAA or should we talk a little bit about experiential learning and what students gain from that type of a of an approach.
Robin: Yeah, I think we can move on to the other topic. LPAA, what we haven't spoken about is the importance in the impact for the clients for people but that's not what this is all about so yeah, I think we could talk a little bit about that other topic about the hands-on experience. And I know there's all different kinds of hands-on experiences, ranging from full immersion, your wonderful aphasia camps that you do, I mean how much more hands on full can you have done that but there's lots of ways in between, also where the person has some awareness and understanding of how they aphasia is impacting them in their daily life. I was just reading back when I knew I was going to be speaking with you today one of the students’ reflections and this was a student that. Clearly, had understood LPAA and had worked with a young man who's in his 30s have a stroke and aphasia clearly knew that the students wanted to return to work. And so, the therapy goals were very directed at work related skills very, very clearly. It wasn't until the very last week we had an a day which was like a semester day and all the clients were to go there and all the students and each of the groups had something the newsletter group printed the newsletter in the music group led some singing and it was you know, an interactive day and this student wrote in her reflection that she realized that that the client was off to the side of the room by himself and she went and spoke with them and found out he had anxiety about being with other people. And what she realized is even though she knew about her client’s ability to interact based on his communication disorder. And she knew about his absence of physical barriers to participating she had no idea that he had some other emotional barriers that were limiting his ability to participate, so it really wasn't until she had an opportunity to see him in an actual hands on type of an activity that she appreciated the fuller sense of what was challenging to him and had a sense of she had known this there might have been an additional focus of a therapy. But still, for her we're thinking about students, it was a valuable lesson oh. What can happen in us with people in in a natural type of environment.
Jerry: Yeah, I think that emphasizes the reason that we do things in in natural environments and environments that that person needs to communicate in because those are one of those moments, you could never predict come up and you have the opportunity to address them. I mean that's a big lesson that we've had at aphasia camp, you know when you're seeing someone from 6:30 in the morning till 10:30 at night there's a lot of things that happen, and you know you. Experiences you wouldn't have right walking to the restroom with someone or you know after they're exhausted after an activity right Those are the kinds of things that you wouldn't experience, unless you had that opportunity to interact with them, and in that authentic context so yeah so important. Were there other thoughts, you were thinking about in terms of hands-on learning.
Robin: I was, I was thinking of an example of again because everybody all different university programs don't have the opportunity to do some more extensive types of in person hands on but many people are doing in groups, and so I was thinking back to a poster that several of students did for our state conference when I hear them think about, they lead living with aphasia groups couple different kinds. One focused on the clients might have to know more about aphasia the other one had to do with how it is impacting their life, what happens when they go the store what happens with their family so different kinds of living with aphasia groups. And then afterwards I had them, I asked them a question kind of like Jerry what you asked to your students in this I after the face to access it was a pretty open-ended question, I just asked them how to facilitating a living with aphasia group impact you. And they answered. And I went and looked up somebody your Yo and Yah published an analysis of learning outcomes from service-learning experiences. And came up with three themes and I realized wow I think having them lead the living with aphasia group was like a service learning. With this paradigm, and so some of the things that came up with one of the themes, has to do with cognitive development. And so, he asked the student said they learned how to use alternative modalities and learn how to teach word fangs strategies so Those are the things you'd hope they learn from any speech communication to ask. But they also said, one person said it helped me learn how to effectively navigate difficult emotions. And then, one of the other themes is understanding social issues and the student wrote this increase my sense of advocacy seeing how strong and determine these people are and how hard they work to communicate was incredible. And the third thing that you're going you talked about was personal insight and so they said things like wow some of my problems seem insignificant in comparison to what my clients deal with day to day, so there were all these layers of understanding and insight that the students learned other than the speech therapy tasks skills. And I think that um in terms of growing student clinicians I think that are those are helpful.
Jerry: Absolutely and those are the same kinds of outcomes that we're seeing with camps, I think, whenever you have that opportunity to have that authentic and on experience in groups are a great example of where to get that to learn about the lived experience to learn about. Using strategies directly within a real context and so forth. yeah, that's the place to do it and it's interesting how consistent those outcomes are across those types of experiences so really powerful.
So, Robin you've been so good as to listen to some segments from students who participated in this past year's Aphasia Access Leadership Summit and you got to hear some of the wonderful things that those students shared in terms of their understanding of the LPAA perspective and the projects that they were involved in that they presented at the summit. So, I know I’m really anxious to listen to those students’ stories and to kind of hear some of your thoughts along the way. My big takeaway and listening to these students is that the future is bright, their understanding of the importance of the LPAA framework is really solid. And their definitions could be right there in any textbook.
Robin: I think you should gather up those definitions and put them somewhere, I think that was great at how to take this big concept and place it into a sentence.
Jerry: Yeah, they sure did a remarkable job, so let's spend a little bit of time listening to them and enjoying the next generation of students.
Robin: Okay, thank you, yep.
Abby Joski's segment
Jerry: Okay well hi, Abby. Thank you for joining us for this conversation really excited to talk with you about the Aphasia Access Leadership Summit and your experiences there.
Abby Joski: Yeah absolutely. Thanks for asking me to join.
Jerry: Absolutely. So, I thought I’d start with just finding out how you would describe the life participation approach.
