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Welcome to the Aphasia Access, Aphasia Conversations Podcast. I'm Ellen Bernstein Ellis, Director Emeritus of the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences, and a member of the Aphasia Access Podcast Working Group.  Aphasia Access strives to provide members with information, inspiration and ideas that support their aphasia care through a variety of educational materials and resources. Brief topic intro I'm today's host for an episode that will feature Dr Felicity Bright. We'll discuss her research looking at factors impacting wellbeing,  engagement and hope. Guest bio   Felicity Bright is a registered speech language therapist and associate professor in rehabilitation at Auckland University of Technology in Aotearoa, New Zealand. Her research examines cultures of care, and in particular, how the cultures and practices in rehabilitation respond to the needs and priorities of patients and those who support them. She has a particular interest in stroke and in the needs and experiences of those with communication impairment through her work, Felicity seeks to support practitioners services and rehabilitation organizations and to provide better person centered care. Listener Take-aways In today's episode you will: Explore how qualitative research promotes the nuanced study of meaningful clinical practice Consider cultural differences in well-being and what this might mean for how we work with people with aphasia and their support networks Reflect on the importance of having discussions with patients about hope and well-being Discuss how culture and organizations impact healthcare practice for individuals with aphasia Show notes edited for conciseness Ellen Bernstein-Ellis Felicity, welcome to our show. Thank you for agreeing to be our guest today. Felicity Bright  Thank you for having me. It's great to be here. Ellen Bernstein-Ellis  Welcome Felicity. We're going to start today with  an icebreaker question. The one you selected for today is, “Do you have  a favorite book or movie about aphasia? Felicity Bright  It was hard to choose one. Actually, I was just looking at my bookshelf and I went back to myself as a fairly new speech and language therapist quite a few years ago now. One that was really transformative for my practice was Talking about Aphasia by Suzie Parr and Sally Bing.  It's a classic, but it was a beautifully written book that really opened my eyes to the experiences of people with aphasia beyond all the technical work that we'd learned in university and so on, but it brought to life the humanity of the people who have aphasia, and really helped me rethink why I do what I do, and what the real impacts of aphasia can be for people. Ellen Bernstein-Ellis  Yes, that's a beautiful book that brings that all to the forefront. And I want you to say the title and author again, in case I spoke over you a moment ago, Felicity Bright The book is Talking about Aphasia and the authors are Susie Parr, Sally Bing and Sue Gilpin with Chris Ireland, Ellen Bernstein-Ellis We'll put that (i.e. citation)  into the reference list on our speaker notes. So thank you. And as we start today's interview, I was wondering if you'd like to share your path from clinician to researcher, because we've had several guests who have started in clinical work and then came to their doctoral work and research a little bit later. So,  I'd love it if you could share that with our listeners. Felicity Bright Sure. So I worked as a speech and language therapist in New Zealand. We are speech language therapists. I worked in a range of neurological settings, from acute stroke neurosurgery, did a little bit of ICU, did some rehab in inpatient services and in community, and really enjoyed that work, but I'd always had a long standing interest in research. I was a bit of a geek, you know, When I was in training, that was, that was me,  I was the geek. And so I'd always kind of expected at some point I would go down the research track. It was prompted after I had my first baby, and my work required me to either go back full time or to not work. And so at that point, I chose to not go back to work full time, and a research job came up at Auckland University of Technology, and I'd followed their work for a while. We don't do speech therapy here, it was rehabilitation research, and I was offered an opportunity to be a research officer doing interventions as part of a randomized control trial with people with traumatic brain injury. And so that kind of gave me the space to bring together some clinical work, but also some research work. It gave me the opportunity to do my Masters alongside this with my fees paid. So that was fantastic. And it really solidified for me that I was quite happy and enjoyed being in that kind of clinical research space. And so I've been in the university now for 15, nearly 16 years Ellen Bernstein-Ellis  Wow, that's a great story. So now you have a 15 year old, right? Felicity Bright I have a 16 year old who is now taller than I am. Ellen Bernstein-Ellis Well, thank you for sharing that.  I'm just really looking forward to a discussion around some, what I consider critical but hard to define and challenging to research topics. like engagement, wellbeing and hope.  I want to start by asking, how did you end up researching a topic like engagement or hope? You did say during our planning meeting that you research things that you're bad at, which made me laugh. So that sounds like some courageous and reflective exploration. So maybe talk a little more about that. Felicity Bright Yeah, I am a bit of a selfish researcher. I research the things that I find tricky and a little bit hard, because for me, I want to learn how can I do better at this? How can I help my students learn how to be better in these areas? How can I help clinicians not make the mistakes that  I've made. I guess trying to be a better clinician has been at the heart of a lot of the work that I do. And you know, when I was working full time in clinical practice, I had patients who would stick with me where I just felt I let them down. They had such a short window of rehabilitation access. They were living with stroke for the rest of their lives. They maybe had eight or 12 weeks of speech therapy. There were just times when I really felt I missed the mark for them, when they didn't get the best rehab they could have had. And it was when I was working in the university in this randomized control trial of goal setting interventions after traumatic brain injury that it started to help me reflect on some of the why I was maybe having some of the challenges I was having. So in this trial, which was quite prescribed because it's a randomized control trial, I was noticing that patients seem to be engaging with these interventions a lot more than the people who I worked with in clinical practice, and that kind of surprised me a little bit. I also noticed that-- we were using Mark Ylvisaker's approach to goal setting around what  is meaningful identity based goal setting--and people were identifying hopes and goals and dreams that would have left me panicking as a speech and language therapist. What do I do about this? But it made me realize, actually, I didn't need to panic about that, and there were ways to engage with people about their hopes and dreams that honored those hopes and dreams, that kept them alive. But also, I could see ways that  I could work with this. I could bring my speech therapy hat and help people. And so it highlighted to me that maybe the things that I had perceived to be difficult or issues, didn't need to be and there were ways to think about these things differently and ways to work differently to better support people. So working on this trial, and I did some quite structured reflection around that with some of my colleagues, writing in auto ethnography around this, gave me the opportunity to reflect on these areas, but also highlighted that there was the real opportunity to do more nuanced and more detailed research that would bring to life different ways that we could support people to hold hope, to engage in rehabilitation that is meaningful and that might be able to produce some quite tangible suggestions to support clinicians and to support the people with stroke who we work with. Ellen Bernstein-Ellis  I just want to say that these intangible, some what we call intangible topics that you've tackled, you always seem to end with tangible suggestions, and that's what I have found so inspiring. And we're going to circle back to hope in a few more questions. But, I just want to say, not only has my clinical thinking been informed and inspired by your research topics, but I've also just learned so much from the variety of qualitative methodologies that you've used in your work. I was wondering if you could share how you developed your expertise in qualitative research, maybe even offer some tips to people wanting to develop their own skill set. And okay, maybe I'm being a little selfish interviewer. You just said selfish researcher, but I found this challenging, and I've been trying to dip my toe, or I've fallen in head first,  trying to develop my skill set around qualitative research. What's your advice?  Felicity Bright  I was really fortunate. I came into research, into a team that had qualitative expertise and that used a variety, but not a wide variety, of different qualitative approaches. And it was a team, and still is a team, that has really high standards for methodological rigor. So to us, it's really important to do research that is robust and rigorous and that anchors back to the underpinning theory and philosophy that underlies each of the approaches that we use. But I was also really lucky in my research that I had supervisors and bosses who really supported innovation, who didn't tell me, no, this is how we do things, who didn't expect me to come into a study and do it just as they had told me to do. But they created the space for me to explore when I was working as a clinical researcher, but also as a master's and as a PhD student. Really had no issues when I said I'm going to go to the library, and I would just sit in the library and read qualitative textbooks and come back with a completely hair brained idea, but that actually turned into something that was really interesting and meaningful. So the Voice Centered Relational Approach that I've used a number of times came from sitting in the library one afternoon and just reading Feminist Research Methodology books. And I think one of my tips would be read outside speech and language therapy. There's amazing work that is happening, not just in the health disciplines or education spaces, but I love reading health sociology journals. I get notifications of a number of different journal types that alert me to different work. One of my recent projects I used Applied Tensions Analysis, which I'd never heard of, but I had a notification come across for a paper about domestic violence settings and kind of how services work. That's not in my area of research or clinical expertise, but there was something within that abstract that made me go, oh, there's an idea there that is similar to the ideas that I'm trying to get at in my stroke research. And so reading widely, I use Twitter a lot as a way of, kind of coming up to date with different research. I use trial and error. I've tried things and got them terribly wrong. I tried Grounded Theory  for about a year for my Masters, and it was atrocious. But also I found that doing research with people with aphasia pushes you to be innovative. A lot of the methodologies as they are published don't necessarily quite fit with the types of interviews or the types of data that we have, and so for me, that's provided an opportunity to test and do things differently. Ellen Bernstein-Ellis I mean, that's an inspiring response and encouraging support. So thank you. During our planning discussion, you also referred me to the Life Thread model and the 2008 article by Ellis Hill, Payne and Ward. What a wonderful article. So thank you for that. I was particularly taken with its implications for clinical practice and how it might guide us in asking questions in a better way to help us understand the social realities of our clients, to prioritize that. To understand how important the social reality is for our clients. Could you please share with our listeners some of the core concepts of the Life Thread model and how it's informed your work? Because I do see the connection there. Felicity Bright  Yeah, I came across this, Carolyn Alice Hill, who developed it, I think, as part of her PhD, was a collaborator of one of my PhD supervisors, and so Cath put me onto it. But the Life Threads model is about identity. And Carolyn's work was in stroke, and she was kind of talking to how identity changes and develops over time. And the Life Threads model talks to how our lives and our identities are made up of many threads, and those threads, they can change over time. But when there's a traumatic event like a stroke, it can cause some threads to break or be frayed, and that can be really challenging. We know there's a lot of work around aphasia and identity construction and identity loss, that's come around. But also what we know is that stroke can also prompt people to think about what are the threads that they want to continue post stroke.  Maybe there are some threads, I found in my hope research, where people are saying,”I don't want to be that person anymore. That's not something that I value”, and for them, sometimes the stroke could be an opportunity to rethink what are the threads that I now want to bring into my life as I weave this new identity of somebody post stroke, but still continues threads that have come through from before the stroke. We know from the hope research that I was doing that it was often really hard for people to see these threads.  It kind of felt like there was a pre-stroke life and a post-stroke life, and that there was quite a disruption. Those threads were cut. And so for me, it prompted questions about how do our conversations as clinicians help people identify the threads that are important for them to thread through their life. What are the new threads that they want to pick up on? You know, some of the work I've done, and we will talk about this a bit later on, around life after stroke, has highlighted how actually a lot of the conversations that happen between clinicians focus around things like tasks and activities and doing things, but there isn't necessarily a lot of conversation about identity or about what is meaningful and what do people want to carry through, and how can clinicians support that? And I would say that if we can kind of tune into the threads that matter to people or that people want to matter in their lives, it gives us a chance to tailor therapy to be much more personalized, more meaningful and more engaging, and I would suggest, probably leads to better outcomes for people. What we know from quite a bit of the research, not just my research, but other work, is that people are often doing this identity work on their own, without support. And we know that it's really hard, because our identities are social and they're relational, and they occur through connection and through communication, all of these things that are disrupted by aphasia, often. And so I think the Life Threads model really prompts us to think how can we as clinicians, support people to engage in conversations about identity, and how can we overtly, really attend to supporting identity within the work that we do. Ellen Bernstein-Ellis  Wow, that's beautiful. And yes, I think there's been, fortunately, a growing understanding of the importance of looking at the lack of support for this identity work with us with our clients, and I can really see how the Life Threads model has played an important role in your thinking and research. I recommend our readers to the article because it has some great examples of how to maybe flex the way you ask questions to help understand the narrative better. So I think it's, a marvelous article, I just want to take a moment and let our listeners know about the fabulous interview that you did with Michael Biel on the ANCDS podcast where you discussed engagement and ways you might incorporate Goal Attainment Scaling to help our clients establish meaningful goals.  I'll put the link to that, along with the citations to all of the work we're discussing today in our show notes. That also gives me a chance to say I don't have to cover everything today, because he did a really good job on those topics. But at the end of that podcast with Michael, you highlighted what was coming next, and that was your work on wellbeing. You've been exploring, and this is a quote by you, “what does it look like to explicitly attend to holistic, long term wellbeing?” Can you discuss some of the takeaways from your 2024 article, Psychosocial Well being After Stroke in Aotearoa, New Zealand, a Qualitative Meta-synthesis with your co authors, Ibell-Roberts and Wilson. Maybe we can just start by talking about the term psychosocial wellbeing. That's an important one to understand, but it can vary depending on one's cultural context.  Just to start with that, so yeah, good luck with all of that! Felicity Bright  It's a massive question, and it's funny, I started with the term psychosocial wellbeing, and I really intentionally used the language of psychosocial to kind of move away from thinking about just psychological wellbeing, which tended to be framed more from a mood perspective. And so I really wanted to be attending to some of the emotional, and the social, and the relational elements of wellbeing. But actually, I've now dropped the psychosocial because what we found is, when we talk to our people with stroke in the community, as part of our research, that term is completely meaningless to them, but the term wellbeing is something that resonates. Wellbeing is a really, firstly, a really nebulous term, but it's also really multifaceted. And I guess the place we've come to is, we view wellbeing as kind of quite unique to an individual, but it's deeply relational, and it's influenced through connection with people, with their cultures and with their communities, and all of those areas need attention. Now, in this piece of work that you referred to, Qualitative Metasynthesis, we were looking across the literature in Aotearoa, New Zealand, when we look at all the work that's been done, looking at life after stroke, and living life after stroke, what do people say about wellbeing and that highlighted that there were a number of features. Now, one thing I want to flag is that within New Zealand, we have an indigenous population, the  Māori population of New Zealand, who have been here for centuries before Pakeha came and colonized New Zealand. And one of the things that's been really important in our work is to really make sure that we are upholding the voices of Māori, who are often either not included in research, or are involved in research that is not particularly culturally safe, or where their perspectives are kind of subsumed within the wider perspectives of the dominant Pakeha, or European culture. And so one of the things we've been really lucky to do with this is to have my colleague BJ Wilson, who was leading the Māori stream, so she engaged with our  Māori data and literature uniquely. So we upheld that in its own right. That's context, because I'm going to talk to two different ways of thinking about wellbeing, one that was general from all of the literature and one that was specific to Māori . So when we look across all of the New Zealand literature, including the  Māori literature, we kind of saw there were probably four key areas that seemed to matter for wellbeing. Having strong connections with family, with old, pre stroke friends, but also with new friends, people who had also been through stroke and had some similar experiences. The sense of self that was connected, where people had a sense of being connected to who they were before the stroke, who they are now, and have an idea of who do I want to be in the future? And there was a sense of coherence, sense of thread that went between those identities. There was, when they experienced wellbeing,  a general sense of stability in the present. So things were okay now. It didn't mean that things were perfect. Some of the literature has suggested that people have to have positive emotions if they're going to have a sense of wellbeing. But actually, this qualitative meta synthesis, and the following qualitative work we've done has suggested, no, life is never 100% positive for any of us, but it's about having a balance of, yes, maybe there are some hard times, but also there are some good times as well.  That overall, there's an equilibrium of emotions, Ellen Bernstein-Ellis  Right the duality, like be able to hold the duality Felicity Bright  Absolutely and kind of be okay with it, recognize that each of them has a time and a place. People also, when there was a sense of wellbeing, had a vision for the future, kind of a sense of moving towards that. So, yes,  they were okay in the present, but they also had a sense that the present is not my future for the rest of my life. I can see a life that is meaningful and enjoyable, and I'm taking steps towards it. But when we looked at the literature from Māori, and this was the analysis led by my colleague, Bobby-Jo, it also came through ideas like whanaungatanga and ngā hono. So whanaungatanga talks to the notion of connections, and ngā hono talks to connections and kind of belonging as well. And that was a sense of connection to whānau. So that is to people's wider kinship networks, not just blood relations like a family would be, but to kinship networks who are meaningful to the person. Having a sense of connection and belonging in their community, but also to places of meaning. So not just people, but to places. We also notice an idea around ko ahau, so being connected to their identity as Māori, to their cultural identity, in a sense that their cultural identity was recognized and was valued and supported by those around them, including healthcare professionals. Ideas of mana and wairua. So mana talks to the inherent standing and value that an individual has. And we all know that in a healthcare context, actually, that can be diminished because you become a patient in the healthcare context. But actually, for wellbeing, having that mana recognized and valued and upheld was really critical. And when one's personhood is understood and respected, that also helped with the sense of wairua, I guess, the spiritual essence of the person. And finally, was the notion of rangatiratanga, which is about autonomy and control and the ability to make decisions for oneself.  We can see that while there were similarities between our  Māori and our non-Māori groups, there were also cultural differences. So for wellbeing, for Māori, had wider integrations with their sense of whānau, their family and kinship networks, and for their culture and wellbeing was unique for each whānau within the research. Ellen Bernstein-Ellis  I'd like to take a moment and have you elaborate a little bit more on that concept of the relationship of whānau to wellbeing, and how the whānau may be impacted by the stroke and subsequent aphasia. So often our family and support network does not receive direct attention. And here, you're elevating it quite a bit, so maybe you could speak to that a bit more. This is really top of mind for me, because I just went to a think tank meeting and hearing the stories of the care providers saying, I'm not sure I mattered in this equation of my spouse's health care rehabilitation.It just really struck me to hear that. So please, let's talk a little bit more about those values. Felicity Bright  Yeah, absolutely, for all of the people in our wellbeing research and in the previous hope research and so on that I've done, kind of people's whānau, their family and their social connections were absolutely critical to their recovery. And what came through, when we were looking at Māori experiences, was particularly also the intergenerational aspect, like sometimes within stroke services, we might think about the partner a little bit, not always particularly well. And I'll talk to that in a minute. But actually, we could also hear within our  Māori whānau, kind of the impacts for generations above and generations below, like the disruption to relationships between grandparents and grandchildren, and how the grandparent who may have aphasia, would usually have a really critical role in passing on family knowledge, or passing on Matauranga, kind of Māori cultural knowledge. But actually, because of the way the stroke affected them, they couldn't do that and take that role on, and so that impacted not just on the relationship, but also kind of on the identity and how Māori culture could be passed on through a whānau unit. But we've also heard exactly what you talk about. Our services are focused around the person with stroke rather than their whānau, but our services are also really short term. And so what  we can see from the research is that the family and the whānau become the connectors and the supporters. They are the consistent people. They hold, usually, deep knowledge of the person that often the healthcare professional doesn't hold. And we're doing some work at the moment around communication access in stroke units.  And even in the context of really significant aphasia, we're hearing about how whānau, even though they don't know about aphasia, they don't know about communication strategies.  But because they know how to read the person, they know their non verbal communication, they are actually really powerful translators, and hold the expertise that, actually, we don't hold as Speech and Language Therapists.  But we also know that the whānau are key in helping people access supports outside the healthcare system, and they do a lot of that navigation work that they are left to do because the healthcare system doesn't do it very well. And like you say, that's really challenging when the whānau's well-being is impacted themselves, you know, but that isn't seen consistently, and it isn't acknowledged. They very quickly become the carer, rather than, this is this person's wife and they've been married for 45 years. Or this is this person's husband, and they've got three young children at home. What is this going to mean for their relationship as a couple, for their relationship as parents? And so the families are talking to us about the exhaustion and the grief and the shock and the loss.  The relief that the person is alive, but again, the duality, there is relief, but there is also distress from the way that the stroke is impacting. And so we would really be calling for much more focus on everybody's wellbeing in this context, because if the wellbeing of whānau is not there, that impacts also on the wellbeing of the person. And I think we need to be shifting how we think about who is our client, whose needs do we serve, and what is our role in supporting the social and relational context around the person Ellen Bernstein-Ellis  That's beautiful. You really highlighted that role, the role of the whānau. And you also identify, Felicity, some other key contributors to wellbeing, and then how those might really impact our clinical goal setting, and I know that's always such an important aspect of how we think as clinicians. You have to document because we're in a system, which we'll talk about. Maybe you can share some other factors that you identified. Felicity Bright  Yeah, so I would be encouraging people to think about what are all the things that seem to support people's long term wellbeing? And those are things, like the relationships they hold within their family, but also within their social networks and within their work networks and so on, Thinking about the different emotions that people might be experiencing. Thinking about hope and what supports people to hold hope, and what do people hope for. Think about the connections that matter to people, the connections to people.  The cultural things that matter for people's wellbeing.  The connections to community activities and roles and so on. And think about the things that matter and are meaningful for individuals that usually fall outside our traditional SMART goals that we use in New Zealand, you know? Is it smart, specific, measurable, achievable, realistic, time bound? What is it? I would be saying our goal should be focusing on what makes a good life for this person. And I would be encouraging you, if you're a clinician, looking at the goals that you're setting for the person.  Where is the good life in those goals? Is that up front and center and documented on the page that everyone can see it? That's something I learned through my goal setting research. That was my first research job, the importance of taking people's words, putting their words on a page, and keeping the words where everybody could see it. So where are the things that support wellbeing and that constitute a good life in our goal setting? Where are they in the interventions that we're doing? And I would be really encouraging people to reflect on how they are making the links explicit between the therapeutic tasks and the things that really matter to people. Because we know from the engagement work that when people can see the link between what they're doing in therapy and what matters to them in life, it is much more likely to be engaging and is much more likely to support them to persist, even when it's difficult, because they can understand this is why I'm doing this thing. Ellen Bernstein-Ellis  Right? Oh, that's beautiful. That really leads nicely into another 2024 article that you've put out focused on wellbeing.  And that's The physical wellbeing is our top priority: Healthcare professionals' challenges in supporting psychosocial wellbeing and stroke services. That article examines what seems to be a mismatch between knowing as clinicians that wellbeing is important, right, and being able to specifically address it within our clinical context. So, we say that we want to, and we know it's important, but the ability to get there, it's quite challenging. I was wondering if you could highlight some of your findings and key recommendations. And I think one of those actually addresses the graduate curriculum. I think that is really going back to the beginning, right? So, please share some of the wonderful work from that article. Felicity Bright So the context for this work is, this is part of a bigger program of research I'm doing around wellbeing after stroke. And this isn't specific to people with aphasia, but we do have people with aphasia in the research.  This research came from this issue-- we've got decades of literature that says that wellbeing is important. We've got a body of literature that says clinicians know wellbeing is important, but we are persistently not addressing wellbeing, and we've got decades of patient experience data that says this is an unmet need. So I was really interested in understanding, why have we got this persistent mismatch between what is known what matters and what is done, and so using an approach called institutional ethnography to try and get into the cultures and the structures that contribute to this, the rationale behind that is I didn't want to be creating solutions that were going to be completely unattainable in the healthcare context. And so I wanted to understand what's going on in the structure of the healthcare system, and how might we be able to work with that or push against that, to create different ways of thinking about how we work to deal with this persistent issue. So this project, this part of the research, we were looking at, why are clinicians not seeming to address wellbeing? And so we interviewed over 30 clinicians, I think, within this research for a whole range of healthcare disciplines. What came through really consistently was everybody wanted to support wellbeing. Everybody thought it was important, but there were a number of factors that made it difficult, and we traced as to why that was so. Firstly, we can look back to when the person first comes into the service. They come into the emergency department. There's often a code stroke that's called. It's a time of really busy early biomedical focus around investigating the stroke, doing assessments. The first couple of days are about intervening to prevent another stroke or to prevent complications. And dysphagia assessment is a classic in New Zealand. Dysphagia assessment is usually prioritized over communication assessment because it is seen to have particular risks and contribute to particular complications. And so we've got this really early biomedical focus as people come through the first few days. Then the focus shifts a little bit to assessments and treating impairment in function. And when we were interviewing clinicians, they were talking about wanting to give people the best chance of recovery, and that linked to ideas around neuroplasticity and the importance of early intervention for maximizing neuroplasticity and brain remodeling. There was a real focus on addressing the practicalities like toileting and dressing and what was needed to get people home. And there was a view often that emotions could wait. We need to do the practicalities first. We can do the other stuff later. This was a time of focusing on helping people survive, get through and get home, and it was in the context of really busy wards.  You know, sitting and watching nurses work, they are flat out. They are understaffed, and they have very limited time to be doing these aspects of work. But all of this contributes in this wider healthcare system that in New Zealand, and I suspect internationally, is short staffed, underfunded. We've got more demand than we've got beds. There is a really strong focus on getting people home. Now that's not inherently bad. A lot of our people that we speak to want to be home. Home is a more healing environment for many people than being in hospital. But when the focus is on getting people home, and that is usually about, is the person physically safe to be home, what can happen is other forms of work and other impacts of stroke can be devalued or be forgotten. And what we could see is people were doing work to support wellbeing within this, but it was kind of a particular form of wellbeing work. They would acknowledge a person's emotions, if they came up through interactions.  They would be responding to the emotional cues that people gave off that they were maybe feeling a bit uncertain or a bit upset. They talked about the importance of listening to the person, but that was often couched in a ‘I can listen for so long, but then I need to get on with my session', because the assessment, the treatment, the moving people forward wasn't important, and they would look to others to help. But the problem is, I would say this, this did a really good job of dealing with the tip of the iceberg, the emotions that were on the surface. But if we think back to what I've just said about what matters for wellbeing,  relationships, connection, sense of self, hope, those things are not addressed. What we saw was that wellbeing was other to the core work of any individual discipline. That didn't work for anybody. Didn't work for our patients that we spoke to. It didn't work for our clinicians as well, because we could also see the moral injury and the burnout that comes when you can't offer the services that you know people are wanting and needing. And when we think about what do we do about that? Well, yeah, it's tricky, and I don't have any great answers, but training and education is one thing. So when we think about wellbeing as seen as other to the core business of the disciplines, we need to look at, what is it that we're teaching our students? What are we saying is core work of speech therapy or of physiotherapy or of nursing. I've got the privilege of chairing the accreditation body for speech therapy in New Zealand, and we are rewriting our accreditation framework at the moment that essentially dictates what programs need to teach. We now have a requirement that programs are teaching about psychosocial wellbeing, and that programs are assessing students on how they're addressing psychosocial wellbeing. We need to look at how pathways for care develop, and where is wellbeing within policies, processes, structures, documentation, Basically, it's nowhere. But we also need to look structurally, and we can talk a little bit more about structures and organizations and cultures, because I think what this work reflects is a wider issue around the cultures and the organization of care that can make it really challenging for clinicians to work in the ways that they do. Ellen Bernstein-Ellis  Oh my gosh, it's a beautiful, beautiful response. I think my favorite quote, and there were many in that article, but the one that said “people with stroke live with the impacts of a stroke system that is designed around biomedical short term care for a lifelong condition and deserve services that support them to thrive, not just survive.” I think it's what we need to bring back into the curriculum for our students to understand. And all of this ties into the importance of understanding how cultures and organizations, like you just said, of care, might impact the therapy we provide to our clients. Why do cultures and organizations of care matter? You're alluding to that. I think we've just started to reflect on that. Felicity Bright  Yeah, I've often felt there's a real risk with the research that I do that we could end up pointing the finger at clinicians of not doing things as well as they could or as well as they should. But actually, we need to understand why is this? Why does it make sense for clinicians to prioritize dysphagia over communication? Why does it make sense to prioritize getting people home, over spending the time on addressing their wider wellbeing? And I've been really lucky to work with Deb Hersh and Stacey Attrill, we did a piece of work that looked at this in the context of how speech therapists enacted therapeutic relationships. And we started by delving into why do people work in the way that they do? We started to see the cultural elements. So the needs, for instance,  your allegiances to colleagues, to be a good team player, to maintain your legitimacy. And particularly for speech therapists, who often have a slightly tenuous role in stroke teams. Physios and OTs are important, but speech therapists often have to kind of fight to kind of have their voices heard, and so that can lead to speechies behaving in particular ways. We can also see how cultures of safety impact on what people prioritize. So Abby Foster has done some beautiful work around the cultures of aphasia care and acute care, and highlighting that actually the priority for physical safety and managing dysphagia risk is privileged over the culture of or a need to think about what is the risk associated with communication and poor communication and people not having communication access. If we understand why people work as they do, and if we understand how the cultures and the structures work, then we can start to unpack them and think about what are the ways that we might be able to do things differently. You know, these cultural factors are very real, and none of them are inherently wrong, like it's not a bad thing that we're trying to prevent people getting aspiration pneumonia. That's really, really important, but we need to understand how these things shape practice and the unintended consequences that they might have for what is not valued and for what work isn't prioritized, and what outcomes don't actually seem to really matter in these contexts. And when we start to make these visible, then that opens up space to think about, how might we be able to do things differently, where we can maybe hold all of these things. And you know, in my work that I'm doing around wellbeing, that's the next phase of our work, is working with clinicians to think about, how might we be able to do things differently, so that it's not one or the other, it's not a dichotomy.  But how do we create space for all of these things to be viewed as important and to be prioritized? Ellen Bernstein-Ellis  You've started to dig into that already, because you have yet another 2024 article that you co-authored with Kayes, Soundy and Drown,  Limited conversations about constrained futures: exploring clinician conversations about life after stroke in inpatient settings. And that examines how clinicians talk about the future with their clients. It analyzes 300 hours of observation of clinical interactions, along with 76 interviews with people with aphasia and 37 clinicians. I just want to say that's an astounding undertaking. So, as I read it, it felt like almost an extension of your 2013 and  2020 articles looking at hope, because you connected how what we say can impact how our clients see their future possibilities. Can you share some of the themes you constructed from all of that amazing data collection? I mean, I'm sorry, I thought 15 interviews were a lot, so then I saw this, and I'm like, oh my goodness, amazing. Felicity Bright  It was a pretty massive piece of work, but it was a real privilege to be able to sit and just observe interactions. And I'm so grateful to our people with stroke, many of whom were like two or three days post stroke, and they had the stranger come along and sit there and observe them for 12 hours, but also to our clinicians, who were quite vulnerable in that process of having somebody observe and analyze what they were doing. But at the same time, I think that work is really valuable for looking at what is going on. What we could see is that the conversations that were being had tended to focus on quite a short term future, and we termed this theme constrained temporal horizons. When clinicians were talking about the future, the vast majority of those conversations were about the immediate future. For doctors and nurses--for nurses, it was often what needs to happen in this shift. For allied health and for doctors, it was what needs to happen before you discharge from our service into the next service. And for some allied health, it might be the first few days at home, but there was a view that talking about the longer term future beyond that should be done by other clinicians who might have more knowledge of what life could look like at that stage. We also found that the talk about quite a constrained future was in the context of actually very limited talk, in the first place. So when we think about communication access, for instance, we think, oh, people with aphasia aren't getting very good communication. Actually, lots of people with stroke are not getting very good communication. Again, thinking about cultural factors, but actually communication is not happening well in stroke units, or, I think within the wider healthcare system.  You know, we've got a very task focused, medically focused situation. And so the conversations that were happening were on topics that were led by healthcare professionals, on the topics that they felt mattered-- the tasks they needed to do, the body structures and impairments. The goals that were set were about what needs to happen before somebody gets home. There was little talk about emotions. There was little talk about how you're feeling about what's going on, or what it might be like for you or for your family when you go home. And so this talk about the emotions and so on and future possibilities was left to patients and to families to raise. And instead, the conversations tended to focus on what the healthcare professionals saw as essential topics for the episode of care. We certainly did see some conversations about the future. So I don't want to be disparaging, and I also want to acknowledge the very partial nature of research. I did not see every single interaction. I know that a lot of these quite personal conversations often happen in things like the shower, when the nurses or the OTS are helping the person shower.  That's one of the few private spaces on the ward. And so I want to acknowledge that my analysis is based on a limited data set, and it isn't based on all the conversations that happened, but certainly there was a trend towards limited conversations. We did see that clinicians would open some doors about the future. So they would talk about possible prognosis in the context of things like upper limb prognostic testing that is offered in some hospitals in New Zealand. We would see clinicians talk about what was meaningful to people, particularly in a context where the patient was struggling to engage, but often when the clinicians were talking about this wider future in this context, it was done to try and plant seeds about what the healthcare professional thought was realistic, and it was done to try and help the person engage in rehabilitation in the context of maybe struggling to engage at the best of times. So I think what we could see was that conversations were limited. They were limited conversations about short term, constrained futures that didn't necessarily set people up with hope for the future, with a sense of possibility, with a sense of even starting that process about what matters, to thinking about what matters to me, what do I want life to look like? Ellen Bernstein-Ellis  Wow, and that really just circles us back to that concept of hope. Your work in hope has just been so meaningful to me. I've been really honored to be the guest lecturer speaking about aphasia to our counseling course that's taught by Dr Shubha Kashinath at Cal State, East Bay. And I've included, from the beginning, your work on hope. I just feel it's critical to give our students ways to understand and think about this construct and the role they can have in offering some hope building clinical interactions. I'd like to close this interview by having you discuss some of your first work that I had the honor to read, and some of the hope affirming strategies that you suggest in your 2020 article. Because I just think that's really a gift. Felicity Bright  One of the things that really fascinated me in this work was how our people with aphasia in the research talked about how they look at their clinician and they are reading them to see, are you somebody who's going to give me hope or not? And if they didn't feel their clinician was going to support their hope or was going to help give them hope, or was going to disparage their hopes, they would shut down and they wouldn't share. And so I think, one of the things is to be reflecting on yourself.  What are the messages that you are giving about how you are a safe person to talk to, about whether you are somebody that they can engage in these risky conversations about? I think there's a couple of things as well. We need to recognize that just because somebody says they hope for something doesn't mean that they expect it to happen. We all have unrealistic hopes and expectations. You know,  psychologist colleagues talk to me about how actually having unrealistic hope is part of being psychologically adjusted, and why should that be different for people with stroke? Who are we to say that we hold the expertise. Now, that's not to say that there aren't challenges. So sometimes you might need to do a bit of a balance of, oh, is this something I need to engage in a conversation about? You know, an example is, if somebody is going to invest quite a bit of money in something that actually, there's no evidence to support and could potentially be problematic. There's a really good guideline I found from Christy Simpson, who's an ethicist, who talked about what are the positive effects that this hope has for people? What would be the impacts of taking it away, both positive, but also, what are the negative things that it would do? And so actually engaging in a bit of a risk analysis to think critically about what is holding this hope doing for somebody. Linked to that in the latest paper we did around recalibrating hope, it really highlighted to me the importance of trusting people to often recalibrate their own hopes. So I went back to my original participants from my 2013 research a couple of years later, and I looked at their experiences of hope over that time. And what we found was most of them recalibrated their hopes. They hoped for different things over that time, and they had done that as they engaged in different activities, as they tried things, as they considered their progress, as they rethought what mattered to them. And so that really highlighted, to me, the need to trust people, but it also highlighted the need to think about, how do we support a context that supports people to do that recalibration. Those who were more likely to recalibrate and hold both hope and realism together were people who had social networks, who were engaging in meaningful activities, and who had a sense of purpose and possibility. One of my participants didn't have that. They had lost their social connections. They had no activities in which they were engaging in what was meaningful, and their hope had shrunk. And so it talks to me again, those earlier conversations we've had about well being, thinking about what's meaningful, what supports wellbeing, that's exactly the same thing that supports hope. How are we supporting people's social wellbeing? How are we supporting their relational wellbeing? How are we helping them connect to what is meaningful and what is possible, not just to their impairments, and maybe what is not working so well. I think it's really important to be explicitly thinking about, what is it that helps people bring joy, have joy? What brings them peace in the present? And how can we help them have that sense that things are okay, even if they're not perfect, but also help them have that sense of looking to a future that's possible. Ellen Bernstein-Ellis  Okay, we only have a minute or two left, but I'm going to throw this last question out to you. Felicity, if you had to pick only one thing that we need to achieve urgently as a community of providers, of professionals, what would that one thing be? This is almost like your elevator pitch. You got 60 seconds here. So, so Felicity Bright  So my one thing, in a long, complex sentence, is that speech and language therapists need to reprioritize communication and supporting people to live well after stroke and aphasia, and they need to consider how we model to our colleagues and to our patients and families, and how we support cultures of care that value relationships and relational work, that value and support communication, and that value and support wellbeing.    Ellen Bernstein-Ellis  Oh my goodness, well said, Felicity. Thank you so much for the honor of having this interview today. I know it's going to be impactful to our listeners, and I want to thank our listeners as well. For references and resources mentioned in today's show,  please see our show notes. They're available on our website@www.aphasiaaccess.org and there you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy, and if you have an idea for a future podcast episode, email us at info@aphasia access.org.  For Aphasia Access Conversations,  I'm Ellen Bernstein-Ellis, and thanks again for your ongoing support of Aphasia Access. Thank you, Felicity. Felicity Bright  My pleasure. Thank you for having me.   References and Resources AUT Centre for Person Centred Research: https://cpcr.aut.ac.nz/our-research Biel, M. (Host). (2016). An interview with Felicity Bright: The patient's engagement and experience with you, the speech pathologist (No. 2) [audio podcast episode). ANCDS. SoundCloud.https://soundcloud.com/ancds/ep-2-an-interview-with-felicity-bright-the-patients-engagement-and-experience?utm_source=www.ancds.org&utm_campaign=wtshare&utm_medium=widget&utm_content=https%253A%252F%252Fsoundcloud.com%252Fancds%252Fep-2-an-interview-with-felicity-bright-the-patients-engagement-and-experience  Bright, F. A., Ibell‐Roberts, C., Featherstone, K., Signal, N., Wilson, B. J., Collier, A., & Fu, V. (2024). ‘Physical well‐being is our top priority': Healthcare professionals' challenges in supporting psychosocial well‐being in stroke services. Health Expectations, 27(2), e14016. Bright, F. A., Ibell-Roberts, C., & Wilson, B. J. (2024). Psychosocial well-being after stroke in Aotearoa New Zealand: a qualitative metasynthesis. Disability and Rehabilitation, 46(10), 2000-2013. Bright, F. A., Kayes, N. M., McCann, C. M., & McPherson, K. M. (2013). Hope in people with aphasia. Aphasiology, 27(1), 41-58. Bright, F. A., McCann, C. M., & Kayes, N. M. (2020). Recalibrating hope: A longitudinal study of the experiences of people with aphasia after stroke. Scandinavian Journal of Caring Sciences, 34(2), 428-435. Bright, F. A., Kayes, N. M., Soundy, A., & Drown, J. (2024). Limited conversations about constrained futures: exploring clinicians' conversations about life after stroke in inpatient settings. Brain Impairment, 25(1). Ellis-Hill, C., Payne, S., & Ward, C. (2008). Using stroke to explore the life thread model: an alternative approach to understanding rehabilitation following an acquired disability. Disability and rehabilitation, 30(2), 150-159. Foster, A., O'Halloran, R., Rose, M., & Worrall, L. (2016). “Communication is taking a back seat”: speech pathologists' perceptions of aphasia management in acute hospital settings. Aphasiology, 30(5), 585-608. Parr, S., Byng, S., & Gilpin, S. (1997). Talking about aphasia: Living with loss of language after stroke. McGraw-Hill Education (UK). Simpson, C. (2004). When hope makes us vulnerable: A discussion of patient-healthcare provider interactions in the context of hope. Bioethics, 18(5), 428-447