Abby Joski: Yeah, so this is- I took an aphasia course this past semester, and that was the first I’ve ever heard about it and I’m a huge fan of it personally, because it does take all the different aspects of the person into consideration when doing an aphasia intervention, instead of looking at just their language and how to fix that. It's also keeping in mind the things they enjoy doing their identity, their family members and it incorporates it all into a really holistic approach to aphasia.
Jerry: Terrific so tell me a little bit about how you got involved in the Leadership Summit?
Abby Joski: Yeah well, I’m really glad I did. I’m a GA through our CSD department, and so I got an email from I’m pretty sure you Dr. Hoepner that you're asking for students to volunteer to be ambassadors and at first, I was really kind of hesitant to do it because it sounded like such a big deal, it's such as huge Conference, and it was intimidating to a student but getting into it and learning about like the the Board of Directors and all the people putting it together. They were so welcoming and so nice and so they really took us students in and made sure that while we were volunteering to help, we also got a lot of really great experiences out of it.
Jerry: Oh, that's great to hear, can you share a little bit about your experience?
Abby Joski: Yeah definitely. So, my biggest role was I would attend the sessions and write in a in an friendly way. A newsletter for the day to catch up, maybe people who missed the sessions, or who want to kind of jog their memory about what that particular segment was about.
So I really didn't have a lot of interactions with the Community Members with aphasia as much as I did with the people organizing the event but still the communication was really great and while I was watching. These different sessions and presentations just their interactions with the Community and the questions that came up from the people with aphasia, it was a really great community that I got to observe and be a little bit of a part of.
Jerry: Terrific. Do you have a favorite moment from the summit?
Abby Joski: I was there for the closing part. Oh hang on a sec, I got to remember her name. Can pause for a second here? Who is the woman oh Audrey Holland, yes. So my favorite part of the whole conference is at the very end where Audrey Holland came on to give some final remarks. Really send us out with some words of wisdom some inspirations and she really just opened the floor to questions. She's like, “Well what kind of questions do you have? Let's hear them.” And so, even then she really wanted to make sure that she wasn't lecturing as she wanted the Community to be a huge part of even this ending wrapping everything up making sure there are no final questions. So, I think that really speaks to how interactive and how supportive this whole process organization and community is.
Jerry: Terrific, I couldn't agree more. Was there something in specific or something specific that you learned that you'll use in the future?
Abby Joski: Yeah, what I know is really reiterated by so many of the sessions is that people with aphasia they are experts at aphasia at their life and we can't ignore that in being SLPs. So, whether it's the intervention process or assessment, they need to be a part of that and so collaborating with them, their family, and really making those goals functional to them needs to be the focus of everything we do.
Jerry: Absolutely, those are great lessons to take away for sure. Why should other students get involved in Aphasia Access?
Abby Joski: Well, I think, with Aphasia Access as a student there's so many different ways you can be involved in it, so you don't need to be just writing newsletters you can also be the person directing people to where they need to be. You know this year was a little bit different over Zoom, but as students, we do have the tech skills that we can bring to the table. But yeah, with students so much of what we learn is out of textbooks in class and very few of us have those real life opportunities to apply our skills and our knowledge, so I think it's just another opportunity where we can get involved and meet people with aphasia so that can just better give us tools and experiences and knowledge to help them and grow.
Jerry: Yeah, that's terrific. Anything else you want to share about your experience?
Abby Joski: Just some more students to do it.
Jerry: Okay terrific. Well, thank you again Abby for having this conversation and hope to see you at another Aphasia Access in the future.
Abby Joski: Yeah, absolutely. That'd be great.
Abby Joski: Yeah absolutely. I do really appreciate it, Dr. Hoepner. You bring this like opportunity to students’ attention and really bring us in and making us feel welcome. Even looking back at that very first meeting, where it was you, and like the big names of this conference I didn't feel out of place, and so I think that just speaks to how nice and welcoming everyone knows
Jerry: That's terrific. Yeah, I’m always thrilled to have these opportunities. When I was just a new clinician and just getting started I had great mentors who connected with me with people like Audrey Holland and Roberta Elman and I just kind of thought it was something that everyone got to do so, I think it's just a great way to kind of level the playing field and see that you know, these people are regular human beings, like all of us, and we can approach them and we can collaborate with them all of those things. So glad I could share the opportunity.
Abby Joski: Yeah, and if it's back in person next year I would love to make it.
Jerry: Very cool.
Raveena Birdee's segment
Jerry Hoepner: Hi, Raveena. Good to see you today.
Raveena Birdee: Hi, Dr. Hoepner, very good to see you. Thank you for having me.
Jerry Hoepner: You are welcome. Nice to see you again after the Aphasia Access Leadership Summit. I'm happy to talk to you today about your experience at the Summit I’m wondering if we can start out by me asking you how you would describe the Life Participation Approach.
Raveena Birdee: Excellent question and something that over my years as a graduate student and now as a clinical fellow I’ve thought a lot about and I think to me life participation approach, excuse me, is about making sure that a person with aphasia or someone with any kind of communication deficit feels like they can be connected to the things that they enjoy doing. You know if someone really enjoys gardening and they had a gardening club. How can we as speech therapists facilitate that for them, how can we be that bridge of supportive communication for them. So, to me, I think participate participation approach is about just making sure that the clients that we work with have access to the things that they enjoy doing. It's a huge change in we're lucky enough to be a support system for them and also teach their communication partners how best to communicate with them, I feel like that's such a huge part of what we do, yeah.
Jerry Hoepner: I think that's a great point. That's a terrific description and I know there's a lot of people in Aphasia Access that will be excited to hear these fabulous definitions that students are providing and no longer a student now clinical fellow so I'm excited to talk about your experience at the Aphasia Access Leadership Summit.