In this episode of The Action and Ambition Podcast! Joining us today is David Clark, a retired international business executive who has transitioned into the world of writing. With a strong foundation in English and Poetry from Cal State East Bay, David is now exploring various literary forms, including poetry, novels, and comic fiction. He has several novels set for publication soon and has three poetry books available online, including his notable work, Gone Bodfishin. In addition to his writing endeavors, David is also an actor and is preparing to perform in his first musical. Don't miss a thing on this. Tune in to learn more!

Welcome back to another episode of the #squarepizzapod. This week, Greg is in conversation with Ali Medina, Executive Director of the Oakland Public Education Fund. The Oakland Public Education Fund is a nonprofit that leads the development of community resources in Oakland public schools so that all students can learn, grow, and thrive.In this episode: Current Role, Executive Director, Oakland Public Education FundStarted in April of 2020  Core aspects / programs of the Oakland Public Education FundFiscal sponsor for OUSDRaising and managing $20M to support innovative initiativesProfessional BackgroundFuture Work What initiatives does the organization envision to advance and improve the educational environment for students in Oakland public schools?Bio:Ali Medina has served as the Executive Director of the Oakland Public Education Fund (Ed Fund) since April 2020. She has led the agency through two major campaigns, the COVID-19 Rapid Relief Campaign and #OaklandUndivided. The COVID-19 campaign raised over $3M for food security, distance learning, healthy schools, and direct aid to families. As a lead founding partner in #OaklandUndivided, the Ed Fund serves as the fiscal sponsor of this city-wide campaign to close the digital divide. #OU raised $13M in its first round and provided 25,000 students in Oakland public schools with computers and internet access.Previously, Ali spent eight years as the Senior Director of Programs at a community-based education organization in Oakland working with secondary students and building a new preschool. She created, designed, and implemented community school programming at four Oakland high schools to build career pathways and is an expert in using data to drive improvement. She began her career at the forefront of after-school program development and was a statewide leader in the Healthy Schools movement. She served as an After School Services Administrator for five years, administering over $4M in state and federal grant-funded programs and intervention services. Ali graduated from the University of California-Berkeley with a BA in History focusing on Ethnic Studies and earned a Master's in Educational Leadership from Cal State East Bay.Support the show

California's wildfire suppression planning leaves a lot to be desired. On today's show, we'll learn how our neighboring native communities are rejecting the state's militaristic approaches of fighting fire, by stewarding a relationship with it. Our guests today – Deniss J Martinez and Tony Marks-Block – are researchers and two of the co-authors of a new article called “Indigenous Fire Futures – Anticolonial Approaches to Shifting Fire Relations in California”.  Deniss J Martinez is a research administrator in the Native American Studies Department at UC Davis where she researches collaborative governance, Indigenous environmental justice, and fire management. She is a descendant of Tutunaku people, and grew up in Shasta and Karuk homelands in colonized Northern California. Tony Marks-Block is an Assistant Professor in the Department of Anthropology, Geography and Environmental Studies at Cal State East Bay in Hayward, on unceded Chochenyo Ohlone territory. Tony's research is focused on the socio-ecology of small-scale subsistence practices, including prescribed and cultural fire. Read the article here: https://www.berghahnjournals.com/view/journals/environment-and-society/14/1/ares140109.xml —- Subscribe to this podcast: https://plinkhq.com/i/1637968343?to=page Get in touch: lawanddisorder@kpfa.org Follow us on socials @LawAndDis: https://twitter.com/LawAndDis; https://www.instagram.com/lawanddis/ The post Rekindling Indigenous Fire Practices in California w/ Deniss J Martinez & Tony Marks-Block appeared first on KPFA.

In this roundtable dialogue, three art historians discuss pedagogical approaches in socially engaged art practices as they apply to the teaching of art history, paying critical attention to the ways these strategies intervene on and challenge neoliberal educational norms. How have contemporary artists working in various social and political contexts transformed public and alternative spaces into discursive platforms through which knowledge can be generated, shared, or amplified collectively? And what can we learn about teaching art and art history in the North American system by studying these artists' approaches? This conversation emerged from a panel at CAA 111th Annual Conference, “Generative Pedagogies in Art and Curatorial Practice.” The project will culminate with the publication of Pedagogical Art in Activist and Curatorial Practices, edited by Noni Brynjolson and Izabel Galliera, forthcoming from Routledge in early 2025. Noni Brynjolson is an Assistant Professor of Art History at the University of Indianapolis, where she has taught since 2020 after receiving her PhD in Art History from the University of California San Diego. Her research focuses on collaborative public art projects and examines themes of repair and construction in contemporary art. Izabel Galliera is an Associate Professor of Art History at Susquehanna University, where she is also an Associate Director of the Center for Teaching and Learning and co-coordinator of the minor in museum studies. She received her PhD in Art History from the University of Pittsburgh. Her research is at the intersection of contemporary art, activism, and social justice. Jessica Santone is an Associate Professor of Art History and Visual Studies at Cal State East Bay, where she has taught since 2015. She received her PhD from McGill University. Her research concerns pedagogical art and social practice, particularly projects that expand knowledge around climate and science.

I'm Ellen Bernstein-Ellis, Program Specialist and Director Emeritus for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's hosts for an episode that will feature Jocelen Hamilton and Theresa Yao from Stanford Healthcare. We will discuss how adapting the A-FROM to swallowing disorders can offer a person-centered approach to assessing and treating a person with dysphagia.   Guest Bios     Theresa Yao is a licensed speech language pathologist at Stanford healthcare and a lecturer at San Jose State University. Her clinical and research interests include head and neck cancer rehabilitation, voice disorders, dysphagia, and aphasia. She is passionate about serving people from diverse backgrounds with communication and swallowing disorders. She was a fellow for life of the Albert Schweitzer Fellowship program, and co-founded the Bay Area's Swallowing Support group. She has been actively volunteering in community groups for stroke survivors who need communication support. She has always been a strong advocate for her patients and profession. Jocelen Hamilton has practiced as a licensed speech language pathologist for 19 years. She specializes in management of communication and swallowing disorders in adults with head and neck cancer. She began her career at the University of Iowa Hospitals and Clinics, and then joined the Stanford Outpatient Head and Neck Clinic in 2020. She also previously served as a clinical assistant professor for the University of Iowa's Communication Sciences and Disorders department with a focus on supervising graduate students and helping individuals with strokes and brain injuries. Her current clinical interests center around the development of frameworks to facilitate whole person care for individuals with swallowing disorders.   Listener Take-aways Think creatively about how to apply the A-FROM to other communication disorders, like swallowing Learn how dysphagia can impact the participation, environment and personal domains Consider some PROs that help to capture the impact of dysphagia on quality of life of both the patient and the caregiver Explore some ways to adapt EMRs to incorporate A-FROM or Swal-FROM into your daily notes Show notes edited for conciseness and clarity Ellen Bernstein-Ellis So I'm excited to have both of you here today. Thank you and welcome, Theresa.   Theresa Yao  00:55 Thank you, Ellen. I'm glad to be here.   Ellen Bernstein-Ellis  00:57 And Jocelen you too.   Jocelen Hamilton  00:59 Yes. Thank you so much for having us.   Ellen Bernstein-Ellis (Interviewer)    Welcome both of you, again, to this podcast. And as our listeners get to know you, we like to open with a fun icebreaker question. I'm going to pose two different questions that you've selected for today. So, Theresa, let's start with you.   I guess for full disclosure, I want to admit that, I will share--I don't have to admit, I am sharing that I had the honor and pleasure of being your supervisor at Cal State East Bay in the Aphasia Treatment Program (ATP). So I know that may come up today. I just want to let our listeners know that we've known each other for a while. I have been really fortunate in that relationship and seeing you emerge and thrive as such a wonderful contributor to our field.   So Theresa, could you please share one experience or role that has been meaningful to you as an aphasia ambassador?   Theresa Yao  03:22 Thank you, Ellen. It was great experience when I was in the Aphasia Treatment Program at Cal State East Bay. So that's actually one of the experiences I wanted to share as an opening, because I was at the Aphasia Treatment Program as a co-director for the choir, Aphasia Tones. And that was one of the best memory in my life. And I remember one time, one of our members who had more of a severe expressive aphasia, and usually has minimum verbal output, and we all know him. But whenever he starts singing, Can't Help Falling in Love, this particular song, you can hear that those beautiful words just came out right out from his mouth, fluently, beautifully. He was always so happy every time that he heard the music, and he just enjoy singing along.   That was just a really amazing moment for me to realize that people with aphasia with minimum verbal output, they can still enjoy and participate in choir, and can still communicate that way. It's just showed me how powerful it was to use the Life Participation Approach to Aphasia. And in our choir at that time, we have all different levels of severity. All members join together, and then they all enjoy and engage in this choir experience. So that's really meaningful. Whenever I think of LPA, I think of him, I think of this song, and I think of Aphasia Tones.   Ellen Bernstein-Ellis  04:54 Thank you for sharing that. And Theresa, it was wonderful to have you as a co-director. And see you step up to the challenge of leading the choir. And you're right, we really have a strong motto of participation at every level. And you really worked hard to make sure that happened. So thank you for sharing that. And yes, that's one of my favorite topics, so I loved hearing about that.   And Jocelen, I'm also excited to ask you to share with the listeners something about one of your experiences. So would you like to share an Aphasia Access, favorite resource or moment? What comes to mind for you?   Jocelen Hamilton  05:28 Yes, well, this is really neat for me to be on this podcast, because it is this podcast that is a favorite of mine, and a major “aha” for me.   Ellen Bernstein-Ellis Well, thank you, just thank you.   Jocelen Hamilton I worked with patients with head neck cancer for about nine years. I then did a major shift and then worked in a graduate training clinic at the University of Iowa. And during that time, previously, when I was at the hospital with a very heavy caseload and working with individuals with dysphagia. And so then switching over and working with individuals with strokes and brain injuries, that was much more communication focused.   And I had this caseload I was taking over with the graduate students and learning about all the current treatment principles and treatment options and all the research that had been developed. It had been probably close to 10 years since I had worked regularly with individuals with neurogenic communication disorders.   I had knew nothing about LPAA. I knew nothing about Aphasia Access, the organization. And I was thinking about this recently, of how I even came across it. But I think probably I was searching one of these treatment modalities, and a podcast came up. So I listened to some of the other podcasts and I was like, oh my goodness, this totally resonated, LPAA. And the podcasts and other resources through the website, totally resonated with me, and helped me better understand what my frustration was within an impairment only based approach, which was in my training and my background, and things like that, to like see a whole different way. So I learned as much as I could. And I tried to share all of that with my students, we were all learning together of how to implement this. So it's really neat to now be a part of this podcast and participate.   Ellen Bernstein-Ellis  07:32 We're so glad you agreed. And I just want to thank you. If there was ever a wonderful plug for membership to Aphasia Access, I think you just gave it. Thank you so much. for that.   Well, let's dive in a little bit more to our topic of the day. We're going to be talking about how and why you both decided to adopt the A-FROM or the Framework for Outcome Measurement of Aphasia by Kagan and Simmons-Mackie to your work with head and neck cancer patients. So I know we usually focus on aphasia, but we're taking this really important tool and talking about how you adapt it. So many listeners are, of course already familiar with the A-FROM. But can you briefly describe the social model framework for our listeners?   Theresa Yao  08:16 I can start with just a brief introduction. I think everyone, if you're listening to this podcast, you are already very familiar with A-FROM, which is based on the World Health Organization's ICF model. They address a few health and social domains such as body structure, function, activities, participation and contextual factors like personal and environmental factors. And like Ellen mentioned before, Dr. Kagan and colleagues, adapted this ICF model to create a very user-friendly framework for the outcome measurement in aphasia. And this becomes the Living with Aphasia Framework Outcome Measures the A-FROM and it has the domain of aphasia severity, which is the body function or impairment level, and then also participation, environment, personal factor. So these are the core concepts of the LPA approach. Thats what we are based on using this A-FROM to adapt it to this Swallow-SWAL-FROM, we call it. The Living with Swallowing Difficulties framework of measures.   Ellen Bernstein-Ellis  09:22 So let's talk a little bit more about this. Jocelen, do you want to share your story as an SLP and how you came to introduce the A-FROM into your work at Stanford in the head and neck cancer clinic?   Jocelen Hamilton  09:37 Sure. So after about a year and a half of working with individuals with aphasia and applying LPAA and using the A-FROM with clients, I then changed gears back to working with people who had neck cancer and we moved to California and I joined the Stanford team and I was back into primarily working with individuals with dysphagia. I just kept thinking about how can I take this model the A-FROM and apply that to working with individuals with dysphagia.   How I would previously use the A-FROM is that Venn diagram. I would just draw it on a piece of paper and start writing my notes on that as I was maybe doing an intake or working with a client. I started doing some of that model just in my note taking and looking at these different domains that might be impacted. And this was just kind of over a series of months, and even a year, where I was thinking about how to apply this and shared it with my patients. Here are some of the things that I'm seeing and what you're sharing with me that shows your participation is being impacted.   Then I ended up talking with our director, Heather Starmer, about an idea of a project—like how can I move this ahead. Theresa had recently joined our team and Heather said, you might want to talk to Theresa about that. She might be interested in doing a presentation on this. And so it was great, because Theresa and I had not yet talked about our aphasia backgrounds together. It was really neat to then work together and begin to apply this with more of our patients. Initially, we kind of struggled with what the environmental domain look like for somebody with dysphagia. And it was neat to talk through different cases with each other to see how it could apply. And then that's where the Swal-FROM came from.   Ellen Bernstein-Ellis  11:39 Wow, that's wonderful that the two of you were at the right place at the right time. And I always feel that the expression “stronger together” seems really fitting in this situation. But Theresa, do you want to share how you brought a life participation perspective into your work at Stanford?   Theresa Yao  11:57 Yes, sure. Because I've always been a big fan of the ICF model. When I was a student clinician in Aphasia Treatment Program, I learned so much from this model, from LPAA, and from Ellen, you. And also, of course, our members in our Aphasia Treatment Program. And I just could see the huge benefit from the LPA approach in the client's life.   So that's why once I started working in real clinics, I always think about this model. And when I started in at Stanford, I started working with the head neck cancer patients. I just feel like so many patients, they live with long term dysphagia, or a sore throat because of the neck cancer treatment they had. And they sometimes just can't get rid of it. They have to live with it. It's just like aphasia. They live with aphasia. And then it just clicked.  I just think that it's pretty similar to the situation that you're living with aphasia, and it's that same impact on patients quality of life, on their participation.   Then I just started thinking, maybe we can do something with this model to help our patients. And then, of course, Jocelen was there, and then we were just talking about her experience with aphasia treatment and LPAA. And we just clicked. That's why we came up with this (ASHA) presentation, and this idea of how to adapt this A-FROM to our Swal-FROM. And then also, we're talking about this because I also started a support group because I feel like people wanted to get connected. They wanted to engage like aphasia group.  They wanted that community to be able to participate, to be able to share. So that's why I think this also helped me to try to initiate this project, this group, so that we can help more people so that they can, they can help each other.   Ellen Bernstein-Ellis  13:56 I really love that you saw the power of group therapy, and you then were able to bring it into a different treatment arena. I really don't remember hearing too much about separate support groups for people with swallowing disorders. I don't know how common they are. But it sounds wonderful that you started one, Theresa. So very exciting. What do we know about the incidence of dysphagia in stroke survivors, and then people in skilled nursing, and from there, head and neck cancer? The reason I ask because I think there's overlap. I mean, you're seeing the dysphagia in head and neck cancer, but we know that it occurs frequently. Do you have any numbers to share about the incidence in stroke survivors?   Jocelen Hamilton  14:39 Yes, so it's about 45% of individuals with strokes experience, some degree of dysphagia and there's been research that's shown 40 to 60% of older individuals in nursing homes have dysphagia. There's even some research out there that one in 25 adults will experience dysphagia. Then when we look at individuals with head and neck cancer, and this could be on the lower range, but one of the particular statistics is 45 to 50% of individuals with head and neck cancer experience dysphagia.   Ellen Bernstein-Ellis  15:11 The importance of considering the whole person (for dysphagia tx) is really going to affect a lot of people that we might be seeing as therapists. And the two of you saw that there was a strong impairment focus in dysphagia management.  Can you give an example?   Theresa Yao  15:27 I can talk a little bit about this. When I was in grad school, I know that most of the things we learned was how to identify the impairment of dysphagia. We learned all kinds of treatments and exercises for dysphagia. We learned like how to modify diet, how to look for aspiration, penetration. Almost everything we learned, and also what we've been practicing in our clinical practice are heavily focused on the deficit and impairments. That's basically how we trained to assess and treat the physiological changes or the deficit. It just, to me, sounds like it's really technical.   I recently just look up the ASHA NOMS, the National Outcomes Measurement System-- that's what we usually use as judgment of whether the patient is making progress or not. They use this particular functional communication measures to see there's like different levels. If you're really looking at this national measurement system, you can see that the wording and the definition of each level is pretty much impairment focus. They mention diet level, safety, efficiency of swallowing, compensatory strategies, or cues, etc. So these are really heavily focused on impairment, but you don't really see like things that relate to participation, quality of life, environment, and those factors. So the consequences that if all the clinicians are just looking at the impairments and not looking at other factors, then you are missing a lot, you're not treating the whole person.   Ellen Bernstein-Ellis  17:11 Well, that's perfect, because that leads me to my next question. Why is it important to go beyond the impairment level measurement with dysphagia?       Jocelen Hamilton  17:24 I would say, because dysphagia is more than a physical difficulty. That's our name for that physical impairment. But it influences more, just like we know, with aphasia, that it's not just how much they can say, what they understand in the different modalities, but how a change in this function in the body influences everything.   So one of the analogies that I can relate to, that I've heard before in terms of looking at accessibility, has to do with like, physical impairments. So if somebody is paralyzed, they can't move their legs, well, the physical therapists are going to look at their legs and see the range of motion, their strength and all of that. But they're also going to think about how are they going to get into their house? And how are they going to move around?   Well, sometimes what can happen with dysphagia, as Theresa already talked about, we're looking just at how does that epiglottis move? What is the airway invasion like? But then are we going to talk about well, what's going to happen? We just had the holiday with Thanksgiving and the holidays now. What are family meals going to look like? I think one of the things that sticks out to me is what would my day to day life and social life be like if I couldn't drink with ease and comfort, I couldn't eat with ease and comfort, if I needed to have special food and special liquids and special strategies? So this impacts so many things within a social realm, and personal realm as well. We'll get into that in more detail as we go. But it's not just about the change in a physical function. How does that influence the rest of our lives? And it really does. There's been research that shows about burden and quality of life and psychological health.   Ellen Bernstein-Ellis  19:08 Well, this really hits close to home for me. I'm going to share with our listeners a personal story, because I've always been very passionate about our field and an advocate for speech language pathologists, but being on the other side of the table, when my husband was diagnosed with terminal cancer, did nothing but increase my own respect and appreciation for the role we play in supporting our clients and their loved ones.   Through this process, specifically with dysphagia, and I want to give a shout out to my husband's speech pathologist at Stanford, Heather Starmer, (and another congratulations to her because she just was made a 2023 ASHA fellow), but I'll just always remember the day that we came in. I know that Heather was set with her treatment plan-- I could already guess what we needed to do for the day. And that plan went out the window because we both signaled, Steve and I, that he was just feeling an increasing burden of trying to manage all of the home tasks we were supposed to do for both PT and speech, and it was just really impacting how he was feeling. And so instead, Heather focused on the personal impact and the quality of life issues that we were bringing up. Steve wanted to be compliant. He wanted to be the best patient there was. But she really listened to him carefully. She brought her best counseling skills to the table that day, and helped us come up with a plan that we could manage in a way that would help us sustain his quality of life as best as possible.   So I really saw, personally, I mean, I saw day in and day out how his dysphagia from his head neck cancer really impacted, hugely impacted, his participation with our family, and his quality of life. I am grateful for this work that you're doing and the passion you feel for looking at the whole person as you assess and treat dysphagia. And thanks to you, I've been reading, since dysphagia is not usually in my wheelhouse as much these days, but thanks to preparing for this particular episode, I was able to read some articles by Rebecca Smith and her colleagues that showed me that there's some amazing work being done looking at this whole topic, so thank you for that. Okay, and taking a deep breath, because that's a story I've been thinking about for quite a bit.   Back into our next question. What is the speech pathologist's role in assessing and addressing health related quality of life and the associated mealtime quality of life? That seems to be talked about a lot in the literature right now. Jocelen, is that you again?   Jocelen Hamilton  21:57 I'm glad you mentioned Rebecca Smith's work. There are actually three papers, I think, that that group, she and colleagues, put out in 2022. And specifically, I'll share a few quotes from their paper The True Cost of Dysphagia and Quality of Life:  The Views of Adults with Swallowing Disability, but in a way, there's a call to action, and she's not the first to mention it. But for us to include social participation, and their overall well-being, as part of our dysphagia intervention. To make that routine, and then to also ask questions: How are you doing? How are the holidays? How are these social settings with eating? I like to ask patients and their family members, and ask them separately, not meaning like individually, within the same session: Are you participating in doing this, the same things that you did before your diagnosis? Or how is that looking? Are you going out to eat as much? What do you miss now that is different and you're experiencing changes in your swallowing.   And it's interesting, because sometimes the partner will say that they miss going out to eat, and they need to navigate feelings like, “Well, I don't feel comfortable eating this in front of my loved one who has difficulty swallowing. I feel conflicted about I get to eat ribs, and they don't.” Those kinds of things. The importance of eliciting these stories, so we can really see what are their challenges, because then we can, like LPAA teaches us, we can engage in this creative problem solving and how we can help navigate through some of these challenges. I think those are a couple of important things that we can look at to support people.   Ellen Bernstein-Ellis  23:45 Thank you. And I just wanted to let our listeners know that we're putting all these references into our show notes. I took some from your ASHA presentations that I attended. So those will all be cited in the show notes.   Well, to expand to the participation, environment, and personal domains, you started to think about using patient reported outcomes or PROs for assessment. Why don't we go through the domains and discuss potential tools and interventions to fill out this framework a little bit more. So what might it look like if you consider participation?   Jocelen Hamilton  24:24 When we're looking at participation, we're looking at these meaningful activities may or may not involve oral intake, but looking at their current levels of participation compared to their pre cancer status. So how often, and in what ways, is someone with swallowing challenges participating? I kind of already talked about that a little bit. And how are the family members doing?   Here's one of the interesting things that I've had patients share here. Sometimes, one of the swallowing strategies that a patient needs to complete is a purposeful throat clear, and a re-swallow, or some patients do naturally their throat clearing, or maybe they're coughing when they're eating and drinking. This is an area where it calls attention to them when they're doing this. And then during the pandemic, we were all super hyper aware is somebody clearing their throat? Is somebody coughing? I've had some patients where they really don't feel comfortable because it calls attention. And people ask, how are they doing?   And also, another challenge being that when swallowing is hard, talking and swallowing is extra hard. When swallowing is challenging, most people need to just do that, where we take for granted that meals are a very social time. So some of those issues can be really challenging. There's also some individuals where their difficulty with swallowing has to do with loss of the bolus coming out and so there's almost changes in appearance, where they may not feel it. Their lip, their chin might be numb, and they don't know that liquids are dripping out, or they have a piece of food sitting there. So, they might be hesitant to go out and participate in different social settings. Even sometimes we have patients where they don't feel comfortable eating with their own family members, where they will eat completely separate from their spouse.   Ellen Bernstein-Ellis  26:28 I am just really struck again about the overlap of some of the things in your head neck cancer patients with clients I see with aphasia. It's really striking. So should we take a moment and discuss how this might look if you consider the environment?   Jocelen Hamilton  26:44 I really didn't address a PRO at all.   Ellen Bernstein-Ellis  26:46 Oh, it's not too late. We can still do that.   Ellen Bernstein-Ellis  26:52 Why don't you go ahead?   Jocelen Hamilton  26:55 Sure. Okay. So we're looking in this interview, right, like gathering information, learning how these things are challenging for them. For patient reported outcomes, PROs, Theresa, and I both looked into different ones. And oh, this one has these questions. And this would fall within this domain. So I'll touch base on a few of them here. And then some of them, they have questions that actually apply to  all of the domains.   So for these, there's one the Swal-QOL, this is probably the most broad in terms of looking at all of the domains that are within this Swal-FROM. It has 10 different quality of life concepts that it has specific questions for. So for this one, there's one subset that's all about social functioning. Some of the questions, they're rating from either strongly agree five point scale to strongly disagree, One of the questions, for example, is “I do not go out to eat because of my swallowing problem.” That really tells you where they're at with that participation, or “Social gatherings like holidays or get togethers are not enjoyable because of my swallowing problem.” So that really hones in on that challenge.   Within our specific area of practice with individuals with head neck cancer, there's a scale called the Performance Status Scale Head Neck Cancer, PSS-HN. Now you might think, how might I use this? I encourage people to be open minded, even though this wasn't validated. And some of these are not validated on individuals who have dysphagia from a different cause other than head neck cancer. It doesn't mean that you can't use it as a way to gather information, engage, and perhaps re administer.   I'm also a big fan of, as people fill this out, having a conversation about their responses as they go to gather information. But with this, the Performance Status Scale, there's a specific rating scale about public eating. So zero means always eats alone. And 100 is no restriction of eating for any place food or company. So they would eat out at any opportunity. Where in-between might be one point on the scale, “eats only in the presence of selected persons and selected places”, or they would eat out but there would be another option,  “eat out, but be more selective about the diet textures and things they would consume in a social setting”, which is common. Some individuals will specifically choose different foods when they're when they're in a social setting.   There's also another PRO, the Dysphagia Handicap Index. So with this one, it's a 25 item questionnaire and it does specifically look at physical, functional and emotional aspects of dysphagia. And so a couple of questions from there that would fit with the participation domain include, “I'm embarrassed to eat in public” and “I don't socialize this much due to my swallowing problem”. Those could give some insight into these areas by selecting some of those questions.   Ellen Bernstein-Ellis  30:08 Well, I'm really glad you caught me. I think I was so struck about the overlap that, thank you for coming back and talking about those PRO's. Are we good? Can we transition to the environment next? What would this look like? What does the Swal-QOL look like if you consider the environment.   Theresa Yao  30:29 When you talk about the environment, it can be factors such as the availability of the appropriate food textures, and oral liquid consistencies across different social settings. For example, if you go out to the restaurant, are there any easier food texture that's available for people with dysphagia? And that's one of the environmental factors.   And then there's a new article from ASHA leader that just came out about dining with dysphagia. So that's actually a pilot program from University of Cincinnati that try to help restaurants to expand their menu options so that they have more choices for people with swallowing disorders.   Ellen Bernstein-Ellis That's amazing.   Theresa Yao Also, another factor that related to the environment is the attitude and level of acceptance or support the people with dysphagia can get from their family, their friends, or even just strangers in their eating situation. So just like Jocelen mentioned, if you're coughing or clearing the throat, what the reaction from other people will be like, -- if they're supportive, or if they're not so. Sometimes these factors can make a patient uncomfortable eating out because of those environmental factors. And then also, the attitude from people around usually can be impacted by culture. Which type of textures they prefer to consume, and how they consume. If you go to a different type of restaurant, they may have different types of food textures, that are specifically for that culture, so that's also another factor.   And then also, on the broader spectrum, is the attitude from the healthcare professionals or the public, because the attitude from healthcare professionals is basically, because dysphagia is invisible, and when you are in the hospital, not everyone can see it. If you have leg injury or arm injury, people can see it. But if you have dysphagia, you can't see it. And then when the health care provider is, prescribing your pills, and if you can't swallow, how can they take the pill? They probably are not aware of this, this type of disability, so they may not prescribe you the right pills.   These are the things that we can consider as environmental factors. And of course, even larger scale, there's health care policies, the service systems, that may impact the people with a dysphagia too, because insurance may not pay all the dysphagia services, or how often can people get dysphagia support or service? So those are all the environmental factors that we may consider.   Ellen Bernstein-Ellis  33:21 I think the importance of this framework is helping us as clinicians to continue to think just broader and more widely about what's impacting the person in front of us. I mean, wow, you are giving us a lot of factors, from the very personal to the broader social policy. And I want us to take a moment and also talk about personal factors, that whole domain.   Theresa Yao  33:41 Personal factors can also be very, very important. And  a lot of things can be involved. So we know that the person was dysphagia may not be the same person, have the same hobbies or same traits, as before their treatment. So that may cause anxiety, or they may feel embarrassed because of their eating habits, or the change of their eating habits. Because we know that eating and drinking is very individualized. Some people, if they're born as a slow eater, they probably are okay with their dysphagia diet or if we ask them to eat slowly and take smaller bites, that's totally fine. But if some people are born as a fast eater, they will have a huge challenge with, if you give them the strategy to eat slow, taking small bites, because that's just not them anymore. They just feel like they're a different person and then they feel disappointed or frustrated if they can't eat as fast as they used to.   And I always share this in my clinic. I  see two patients with similar procedures. One person can feel really happy with their diet. They feel okay because they're always eating soft foods or soups. And then another person just with a little bit of impairment of mouth opening, they feel like it's just really frustrating because they can't bite their sandwiches and burgers. And that just makes a huge difference. But if you're only looking at their swallow study, it's the same, they probably don't have any major impairment, but the impact on the quality of life on their participation, environment, and also personal factor. It's so different. So that's why I think considering a personal factor is really important.     Ellen Bernstein-Ellis  35:38 So you're giving us examples of the things we should be thinking about, you're giving us examples of some of the PROs that might help us measure. But if many of the EMRs, the electronic medical records are set up for impairment focused measures, how can you adapt the documentation to include these other domains? That's always a barrier, or can be maybe, not always, can be.   Jocelen Hamilton  36:00 I think sometimes it can be a barrier. If sometimes the entry is just you have to click certain things, there's not a lot of room for free text. With the EMR that we have, we can have a set template, but we can copy and paste anything in there. So what I did is I took the A-FROM--actually, in the same paper that put out the A-FROM, they put the FROM, Framework for Outcome Measurement, and actually suggest that you could use it for individuals with TBI and called it TBI-FROM.    I took that and put it into a template and have the citation for it there and then added a title. It gives a visual for other individuals reading the note of what I'm talking about. ‘Survivorship beyond body function domain: Dysphagia's impact on personal, participation, environmental domains', so I have that as a title. I have it as this set, we use epic, so I can do dot phrases (Smart Phrases). I can drop that into a note. And then as I go through and document, I have the subtitles of body function, participation, environment, personal factors in as I'm collecting this information. That's how I can organize my note.   I don't do it every single time with every single patient. Sometimes some of our sessions are more impairment focused, like we need to for safety reasons focus on this. Sometimes it's more a whole session all about how are they doing with their personal domain? I had a patient in the clinic today, and he is depressed, and we just had this quick talk of, “Okay, what do we need to do? Can you talk to your primary care doctor? This is common, many individuals with head neck cancer have depression.” But I'll organize my note, getting back to the notes, with those subtitles and putting the information in there. It also is a cue for me, because I keep needing cues and reminders to come back and broaden that focus, instead of always being in on the impairment and you monitor, document, and then monitor, as I'm reviewing back on their notes to see how they're doing across these different domains.   Ellen Bernstein-Ellis  38:19 That is a beautiful example of how you can adapt something. I'm sure a lot of our listeners really appreciate you describing it so carefully, and hopefully will inspire some of them to see what they can do to adapt their EMRs.   A little bit earlier, you mentioned the importance of getting perspective from both the client and the care partner. How does the caregiver or care partner experience fit into the Swal-FROM?   Theresa Yao  38:47 Caregiver or care partners, they play a really important role in this whole journey with individuals with dysphagia. And I'm sure Ellen, you probably were in that role before. Most of the time, it's the caregiver making the meals for the spouse. Making the meals for the patients with dysphagia can be very challenging. Because just the texture, you have to take care, and the taste. I have caregivers talking to me. They told me that they tried their best to make all the foods but the patient didn't eat at all or didn't like it at all. Then they feel super frustrated. These are all the challenges that the caregivers may face.   Dr. Samantha Shune and colleagues, they did a lot of work on this caregiver burden topic. Their study said increased caregiver burden has been associated with the degree of impact that dysphagia is having on mealtime logistics. Family members also report increased anxiety and fear and frustration, stress, embarrassment and social isolation. So these are very two critical things to consider when we're thinking about whole person care, because we can't just care for one person, the patient. But if the caregiver is also experiencing all the stress, all the anxieties, we also need to consider that factor.   Researchers in Australia, Professor Nund and colleagues, they also pointed out that this specific caregiver burden is third party disability. And it's the consequence of that person's impairment, which impacts the functioning and ability of their family members or significant others. That's why we want us to fit this caregiver experience into this Swal-FROM framework. Just adding the family caregiver in all the different domains to support patients with dysphagia. And caregiver can influence four domains. But at the same time, also, we need to take care of, examine, the four domains of the family member or the caregiver--going to check their participation, their environment, and their personal factors. Those are really important, because their health and well-being can be affected by being in the journey of taking care of people with dysphagia. So they're super tied closely. That's why we wanted to fit this framework as well.   Ellen Bernstein-Ellis  41:21 One of the clinical tools I've learned is available is a PRO measure called the CARES, developed by Shune and colleagues, and we'll again put the citation in our show notes. Theresa, could you describe that a little bit more?.   Theresa Yao  41:37 So this is a wonderful screening tool that developed by Dr. Shune and colleagues. It's full name is called Caregiver Analysis of Reported Experiences with Swallowing Disorders. It has 26 items in the questionnaire. And then there's two parts that explore a different aspect of dysphagia's impact on the caregiver. One is a checklist on the behavior and functional changes, and one is a checklist of the subjective caregiver stress. Basically, it's a simple yes/no questionnaire. You can give it to the caregiver and they can just circle yes or no. Then from that, you can figure out what area you may address as an SLP. Or you may want to refer them to a specific team or professionals to address that, because we have limited scope of practice, we can't do everything. But if we can help them to identify the issue and then point them in the right direction, to the right team. That may help a lot.   Ellen Bernstein-Ellis  42:43 In your ASHA presentation you also mentioned the Rome Foundation is a resource and another website that offers skill building around managing serious illness conversations. We're going to put both of those resources into the show notes for people, but we don't have time right now to go into them fully.   But Jocelen, can you address or share what benefits you've seen by adopting this framework? Does it help with goal setting? Does it help with acceptability of recommendations? What have you seen?   Jocelen Hamilton  43:12 I think it's helped me and I feel like it's helped patients and our families have a little more clarity about, okay, these are the areas that are challenging. And again, I'm a visual person, so if I write it out with them, and they're telling me things, and I'm explaining, I get excited about the diagram, and I'm like, you know, see, this seems like an area of challenge. Is there something that you're interested in doing in this area? Are you willing to talk with another person who's gone through this?   So I feel like it really can give clarity, I think, for myself, what you know that A-FROM does, and Swal-FROM now is to not, I professionally can get really hung up on the impairment. And I can't always change that, right? We can't always change it to the degree that we would like. Of course, we would like everybody to have complete resolution, right? And so there can be this frustration and powerlessness with that. And obviously the patients and our family members can be experiencing that also.   And with this broader view, we can say but here's what we can focus on what can we do to have you participate that would make you feel better? What can we do that would help you with your personal feelings? So I feel like it addresses things that matter and we can have more conversations about how is their day to day life being impacted? What are some small steps we can take in a direction that might help them and their families.   Ellen Bernstein-Ellis  44:43 That's beautiful. Thank you so much, Theresa and Jocelen. It has been a pleasure  and I've learned so much from both of you, listening to you apply this framework and look deeply and carefully at quality of life for people with dysphagia. I really appreciate it. Is there anything else you want to add?   Theresa Yao  45:03 I just wanted to add a little bit. So I think it's really important as clinicians to listen to our patients and caregivers, because we need to learn from their experiences, their perspective. And, like we mentioned dysphagia is invisible. I wanted to share one of the quotes from one of the dysphagia support members. He says,  “dysphagia is a label you carry with you inside.” And that's really just so true, because it's hidden. If you go outside, people see like you what you can walk, you can talk, but they don't know that this disability is hidden inside. And I think it's so important to address not just the impairment, but also listen to the patient's perspective. And then help them to address all the domains. I always think that you become a better clinician because what you learn from your patient. So that's all we need to do.   Ellen Bernstein-Ellis  46:08 I can't think of a better way to close this interview. Even though I could ask you several more questions, we could be here for another hour, I just want to thank you for bringing that patient's voice, a client's voice, into the discussion today, so beautifully. And let's end on that note of really learning from our patients' perspectives. So I want to thank you both. And I want to thank our listeners for listening today. And for the references and resources mentioned in today's show, please see our show notes. They're available on our website at www.aphasiaaccess.org. And there you can also become a member of our organization.   Jocelen Hamilton Yes, yes, Do it!   Ellen Bernstein-Ellis Thank you! Browse our growing library 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 Ellen Bernstein-Ellis. And thanks again for your ongoing support Aphasia Access   Resources and References Ariadne Labs: Serious Illness Care Program https://www.ariadnelabs.org/serious-illness-care/serious-illness-care-program/ The Rome Foundation https://theromefoundation.org/   Chen, A. Y., Frankowski, R., Bishop-Leone, J., Hebert, T., Leyk, S., Lewin, J., & Goepfert, H. (2001). The development and validation of a dysphagia-specific quality-of-life questionnaire for patients with head and neck cancer: the MD Anderson dysphagia inventory. Archives of Otolaryngology–Head & Neck Surgery, 127(7), 870-876. Hamilton, J., Yao, T. J. (2023). Framework to Guide Whole-Person Care for Individuals with Dysphagia. 2023 ASHA Convention, Boston, MA. Hamilton, J., Yao, T. J. (2022). Shifting to Whole-Person Care for Head Neck Cancer Survivors Living with Dysphagia. 2022 ASHA Convention, New Orleans, LA. Hickey, E. and Douglas, N. (2021) Person-Centered Memory and Communication Interventions for Dementia: A Case Study Approach. Plural Publishing, Inc. Howells, S. R., Cornwell, P. L., Ward, E. C., & Kuipers, P. (2021). Client perspectives on living with dysphagia in the community. International Journal of Speech-Language Pathology, 23(2), 201-212. Kagan, A., Simmons‐Mackie, N., Rowland, A., Huijbregts, M., Shumway, E., McEwen, S., ... & Sharp, S. (2008). Counting what counts: A framework for capturing real‐life outcomes of aphasia intervention. Aphasiology, 22(3), 258-280. List, M. A., D'Antonio, L. L., Cella, D. F., Siston, A., Mumby, P., Haraf, D., & Vokes, E. (1996). The performance status scale for head and neck cancer patients and the functional assessment of cancer therapy‐head and neck scale: a study of utility and validity. Cancer: Interdisciplinary International Journal of the American Cancer Society, 77(11), 2294-2301. McGinnis, C. M., Homan, K., Solomon, M., Taylor, J., Staebell, K., Erger, D., & Raut, N. (2019). Dysphagia: interprofessional management, impact, and patient‐centered care. Nutrition in Clinical Practice, 34(1), 80-95. McHorney, C. A., Bricker, D. E., Kramer, A. E., Rosenbek, J. C., Robbins, J., Chignell, K. A., ... & Clarke, C. (2000). The SWAL-QOL outcomes tool for oropharyngeal dysphagia in adults: I. Conceptual foundation and item development. Dysphagia, 15, 115-121. Nund, R. L., Scarinci, N. A., Cartmill, B., Ward, E. C., Kuipers, P., & Porceddu, S. V. (2016). Third-party disability in carers of people with dysphagia following non-surgical management for head and neck cancer. Disability and rehabilitation, 38(5), 462–471. https://doi.org/10.3109/09638288.2015.1046563 Shune, S. Moving beyond the isolated swallow: Dysphagia in the context of the shared mealtime. https://dysphagiacafe.com/2015/03/19/moving-beyond-the-isolated-swallow-dysphagia-in-the-context-of-the-shared-mealtime/ Shune, S., Davis, C., & Namasivayam-MacDonald, A. (2021). Contributors to Dysphagia-Related Burden Among Spousal Caregivers of Stroke Survivors. Archives of Physical Medicine and Rehabilitation, 102(10), e65. Shune, S. E., & Namasivayam-MacDonald, A. (2020). Dysphagia-related caregiver burden: Moving beyond the physiological impairment. Perspectives of the ASHA Special Interest Groups, 5(5), 1282-1289. Silbergleit, A. K., Schultz, L., Jacobson, B. H., Beardsley, T., & Johnson, A. F. (2012). The dysphagia handicap index: development and validation. Dysphagia, 27, 46-52. Smith, R., Bryant, L., & Hemsley, B. (2023). The true cost of dysphagia on quality of life: The views of adults with swallowing disability. International Journal of Language & Communication Disorders, 58(2), 451-466. Smith, R., Bryant, L., & Hemsley, B. (2022). Dysphagia and quality of life, participation, and inclusion experiences and outcomes for adults and children with dysphagia: A scoping review. Perspectives of the ASHA Special Interest Groups, 7(1), 181-196.