Can you tell us a little bit about how you got involved? I know you did a presentation and I know that went pretty well but tell us your story.
Raveena Birdee: Absolutely it did go very well and I think the Committee and I think everybody who made it possible, it was such a wonderful opportunity for us as a team. I was a graduate student at CSU East Bay and my mentor Ellen Bernstein Ellis, she told us about this opportunity and us being the aphasia tones choir team it's easy to East Bay. And she said, you know there's this really wonderful opportunity with aphasia access and we had heard of Aphasia Access, I think we are all you know, we really had our head in the books. I was, I think, studying for my comprehensive exams at the time. And so we thought, “Sure like we'll try we'll put something together that we're proud of” and that we feel like can be of help and if they want the student perspective we're more than happy to share, and you know meet some people and see what we can try to do and when we got accepted it was like such a party for us wow I didn't think we could do this, so it felt like just one really exciting step after the other yeah.
Jerry Hoepner: That's terrific, can you tell us a little tidbit or kind of elevator pitch, excuse me, about your presentation at the summit.
Raveena Birdee: Absolutely, and so I previously was something called Co-Director for the Aphasia Tones, which is a choir and aphasia choir for people with aphasia and this started at CSU East Bay about 11 years ago now, so it's acquired with a long-standing history and usually, you know, pre-covid, we would meet in person. We had about 25 to 30 members, and this is a part of a larger aphasia treatment program at CSU East Bay, so the choir is a small part of it but it was one of our most loved programs. It was so exciting to be a part of it was just wonderful to be in the same room together and making music and providing those communications supports and really making our Members feel seen and feel a part of a community and when covid hit, you know, for everyone life really just stopped and the choir team, which consisted of me and then my teammates Lucy and Megan Cleopatra and Christy, we thought how can we keep this going online? How can we figure this out via Zoom? And so, the presentation was all about us figuring out how to do an online aphasia choir and it was very tricky and we ended up observing a virtual connections choir session and that really helped guide us and also shout out to Dr. Tom Sather for giving us some guidelines. And so, we really took some of those guidelines and then we transitioned Aphasia Tones online and the presentation. I don't want to get too technical about it now I suppose, but it was very much about what are the technical tips and tricks to run and aphasia choir what are our core purposes, what are the principles that guide us? Is it learning something new, is it communities that engagement and it ended up being about all of it it's all important and the connection, I think the most important thing that connection between us and our Members with each other. The last thing I’ll say about it is that and it was such a wonderful experience to do Aphasia Tones online, because I feel like our members and people with aphasia are already potentially socially isolated because of aphasia and because of those barriers to communication, and so it was an honor for us to be able to bring together our little community in a time of extreme social isolation during the covid pandemic and I think that was one of the best experiences of my whole graduate career just to have that and then present at Aphasia Access. It was wonderful.
Jerry Hoepner: That's terrific. It's clear that you were really intentional and thoughtful about the process and that you had great mentorship like you said and that resulted in you receiving you and your team receiving the first Aphasia Access Student Award which was really exciting to be a part of so kudos to you and your team. I did get to see you in action a little bit as I joined one of your group meetings, one of your patient group meetings, and that was fabulous so it's clear you have a lot of investment in this.
Raveena Birdee: Thank you, and I mean truly thank you to Aphasia Access. Thank you to you for that wonderful award we had no idea during the Leadership Summit, we had no idea what was happening in regards to the award and we were all just so grateful and so thankful, and I do want to be or not want to be necessarily, but I do want to say thank you for coming to Aphasia Tones rehearsal and I would like to give Dr. Hoepner a huge shout out because during the service this is still in the beginning stages of when we were still really perfecting the process and we were doing something called a call and response, and my group members, we had broken out into a small breakout room and I, I asked my group members if any of them wanted to sing a particular stanza and I think they were all feeling shy, and it was a new format, and so I called on Dr. Hoepner to sing a little bit of a song in front of you know 10 or so people and he did it so well, and I’ll never forget that moment. It was so special. So, thank you, Dr. Hoepner.
Jerry Hoepner: Absolutely, you're welcome. Always willing to help out, but the listeners couldn't hear that I was laughing because I muted my MIC for just a moment but yeah that was that was a good moment for sure. Do you have a favorite moment from the Aphasia Access Leadership Summit you want to share? It might have already been talked about but go ahead.
Raveena Birdee: That is a good question because the good thing about the Summit is that it was a week long and I was just beginning my Clinical Fellowship. I’m currently a clinical fellow in the Oakland School District here in California and so I was working full time and then kind of popping into the Summit as I could but what was really nice about is that everything's recorded, and so I found myself when I had some more time to go back and listen to the prerecorded session or go back and look at the posters because I found that while I was really enjoying kind of popping into different breakout rooms and seeing and hearing people talk about their field and the amazing minds that were at this conference, you know as a student you hear these names and then being able to see them talk about their craft is so wonderful but I think my favorite part was hearing oh goodness it was Dr. Ellis and he was talking he was speaking about disparities in health care and, as a young person of color in this SLP field, that was something that was really, really interesting to me and it's a talk that I’ve kind of gone back to a couple of times on the recording on YouTube just to try to wrap my head around it. That was a really, really cool really cool talk.
Jerry Hoepner: I’ve gotta agree and I, like you, I’ve gone back to that a couple of times, in addition to the live stream, because just such an important and powerful presentation so yeah completely agree. So, in addition to that, what's something from the summit that you learn that you'll use in your future?