Being a sports fan and being a woman is not always the easiest road to walk. Although there have been countless teams to pull for, and an endless parade of superstars to be in awe of, for a lot of women that meant watching men, and only men play. Now that doesn't mean that women were not involved in sports. In the world of college basketball, women took to the court for the first intercollegiate women's basketball game, right here in the bay area.  Stanford vs UC Berkeley in 1896, and around that same time in 1895, the British Lady's Football Club played their first match in London. So the fact is, women have always been in the sports universe, but compared to their male counterparts, they've always been more in the shadows. But there has been progress along the way with more eyes turning to women's pro sports teams, and that turns us to 2023. A year that has shown that the appetite for womens sports is growing, and in particular, growing here in the Bay Area. For more on this, KBS Radio's Mary Hughes spoke with Rita Liberti, Professor of sport history  in the department of kinesthesiology at  Cal State East Bay.

Ellie Goldstein We present a selection of tunes from artists with disabilities: a rock band whose members are Deaf, a jazz number about dealing with clueless social service providers, disability pride hip hop, and a xylophone short from Denny Daughters – who also edited and voiced this program. Plus a band comprised of neurodiverse students from Cal State East Bay and more. Great music, great musicians and some relaxing fun. Produced by Jacob Lesner-Buxton. The post Musicians with Disabilities – Pushing Limits – November 24, 2023 appeared first on KPFA.

Fred Roggin guests hosts the first part oh The Bill Handel Show. A new law requires K-12 schools to add media literacy to their curriculum. How to spot fake news. Cal State East Bay offers cannabis online training certification programs. Registration still open. L.A is experiencing another stoppage on the 10 freeway AGAIN! The 1994 earthquake broke the 10 freeway. How L.A rebuilt in record time. The life expectancy gap between men and women widened significantly during the COVID pandemic in the United States.