Raveena Birdee: Oh, goodness let haven't died um it's such a good experience, I mean I think it's I’m in a kind of an interesting place right now, because I really thought I would be working with adults in that population and working with people with aphasia for my clinical fellow fellowship, excuse me, but you know I ended up going in a different direction, and so now and working with elementary school children it's really interesting to me to see how the- trying to think of how to phrase this - but the principles that we use for different kinds of therapy apply everywhere. Yeah a lot of times I end up speaking a lot to parents about how to support their child's communication and it's not just direct therapy with my client but it's therapy and consultation and materials and assessing the environment and figuring out how to best connect my client with the things that are enjoyable to them, and I feel like that's life participation in a nutshell, of how do we, how do we make this functional, how do we make this work so that they're able- my client can feel comfortable and do the things that they want to do.
Jerry Hoepner: Raveena I’m so glad you said that and just a great opportunity, as we think about you know, the role of Aphasia Access in the life participation approach for other students and for other professionals, for that matter, it is a very universal principle and you can draw upon its kind of regardless of what setting you're in.
Those are the priorities of helping another human being, through difficult time so really well said, and a great connection. So, with that in mind, that's a perfect segue to my final question for you, which is why should other students get to get involved in Aphasia Access?
Raveena Birdee: Oh, I have lots of reasons why there are so many resources at Aphasia Access and even if you think that you'll be only working with children are only working with a specific population. Our field is so huge that there are so many different ways to interact with our clients like you were just saying and the other thing I think is so important is that, as a student we hear all of these names, we hear about these publications, we hear about people at other universities you know, doing research which is so important in our field and making these publications and giving these talks, and you know, giving really great evidence based practice, and you know changing our field, and I feel like Aphasia Access does such a great job of putting these people together, and I feel like for a student to kind of see what is happening currently in the field and then where we can go and how we can also further the field, because I feel like sometimes our jobs can be a little bit isolating even though all we do is talk about communication and connecting with people, but I think it's important for us as speech pathologists to connect within our field as well and I would also like to shout up Elena Bernstein Ellis who she gifted me with a membership to Aphasia Access when I graduated. It was just the sweetest and kindest and you know just very, very sweet thing that she did, and I appreciate it every day because I get those emails from Aphasia Access and even if I don't have the time in one particular day to like really look at the email or really look at the events coming up, they’re in the back of my head and there's still something that I’m like, “Oh that's interesting I should look into that” and I feel like a long winded way of saying Aphasia Access is such a good way to keep on furthering ourselves in the field and not saying staying stagnant like there's so much out there and now we have the access to free dissipated is what I’m saying.
Jerry Hoepner: Well, what a what a great takeaway or takeaways I should say for students and I gotta agree Ellen is one of the kindest people out there, so really a good shout out there. It's been fun talking, anything else you want to share before we end our conversation today?
Raveena Birdee: Just that I am so grateful for this opportunity and I wanted to thank everybody at Aphasia Access and everyone who made the Leadership Summit possible it was again just such a great experience, one of the greatest experiences so far in my career and you know I want to speak for the Aphasia Tones as a team and say that we were all grateful for the opportunity and it was yeah it was just such a great experience and I highly encourage other students to get involved and see what's out there, I think sometimes as students, we feel like we just don't know enough yet, but these are the opportunities for us to learn to do it from such distinguished people like Dr. Hoepner. Never in a million years would I think I’d be sitting down with a one-on-one conversation with you. So, again just the opportunity is great you guys everyone really inspires us as students to keep learning and I think that's the biggest thing.
Jerry Hoepner: Well, the future is certainly looking bright with all of you new students and now professionals out there, so thank you again, Raveena, have a terrific day.
Raveena Birdee: Thank you, you too.
Summer Marske's segment
Jerry: Hi, Summer. How are you doing today?
Summer Marske: Good, how are you doing?
Jerry: I’m doing really well. I’m excited to talk about the Aphasia Access Leadership Summit and your experiences there.
Summer Marske: Yeah, happy to share.
Jerry: Say, I have a question for you. How would you describe the Life Participation Approach?
Summer Marske: So, the Life Participation Approach I kind of see it as kind of a way to help patients with aphasia get back to doing the things that they love and focusing on things that are meaningful and functional. So basically, prioritizing their life goals and maybe that means incorporating their family members or changing their environment, to help make that possible.
Jerry: That sounds terrific. That's a great description.
Jerry: So, can you tell me a little bit about how you got involved in the 2021 Aphasia Access Leadership Summit?
Summer Marske: Yeah, so I participated as a student Ambassador so basically what that means is I attended the presentations and then I collaborated with the other student ambassadors and we wrote newsletters after each session, which would be then later sent out the next day for the attendees to look through.
Jerry: Very cool and I know that people really appreciated those daily updates and recap so thank you for your yeah, thank you for your contributions there. Do you have like a favorite moment from the summit that you want to talk about.
Summer Marske: Yeah, so two things kind of come to mind, one of them was Gather Town, which was the virtual conventions ending and that was really cool to be a part of because I got to see and interact and watch different connections get formed between professionals from different parts of the world and I also really enjoyed the yoga session. I myself really like yoga so that was cool to hear from a stroke survivor and see how yoga played an important role in his post stroke aphasia recovery.
Jerry: Absolutely That was really cool to see that directly from him agreed and the whole team did a really remarkable job kind of walking through the yoga together. That was pretty helpful in the moment as well in the middle of a conference where we're sitting a lot, so that's terrific. So, what was something that you learned at the Summit that you will kind of take and use in your future?
Summer Marske: Yeah, one thing in particular that sticks out to me was the presentation on health care disparities and aphasia and all the different factors that go into stroke and aphasia outcomes. Having this knowledge will be useful in working as an SLP because I’ll be treating a variety of culturally and linguistically diverse patients, so knowing how to give them optimal services will be necessary.
Jerry: Yeah, I think that has to be one of the favorite talks from the week for me as well. Charles Ellis has so many insights into that and real practical thinking about how we approach that so agreed, I appreciate that as well. Just from your perspective, why should other students get involved in Aphasia Access?
Summer Marske: I think other students should get involved because this is a very unique experience to have the opportunity to hear from professionals all over the world and specializing on their areas of interest and different topics regarding aphasia.
Jerry: Yeah, agreed. What an opportunity to connect and kind of rub shoulders with some of the most brilliant minds, I think one of the great things I like about Aphasia Access is that everyone is so accessible and you know, no one is kind of at a different level where you can have a conversation with them. I think that is perfect for students to see this community of people all working towards the same goal so yeah, I really appreciate that as well. Mm hmm yeah anything else that you want to share in terms of your experience?
Summer Marske: I’m mostly just really grateful to have had this experience it's unlike anything that I’ve done before. So, I definitely will take all this knowledge with me into Grad school and when working as an SLP.
Jerry: That's terrific. Thank you again, Summer, for sharing and hope you'll make it to another Aphasia Access in the future.
Summer Marske: Thank you. Thank you for having me.
Jerry: You're welcome.
Brandon Nguy's segment
Jerry Hoepner: Hi, Brandon. How are you doing?
Nguy, Brandon: Good.
Jerry Hoepner: Good, nice to see you today.
Nguy, Brandon: Nice to see you, too.
Jerry Hoepner: Well, I’m really happy to follow up with you after the Aphasia Access Leadership Summit to learn a little bit about your experience. Before we get started talking about the Summit, can you just talk a little bit about how you would describe the life participation approach?
Nguy, Brandon: So for me, the life participation approach I would believe really wants to focus to help to improve the quality of life of people with aphasia right by helping improve the things that they want to improve in or they might be afraid to do because they may have aphasia and to really overall give them their independence back to live their lives again really.
Jerry Hoepner: Excellent that's a great description. Well terrific. Say Brandon, I know you did a presentation, a really nice presentation at the Summit, can you talk a little bit about how you got involved and maybe a little bit of a nutshell of your presentation?
Nguy, Brandon: Yeah sure. So last summer, I got a summer fellowship through my university and I was able to conduct my own research project during the summer, through the support of my fellow lab and research colleagues. And so, at the end, I really wanted to share this new information with others, I felt like it was really important and my colleagues recommended me to share it at a conference and they know that that Aphasia Access Leadership Summit this year really matched the theme of my study and then from there on yeah happened.
Jerry Hoepner: Terrific. Can you share a little bit of an elevator pitch about what your research was about?
Nguy, Brandon: Yeah sure. So, my study focused on issue of representation in the aphasia literature. And so, through a scoping review we extracted the demographic data of over 300 efficient articles from the last decade and we compared those particular data with the true demographics of stroke survivors. And so we found out that certain variables in aphasia literature are underreported such as race as like only roughly 30% of articles noted race in the first place and there were some demographic differences between the efficient literature and the general population who have aphasia, for instance, man and Caucasians were over represented. And females African Americans has been Latinos and Asians others were underrepresented. And so, overall, I know that the field of speech language pathology is emphasizing more diversity in students’ faculties, but I feel like we also need to put that same our focus into representation in research.
Jerry Hoepner: Oh, that's terrific. What a terrific nutshell version of that and what an important topic say, Brandon. I've got to ask, where are you in your academic program what level?
Nguy, Brandon: I’m currently in incoming senior.
Jerry Hoepner: That's terrific I really wanted to emphasize that to our listeners let them know you're an undergraduate student you just did a scoping review of 300 plus papers and came up with these really important findings that are relevant to the work that we do, day in and day out, as at least those of us who are in academics and research so wow Thank you so much, and what a terrific opportunity. I know you worked with Dr. Will Evans on that project and just want to emphasize how fabulous that is.
Nguy, Brandon: Welcome, thank you.
Jerry Hoepner: Okay, well, can you share a little bit about your other experiences outside of your presentation your experience kind of listening in and joining sessions at the Summit this year?
Nguy, Brandon: And so, though I guess I you might have I just described my experience with like the poster.
Jerry Hoepner: Oh, absolutely you bet.
Nguy, Brandon: So, like, I guess, like do you want to restart or like?
Jerry Hoepner: Sure yep.
Nguy, Brandon: Okay.
Jerry Hoepner: Yeah, we can do that. I'll do a lead in I got a little bit maybe more specific. Okay Brandon so, can you share a little bit about your experience at the Summit?
Nguy, Brandon: Yeah, sure. So, throughout preparation for the poster, this being my first time you know at a conference and presenting research firsthand. They were just many things that I was just not aware of, and so through the help of my colleagues, I just asked a lot of questions. To step two things, step by step, and really tried to know the perspective of a researcher, I guess, and so, when beginning or on the first day of Aphasia Access, I was pretty nervous, but after watching a few keynote presenters and some of the events, I guess, a lot of nerves just went away and I felt really excited for it and so through watching a lot of the Aphasia Access, I really got a great understanding of how important evasion researches the people and how much passion, people have about this topic, how much people really, really care about it. Yeah.