I'm Ellen Bernstein-Ellis, Program Specialist and Director Emeritus for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA's strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Kelly Knollman-Porter, who is a 2023 recipient of a Tavistock Trust for Aphasia Distinguished Scholar Award, USA and Canada. She will discuss how her interest in auditory comprehension and severe aphasia led to her work on reading comprehension.   Guest bio Dr. Kelly Knollman-Porter is an associate professor in the Department of Speech Pathology and Audiology at Miami University. She directs the Neurogenic Language and Cognition lab, where her clinical research focuses on the development of supports and strategies for adults with aphasia to facilitate reading and auditory comprehension. Her research also explores the subtle reading processing differences exhibited by adults with aphasia through eye tracking technology. Dr. Knollman-Porter directs the Miami University Concussion Management Program, where her secondary research focuses on the development of assessment measures and treatments to manage the cognitive and communication challenges often associated with mild traumatic brain injury. She has over 30 years of experience working directly with adults with acquired brain injury. Listener take-aways In today's episode you will: Learn about how wanting to help clients with severe auditory comprehension challenges motivated our guest to pursue her doctoral degree after 15 years in clinical practice   Consider some of the challenges SLPs face in assessing reading in clinical practice using current standardized measures and learn about some advantages of incorporating a reading questionnaire and close observation for getting a better understanding of your client's individual reading style, preferences, and needs.   Explore the contribution of text to speech (TTS) to the dual modality model for supporting reading success at the book level and some of the critical factors to consider when implementing this strategy with clients.   Investigate how eye-tracking technology can help us gain insight to an individual's reading strengths and patterns. Show notes edited for conciseness and clarity Ellen Bernstein-Ellis  00:10 Kelly, let me just pause and say welcome! Thank you for being here. Kelly Knollman-Porter  01:02 Thank you for having me on the podcast. I'm so happy to be here. Ellen Bernstein-Ellis  01:05 I am so excited you're here today. And as we talked, we always have a pre-meeting where we get to plan what we want to talk about in these podcasts, and as you know, I'm so excited to talk about book clubs and reading strategies. Thank you so much for being our guest today. Kelly Knollman-Porter  02:23 Thanks again, Ellen. And I have to thank you for your foundational work in the area of reading.  You can look back at a lot of the articles that myself or my research team have published and we reference you quite a bit. So thanks for your work also. Ellen Bernstein-Ellis  02:39 Thank you for that kind, kind mention. I was very fortunate to partner with Dr. Roberta Elman to create the Book Connection at the Aphasia Center of California and be part of that body of work. We like to start with an icebreaker to give our listeners a chance to get to know you. I will open by asking you to share how the Tavistock Trust for Aphasia Distinguished Scholar Award has or you think will impact your work? Kelly Knollman-Porter  03:06 First of all, I'd like to just take a moment to thank the Duchess of Bedford and Nicole Campbell from the Tavistock Trust for giving me this honor. I was just so surprised and excited to hear when I was given this award. I had the lovely opportunity a couple of years ago at a Clinical Aphasiology Conference to meet both of these amazing women. I've been so impressed by the work of the Tavistock Trust. It's not just work in the UK, they have spread this out across the globe. They really have done so much to not only help people with aphasia, but also help educate the public about aphasia, help us as clinicians get connected, and as researchers get connected in order to stay abreast of more recent research that's coming out in terms of helping people with aphasia. I am just so thankful and appreciative of receiving this honor from this great organization. But how will it help me? I can honestly say that right now we're in the process of starting a new study  and through the support at the Tavistock Trust, we are going to be able to provide funding to help support these research studies and hopefully get some of these funds back into the hands of our participants. I'm excited to keep that research moving through their support. Ellen Bernstein-Ellis  04:42 That's great. That was a really nice and gracious recognition. Yes, we're so appreciative of the work the Tavistock Trust has done. How about if we open by sharing a little bit about your professional journey? I think you considered yourself a non-traditional doctoral student.   You said you returned to get your doctorate after about 15 years of practice. Tell us a little bit more about what you were doing when you decided to return to your doctorate. And what were your passions that inspired you to return to school? Not an easy decision, I would guess. Kelly Knollman-Porter  05:19 No, it wasn't. I can honestly say I wasn't looking for it. I was very happy in clinical practice. I worked in a hospital for 15 years before coming to academia. I loved working in the medical field. I loved collaborating with other rehabilitation professionals, dieticians and physicians. I was very happy working in these environments. But Miami University actually reached out to me. They were wanting to further develop their adult program and they said, “Hey, will you come to academia and share some of your clinical knowledge and also lead the Miami University Aphasia Support Group?” They knew I had always had a long interest in working collaboratively with people with aphasia and clinically. So they asked me to come. I have to admit, I turned them down a couple times. And then finally, I made the big plunge and said, “Why not try it?” I wasn't really seeking it out. Originally, however, I was reaching a point where I was becoming frustrated with some of the reimbursement issues we were facing clinically. When working with people with aphasia, I sometimes felt like insurance was dictating how much treatment I could provide and how long I could provide it, even though I felt like many people could continue to make progress. I just felt like my hands were tied, and I was restricted. That was frustrating to me. I have to admit, when I came to academia, I was thinking, what can I do in order to explore this further? How can I potentially contribute to the research base in order to provide evidence to show that people with aphasia can continue to make progress, not just months after diagnosis, but 5, 10, 15 years? Because as a clinician, we've all seen it, absolutely. We know that people with aphasia want to continue to actively participate in life activities. And they can, if given the opportunity and the support. So, when I made that transition to academia, I quickly made the decision to go back and get my PhD. Primarily focusing on clinical research, specifically with people with chronic aphasia, Ellen Bernstein-Ellis  07:52 I am sure that there are listeners out there who may be sitting on that fence as well thinking, Should I do it? Should I pursue this doctorate? I just want to acknowledge and honor the challenges of being a doctoral student, especially while also being the parent of young children, but I just think it should be recognized. I was wondering, what was the best advice you got from your mentors? Because I'm sure you reached points in that process where you wondered, was this the right thing? And I want to support listeners who are out there thinking, “Can I do this? Should I do this?”  Kelly Knollman-Porter  08:30 It definitely required a team. When I decided to go back get my PhD, I had a 10 year old and a five year old. That just requires a lot of work, going to things after school for them and keeping your family a priority, but yet still working full time getting your PhD while commuting. And coming back, a special shout out to my spouse, who helped me keep all the balls up in the air. My family came along. I had amazing support from my in-laws and my parents, in terms of helping pick up the kids when needed. But I'm not going to lie, it was a challenge. And there were times when I wanted to throw in the towel. I wanted to say, “You know what, this is just too much for me to do right now.” But I did have people that came alongside me, that kept encouraging me, saying “It's okay, stay the course, what you're doing is good, and don't lose faith.” I have to give credit to Aimee Dietz. Dietz was my dissertation chair and she was very encouraging, supportive, and understanding that I was a mother and I had a life outside of PhD and work. She respected that. It was funny. She ended up getting pregnant at the same time and had her child. So I think we kind of supported each other through that. But one thing she said to me that I always remembered because she knew I loved clinical practice. I was like “Amy, maybe I should just go back to clinical practice?” And she said, “Kelly, you realize that your research is going to touch more people then your clinical practice.” Not downplaying clinical practice at all. But she said, “Your research has the potential of spreading information not only across our small geographic Midwest area, but also across the country and across the world.”  Ellen Bernstein-Ellis  10:35 What a wonderful piece of advice. No surprise, what a lovely mentor to have. Kelly Knollman-Porter  10:39 Absolutely. I think I told you this before, there was one very difficult day that I was having. My family was sitting around the dinner table and the house was a mess. I had grading to do and I said to my husband, “I'm going to quit, I'm not going to get my PhD.” And my 10 year old daughter was sitting there and her name's Anna. And she said, “Mom, what would you say to me if I told you I was going to quit something?” Ellen Bernstein-Ellis  11:11 What a wise 10 year old. Kelly Knollman-Porter  11:13 And at that moment, I realized that people were watching and other women might be watching and saying, “Hey, stay the course, persevere.” I am proud enough to say that that same daughter just recently graduated from vet school with her DVM and I hope that my perseverance helped her persevere also. Ellen Bernstein-Ellis  11:36 I love that story. Thank you for sharing it with our listeners today. Your doctoral work originally focused on the treatment of auditory comprehension in severe aphasia. I know that was one of your clinical loves. I want to recommend to our listeners since we can't cover everything today, your 2018 article,  we'll put it in the references of the podcast show notes, about intensive aphasia auditory comprehension treatment. Why don't you share how you became involved in reading comprehension? Because you started out in this auditory comprehension world, right? Kelly Knollman-Porter  12:13 Absolutely. Well, again, I really feel like comprehension is instrumental. There's been some work done that says people with auditory comprehension deficits, the more severe the auditory comprehension deficits, the greater risk of decreased success in rehabilitation outcomes. So I always had a passion for exploring auditory comprehension and different potential treatments to facilitate comprehension with people with chronic aphasia. But Aimee Dietz gave me that opportunity to do that. But it was interesting. During my dissertation process, I actually found out that my son had a pretty significant dyslexia. We kind of suspected it with him growing up, but then when you hit kindergarten, you really start to see the reading challenges kind of surface. And I remember talking with Amiee about reading. During that time, we were able to get my son connected to a great reading program that explored different compensatory supports to help facilitate any reading process, one of which was text to speech technology. And at that time, Amiee was collaborating with Karen Hux from the University of Nebraska on a potential reading study. And she says, “You're so interested in reading right now and you're interested in aphasia? How about combining those two loves, and getting involved with a reading study?” And the rest is history, that kind of landslide into a lot of research collaborations over the past 12 years that I've been involved with. But my son Eric did inspire that because seeing his success with text to speech with dyslexia, it made me think, why not text to speech with people with aphasia? What about that dual modality presentation?  Ellen Bernstein-Ellis  14:15 That's great. I also think you're showing us yet again, how often our personal journeys inform our research and clinical paths. I think that's a beautiful example. Reading has been repeatedly shown to impact quality of life for individuals with aphasia. They tell us that so often, but it's often challenging for clinicians to allocate the limited clinical time to assessment and treatment. Reading treatment takes a while to do so. I feel like I'm asking you to address the million dollar question here. But what are your recommendations on how to manage this challenge? And what are some of the challenges in assessing reading? I've alluded to the time, but why don't you elaborate? You've done a deep dive here. Kelly Knollman-Porter  15:06 Absolutely. And it is challenging because first and foremost, I find that a lot of our standardized assessments will try to tap into assessing the reading challenges, but it really only scratches the surface. I haven't found a really great standardized assessment that I can use and rely on that really helps direct my treatment course, You have to use a variety and you have to do some that you just make up on your own based on how exactly that person is responding. But generally, if I'm going to assess, I first have to start by having a really in-depth conversation with the person with aphasia or their care partner. First of all, you have to find out if reading is of interest to them, of course,and the types of reading materials that they like to engage with. I think about people in our Miami University aphasia support group. I have one individual who would read a novel a week prior to her stroke. I had another person in our group who said to me, “Kelly, you know what? I never read books.” It was not something of interest to him. You have to treat those two people very differently. You have to find out what their interests are. That's always where I start--with just an interview and talking with them about aphasia. And then I talked to them about their interests in terms of “Are you comfortable with technology? Are you not comfortable with technology?” I actually give them reading tasks. When I assess reading, I of course, start at the word level, and then creep up to the sentence level and add more complexity and length. But when I give them a paragraph to read, I don't just look at, did they get the answers correct or incorrect? I'm not only looking at accuracy per response, but how long does it take them to process that multi sentence information? So for example, if I gave them a four sentence paragraph to read, I watch them very closely to see how they're attacking that reading task. And that doesn't take that long out of your assessment time. I watch where their eyes are moving. I watch to see if their eyes are regressing back within a sentence while they're reading. And if I notice that they're really struggling, I also say to them, “Tell me, what are you having difficulty reading right now? Can you point to the words that you're struggling with? Can you point to the words potentially that you're skipping? Tell me about this process, and try to tell me how it's different from the way you read before.” And sometimes we underestimate what people with aphasia can tell us about their reading experiences. I have found that a lot of the people that I have worked with can be very specific about what they're having difficulty with. Now, there's always that small population that might not have the awareness. But it's still the majority of them that can. I was just working with a gentleman last week, and I was like, “Show me what you're having difficulty with.” And he pointed to the words that he struggled with, and that helped me understand. Are you having more difficulty with content words? Are you having more difficulty with verbs? Are you having more difficulty with articles? What is it about this process that's  making it hard? Because many times people with aphasia can read that paragraph very slowly and very carefully and end up with a high percentage accuracy in terms of performance, but if it's taking them five minutes to read a four sentence paragraph, it is too fatiguing, it's too much. And they're going to end up avoiding getting back to reading things that they want to read for pleasure. Ellen Bernstein-Ellis  19:18 Right, because the burden is too high. Kelly Knollman-Porter  19:21 Because the burden is too high. I really feel like if we can look at these things clinically, we just need to take a little bit of time to talk to the people and actively watch how they're attacking that reading task. Ellen Bernstein-Ellis  19:37 If I circle back briefly to the impact reading has on quality of life, your 2015 article does a beautiful job of describing the contribution of access to reading to the quality of life. This was a qualitative study that interviewed six individuals with aphasia to hone in on their individual reading preferences and supports. But before you describe these results, I'd like you to share with the listeners your reading assessment survey. You just talked about listening carefully and asking questions. I think that's harder than you're making it sound. But you've given us this tool that is an amazing springboard. Many of us probably have just informal tools, lists of questions that we've developed on our own over time. But in that article, you actually attach this beautiful, clinical tool. How did you go about developing this initial reading survey that you do? Thank you for including that in the article. That was wonderful. Kelly Knollman-Porter  20:46 Oh, absolutely. A special shout out again to my research team, Karen Hux, Sarah Wallace, and Jessica Brown. We spent many hours of our meeting time creating this questionnaire. Ellen Bernstein-Ellis  21:02 But that's great, these great clinical minds all coming together, embracing this questionnaire, planning to put it together, that's beautiful.   Kelly Knollman-Porter  21:10 Absolutely. I have to encourage everybody to try to get to be a part of a research team. We're stronger together than we are in isolation. I have the utmost respect for each of these women. They have taught me so much. We each brought to the table unique strengths. All four of us are unique in our own special way. And like I said, I've learned so much from them. But we bring that when we're creating our research studies. We always start with a rough draft. And then we question each other. We say, well, I've seen this clinically, or I think about this from a research perspective. I definitely brought to the table my clinical experience in working with people with aphasia, but then Sarah did also, so too Jessica, and so too Karen. Just working through what we saw were challenges that people with aphasia might experience and what we've found clinically to develop that questionnaire. Ellen Bernstein-Ellis  22:11 So, you created this questionnaire with a variety of sections that helps someone systematically go through understanding that person's reading preferences and strengths and try to get a sense of what their profile is, right? That's your starting point. And then you take it from there. Kelly Knollman-Porter  22:28 Exactly. What do you like to read? Do you like to read text messages? Do you like to read novels? Where do you like to read? How do you like to read? Do you like to hold a book versus do you like using technology? What are all the different ways that you personally like to read? I can honestly say one thing that we learned from the qualitative study, I know I'm jumping to that, was everybody has their own unique reading experiences. There's not going to be a one size fits all approach to the assessment or the treatment of anyone with a reading challenge. You will not find a cookbook approach to this. You have to do it on an individual basis. And if you do, I think the outcomes are going to be stronger. Ellen Bernstein-Ellis  23:20 Let's circle back to that 2015 article, we'll jump back and forth. Could you describe some of the key takeaways from that study? Maybe you could explain why you think that dual modality model, which we started to allude to earlier with text to speech, is so important to supporting reading success? That's part of my takeaway from that 2015 article.     Kelly Knollman-Porter  23:45 I wish I could tell you that in 2014, when we were initially planning this qualitative research study that we were thinking about TTS. I was from a distance, but we weren't actively looking at text to speech (TTS) at that time. But one thing that my colleagues and I felt we had to do first, if we were going to explore reading research more, we had to go to the people with aphasia to learn what they wanted. So, before we took our own personal opinions about what we thought people with aphasia needed in terms of reading, we thought we should start with a qualitative study and find out what they wanted and what they needed. And you know what, that was such an important starting place for our research. Because again, we found each of the people that I interviewed had their own unique needs, but yet every single one of them passionately wanted to read. They wanted to get back to reading and they wanted to read books. They wanted to read books about romance and they wanted to read about horror stories. I'll never forget one of our participants. She told me that she liked to read Stephen King novels. She laughed and says, “Kelly, you couldn't handle that.” And it's true. I don't like those scary stories. But, they wanted to read. They want to learn more about aphasia, but they just want to read what everybody else is reading. Ellen Bernstein-Ellis  25:23 You want to read what your peers are reading.  I will always remember this story where one of our book club members at the Aphasia Center of California was so excited at a book club meeting because he had taken the book that we were reading, I think it was Shadow Divers at the time, to the golf course. No one usually approached him and chatted with him. But he actually had a couple guys come up when they saw the book and engage with him in discussion. So it became this beautiful bridge of connection. I can't communicate as well, but they had this awesome commonality to share. It was just what they were interested in. So that example of just wanting to do what your peers are doing because there's such joy in being part of that reading community. One of my favorite parts of that 2015 article is also the clinical reading framework that's on page 19. It helps a clinician start to think about how to implement reading supports and strategies. I think that is a beautiful contribution. Could you describe that model for our listeners?  Kelly Knollman-Porter  26:30 Sure, of course, you start with the questionnaire, you start with asking them what they want to read and what they like to read. And then you do an informal assessment. And then, as we walk through that framework, you establish personally relevant goals, based on their unique reading needs and experiences. But then as you're considering treatment, you have to think about lots of different avenues that you can potentially go down. And that's going to be based again on their needs. Specifically, are they interested in technology? If they're not interested in technology, then that's going to take you on one route, but if they are interested in technology should you consider text to speech? If they're not interested in technology, will picture support facilitate their understanding of the written text? So basically, looking at personalizing the treatment approach. And going through a process of trial and error, looking at the length of the reading that should be used, or the complexity of the reading materials, and again, gearing treatment towards their unique personal needs. That's kind of what it's all about. Ellen Bernstein-Ellis  27:50 You really provide a very clear framework, and I think that always helps us with our clinical thinking-- to know what questions to ask and how to break it down. A wonderful follow up to that 2015 article, is the 2022 article that compared comprehension, processing time and modality preferences for individuals with and without aphasia when reading books using text to speech. Could you start by explaining or describing what motivated your work to be at the book level?  So often, we start with words and then sentences, but here, you took this big, big leap and started at the book level. Kelly Knollman-Porter  28:31 I'm going to swing back to my 2015 article real quick, if that's okay. Because I have to admit, one of the participants in that study gave us direction to go the TTS route first. So, of those people that we interviewed in that initial qualitative study, only one of them was reading more after his stroke than before his stroke. And this gentleman, he was in his mid 40s at the time, and very into technology. I remember when we were doing the interview with him, he was adamant. He was like, “Kelly, text to speech works!” So of the six people that we interviewed, he was the one that inspired us to start looking at text to speech more-- that eventually led to all these other studies. Because he said, “I've read a novel.” He laughingly told me that he read Fifty Shades of Grey, and he also was able to get online and, through text to speech, order things through Amazon or different mechanisms like that. We started exploring text to speech technology and the degree to which it could help from a dual modality presentation. So that kind of got us on that track. My colleagues and I explored the use of text to speech at the sentence and paragraph level to see if it helped. We really had mixed results, I have to admit. We were finding that sometimes it helped some people, but it didn't help all people. And we were almost getting a little frustrated with what we were finding, and we were feeling that we were hearing from clients. I have to admit, I've run into clinicians all over the country and they're like, “Yeah, text to speech works.” But we weren't seeing those strong outcomes with our research. It was right around the pandemic time. I said to my colleagues, “We're gonna have to take a big leap here with our research, instead of just looking at the sentence and paragraph level, why don't we just jump to books?” We know that people with aphasia want to read books. We have a feeling that the text to speech might help them at the book level. We know that this research is going to get a little muddy, there's going to be a lot of variables that we can't control for, but let's try to do a study based on what people with aphasia want. So we took this big leap of faith and did this book study. And this one was where we decided to control many factors in terms of having them read a certain section and then using text to speech and then read another section and then use text to speech for another section. There was a lot involved in it. But that's ultimately why--because people with aphasia told us that they want to read books. Ellen Bernstein-Ellis  31:45 I know we're going back and forth. But these topics are all integrated. Let's take a moment and ask you to talk a little bit more about text to speech and what you've learned about using it for individuals with aphasia. You started to again allude to some of the things, particularly the variability across people. There are pros. And there's cons. Before we dive in, I want to refer our listeners to this nugget, this beautiful little gem, that I found just last week. It was in the March 2023 ASHA Leader, and it's with your co authors Sarah Wallace and Karen Hux. The article lays out some of the considerations to take when introducing a client to text to speech technology, like how to do it in a systematic way, how to explore and allow for the individualization that is necessary, that practice is necessary. It's a great clinical perspective article. We'll put the link in our show notes. But what do you want to say about the lessons learned with text to speech? Kelly Knollman-Porter  32:47 Absolutely. It takes practice when you're considering using text to speech with a person with aphasia. First of all, you have to see if they're interested in using technology. If they have access to technology, that's your first question. And then, can they access the device physically? So lots of things have to be taken into consideration. If they show interest in using the technology, you need to sit down with that person with that technology that they choose. If that's an Android device, if that's Mac device, if it's a laptop, if it's an iPad, if it's a smartphone, you have to bring their device to the table and see to what degree they can access the necessary text to speech applications that are needed in order to use it successfully for reading tasks. If they cannot access it, then you need to take a step back and create an instruction manual to help with pictures and aphasia friendly formatting, in order to give them a step by step method to access that technology. So often, we start to use technology intuitively. We think everybody else should be able to use it that easily. But we have to make sure that the person can turn the device on. A lot of older people also have decreased circulation in their fingertips and sometimes when touching the app, they can't get it to trigger, so they have to warm up their fingers before accessing it. Ellen Bernstein-Ellis  34:33 I'm so glad you mentioned that because I can actually personally relate to that one. Because these nuances are so important. , I don't know if they're nuances, these challenges that you may not realize until you actually sit down and work with the person. Kelly Knollman-Porter  34:48 Absolutely. So when I know someone is interested in this, I always start with pictures--a detailed instruction book that shows you step by step what you have to touch in order to access that TTS system. I put it in a binder with a plastic coat covering over the top, so that they can have that manual sitting right there by their device. And then we practice with it. We say, “Okay, now I'm going to show you how to access this text to speech technology. Now you show me if you can do it using your manual.” And we go back and forth. We're not even to the reading part yet. You have to first access the system. If they show that they can then access it, then we actually get into playing with the different TTS features. So anything, from the speed of the voice presentation on TTS is crucial. You have to find that ideal speed for that person that's not too fast, and not too slow. That's going to help their processing. So, playing around with the speed. Also playing around with a voice. Do they want a male voice? Do they want a female voice? Do they want one with an accent? You'd be surprised people are very particular about the voice that they want. And then, also exploring the use of highlighting. Do they want to have highlighting? At the single word level? Do they want each word highlighted as it's read? Or do you want the full sentence highlighted? Or do you want no highlighting, because some people don't like the highlighting. So there's a whole sequence of steps that you need to go through in order to determine if someone is going to be able to access the TTS system, and then, if they're going to be able to use it successfully. And that does take time. And it takes experimentation and setting up a system for a person, letting them try it on their own. And then having them come back and ask, “Okay, what did you like? And what did you not like? Can we change this at all?” So it can be adaptive, it might change over time. We don't want to just give one structured TTS system to all people. It won't work. Ellen Bernstein-Ellis  37:17 I think that dovetails beautifully with my next question, which is, if we circle back to that 2022 article, I was struck by some of the variability across participants and that you were able to embrace that as a researcher and look at what that means.  The variability across people reinforced your approach of taking a strength-based model approach when assessing reading performance for your clients. Are there other outcomes you want to highlight from that study? Kelly Knollman-Porter  37:49 Absolutely. One thing we found overall, is that for the group as a whole, TTS technology helped them process the written materials faster, without compromising comprehension. I'm gonna say that again, so they could access and process the written information faster, without compromising comprehension. For some of them, that was huge, right? Because they were able to read that book with less time, and hence less fatigue-- Ellen Bernstein-Ellis  38:27 ---that reduces that burden we were talking about earlier, right, that sense of fatigue and burden.  However, so keep going. I'm sorry. Kelly Knollman-Porter  38:34 So we found it helps process the information faster. But as a group overall, we found that it did not improve their comprehension. And that's been kind of the thorn in our heel, more like, why is this text to speech not facilitating comprehension? Because if you look at the theory on dual modality, if you're presenting something auditorily and through writing, that should facilitate comprehension, right? But we weren't seeing that with all participants. Now, some of that could be the varying degrees of complexity of their unique type of reading problem that they had.  Then we did have a couple people that actually did show improvements in comprehension.  We had one participant that had a 20% increase in comprehension with TTS compared to the read only condition. We had another person with like a 10% increase. So this works for some people, in terms of facilitating comprehension, but not all. So we felt like we're getting close, but we're still not quite there. And that's why we're needing to continue to do more research.   Ellen Bernstein-Ellis  39:50 I just want to take a pause.  This research was all done during COVID. I want to thank you for how clearly you describe the training and materials needed for this study in that article. I have watched some of my colleagues trying to do research during COVID. They did some incredible things. Looking at that article made me wonder how did you do that?  I want to shout out your tenacity in accomplishing this during COVID. I think you mentioned that it gave you multiple “front porch opportunities” to solve tech challenges, because you had to go to the house of your participants, literally sit on the porch and try to fix the iPad, or the Kindle, or the whatever, and hand it back to them. So thank you for just hanging in there during a time when it was really hard to do research. I'm looking at the time, and I want to make sure that we get to your eye fixation behaviors and processing time in individuals with and without aphasia article. I've just covered a lot at the moment. Was there something you wanted to reflect on in terms of your “porch moments”  before we jumped to the eye fixation study? Kelly Knollman-Porter  41:11 I think as a speech language pathologist, it's kind of in our blood that we have to be very adaptive and flexible. Sometimes you have to jump in the car and drive and sit on the porch, especially. This is another challenge with using technology, if an update happens, and it totally changes the formatting of an application you're using all the time. Now, if a person with aphasia cannot always adapt to that, I would get a call, “Hey, Kelly. Something's popping up here. And I can't get rid of it.” So I would just hop in the car, and I'd say, put everything on your front porch. I will be there. I'm just going to sit on your front porch, and I will deal with the update. Ellen Bernstein-Ellis  42:02 That could be cold in Ohio. I'm picturing you sitting there with gloves and in a coat trying to fix things. Kelly Knollman-Porter  42:11 Yeah, that was about it. But that's our skill as speech language pathologists. Ellen Bernstein-Ellis  42:17 You showed a lot of dedication. You keep giving a shout out to your team and your lab.     Kelly Knollman-Porter  42:24 I have a special shout out to Mackenzie Pruitt, who worked on that study. She was a masters level student, and she was right there in the trenches with me. I have a great team. Ellen Bernstein-Ellis  42:35 I want to go back to this eye fixation behaviors study. While we're not likely to be able to assess eye fixation in daily practice because the equipment and technology is beyond what we would have in our clinics or private practices, but your results really hold clinical significance for understanding reading, processing strengths and challenges. Do you want to describe some of the highlights from that study? Kelly Knollman-Porter  42:59 I think one of the biggest frustrations when you work with someone with reading challenges is you really are not 100% sure how they're processing the written text. We're assessing them, we're watching them, we're seeing their response to the questions. But what are you having difficulty with? You can ask questions, you can watch their eyes clinically. But one thing that eye tracking technology has that I'm grateful for is, it showed me how people with aphasia process written text. And we wanted to specifically not just look at the word level, there's some great research out on word level processing and sentence level processing. But we wanted to take a big leap and look at multi sentence processing. So what are those eyes doing? What did they fixate on? What are they regressing to, and again, I'm going to give another shout out to Drew Bevelhimer. He was also a master's level student that was working in my lab at the time, who, again came alongside me to help get this eye tracking technology going. This really did show me how unique the reading challenges that people with aphasia have when reading multi sentence information. We specifically looked at how often they had within word regressions, like within a longer word within sentence regression--so when their eyes look back to another word within the sentence, and then how often they look back to a previous sentence. And one thing that that really showed us is with the use of text to text to speech technology, their numbers of regressions significantly decreased. So they did not have to regress as much while reading, which again, resulted in a decrease in processing time. Another thing that this study showed, which I and my colleagues thought was really interesting, we actually brought in a group of neurotypicals to do this study also. When we used the default text to speech voice rate,  we actually found the opposite results with neurotypicals. When using text to speech, set at that default speed, like right around 150 to 180 words per minute, they actually had more regressions with text to speech than in the read only condition. Ellen Bernstein-Ellis  45:39 So, you have to match the speed with the person. Is that where this is headed? Kelly Knollman-Porter  45:43 That is exactly where that's headed. It really reinforced to us how you have to consider the speed of that text to speech voice. Because if you do not have the appropriate speed, it can actually have some detrimental effects in causing more regressions. That's one thing, looking to the future, that my colleagues and I are going start looking at-- exploring how to get that synching better in terms of the eye movements with the rate of speech. Ellen Bernstein-Ellis  46:17 So is that is next in your research, where you're headed, Kelly Knollman-Porter  46:21 That's where we're headed., Ellen Bernstein-Ellis  46:23 I'm going to look forward to that. I just want to say that your body of research on reading and reading comprehension, and supporting and using strategies and understanding the patterns and challenges that people with aphasia have and how they get them back in the game to support them. I just think it's such a valuable contribution. I really appreciate this beautiful body of research. And there was another March 2023, ASHA Leader article, besides the one on text to speech, that describes how reading impacts return to work. It's an article that tells a story about your efforts to support a teacher who was working to return to the classroom. I'll put that link in the show notes too, because it's a beautiful collaborative, “we're going to do this as a team” story. And it wasn't easy. But it was very much supporting the individual goals and journey of your client. Do you have any parting advice as we wrap up for clinicians who are going to assess and work with reading with their clients? That's what this whole show has been about. But what else do you want to add we end?     Kelly Knollman-Porter  47:36 Don't be afraid to explore reading. I know it seems intimidating and overwhelming, because it is challenging to figure out what's specifically the problem, but I can honestly say that if you invest some time in it, the outcomes are going to be worth it for your clients. I look to some books studies that I've done here within our Miami University aphasia support group and, and I have many members that prior to the book club study that I did, had not picked up a novel for 15 years since their stroke, and through adaptive materials, and again, shout out to Roberta Elman's work in the Book Connection materials that her and her group have created. We've used them a lot here at Miami University. But through those adaptive materials that she's created, she's opened up a world of opportunity for people with aphasia to be able to access books. Giving people that opportunity to get back to reading materials that they'd like to read is just really rewarding. Ellen Bernstein-Ellis  48:55 Thank you so, so much for this conversation and for all the work you're doing. And we'd like to close with one kind of broader, big picture question. Kelly, if you had to pick only one thing that we need to achieve urgently as a community of Life Participation providers, what would that one thing be? Kelly Knollman-Porter  49:23 When we talked about this question, I was slightly discouraged because my ultimate reason for going and doing research was to provide research that will lead to greater reimbursement of services for people with chronic aphasia.  I hate to say it, but here are 15 years later, that's still my big takeaway point. We need to find better ways of helping people with aphasia in the chronic phases get reimbursement for services that they so desperately need. We also need to talk to clinicians across the country. We have to be very careful in terms of how we give services to this population. They can still make progress. They can still make gains. We just need the support in order to make that happen. I'm just going to throw one other thing out there. This pertains to the ASHA Leader 2023 article for the teacher that was trying to get back to work. We need to find more opportunities for people with aphasia to still have part-time jobs without losing their benefits, because they're caught between a rock and a hard place. If I go back to work a little bit, I'm going to lose my benefits. I remember in that article, Christine Bowles, who we interviewed, shared working full time is too hard, but I still have more to give. I still have more to give. I'm not done yet. I'm only in my 40s. Why can't we give people with aphasia more opportunity to work without losing benefits?  Ellen Bernstein-Ellis  51:09 Thank you for that message. I think it's critical and one that a lot of people face and think about. So thank you for bringing that up. And for participating today. It's been a wonderful opportunity to talk about your work. Your passion and excitement comes across so much. And I'm going to thank our listeners for listening today. And I just want to remind that our references and resources mentioned in today's show, just see our show notes. They're available on the website, www dot aphasia access.org. And there you can also become a member of our organization and support the podcast and all the other great work that's being done by aphasia access, and you can also browse our growing library of materials and find out about the Aphasia Access Academy. And if you have an idea for a future podcast episode, email us at info at Aphasiaaccess.org. For Aphasia Access Conversations. I'm Ellen Bernstein-Ellis. And thanks again for your ongoing support aphasia access   References and Resources The reading intake questionnaire discussed in this interview, is accessible here: https://aphasiaacc.memberclicks.net/assets/docs/Reading%20History%20Questionnaire-Knollman-Porter-AphasiaAccessPodcast.pdf   To see examples of adapted book club materials mentioned in this episode, go to: The Book Connection on the Aphasia Center of California website: https://aphasiacenter.net/the-book-connection/   Hux, K., Wallace, S. E., Brown, J. A., & Knollman-Porter, K. (2021). Perceptions of people with aphasia about supporting reading with text-to-speech technology: A convergent mixed methods study. Journal of communication disorders, 91, 106098. Hux, K., Knollman-Porter, K., Brown, J., & Wallace, S. E. (2017). Comprehension of synthetic speech and digitized natural speech by adults with aphasia. Journal of Communication Disorders, 69, 15-26. Knollman-Porter, K. (2023). Navigating a Job's Language Demands After a Stroke. Leader Live. The ASHA LEADER, 28(2), 42-46. Knollman-Porter, K., Bevelhimer, A., Hux, K., Wallace, S. E., Hughes, M. R., & Brown, J. A. (2023). Eye Fixation Behaviors and Processing Time of People With Aphasia and Neurotypical Adults When Reading Narratives With and Without Text-to-Speech Support. Journal of Speech, Language, and Hearing Research, 66(1), 276-295. Knollman-Porter, K., Brown, J., Hux, K., Wallace, S., & Crittenden A. (2022).  Reading comprehension and processing time when people with aphasia use text-to-speech technology with personalized supports and features.  American Journal of Speech-Language Pathology, 31, 342-358. Knollman-Porter, K., Dietz, A., & Dahlem, K. (2018). Intensive auditory comprehension treatment for severe aphasia: A feasibility study. American Journal of Speech-Language Pathology, 27(3), 936-949. Knollman-Porter, K., Hux, K., Wallace, S. E., Pruitt, M., Hughes, M. R., & Brown, J. A. (2022). Comprehension, Processing Time, and Modality Preferences When People With Aphasia and Neurotypical Healthy Adults Read Books: A Pilot Study. American Journal of Speech-Language Pathology, 31(6), 2569-2590. Knollman-Porter, K., & Julian, S. K. (2019). Book club experiences, engagement, and reading support use by people with aphasia. American journal of speech-language pathology, 28(3), 1084-1098. Knollman-Porter, K., Wallace, S. E., Brown, J. A., Hux, K., Hoagland, B. L., & Ruff, D. R. (2019). Effects of written, auditory, and combined modalities on comprehension by people with aphasia. American Journal of Speech-Language Pathology, 28(3), 1206-1221. Knollman-Porter, K., Wallace, S. E., Hux, K., Brown, J., & Long, C. (2015). Reading experiences and use of supports by people with chronic aphasia. Aphasiology, 29(12), 1448-1472.   Wallace, S. E., Hux, K., Knollman-Porter, K., Patterson, B., & Brown, J. A. (2023). A Mixed-Methods Exploration of the Experience of People With Aphasia Using Text-to-Speech Technology to Support Virtual Book Club Participation. American Journal of Speech-Language Pathology, 1-24.   Wallace, S. E., Knollman-Porter, K., & Hux, K. (2023). How Text-to-Speech Aids Reading for People With Aphasia. Leader Live 28(2), 52-53. Wallace, S. E., Hux, K., Knollman-Porter, K., Brown, J. A., Parisi, E., & Cain, R. (2022). Reading behaviors and text-to-speech technology perceptions of people with aphasia. Assistive Technology, 34(5), 599-610.  