Jerry Hoepner: That's terrific. Do you have a favorite moment from the Summit?
Nguy, Brandon: I guess my favorite moment was probably around the end with the award ceremonies and just how I mean just tell supportive people are. How just happy people were how supportive each other, they were in just how excited people were to keep continuing to do like these great things and I felt like man I can't wait for me to be on that stage and to be more in depth within research.
Jerry Hoepner: Wow that's terrific. I have to agree just such a great family of researchers and clinicians and people with Aphasia Access. Very accessible as the name implies to talk with each other. So what's something from the Summit that you learn that you'll take with you and use in your future?
Nguy, Brandon: So, through I guess the summit, I really got a great understanding of the value of research, where it's not just something that just happens on a whim it's a long process, but the results that come out of it like outweighs the hard work like it's at the end, like it's worth it and it really gave me a way understanding that everyone's in the same boat everyone's working hard, everyone is pursuing this great passion and there's really no easy way to conduct meaningful research and so that is something I just really took to heart.
Jerry Hoepner: And that's a great lesson, terrific lesson. So as a student, what would you say why should other students get involved in Aphasia Access?
Nguy, Brandon: So Aphasia Access is really meant to get to meet many people that I probably would not been able to meet in you know just in general, like I met so many professors and so many researchers from literally across the world, and that is just unbelievable for me, and it really gives you a creek perspective on if you're interested in research, like what you have to look forward that down the road.
Jerry Hoepner: Yeah, that's terrific well thanks for having a conversation with me. Is there anything else you want to share with our listeners?
Nguy, Brandon: I’m just you know, I feel like patience and ambition really works out at the end and it's just been a great honor and pleasure for me to present at Aphasia Access and for speaking today on this podcast.
Jerry Hoepner: Alright, well, thank you so much, Brandon and look forward to seeing you again at a future Aphasia Access, maybe. Thank you. All right, take care.
Nguy, Brandon: You too.
Nick Malendowski’s segment
Jerry Hoepner: Good morning, Nick how are you today?
Nick Malendowski (He/Him): I’m doing well, how are you?
Jerry Hoepner: I’m very good, thank you for joining us today. I’m excited to hear a little bit about your experience at the Aphasia Access Leadership Summit.
Nick Malendowski (He/Him): Awesome, sounds good.
Jerry Hoepner: Before we jump into that can you describe how you would just, excuse me, let me do that one over. Can you talk a little bit about how you would describe the life participation approach?
Nick Malendowski (He/Him): Yeah definitely. So, when I think about the life participation approach, I often think about how it's helping people get back to what they're passionate about. This isn't necessarily about like what a researcher or clinician wants their client to do, it's about getting that person back to what they want to do. It's like when someone with aphasia has a stroke, or something that like, you know really impairs that part of their life. They definitely have the capability to do the things that they love and that can often really decrease that person's quality of life which can really just put a damper on a lot of things for them. So taking this type of approach with someone can bring back someone to what they love, which I think, as someone in speech sciences, that's really important because you want to help this person do the things that they really enjoy. And I’ve always been like super passionate about helping others find their passions. It's like, whether that be like finding their passion for what they're doing or finding their passion for something new, I think this approach really aligns with that. So that's why I just think it's really important to take that life participation approach with patients.
Jerry Hoepner: All that's a great description and a great summary of what the life participation approach means for sure. Nick, tell me a little bit about how you got involved in the. Aphasia Access Leadership Summit. I know you did a presentation so maybe you can talk a little bit about that as well.
Nick Malendowski (He/Him): Yeah definitely. So, I attended Central Michigan University and just graduated in May and I was also a member of the honors program there, so one of the requirements for being in the honors program at Central is that you have to complete an honors capstone project, which is pretty similar to like an undergraduate thesis. So, when I was thinking about what I wanted to do for that project, I knew I wanted to do something to better the lives of other people. Something that wasn't just gonna like benefit me in the long run, but also help other people with whatever that looks like and as a communication disorders major obviously I wanted to do something that was focused in communication disorders as well. I've been working in Dr. Katie Strong’s story lab, but prior to approaching her about this project, I knew I wanted to do it with her. She actually is one that offered me the idea of working with Dr. Jackie Hinckley to work on a project that focused on the experience of stakeholders and research. So, prior to that, I really didn't know what that meant. I wasn't sure like what stakeholders were I didn't know what stakeholder engaged research was but it's something I was interested in learning more about which kind of how I got started on that project. Which ended up focusing on like the perceptions of researchers and stakeholders engaged research. So, when we are finishing up that project and began talking about like where we wanted to present the material at Dr. Strong and people suggested the Aphasia Access Leadership Summit and we all agreed it’s kind of like the perfect space to present this research at so that's kind of how I got involved and then ever since then I’ve just been really taking part in all the different like things that we could do, as members of Aphasia Access.
Jerry Hoepner: That's terrific. Can you give me just a little bit of a nutshell, these are what we found in terms of that stakeholder engaged research?
Nick Malendowski (He/Him): Yeah definitely. So, when we were looking at the different kind of results kind of how we did it is we interviewed a few researchers to kind of hear about their experiences with a stakeholder and each research conference and there were four themes that we kind of got out of that. So it’s a new way of thinking so kind of how this conference changed their perceptions and view of working with other people barriers that they experience kind of hearing about like you know, this is what happened this how things played out roles was another one so kind of hearing about like you know this, how my role has changed, these are the things that really were impacted and then the last one, And then the last thing that we found was motivations and so kind of hearing about like what motivated researchers to get involved with stakeholder engaged research because you know oftentimes we hear about top down research endeavors and kind of hearing about how researchers take that ownership and then have other people below them working with them but this is kind of hearing about like why they were motivated to attend a conference that was focused on bringing more people into research.
Jerry Hoepner: Oh, that's terrific and what an opportunity to work with both Dr. Strong and Dr. Hinkley on something like this is just terrific.
Nick Malendowski (He/Him): It was amazing.
Jerry Hoepner: Absolutely. Can you share a little bit about your experience at the Summit outside of your presentation as well?
Nick Malendowski (He/Him): So, unfortunately, I wasn't really able to attend to a lot of the conference, just because I was doing a lot of graduate interviews that we had a lot of finals preparation and things like that, but like I said, I was able to participate during the student poster sessions. So, I love really being able to connect with like the other professionals in a live session. I feel like I did miss out on a lot of networking over the past year just because of the pandemic, which makes sense. So, I just really appreciated how this conference was synchronous and I was able to connect with a lot of other people.
Jerry Hoepner: That's excellent. Anything in particular that you learned that you'll take with you in your future?
Nick Malendowski (He/Him): Oh yeah definitely. I learned so much just about like the research presentation styles and things like that. During other like asynchronous conferences that I attended, I felt that a lot of things were more scripted and weren't as like you know live and having conversations with other people. So, I’m planning on going to academia, so this really helped me gain a lot of skills and how to effectively engage with other professionals in those conversations. Just because I wasn't really able to do that with my other conferences so having this kind of informal conversation-based residence table to talk to other people was really beneficial for me.
Jerry Hoepner: Well, that's excellent and you're right, that'll be great preparation. Why would you encourage other students to get involved in Aphasia Access?
Nick Malendowski (He/Him): Yeah, you know I would encourage everybody to get involved with Aphasia Access. I feel like aphasia is so misunderstood. Especially to like the general public but also even to some communication disorders and speech pathology students and I think a lot of people don't necessarily know exactly what it is. So, having more students and even professionals get involved with Aphasia Access, more advocacy can take place and more connections can be made. I'm someone who really is passionate about making connections with other people, so I think that's a great way to do that. There's also just so many amazing resources for students to take part in like there's a lot of speakers and networking and just adding a lot to his students’ skill set. So I would just absolutely recommend, whether it be just like a single experience or whether getting fully involved like Aphasia Access, I would absolutely recommend anyone to get involved.
Jerry Hoepner: That's excellent. Well, it's been fun talking with you this morning, Nick. Is there anything else that you want to share?
Nick Malendowski (He/Him): I just think I’m really excited to see what Aphasia Access is able to do in the future as well. You know I’ve never heard of Aphasia Access before this year so I’m excited to see all the new things that come out and excited to see all the different resources that are available to students and I’m just really glad that more advocacy is taking place for people with aphasia.
Jerry Hoepner: Oh, that's terrific and we hope to see you again at other Aphasia Access events.
Nick Malendowski (He/Him): Thank you so much.
Jerry Hoepner: You bet have a great day.
Nick Malendowski (He/Him): You as well.
Clarisse El Khouri Faieta's segment
Jerry Hoepner: Well, good morning, Clarice. How are you today?
Clarisse El Khouri Faieta: I’m doing well and yourself?
Jerry Hoepner: I’m doing well. I’m excited to talk to you this morning.
Clarisse El Khouri Faieta: I’m happy to be here.
Jerry Hoepner: So, Clarisse, I’ve been asking other students a little bit about their experience at the Summit and I’ve started out with a question about how would you describe the life participation approach?
Clarisse El Khouri Faieta: Well, to me, I think that it's extremely important to put quality of life over anything, especially with people with aphasia. So, I think that the life participation approach does a really amazing job of helping people with aphasia come back into society, so you know when you have a communication disorder. For a lot of these patients it's really difficult for them to kind of integrate themselves into society into even their families close contacts, and so this approach to therapy help centers to kind of give them a push or give them tools to be able to come back to be able to be comfortable with others talking with others, amidst their condition.
Jerry Hoepner: That's a terrific description. So it sounds like you're well on your way to learning more about helping people with aphasia for sure.
Clarisse El Khouri Faieta: Yeah, I do want to use that in my therapy.
Jerry Hoepner: Excellent how did you get involved with the Aphasia Access Leadership Summit?
Clarisse El Khouri Faieta: So, I am a graduate assistant for project bridge, so I work alongside Dr. Hinckley and she and Dr. Strong and Nick Malinowski, a student from Central Michigan University, we were working on a project about stakeholder engaged research and perceptions of researchers on stakeholder engagement research on so I did two presentations at the officially Aphasia Access. So one presentation was working directly with Dr. Strong, Dr. Hinckley, and this undergraduate student Nick Malinowski from Central Michigan University on researchers perspectives of stakeholder engage research and then another poster presentation, I did with Dr. Hinckley about survey responses based on what researchers people with aphasia their families thought about the Bridge Conference. So I did two poster presentations.
Jerry Hoepner: Very cool, can you tell me a little bit more about that second one the stakeholder perspectives?