Episode 118: The Power Of Your Thoughts In The GymIn this episode, Robyn and Ben interview Dr. Kristen Gustafson on how your thoughts impact the gym. Dr. KG is a professor at Cal State East Bay. This podcast examines how we perceive things and they impact ourselves and our performance in the gym. Check out the highlights  below: The Triad of Thoughts, Feelings, and Behaviors KG explains cognitive distortions We think about thinking Things are not always as you perceive Don't discount the positive We are not mind readers or fortune tellers You shouldn't should  Ways to reframe your thoughts Seek help when you need it. And it is better to ask for help Resources like Betterhelp.com and calling 988 WE CARE ABOUT YOU! AND WE ARE HERE TO HELP Hopefully, this podcast gives you some new ideas on how to approach your perceptions and thoughts in the gym. If you have more questions or want more information about KG's work, your thoughts, and how to use these tools in your life, then reach out to your favorite coaches.Have a listen, and as always give us some feedback and ask us questions!

Episode 117: Feelings! What To Do About Them In The Gym?In this episode, Robyn and Ben interview Dr. Kristen Gustafson on how to use your feelings in the gym. Dr. KG is a professor at Cal State East Bay. This podcast examines how we can use our feelings to better ourselves and our performance in the gym. Check out the highlights  below: In glass case of emotion KG is an amazing CFO member The Triad of Thoughts, Feelings, and Behaviors The Feelings wheel Feelings matter It is ok to be scared Anger can be a tool When joy might not be what you think How to channel feelings into success  Hopefully, this podcast gives you some new ideas on how to approach your feelings in the gym. If you have more questions or want more information about KG's work, your feelings, and how to use these tools in your life, then reach out to your favorite coaches.Have a listen, and as always give us some feedback and ask us questions!

“Now that I'm much older I realize, I was never really lonely. There was always people around me in my life - my family, my friends - that I could have reached out to and built a relationship with.” Jordan Barragan This TOTM Face to Face conversation is between Wenceslao and Jordan Barragan. Wenceslao is the Ever Forward Club's Youth Host. You can get to know more about him in episode 123. Jordan  is currently a student at Cal State East Bay, and he also interned at the Ever Forward Club thi past summer. As they share their masks, play our Adventure Card Game, and discuss career paths, poetry, the future, and what it means to be truly authentic, Jordan is allowed to look back on his adolescence so that he and Wenceslao can both learn from the experience… 0:15 Ashanti's introduction 6:00 Jordan introduces himself 7:30 Jordan shares the front of his mask - I'm always energetic, got a smile on my face, funny. Then, he shares the back of his mask - career path insecurities, fear of failure, desire for acceptance, am I making the right decisions? 10:00 Wenceslao shares the front of his mask - bravery, risk taker, compassionate. Then, he shares the back of his mask - shy around people, lost in what I love, memories absorb me. 12:30 Jordan and Wenceslao play the Everforward Club: The Adventure Card Game. Question 1. What can you start right now in your life to become a better person? 13:30 Question 2. What is something you want to do in your life but don't talk about? 19:10 Question 3. Tell us a time when you realized you're becoming an adult. 20:40 Question 4. How much much information do you need before you believe something someone says? 22:40 Question 5. Name something you can do to improve your life. What's stopping you? 23:30 Question 6. Does the image you have of yourself match the image others have of you? 25:50 Jordan looks back on his high school years and gives Wenceslao some advice. 33:50 Jordan shares how his relationship with authenticity has changed over time. 40:50 Jordan and Wenceslao wrap up, and Jordan shares some final words of advice for Wenceslao. Create your own mask anonymously at millionmask.org Email us questions and comments at totmpod100@gmail.com  --- Connect with Ashanti Branch: Instagram: instagram.com/branchspeaks Facebook: facebook.com/BranchSpeaks Twitter: twitter.com/BranchSpeaks LinkedIn: linkedin.com/in/ashantibranch Website: branchspeaks.com --- Support the podcast and the work of the Ever Forward Club: anchor.fm/branch-speaks/support  --- Connect with Ever Forward Club: Instagram: instagram.com/everforward Facebook: facebook.com/everforwardclub Twitter: twitter.com/everforwardclub LinkedIn: linkedin.com/company/the-ever-forward-club --- Support this podcast: https://podcasters.spotify.com/pod/show/branch-speaks/support

On August 8th, 2023, fires began to spark in Maui, which then turned into deadly blazes. Spurred on by strong winds from hurricane Dora and weeks of dry conditions, a nightmare scenario has played out on the Island, with entire neighborhoods in Lahaina reduced to ash and a death toll of over 100 people so far. But while the devastation is immense and difficult to wrap out heads around, there's also stories of strength and community coming together that we are hearing from the Island.  For more, KCBS Radio's Mary Hughes spoke with KCBS Radio's Jennifer Hodges, who has been reporting from Maui, and Dr. Mia Livaudais, Professor of Public Health at Cal State East Bay. Livaudais grew up in Hawaii and is working from the Bay Area to organize help for the residents of Maui.

There's yet another hat in the ring in the race to succeed East Bay Congresswoman Barbara Lee. Lee is running for Dianne Feinstein's Senate seat, and how the race for her spot in Congress is heating up and getting crowded. This had looked like an easy run for BART Board member Lateefah Simon, a rising star in Democratic circles who announced early and lined up many major endorsements, quickly raising an impressive amount of money in what looked like a successful effort to clear the field and avoid a competitive race. But not so fast. First, Oakland businessman Tim Sanchez announced he would run against Simon for Lee's job, trying to become the Bay Area's first Latino member of Congress, and now there's a third significant Democrat jumping into the fray.  For more, KCBS political reporter Doug Sovern, along with anchors Bret Burkhart and Nikki Medoro spoke with Dr. Jennifer Tran Oakland, daughter of Vietnamese refugees, an assistant professor of Ethnic Studies at Cal State East Bay, with a degree from UC San Diego and a PhD from USC, and president of the Oakland Vietnamese Chamber of Commerce.

The American Association of University Professors declares in a preliminary report that Florida's public colleges and universities are "under assault" by recent efforts such as the ban on DEI courses and the overhaul at New College in Sarasota. We speak with Professor Henry Reichman, professor emeritus at Cal State - East Bay. He chairs the AAUP's committee on academic freedom.

In this episode of What the Fundraising, we get to talk to consultants Christal Cherry and Dr. Renee Rubin Ross who tackle the pervasive racism and white supremacy culture within nonprofit boards. Christal M. Cherry is an accomplished board consultant and the driving force behind The Board Pro. Based in Atlanta, Christal is passionate about assisting nonprofits nationwide in building stronger, more effective boards. Her work in the DEI space led her to collaborate with Dr. Renee Rubin Ross, a strategic planning facilitator, and the person in charge of Cal State East Bay's Nonprofit Management Certificate program.  With their shared passion for fostering diversity and inclusion, Christal and Renee tackle complex DEI issues within nonprofit boards. In this conversation they share how they often navigate resistance from board members uncomfortable with discussing white supremacy culture and biases. However, through patience and open dialogue, they witness transformative shifts in mindsets and behaviors. Christal and Renee emphasized the importance of transparency and personal reflection within organizations. Their approach encouraged boards to recognize their individual and collective responsibilities in creating diverse and inclusive environments. Through these experiences, the duo are powerful advocates for change within the nonprofit world, displaying the power of empathy and genuine understanding in making a real difference. In this episode, you will be able to: Grasp the crucial role of DEI in fostering robust and effective nonprofit board leadership. Identify micro- and macro-aggressions in board environments that hinder a respectful and inclusive culture. Explore innovative approaches for achieving diversity and inclusion on boards, leading to enriched decision-making. Recognize the importance of listening to and validating all board members for a more cohesive and functional organization. Embrace change and challenge the status quo to facilitate progressive board transformations. Get all the resources from today's episode here.  Many thanks to our sponsor, Givebutter for making this episode possible. Our friends at Givebutter really understand what it takes to be a magnetic fundraiser. Their fundraising platform empowers millions of changemakers to raise more, pay less, and give better every single day. To learn more about them, head on over to givebutter.com/mallory. Connect with me: Instagram: https://www.instagram.com/whatthefundraising_ Facebook: https://www.facebook.com/whatthefundraising YouTube: https://www.youtube.com/@malloryerickson7946 LinkedIn: https://www.linkedin.com/mallory-erickson-bressler/ Website: malloryerickson.com/podcast Loved this episode? Leave us a review and rating here: https://podcasts.apple.com/us/podcast/what-the-fundraising/id1575421652 If you haven't already, please visit our new What the Fundraising community forum. Check it out and join the conversation at this link.

Noah from mbfc_discussion is BACK, especially after his Monterey Bay FC came back twice to draw against the 'Hounds Games in focus: Tampa/Phoenix - Detroit/Tulsa - Birmingham/Oakland - Switchbacks/El Paso Other news: Is Adam Armour on the verge of signing for Tulsa? Oakland move to Cal State East Bay for the rest of the year How the Open Cup is looking for USL Championship sides this week

Jesus Ramirez is a highly accomplished graphic artist and educator who specializes in using Adobe Photoshop. He has worked with numerous high-profile clients, including Adobe, Microsoft, Motorola, and Conde Nast, and has created film and TV posters for major studios like CBS, HBO, HULU, and Netflix.   In addition to his work as a graphic artist, Jesus runs the Photoshop Training Channel, which is one of the most popular Photoshop YouTube channels in the world, with over 1.9 million subscribers. He has also been a featured speaker at over 30 conferences around the world, including Adobe MAX, Creative Pro, Photoshop World, PhotoPlus, and WPPI.   Jesus has been recognized for his achievements and contributions to the field of graphic design, including being named one of Cal State East Bay's 40 Under 40 recipients in 2019. His expertise in using Adobe Photoshop and his ability to teach others how to use the program effectively have made him a highly respected figure in the industry. Website: photoshoptrainingchannel.com   https://www.youtube.com/@photoshoptrainingchannel Guest Bio: Jesús Ramirez is a graphic artist and educator specializing in Adobe Photoshop.   His clients include Adobe, Microsoft, Motorola, and Conde Nast. Most recently, Jesús has worked as a Finisher in the Hollywood industry, creating film and TV posters for CBS, HBO, HULU, and Netflix.   Jesús also runs the Photoshop Training Channel, one of the world's most popular Photoshop YouTube channels, with over 1.9 million subscribers.   Over the last seven years, Jesús has been a speaker at over 30 conferences worldwide. Most notably, Adobe MAX, Creative Pro, Photoshop World, PhotoPlus, and WPPI.   In 2019 Jesus was one of Cal State East Bay's 40 Under 40 recipients.   ___________________ Subscribe to this podcast and download your favorite episodes to listen to later: Apple Spotify   RSS Feed ___________________   ⚕️ Are you a woman healthcare professional who is struggling to juggle everything in your personal and professional life?  

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Ellen Bernstein-Ellis, Program Specialist and Director Emeritus for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Davetrina Seles Gadson. We'll discuss her work involving how brain lesion characteristics may intersect with aphasia recovery, race, and psychosocial factors, as well as issues involving health-related quality of life assessments. Dr. Davetrina Seles Gadson is the first Black-American to graduate with a Ph.D. in Communication Sciences and Disorders from the University of Georgia. She is a neuroscientist and certified speech-language pathologist with expertise in adult neurological rehabilitation and patient-centered outcomes. She currently is Research Faculty, in the Department of Rehabilitation Medicine, at Georgetown University. Dr. Gadson's research focuses on the influence of health disparities in minority stroke survivors with aphasia and the effect of such disparities on brain functioning, aphasia severity, and health-related quality of life. Most rewardingly Dr. Gadson is the co-host of “Brain Friends”, a podcast for neuro nerds and stroke survivors to talk about aphasia advocacy, language recovery, and community. Listener Take-aways In today's episode you will: Learn how health disparities may influence aphasia outcomes and why more research is needed   Discover why "Brain Friends" is another podcast you'll want to add to your playlist.   Gain practical tips on how to build confidence in intercultural interactions with your clients   Hear how health-related quality of life (HRQL) measures can help  inform your clinical practice   We'd like to recognize Kasey Trebilcock & Amanda Zalucki, students in the Strong Story Lab at CMU, for their assistance with this transcript. Show notes edited for conciseness Ellen Bernstein-Ellis (EBE) EBE: I am so excited to have a fellow podcaster here today. Thank you for being here. And I just listened to the January Brain Friend's episode. It was great. So I hope our listeners will check it out too. I want to also give a shout out to your consumer stakeholder and co-podcaster, Angie Cauthorn, because she was a featured guest on episode 70, in June of 2021, as we recognized Aphasia Awareness Month, and you just spoke with her about aphasia types and aphasia conferences, and you gave a big shout out to CAC and you gave clinical aphasiology conference and you also gave a big shout out to the Aphasia Access Leadership Summit. So really important conferences, I think that stimulate a lot of discussion and values around patient centered care. And your Brain Friends podcast just has a great backstory. So why don't we just share about how that all started? Where's the backstory to that, Davetrina? DAVETRINA SELES GADSON: Thank you so much for having me. This is such an exciting opportunity. So, Brain Friends started with myself and Angie. We were on the National Aphasia Association's Black Aphasia group call and I just loved her energy. She reached out to me after we finished that group call, and we just started talking. Our conversations were so informative, and it just lit this passion and excitement in me. I said, “Hey, can I record some of these, and maybe we do like a podcast?”, and she was totally down for it. It's just been such an innovative and fun way to disseminate science and engage many stakeholders. EBE: I want to thank Darlene Williamson, who's president of the National Aphasia Association for sending me a little more information. You told me about this group, and so I wanted to find out more. She provided this description by Michael Obel-Omia and his wife Carolyn, and I hope I said his name correctly, who provide leadership to this group. And they said that in this group, the Black American Aphasia Conversation group, “provides a place for Black people with aphasia to share their stories, provide support, meditation, and brainstorm ways to advocate and consider policies. We will discuss the unique challenges and gifts we share due to our experiences with disability and race.” I found out that you can reach out to the National Aphasia Association (NAA) for more information and to get on the email list for a meeting notifications. And in fact, I put the registration link in our show notes today. So, sounds like that group has been a meaningful discussion forum for you, too. SELES GADSON: It's been so fun. I share how for me, I've been in the field practicing for a little over 16 years now, and this was my first time being in a room with so many people that look like me. And for many of the survivors on the call, I was one of their first Black SLPs that they had ever met. Just even having that connection, and being able to speak to some of the challenges, and some of the things culturally that we both share has been my outlet, biweekly. EBE: I'm going to make sure we have that link in our show notes. Also, the link to your podcast because I encourage people to listen to Brain Friends, I've really enjoyed it.  When you and I were planning for this episode today, you talked about how being part of the National Aphasia Association's Black American Aphasia Group really helped to energize you and the research you were doing, and what a nice integration of life that was. I will want to tell our listeners about one more wonderful thing, and that's the interview you were part of on the ASHA Voices podcast as well as the related article in the ASHA leader, where I learned more about your journey to doing this research. So, as you provided clinical services for a Black client as an outpatient clinician, and this is pre- doctoral research, you recognized that there was a significant gap in the literature around working with African Americans with aphasia. You saw the need to understand the impact of aphasia on identity and motivation in order to best help this particular client. And those are both really important concepts within the Life-Participation Approach to Aphasia (LPAA) framework as well. So, then you shared that you got some important advice from an important mentor. Do you want to share what happened next? SELES GADSON: Definitely. So, one thing that's also unique about that time is that at that point in my career, I had worked in many of the clinical settings. I had done acute care, inpatient rehabilitation, skilled nursing facility, and even worked as a travel SLP traveling throughout the United States. And so, once I had got to that outpatient setting, it was different from any of the other settings because these individuals were home. And often times, they wanted to get back to work. I remember feeling a little discouraged because I wasn't finding research on a lot of functional treatment approaches or functional therapy. In addition, I wasn't finding research on black stroke survivors with aphasia. And so, I mentioned to one of my mentors at the time, Dr. Paul Rao. I said, “what's going on in the field? And I'm not seeing this, and I have this client, and I don't really know what to do.” And he said to me, “Stop complaining kiddo, and go back and get your PhD.” Admittedly, when he said it, it was kind of like, “okay fine, I'll go do it.” I don't think I realized all what it would take. That's what really made me pursue the degree was this notion that I could help facilitate some of that change and bring some of the research that I needed to see. EBE: That is so important. And that story really made me reflect on another story that has really impacted me from a dear colleague, because you experienced in your doctoral work some concerns about doing research on Black Americans because your interest was seen, as it said in I think the ASHA Voices interview or in the Leader, as “personally motivated.” Your story mirrors one that a colleague and dear friend, Nidhi Mahindra, told me as well. During her doctoral research, she was told that while pursuing multicultural interests were worthy, that she may face barriers to getting funding to pursue that line of work. That might be problematic, right? She had to struggle with that. Despite that daunting message, she persisted, and then was funded by ASHA on a grant studying barriers influencing minority clients' access to speech pathology and audiology. Nidhi reminded me how our life experiences can often inform our work in important and valuable ways. Davetrina, you've channeled your experiences into these explicit observations and data that you shared with your doctoral committee. That was a really important part of moving forward.  Do you want to share some of the points  gathered for that doctoral committee to help support why this research is so important? SELES GADSON: First, I want to thank Nidhi. Hopefully I'm pronouncing her name right, for her perseverance, because it was some of her work that helped me in my dissertation. Being able to cite her just really shows the importance that everybody plays in breaking barriers and pursuing the things that really speak to them. And one of the things that I'll clarify, it was two parts in pleading this case. The first part was that I changed the committee. I think that that was a supportive thing. And then, the second part was that when I prepared all of the research on why I needed to do this work. Some of the research looked at what we knew already with stroke recovery in minoritized groups, which was that Black African Americans were twice as likely to have a recurrent stroke than any other ethnic group and what we were seeing in the aphasia literature for Black Americans, which was the narrative of Black Americans having longer hospital stays, more hospital costs, but poor functional outcomes. And so, it was these two key pieces that I had really gathered. When I went back to the new committee to share and plead my case on why I really wanted to do this research, they had that initial onset of knowing that this research definitely needs to be done. I think that that's what helped it go through. EBE: Wow. I think those are really important reasons. That whole concept of allowing our life experiences to inform our work and to value that. As we start to talk about your research, and I'm really excited to get to share this amazing work you're doing, I thought it might be helpful to define some of the terms that are integral to this research Some of the definitions are a little tough to wrap your arms around because they're not consistent in the literature or are still waiting to develop. Let's start by discussing what you want the listeners to know about the definition for health-related quality of life, or, as we'll call it, HRQL. SELES GADSON: HRQL is operationally defined that it's multi-dimensional. The way I define it a lot in my work is the perception of the individual's ability to lead a fulfilling life in the presence of a chronic disease or disability such as aphasia, but really their perception in five domains. The five domains that I look at in my work are physical, mental, emotional, social communication, and then role, the individual's ability to get back into the activities that they used to be able to do. EBE: Okay, that's really helpful. I think we should also discuss or define patient-reported outcomes or PROs. Sometimes they are also referred to as PROM's, patient-reported outcome measurements. How do they relate to HRQLs? SELES GADSON: Patient-reported outcomes is a health outcome directly reported by the patient without interpretation. Patient-reported outcomes often look at the status of the health condition. The biggest thing about patient-reported outcomes is that it's without the interpretation of the practitioner. So, whatever the patient says is what we're going to take as gold. EBE: Why is it particularly important then to look at HRQOL for Black stroke survivors? SELES GADSON: That's such a great question. And so I want to break it down in two parts. I think the first part is that given the lack of normative data for Black stroke survivors, when we're only looking at clinician-reported outcomes, that's where we get to this bias and the normative bias. I know that there's research out where there are some outcomes to where we're already seeing this five-point difference. And for some research, that five-point difference is considered clinically meaningful. I think that if we're not using these patient-reported reported outcomes, then we put ourselves in a position to contribute to the disparities that we're seeing in standardized assessments. So that's the first answer. The second reason is that we know that nonclinical factors such as physician-race concordance drive up to 80% of what we're seeing in poor functional outcomes in minoritized groups. If we're not asking the person, then we're not able to really understand the things that they want to do, and we're already coming in with this majority type attitude which could influence one's participation in therapy. The last thing that I think is most important, whether you're Black, white, purple, whatever, is that we have these insurance demands that sometimes may not allow us to get to all the things that we may see from an impairment base. By using the patient-reported outcomes, we are helping structure therapy in ways that matter most to the patient. EBE: Well, that reminds me of this amazing quote that I was hoping I could work in today. I circled it in big yellow pen when I first read through your research. You said that it's really important because, due to the lower HRQL that we find in individuals with aphasia, it's “imperative that the development of a treatment plan incorporates what the patient prioritizes. And it's imperative that clinicians have a way to measure these subjective attributes to make a meaningful impact on care.” That's what we want to do. SELES GADSON: So important, because I think what we have to realize is that part of our role as the practitioners providing this skilled intervention, is really helping the individual get back to what they want to do. And I think that if we're not asking them what they want to do, then we're not really able to structure therapy in matters that mean the most to them, but also help them to start to recognize that as part of this identity with aphasia, that there's this new normal for them. Sometimes, individuals are going to rate themselves based off of what they used to be able to do. But if they know that one of their goals was to be able to talk on the phone, or to play bridge with their friends, and we worked on that in therapy, they're now able to look and see, before I scored my telephone confidence at a 50. Now I feel like I'm at a 90, and so sometimes that own self-recognition can support motivation, and can even support therapy, once insurance dollars run out. EBE: I really appreciated doing this deeper dive into PROs as I read through some of your research. And one of the resources I came across was a really interesting table that talked about six categories of PROs. And I'll put a link in the show notes to a 2015 book by Cella, Hahn, Jensen and colleagues called “Patient-Reported Outcomes and Performance Measurement.” (They list six different kinds of PROs in a helpful table.) But the main category that your work is utilizing is actually these HRQL measures. You've been stating why it's so important. HRQL PROs help to frame diagnostics and treatment because you're trying to prioritize what the patient wants and needs-- what they're expressing. SELES GADSON: Right, exactly. I think that one of the things that it's really important for practitioners to understand, is that these things are mandated by what we see in our scope of practice. When I say mandated, I mean we are called to reduce the cost of care by designing and implementing treatment that focuses on helping the individual. If we're not asking the individual what they want to get back to, then I think that we're putting ourself at a position that makes it more challenging to serve in that way. EBE: One of the things we like to do on this podcast is to provide resources that will help clinicians think differently or do something differently tomorrow as they meet face-to-face with their clients. And one of the things I thought we'd put in our show notes is a link to the PROMIS website, because that was something you've used in your research. Do you want to explain a little bit about that website? SELES GADSON: One of the things that I like about the PROMIS website is that it has a list of health outcomes available to use for a range of individuals-- for pediatrics, for adults. I like that it's free, most of them, and I think that it's a good place to start. Some of the outcomes on that website are also even appropriate for in acute care, meaning that they may not take a long time to administer. And so, I think that that's a good place to start. EBE: Well, thank you. And I want to move right into this wonderful paper where you are co-author with Wesley, van der Stelt, Lacey, DeMarco, Snider, & Turkeltaub, that looked at how brain lesion location interacts with HRQL. Can you share a couple key takeaways from that paper?  I hope you'll highlight the one related to depression and HRQL. We're having a lot of research right now around the emotional impact of aphasia and how that will impact recovery outcomes as well. So, tell us a little bit more about that work. SELES GADSON: We looked at the domains of health-related quality of life associated with specific deficits and lesion locations in chronic aphasia. We examined the relationship between HRQL using the Stroke and Aphasia Quality of Life Scale by Hilari and her colleagues, as well as a depression scale, and different impairment-based measures---our battery that we used here. What we found was that language production and depression predicted communication HRQL, meaning that those individuals that reported lower communication HRQL also had a significant depression associated with it. We did lesion symptom mapping in this study. Basically, what we were looking at is to see if HRQL mapped on to discrete areas of the brain. We found that individuals that reported lower psychosocial HRQL had inferior frontal and anterior insula lesions; where individuals who reported lower physical HRQL had lesions in the basal ganglia. This confirmed for us that even though HRQL is this subjective perception, we were seeing it map on to these very specific areas in the brain that also predicted some of the impairment measures that we know of. EBE: That can get us to start thinking about if we have patients with these types of lesions, maybe to be more on the alert for depression. I think that's one point you made. But you also mentioned another important takeaway in the study about the impact of depression on HRQL related to the training of SLPs. This all ties together. What are your thoughts there? SELES GADSON: I think that when we are recognizing that individuals with aphasia are experiencing a new normal, and I think that the research has been very clear on understanding that depression does relate to and contribute to one's communication. I think that there is an opportunity for speech-language pathologists to have more counseling classes. And again, make sure that we're tapping into what the patient wants to do in order to hopefully help mitigate some of those feelings of depression. EBE: I really endorse building those counseling skills in our graduate programs for our students, so they go out feeling more confident and more skilled and knowing that that is going to be an ongoing journey as a speech-language pathologist to build that skill set. SELES GADSON: And shameless plug, I think our episode six of Brain Friends is a mental health episode. I have one of my good girlfriend colleagues there who is a counseling psychologist. She shares with us helping skills for the practitioner, and we share on that episode10 skills that you can do as a clinician to support the person with aphasia. EBE: Thank you for sharing that. That's really important. And again, the link to Brain Friends will be in our show notes. Let's take a moment and talk about how you connect this finding about depression to the role of social communication, because you said it was those scores that were down in your measure. SELES GADSON: With that particular study or overall? EBE: However you'd like to discuss it. I'm opening that door to you. SELES GADSON: One of the things that we were seeing is that individuals were reporting the depression within this Communication HRQL domain. So even though we didn't dive into it too deep in this study, it was more of the correlation and recognizing that individuals that were reporting this higher level of depression, also have this higher level, or this lower report of communication HRQL, making those links specifically. I do have something that I'm working on right now, that will completely answer that question a little bit more solidly. I don't want to speak too much on this, so stay tuned. EBE: Absolutely staying tuned, there's no question. You also had another article that I found intriguing-- An article with your coauthors, Wallace, Young, Vail, and Finn, a 2021 article that examined the relationship between HRQL, perceived social support, and social network size in Black Americans with aphasia. And that paper highlights that there's been little research exploring HRQL in Black Americans. Of the five factors that comprise HRQL, why did you decide to focus on social functioning? And specifically social support and social network in this study? SELES GADSON: Well, that really came from the literature. One of the things that the literature said is that we knew that social HRQL contributed in some way, but we weren't sure what way. And we weren't sure what pieces of social functioning contributed. My apologies to the researcher who said it, but it set me up perfect for my dissertation work to say, “this is why I'm looking at social functioning in these two specific pieces,” because we didn't know. Was it social participation? Was it social network? Was it social support? That was one of the reasons why I wanted to pull out those two specific pieces. The other thing that was really important about this work was that it was the first study that really looked at what HRQL looked like in Black stroke survivors. We didn't know any of that. And so for me, it was really important to compare Black stroke survivors to normal aging Black individuals because I feel that for us to really get baseline understanding of what some of these factors are and how individuals respond in recovery, we have to compare them to their norm, or to other members in their community that look like them before comparing between Black and white or any other ethnic groups. This study is where we found that in terms of HRQL, the main difference between stroke survivors with and without aphasia and in our normal aging individuals, was that communication was the impairment. And then, with the social network and social support, we weren't seeing a difference between this homogenous group of Black people in those areas. EBE: That takes me to my next question, your research noted that the Black survivors with and without aphasia, have smaller social networks compared to white stroke survivors. That's the data that we have based on that social network data. Even though you weren't trying to compare in this study, per se, you still made sense of that finding-- trying to make sure that we don't make assumptions, and instead look at different factors that could be at play. How did you make sense of that finding, the smaller network? SELES GADSON: It was two things that allowed us to make sense of that finding. One was recognizing that in both groups, the stroke survivors with aphasia and our normal aging individuals, that because they were age matched, it could have been a factor of age--meaning that the individuals receiving the support quality and then their network, everyone was kind of in the same age group, and so, it was more of a factor of time of life versus actual culture. But then a lot of that came through in some of the anecdotal reports, and things that we even circled on the scale that we used--we use the Lubben Social Network Scale. With some of those questions, one might be how many people do you feel comfortable sharing personal details with? And often times, we got this report of “just my husband”, or “only God”. And so, we were seeing that some of this really related to the traditional and cultural values in Black Americans, where you're not going to share a lot of stuff with a lot of people. You have your set group, your small network. And that's okay. That doesn't mean that you're isolated.  EBE: I think another point you make, and maybe even thinking back to the ASHA Voices Podcast, why it's particularly important to target social communication. That is yet another life participation core concept. Do you want to speak to that for a moment? SELES GADSON: I think the thing that we have to realize with social communication is that individuals, especially within the black community, they are social, they want to talk, they want to get back to doing and interacting with their community. And so, one of the things that that looks like is maybe being able to participate again in Bible study or being able to stand up and read a scripture. And the only way that you know that, is by asking them that on a patient-reported outcome. I think that that's where that social communication piece is coming in. One of the things that I'm seeing with the Black aphasia group is that moment, that hour, where everyone is together, it's amazing. It's them using social communication. You spoke about how I said that that energized my research, and that was why--because I was on this call, and they were speaking about these things, that sometimes I feel like I have to explain to the powers that be why social communication or the LPAA approach is important. But here I was talking with all of these survivors, and they were telling me, I want to be able to communicate, I want to be able to do these things. It just really confirmed for me that this type of research, we were on the right path. EBE: Right. And this is my chance for a “shameless plug” because of my life work, and that is just the power of groups. The power of groups is amazing. SELES GADSON: You know, your life work and... EBE: Well, we don't want to go there, this episode is about you. SELES GADSON: Okay. I'm telling you; I'll get into just how influential your work has been, even when I was working as a practitioner and doing group therapy, it was your work and your research that I was going to. EBE: Well, I had the honor of getting to work with Dr. Roberta Elman, and starting the Aphasia Center of California and doing that initial research, that has been such a gift to me, so, but thank you, back to your work now. That's a great transition, because I'm going to bring us to your 2022 study, looking at how aphasia severity is modulated by race and lesion size in chronic survivors. That was an amazing study. I'm going to read another quote here from that study. And that is, “understanding the origin of disparities in aphasia outcomes is critical to any efforts to promote health equity among stroke survivors with aphasia.” You said this work led you to an “Aha!” moment. And I'd love for you to share more about that moment, and about this study. SELES GADSON: Yes, this was one of my babies, I would say it was definitely a labor of love. And it's been well received. One of the things that led us to this study was that we were already aware of what the research was saying, in regards to the narrative of Black stroke survivors having these lower scores, they were having poor functional outcomes, longer hospital stays. I really wanted to understand what components neurologically, were playing into that. The research has shown that Black Americans often may have a larger stroke due to a myriad of factors-- delayed hospital arrival, not being able to receive TPA. But I wanted to know what factors neurologically were contributing to what we were seeing, not only in this baseline difference that we were seeing, but what was the bigger picture essentially. What we found was that when we looked at race and lesion size, when we did an interaction of race and lesion size, that Black and white survivors with small lesions performed similarly. But larger strokes resulted in more severe aphasia for Black people, than white people. And that was something that we didn't quite understand, because if you think about it, the larger the lesion, the poorer your aphasia should be. But in this case, the larger the lesion, the white stroke survivors were performing better and so we offered two reasons for that. One was the potential assessment bias-- that maybe with the larger stroke, there was this code-switching element that the Black stroke survivors just weren't able to do. And we were seeing that in the larger strokes, and it wasn't being picked up in the smaller strokes. Then the other was the disparity that I had mentioned earlier, which is that access to rehabilitation. It might have been more evident-- we were seeing some of those disparities in the larger strokes. We know that individuals that come from higher earning SES groups have greater access to rehabilitation services like speech and language. That was our other reason, that we were wondering if that's why we were seeing that outcome. EBE: This reminds me some of the research that Dr. Charles Ellis has been doing. I attended his keynote speech at the IARC conference in 2022 that talked about understanding what is happening upstream, because it's going to impact what's happening downstream. In terms of health disparities, it's going to have an impact. I think your research supports that. We need to learn more about it and do the research you're doing. As you reflect on your findings across these amazing studies, this research that you've been doing, can you offer to our listeners some tips on how to have more confidence with intercultural contact? SELES GADSON: That's a great question. I think the first thing that that you have to do is put yourself in places where you are connecting with people that don't look like you. EBE: I agree. And that can be hard and challenging to do. SELES GADSON: It can be, but one of the things that I say is that it goes back to some of the things that Dr. Ellis has talked about, which is being intentional. That might mean going to a different side of the neighborhood to support a Black owned business, and being within that space, to feel how it feels to be around different cultures. The other thing that I think is really important, and it comes out of literature that looks at reducing racial bias in health care, which is to avoid stereotype suppression. So oftentimes, people may be thinking something and they don't want to share it, or they try to suppress it. And the reason why that's negative is because stereotype is a cognitive organization strategy that we use. And where it becomes negative is that if you're having these stereotype ideas, or you're just not sure, if you're not able to express them within a space that you feel comfortable with, then you suppress them. And then it kind of comes out in therapy. And so, I think that those are two huge things. And then the last thing that I would say is that it's really important to build partnerships. And so, building partnerships, either with local churches, within the university area, or just seeing how you can serve in order to help create some of that confidence. But you have to put yourself out there and not wait until therapy day. EBE: Wow, thank you for those tips. And one of them reminded me of something, a tip that a local educator suggested that, even if you don't feel like you're in an environment where your everyday social context might put you with people who look different from you, that you can still listen to other voices by listening to podcasts, sign up for podcasts, sign up for Twitter feeds of people with different voices, so you can start being present to that conversation. So that was something that I have found useful and really good advice as well. SELES GADSON: So true. The other thing that I did, even someone who identifies as a Black American when I was doing my dissertation work, and previously before some other things in my career, I noticed that perspective taking was a huge piece--putting myself or imagining myself in the individual's shoes. And so, for me, that meant that I went to Black museums and exposed myself to different cultural experiences. I wasn't going into some of these spaces, whether it was collecting data or even working with individuals from other earning communities, with some type of privilege. So even in that sense, I wanted to make sure that I checked my privilege as well by doing that perspective taking. EBE: Thank you,. And this discussion could keep going, but I know our time is getting tight here. This whole effort that you put in your research of looking at HRQL measures reminds me of some of the work that I've really admired by Hilari and you had a wonderful story you could share about her, your interaction and your use of her work. Would you like to share that quickly? SELES GADSON: Oh, she's so awesome. I was sharing how when I first was diving into this literature, her work was one of the pieces that I found, the Stroke and Aphasia Quality of Life Scale. I reached out to her and she shared this scale. And a couple of years later, I attended the International Aphasia Rehabilitation Conference in London. And she sat down with me. I asked her if she had any time, if we could just talk, and she was so welcoming. We sat down, and she might not even remember this, but even in that moment of us being able to talk about these things that we were both so passionate about, she just really spoke to me and encouraged me. And it's so funny, because now as I publish and do different things, my mom always says, “you gonna be just like Dr. Hilari.” EBE: Let's just do a shout out for mentorship, for people who take the time, and feel committed and passionate. Again, we're using that word again today, passionate, to support the new voices that are coming into the field. So that's the gift of mentorship. And in this whole discussion, you and I also talked about how important it is to be inclusive, and we talked about how HRQL measures sometimes are harder to use with people with severe aphasia and how they can get excluded from research. It's hard enough to get people with aphasia into the research, right? There's work by Shiggins and her colleagues looking at how often people with aphasia are excluded. But you made a good point about ways that we can include people with more severe aphasia. Do you want to mention that? SELES GADSON: I think one of the things that we have at our fingertips, and we know just from our training, is to use different visual cues to support those individuals that might have more severe aphasia. One of the things that we highlighted in the 2020 paper looking at the psychometric properties of quality of these patient reported outcomes, was that there are certain assessments that are perfect for individuals with severe aphasia, assessments like the Assessment for Living with Aphasia (ALA), because it has the pictures available and it has simple language. Just recognizing that even by using some of these compensation tools, whether it's pictures or modifying the language, we can still get the individual's perspective of what they want in therapy just by using some of these modifications. EBE: This reminds me, I can put one more link and resource into the show notes, because the Center for Research Excellence in Aphasia offers this wonderful speaker series. And there was just an excellent recent session by Dr. Shiggins on including people with aphasia in research. So, I'll put that link in. I want everybody to listen to that presentation. And finally, as our closing question for today, Davetrina, if you had to pick only one thing we need to achieve urgently as a community of providers, of professionals, what would that one thing be? SELES GADSON: I think we have to start using patient-reported outcomes. I think that if you were doing a clinician-reported outcome to assess the impairment, paired with that has to be some level of patient-reported outcome that will give you insight into what the patient wants to do. It's no longer optional. I think that we have to make it a paired thing with our clinician-reported outcome, is getting the perspective of the patient. EBE: I so agree with you, thank you. Thank you for this wonderful interview today. I really, really appreciate it. SELES GADSON: Thank you. EBE: And I want to thank our listeners for listening today. For references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. And there, you can also become a member of this organization. Browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I'm Ellen Bernstein Ellis and thank you again for your ongoing support of aphasia access. References and Resources Brain Friends Podcast: https://www.aphasia.org/stories/brain-friends-a-podcast-for-people-with-aphasia/ https://www.facebook.com/groups/1563389920801117 https://open.spotify.com/show/5xgkrhUhEIzJgxpRXzNpBH   Centers for Disease Control and Prevention (CDC) HRQL website: https://www.cdc.gov/hrqol/concept.htm     National Aphasia Association  Black American Conversation group registration: The Black American Aphasia Conversation Group meets through Zoom every other Monday at 4:00pm EST (1:00pm PST) . If you are interested in joining this group, please complete the form https://docs.google.com/forms/d/e/1FAIpQLSfJN9VWjrujhebT8Z48bqDZePOHYotipFC34S8T0X8_o8rG-g/viewform Patient Reported Outcome Measurement System (PROMIS) https://www.promishealth.org/57461-2/   Cella, D., Hahn, E. A., Jensen, S. E., Butt, Z., Nowinski, C. J., Rothrock, N., & Lohr, K. N. (2015). Patient-reported outcomes in performance measurement. . Research Triangle Park (NC): RTI Press; 2015 Sep. Publication No.: RTI-BK-0014-1509ISBN-13: 978-1-934831-14-4  https://www.ncbi.nlm.nih.gov/books/NBK424378/   Gadson, D. S., Wallace, G., Young, H. N., Vail, C., & Finn, P. (2022). The relationship between health-related quality of life, perceived social support, and social network size in African Americans with aphasia: a cross-sectional study. Topics in Stroke Rehabilitation, 29(3), 230-239.   Gadson, D. S. (2020). Health-related quality of life, social support, and social networks in African-American stroke survivors with and without aphasia. Journal of Stroke and Cerebrovascular Diseases, 29(5), 104728.   Gadson, D. S. (2020). Health-related quality of life, social support, and social networks in African-American stroke survivors with and without aphasia. Journal of Stroke and Cerebrovascular Diseases, 29(5), 104728.   Gadson, D. S., Wesley, D. B., van der Stelt, C. M., Lacey, E., DeMarco, A. T., Snider, S. F., & Turkeltaub, P. E. (2022). Aphasia severity is modulated by race and lesion size in chronic survivors: A retrospective study. Journal of Communication Disorders, 100, 106270   Gray, J. D. (2022). Transcript: ASHA Voices: Confronting Health Care Disparities. Leader Live. https://leader.pubs.asha.org/do/10.1044/2021-0902-transcript-disparities-panel-2022   Law, B. M. (2021). SLP Pioneers Research on Aphasia Rehab for African Americans. Leader Live https://leader.pubs.asha.org/do/10.1044/leader.FTR4.26092021.58   Lubben, J., Gironda, M., & Lee, A. (2002). Refinements to the Lubben social network scale: The LSNS-R. The Behavioral Measurement Letter, 7(2), 2-11.   Shiggins, C., Ryan, B., O'Halloran, R., Power, E., Bernhardt, J., Lindley, R. I., ... & Rose, M. L. (2022). Towards the consistent inclusion of people with aphasia in stroke research irrespective of discipline. Archives of Physical Medicine and Rehabilitation, 103(11), 2256-2263.   Shiggins, C.  (2023) The road less travelled: Charting a path towards the consistent inclusion of people with aphasia in stroke research.  Aphasia CRE Seminar Series  #36 (Video) https://www.youtube.com/watch?v=sqVfn4XMHho

Can't decide between a four-year and a two-year interior design degree? It is important to remember that both degree programs have advantages and disadvantages, so consider your personal goals and circumstances before choosing between them. And who better to discuss this than Jill Hornbeck? Her advice will help you decide based on your unique needs and aspirations. Explore your options with Jill as she shares her Interior Design, Marketing, and Teaching expertise to help you determine which degree is best for you. Featured Guest: Jill Hornbeck has always dreamed of becoming an architect but found working with colors and furniture more interesting than designing homes and buildings. She holds a Bachelor of Science in Interior Design from UC Davis and an MBA in Marketing from Cal State East Bay. In 1992, she founded Everett Interiors in Livermore and has taught at Las Positas College since 2001. After UC Davis, she worked at an interior design firm doing model homes and residential design. She then worked for a homebuilding company as a marketing coordinator in the sales office doing graphics and public relations. Along with teaching at LPC and running her own interior design business, she's also a mom of three. Her advice to potential students is "to get the experience right away. There is a lot of awareness about this industry thanks to HGTV and you need to show that you understand it's more than just putting samples on a board. The products in Interior Design are more complex than people realize. So, having experience with products and clients will help you build confidence in your design skills and your ability to communicate with the many people you will encounter." Why you've got to check out today's episode: Identify the skills you need to develop while getting experience as an interior designer Discover the 3 steps you can take to prepare for your dream job Examine the number one question: Which degree program should you take and why? Check out the show notes >>> Choosing Between 2-Year and 4-Year? What to Look For in an Interior Design Degree NEXT STEPS: Grab your freebies: NEW!! Your Roadmap to a Career in Interior Design 3 Things I Wish I Had Known When I Started My Career  Join the Design Mentor to kickstart a successful career in interior design! Enroll in Business of Design with Kimberly Seldon or DesignYou with Tobi Fairley today to scale your interior design business! Email me at podcast@rwarddesign.com if you have suggested topics. DM me on Instagram at @rwarddesign if you have a burning question. Visit my website at rwarddesign.com to learn more about my services Thanks for listening! I hope this helps you discover if interior design is the career for you. See you next week...