Clarisse El Khouri Faieta: So the second one, with regard to the survey responses. Right yeah so um there were there was a Bridge Conference meaning the it's like a research incubator that links researchers people with aphasia clinicians and their family. The family of people with aphasia they link them together on like research teams, and so they held a conference in St. Petersburg and so we had a survey before the conference that we sent out and then a survey after the Conference, and so what we did was that we kind of looked at we analyzed what their perceptions on stakeholder engagement research was before the conference and how their perceptions changed after the Conference. So we looked at- we designed surveys, for example, for people with aphasia in a very aphasia friendly manner, we had videos of US narrating the questions to them, we change the font size all of that, and then for the researchers, you know, we had a list of questions like, “What is your thought of stakeholders engaged research?” all of that, so what we got in response to that was that a lot of their views have changed on stakeholder engage research after the 2018 Bridge Conference in a positive manner. So a lot of them or more knowledgeable about SCR and how to specifically help people with aphasia and their families contribute better in the research process.
Jerry Hoepner: Oh, what a terrific program the Project Bridges and what a terrific measure of that you know the outcomes at the conference. Wow, that's terrific. Just such an important thing to collaborate directly with those individuals with aphasia about you know what what's going to help them the most in the long haul so terrific and great to hear those researchers’ perspectives change to in terms of that collaboration.
Clarisse El Khouri Faieta: Yes.
Jerry Hoepner: Oh, that's terrific. I'm so glad that was part of your experience at the Summit. Can you tell me a little bit more about your experience outside of the presentations that you gave?
Clarisse El Khouri Faieta: So, I was able to participate in some cases conference presentation, so we actually saw one presentation, that is the fruit of Project Bridge with that which I thought was interesting, which was the aphasia and games.
Jerry Hoepner: Presentation and I thought that was fascinating.
Clarisse El Khouri Faieta: And just to see what Project Bridge can help with to be able to bring people with aphasia and researchers together to be able to present and I just thought they did such an amazing job and I learned so much with regard to how else you know people with aphasia can contribute, and you know, the fact that they made a game for people to face with aphasia to be able to use that's also in a that's also functional you know so that was really interesting.
Jerry Hoepner: Yeah agreed. Willis Evans and crew did a great job it was really awesome to see them all present together and yeah and the games themselves were really interesting and fun. So yeah, terrific.
Jerry Hoepner: Do you have a favorite moment from the Summit that sounds like it might be one of them?
Clarisse El Khouri Faieta: Yeah, definitely that's one of them. I also was able to participate in the presentation of the awards at the very end of the summit and Dr Hinckley actually got an award as well. And, just to be able to hear all the accomplishments of these researchers and these clinicians. You know it helped me to realize that this is such an important field. And it's a little underdeveloped, you know, in the sense that there's not many people that go into this field it's a very niche field. But just all the strides that people have made within this field to help people with aphasia. Especially to be able to you know help them with not only their communication disorder, but also help them reintegrate back into society and give them counseling and all that and make like foundations and clinics and this and that I think just hearing those accomplishments helped me to realize how important this this field is and how rewarding it is as well you know, to hear people's testimonies and all that.
Jerry Hoepner: 100% agree, you talked a little bit about some things you'll carry into your future. Anything specific that you want to share that you'll definitely take into your future from this experience?
Clarisse El Khouri Faieta: I just think that it's important to definitely put the patient first, before all interest and to also listen to them and their families, because we have goals of our own right, based on how they do on in their diagnostics and all that but it's also really important to see what they want. What they want to improve on first and how we can kind of go into that middle ground and see how it does that they can improve with our goals, and how does that they can improve with their own goals so definitely putting the patient first.
Jerry Hoepner: Yeah, that's a really great takeaway and certainly if you can do just that that's a big step towards doing the right thing for individuals with aphasia and the rest of our patients and clients. Why should other students get involved in Aphasia Access?
Clarisse El Khouri Faieta: I just think that it's a great learning opportunity first, because you get to listen in on different presentation conference presentations by researchers that are very skilled that are very seasoned and then, at the same time, it gives you that the skills necessary to deliver what you've done in your research or how to get involved in research. Also, it's a great networking opportunity, you get to listen in and talk to these researchers and a lot of them are most if not all of them are extremely nice and approachable. So, I think that it's such a great learning opportunity and for anyone who is able to get into Aphasia Access to definitely go for it.
Jerry Hoepner: Oh, that's terrific. That's one of my favorite things about Aphasia Access too. How easy it is to connect with all of those researchers, and everyone is you know treats you like they're on their same level and is open to a conversation so.
Clarisse El Khouri Faieta: Yeah.
Jerry Hoepner: They do yeah absolutely. Yeah terrific. Well, thank you so much for sharing, Clarise. Is there anything else you want to share before we end our conversation?
Clarisse El Khouri Faieta: Well, that Aphasia Access, I think this conference was really good although it was virtual I still learned so much and just all the tools and resources that they had were really, really helpful, especially to me as I, you know as I graduate soon, and I start seeing where it is that I want to specialize in this field. So, I think that aphasia says kind of gave me that push to be more interested in the field of aphasia.
Jerry Hoepner: Terrific way to cap it off. Well, again, really nice talking with you and I look forward to seeing you at future Aphasia Access, maybe.
Clarisse El Khouri Faieta: Yes, for sure, thank you, Dr. Hoepner.
Jerry Hoepner: You're welcome.
Clarisse El Khouri Faieta: Have a great rest of your day.
Jerry Hoepner: Thanks, you too.