Do you want to get back in the gym but don't know how? We got you!On this episode of HMA Selena takes over the mic to talk about a topic that is very near and dear to her heart, Health and Fitness. No Lizette is not MIA, the ladies are trying something different. The change in format will help to balance their time and continue to present different topics together and some individually. On this episode Selena is solo bolo - pero with an awesome guest. Carlos Padilla is a fitness and wellness coach who focuses on strength training. He helps people build a foundation for their wellness journey through education, guidance, programming, and nutrition. Carlos graduated from Cal State East Bay with a B.S. in Kinesiology and is a candidate for a doctorate in Chiropractic. Aside from being a full-time student and coach, He is a husband and a father to two beautiful babies.Tune in and hear first hand from the fitness coach that helped Selena start her wellness journey while Selena, shares 5 tips that helped her get back to the gym!Remember when you know better you do better!DOWNLOAD and SUBSCRIBE to Hijas Madres Y Amigas.FOLLOW US:Instagram | @hijasmadresyamigas @seelenaaa_ @lizetteaguilera_Spotify | @Lizette Aguilera @Selena DUARTETik Tok | @hijasmadresyamigasGUEST:Carlos Padilla IG: carlos.pdllaEmail: carlospadilla029@gmail.comPhone number: 510-621-9693Subscribe to our newsletter at www.Justjmarc.comPlease email us here with any suggestions, comments, and questions for future episodes. E-mail: info@justjmarc.com

I'm Ellen Bernstein-Ellis, Program Specialist and Director Emeritus for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resource I'm today's host for an episode that will feature Kathryn Shelley, former Aphasia Access President and co-founder and current Grant Director for the Aphasia Center of West Texas. Kathryn was our guest for episode #1 of the Aphasia Access Conversations Podcast and we are delighted and honored to invite her back to be the guest on this 100th episode of our Aphasia Conversations Podcast. We'll discuss financial sustainability of Life Participation programs across a variety of settings, with a focus on best practices for fundraising. Guest bio   Kathryn Shelley has over 30 years' experience in nonprofit management, board leadership, strategic planning, marketing, and fundraising. She is co-founder, prior Executive Director, Marketing & Development Director, and currently the Grants Director for the Aphasia Center of West Texas, one of the earliest community-based nonprofits in the U.S. to incorporate the Life Participation Approach to Aphasia. Prior to her father's stroke in 2001 and his resulting aphasia, Kathryn was lead designer and co-owner of a marketing and graphic design firm in Austin Texas. Listener Take-aways In today's episode you will: Hear how two events involving chocolate and rock and roll have grown awareness and funds. Find out how typical stages of organizational development might influence your fundraising capacity. Gain practical tips for sharing the impact of your aphasia program to help raise awareness and funding. Learn about some resources available for supporting your nonprofit know-how. Show notes edited for conciseness and clarity Ellen Bernstein-Ellis So, Kathryn, I want to give you a shout out and just a great big welcome. It took 100 episodes, but thank you for coming back. Kathryn Shelley Thank you so much for having me, Ellen. Ellen Bernstein-Ellis  01:24 Absolutely, I was glad to introduce you. You've done so much and have worn so many different hats, Kathryn, and I'm excited to get to have a discussion with you today. So again, welcome. Kathryn Shelley  02:20 Thank you. Ellen Bernstein-Ellis 02:21 We like to start off the episodes with a fun question. Can you share an Aphasia Access favorite resource? Kathryn Shelley  02:33 Well, it's a hard pick, there are so many. But let me tell you about the one that I'm involved in right now - top of mind. It's an online certificate and badge course, E-badge course, called Person Centered care, Life Participation Approach to Aphasia series. Aphasia Access just launched the first in that series called The Life Participation, Knowledge Course. It's so much more than a webinar. It's contemporary, and it's how you interact with each of eight modules. You earn .25 CEUs, and at the end you receive a clickable E badge which takes anybody, an employer, your peers, if you have that in your email signature, to a site that shows everything that you did to earn that badge. It's so contemporary and so comprehensive, and it will give someone a foundational understanding of the Life Participation Approach. I'm loving working with Melinda Corwin and Nina Simmons-Mackie, and just the entire team of subject matter experts. The reviews are coming in from both professors teaching the next generation and current speech pathologists that it is really fantastic and very, very helpful. Ellen Bernstein-Ellis 04:06 We can also point our listeners to Episode 92 to learn more about this course, because we actually interviewed Melinda and Brooke Hallowell. So that's another place they can go to learn more.  Can you explain to the listeners how they can access the course? Kathryn Shelley  04:27 On AphasiaAccess.org, you'll see the link on the homepage that will take you over to our new Academy, which is the platform where all of our interactive courses are. It's an easy sign up to be on that platform, and then you'll see the course right there. Ellen Bernstein-Ellis  04:48 That's great. Thank you. I don't blame you for picking that today for a favorite. To celebrate this 100th episode, I was wondering, Kathryn, if I could ask you to share with our listeners the backstory to the start of this podcast. Just a little insider history. Kathryn Shelley  05:07 Sure. Let's see. It was Nina Simmons-Mackie and I in a daydreaming conversation wondering how to reach busy professionals with a free product to connect them to the wealth of practical tips and information that is available through all the people that make up Aphasia Access. It was Nina who said, “How about a podcast, people wouldn't have to carve out work time, they can listen in a car, or on a  walk, anytime.” And then we brainstormed who might entertain heading up this new endeavor and be the type of person others would say yes to. So Ellen, I was simply the one fortunate enough to pitch the idea to you. So it's really you and the amazing podcast team that made it happen and keep it going. Ellen Bernstein-Ellis  06:01 Thank you. Those are very, very kind words, and very appreciated. I just have to give a shout out to my colleagues who have been part of this collaborative team along the way, the whole 100 episodes. Nidhi Mahendra, Katie Strong, Jerry Hoepner, Janet Patterson, and Alyssa Rome. They've all contributed to this podcast so much and they are a joy to work with. And of course, I have to thank Todd Von Deak, Jess Campbell and Lisa McCracken, of Aphasia Access, who make sure we have all the logistical support in place. And one more thank you, and that's to the 100 plus guests. Just thank you for sharing your stories and your incredible work with our listeners. You know, maybe one more thank you, and that's to the listeners, because we just so appreciate the support. Thank you for sharing the podcast with your colleagues and your students. We are excited to see it grow. Kathryn Shelley  06:53 You told me that there's over 102,000 downloads that have been verified. So how cool is that? Ellen Bernstein-Ellis 07:02 We've been amazed to see that it's being listened to in over 50 countries. We've just been really excited and honored to be part of this. So thank you. And again, I'm glad you're here today. We didn't get a chance to describe your Aphasia Center very much when you were interviewed for episode one. You did share the why though, how your dad's own experience with aphasia was an important part of the story for starting the Aphasia Center at West Texas in Midland. You are a co-founder of that center and it's celebrating its 20th anniversary. That's a really special milestone. Maybe you could share a little bit about what your center looks like today. Kathryn Shelley  07:45 Sure, we're in a standalone building. We have multiple groups three days a week. Conversation groups are the backbone. Additionally, we have raised bed gardening, cooking, computer lab, and woodworking. All the groups are ever changing through the years according to the interests of our members. We've had book clubs, singing, photography, art,. Until COVID, we had a very active out and about program, which got people out of the center going to field trips to local museums, nature preserve, restaurants. We're all so glad it's starting to ramp back up. Ellen Bernstein-Ellis  08:25 Sounds like amazing programming. I just have to acknowledge the 20th. It's a special milestone and really something to celebrate and an opportunity to reflect. Kathryn Shelley  08:35 Yes, it definitely is. And I'm really humbled and proud that 20 years later, that the spirit of the place, the spirit of the Aphasia Center looks and feels really as vibrant as it did during our startup years. I think that vibrancy remains so contagious, because we continue to serve our mission, which is to walk alongside aphasia survivors, who thought their life was basically over, then watch that depression evolve into hope and a pathway to embrace life again. So it really continues to be those real life stories that keep our staff, our volunteers and our investors so energized. I think in terms of today's financial sustainability topic, at 20 years, that looks different than in the very beginning, because we have investors that have now been with us for decades. They've guided us through the stock market crash of 2008. And then when we outgrew our early meeting spaces, to launch a capital campaign and buy a building. There are people who have stepped up through COVID. So we've really grown into our mature stage of development and our reputation certainly helps us attract and sustain these long term relationships. Ellen Bernstein-Ellis 10:05 Kathryn, your center works really hard at cultivating grant support and building a donor base. But I really want to share with the listeners some of the stellar annual events that are associated with your center. I certainly have been watching this infamous Chocolate Decadence event that you host prior to Valentine's Day each year. I'm really just in awe of your center's ability to create these events. Could you share some tips on how you build a successful team to take on something like this and how the members of your center are involved? Kathryn Shelley  10:43 Sure. The first thing I would say is do not attempt this in year one. Events, special events, just take so much staff time and volunteer effort to put on. Chocolate Decadence started in our fourth year, when I would say we were entering our adolescent stage of development. Our donor base and our database was growing. We'd populated our board by then with people in media and marketing plus leaders in business and health care. Word was getting out in more and more spheres about us. Invitations to speak were on the wise, and that's when a generous woman with a long history of philanthropy and volunteer service presented her idea to our board. She came to us and to our board and said that she had just attended a chocolate themed fundraiser in another state, and that she thought it would do well in our region. And then, of course, everybody was over the moon at that idea. And she said, if you're interested, I'll chair the first year. She brought her own volunteers in the beginning, then it evolved from there with friends of friends, and it kept going. So at this point, Chocolate Decadence continues to be an elegant night, and it raises around 40% of our general operating funds. It is the gift that keeps on giving. Members do attend the event too. What's more life participation than that? One of the really dear things is that a family of one of our very loved founding board members who passed away knew what the center meant to their mother. That family underwrites the cost of the member tables as a way to honor their mother. Ellen Bernstein-Ellis  12:42 That is fabulous. What a great way to bring the community together and have the stakeholders be part of a really important night. So that's great. And it sounds to me like you're saying these events just take quite a team, like you need a cadre of volunteers. Kathryn Shelley  12:58 That's exactly right. We certainly have a large number of terrific volunteers who show up that night to help. One thing that I've seen really talked about in the volunteer world is that trends have changed over the last 20 years. And, of course, more after COVID. So there used to be a generation of community volunteers who made volunteering their job. And they served on lengthy committee tasks. They really took care of so many things about Chocolate Decadence. We've not seen a new generation that has that level of flexibility today. So I have to say Chocolate Decadence has streamlined by switching to a more full service venue and contracting out a lot of what volunteers handled before. Ellen Bernstein-Ellis 13:53 Yeah, I think I've noticed that too. And some of the other organizations that I've been involved with have noted this kind of change in trends of how you have to utilize volunteers. Kathryn Shelley 14:02 That's true. That's very true. Ellen Bernstein-Ellis  14:05 Well, I know that Chocolate Decadence is just an amazing event. It has chocolate, so you're off to the races with that.  But you also do a concert, could you share a little bit about what that looks like? So I think that's a summer gathering. Is that right?  Kathryn Shelley  14:21 That's  right. And the Aphasia awareness concert is a different goal. Its main goal is awareness. So yes, it's an outdoor event with a fun tribute band. General Admission is free. So this year, you'll feel like you're witnessing Elton John in his early years. Ellen Bernstein-Ellis  14:40 Oh, now that's great. Kathryn Shelley  14:43 Yeah, so during the concert, we raise awareness about aphasia, how it impacts people, and that there's an Aphasia  Center to help. The cost of the band is entirely underwritten by sponsors. And then because it's a free event, our television newspaper, and radio stations, trade or greatly reduce the cost of airtime for all the advertising. So it's a win-win as the media and a number of businesses want to have their names on the stage banners seen by that audience that night. It's usually a couple thousand people. Both of these events are just great ways for Aphasia Center members and families to get out of the house and participate. The fundraiser of Chocolate Decadence and the awareness raiser of the Concert are our two yearly events. Ellen Bernstein-Ellis  15:37 Both of them build community in their own way.. That's fabulous. Today I've been thinking about how we're going to talk about this. And whether you are a community based center, a university, or even a hospital program, sustainability has several pillars, and I am so glad that you kindly agreed today to address one of those pillars, specifically financial sustainability. I'm particularly grateful for this chance to learn from your expertise, Kathryn, because most SLP training programs rarely offer instruction on program development and management. Yet, we are frequently motivated to launch programs to meet the needs of the community we serve, and we often learn as we go. But this lack of knowledge might be a barrier to someone wanting to start a program. You mentioned during our planning meeting that there's a fundraising framework that involves understanding the organizational development stages, and you've already started to sprinkle our conversation with those words. Could you explain those stages to the listeners? Kathryn Shelley  16:44 Sure. So the typical stages, particularly in nonprofits, and I think they overlap to other settings, are often called infancy, or startup, adolescence and maturity. Most every organization or a program begins with a compelling story by someone who is smack in the middle of that story. So if we think about Jodi Morgan, who is a huge hearted speech pathologist in Jacksonville, Florida, she went to a crowdsourcing campaign populated with video clips of people with aphasia, answering what an aphasia center would mean to them, when they didn't have one to go to. Then, that led to starting the Brooks Aphasia Center. And of course, my own story is as a panicked daughter, who only saw a dismal life ahead for my father, and frankly, an overwhelming life for me. So the first thing I did was call around to get advice on who was one of our region's most respected SLPs. Over and over, I was given the name Beth Crawford. And so it was Beth and I on the original staff, and Beth remains the program director today. Ellen Bernstein-Ellis  18:00 That's fabulous to have that type of continuity and partnership. Kathryn Shelley  18:04 Absolutely. And then at the very beginning, the other person that's from that original staff, is Shun Kelly. She came on board as a CNA in our earliest days. All three of us are still there, 20 years later. But the startup stage of a new program is so often started by the people who are deeply affected. And, you know, there's a strong sense of ownership and often entrepreneurial staff emerges from the founders. So your nonprofit board of directors in those early stages is often more of a programming board, consumed with all the details of delivering service and creating those services.  Ellen Bernstein-Ellis 18:49 Okay, so that's what the startup looks like, or the infancy stage. Let's move on to adolescence. Kathryn Shelley 18:56 It can be a little rocky, like the usual stage. When you move further into the adolescent stage, the conversations, of course, have evolved to how to ensure the well-being and the longevity of the organization. For a nonprofit, that's the stage where recruitment needs to happen to transition from the founding programming board to a governing managing board. This is where I've seen organizations falter and get stuck at this stage if their leadership team remains homogeneous. Even more so if staff isn't equipped or unable to dedicate the time needed for financial well-being. This is where expanding to experts in fund development, social and broadcast media, and corporate and healthcare leaders can really open new spheres of expertise and influence. Then of course, I'm thinking about if you are housed within a university setting, fundraising people are typically already in place within the Office of Advancement. Of course, that's where you're going to really keep that relationship, hopefully, top of mind. You are supplying good stories of the impact that you're making, so that the advancement office team is able to communicate those stories as they're doing fundraising for the university and your program. Ellen Bernstein-Ellis  20:41 How about moving on to the mature stage? Tell me a little bit about that. Kathryn Shelley  20:49 So yes, so the mature stage is where the governing managing board transitions to a true governing fundraising board. If you've already brought in a variety of skill sets in the previous stage, then it's more board members with high influence that are really more easily recruited. It's important to also keep the advancement officer with those news stories, and to keep your board just inspired with the stories of what you do. Ellen Bernstein-Ellis 21:26 If you happen to be an SLP, who is new to these types of concepts, is there a resource you can recommend to learn more? Kathryn Shelley 21:37 Absolutely, there's so many. I have to say that, at heart, I'm an introvert. Just the thought of asking for money makes my palms sweat, and it just feels rude.   Ellen Bernstein-Ellis 21:51 Okay, I have sweaty palms too. Kathryn Shelley  21:55 But here's the thing. There are so many learning opportunities out there. I've taken advantage of so many that have been provided in our region, and that I could find online. Now, of course, Aphasia Access is full of people who have started small to large programs within all types of settings. Ellen Bernstein-Ellis  22:17 That's a great point. And that's part of the strength of that community. For sure. Kathryn Shelley  22:21 Absolutely. And I can tell you that even at the Aphasia Access Leadership Summit, this March, there's a roundtable session called “Show Me the Money”. There's a community of people, speech pathologists, you know, all waiting for you. Then, also, Aphasia Access is launching a new mentoring program, and it's a great place to get one on one advice about all kinds of topics. That's within Aphasia Access. Then I would suggest searching the internet to see if there's a Nonprofit Management Center near you, because they're scattered across the country. They are a treasure trove of local resources. Importantly, they typically have a foundation search directory available to search funders by state ,region or interest area. They're a great local resource. Lastly, I'd recommend two things, the National Council of Nonprofits, and BoardSource, both premier organizations with lots of resources. Ellen Bernstein-Ellis 23:29 That's great. You mentioned local resources and I'm sure some of these have great online resources to support and get you the knowledge you need to start this process to successfully implement these new programs, whether they're small or large scale. In terms of capacity building, when we had our planning meeting, you mentioned something that really resonated with me and I want you to bring that back up. It's about expectations and time. I was wondering if you would share that with the listeners? Kathryn Shelley  24:07 I've had such good fortune to come to know speech pathologists, just top of the line people wanting to change the world. I know how hard you all work and you all are in the life transformation business, helping people with complicated lives. It seems to me unrealistic to expect the same people running programs to also carry the major weight of fundraising, because what I know is that grant applications and a diversified fundraising strategy are a specialized skill set that can certainly be a full time job. Lots of foundations offer what they call capacity building grants. I would suggest prioritizing the cost of a skill development person, on contract or on staff as early as possible, that will really free you up to tend to the people and create the programs that you're trying to create. Ellen Bernstein-Ellis  25:13 I think you're speaking to the “it takes a village” model.  Kathryn Shelley  25:19 So, absolutely and there's only so many,many hours in the day, right? Ellen Bernstein-Ellis 25:23 Well, let's then talk and offer our listeners some tips for implementing financial sustainability best practices, because I know that's really important to you. Where would you like to start? Share a best practice and then a tip to go with it. Kathryn Shelley  25:38 Okay, so always, the first best practice, in my mind, is capturing the human story. And the tip I would offer, especially in the age we live in, is to make sure you're sharing the real plight of people with aphasia in their own words, because it helps others understand the impact of your dream, instead of just feeling like you're there begging for dollars. So take out your cell phone, ask people with aphasia and their loved ones, what it was like before you came along, how their life has changed, or would change if they had-- fill in the blank-- the aphasia friendly book club or an aphasia camp or the program at that university. Video now is so low cost it's really a level playing field for anyone wanting to launch a dream. So take those videos and then strategize where best to share those stories. Ellen Bernstein-Ellis 26:37 Well, that's a real doable tip, I think. And I want to recommend to our listeners, just visit the Aphasia Center of West Texas website, where you feature some compelling member stories. And do you have any lessons or tips about how you selected those stories? Kathryn Shelley 26:55 Not so much about how we selected them. I remember one time, we literally just set up the studio, we did hire a professional videographer, but we just hired him for two and a half hours. And then we asked anybody that wanted to come in to just have a seat. And we asked them about life before us and what difference we make. What spontaneously came out, in gestures, we of course, had some aphasia friendly tools sitting there if they needed those, but it's so powerful, what people will communicate if just given the chance? Ellen Bernstein-Ellis  27:39 Well, I think the first time I went to your website is because Audrey Holland said that everybody should listen or watch Ann's story. I think that's still up on your website. Is that right? Kathryn Shelley It is. Ellen Bernstein-Ellis So Ann's story. Kathryn, would you like to share another best practice? Kathryn Shelley 27:57 The second one I always think of is to utilize your regional resources. A tip is to find the Community Foundation closest to you. There are, I know, over 700 scattered across the United States. And my understanding is that something similar exists in a lot of countries. So in our country, a Community Foundation is a public charity that typically focuses on supporting a geographical area. They support local nonprofits and educational institutions. If you're a university, it would be through the Office of Advancement because that usually is a 501 C3 arm of a college or university. Whether you're going with someone or setting up the appointment yourself, the main point is that the Grants Officer at a Community Foundation wants to talk to you, they really do. This is their mandate, to fund new endeavors and sustain good causes in the community. So they have donor advised funds, endowments, scholarships, field of interest funds, giving circles and more. And they're all about making good things happen, especially for marginalized populations, like people with aphasia, Ellen Bernstein-Ellis  29:18 Right, that's great to have something tangible like that, that we can find in all of our communities. Do you have a third best practice you can share? Kathryn Shelley 29:27 Sure, the third best practice I think, is to create a strategy to continually expand relationships and the possibility of donors. It's really about beginning relationships, not knowing where they might lead. So for the Aphasia Center of West Texas, we host what we call “Talking and Tour” three to four times a year. We have chosen after people get off work before they go home, as a happy hour type event. They know from the flier that we will not be asking for money. We do show people a video featuring a variety of our members with aphasia sharing the impact of our services. It's around eight minutes long. And then our executive director Kitty Binek, shares about our events, a bit about our program, our board of volunteers. We make sure that we invite key people in town, such as realtors, ministers and rabbis, financial planners, and business people. Our board is responsible for bringing guests as well. It's really a place to cultivate a beginning relationship and an awareness of aphasia and what we do. We've certainly gained volunteers and donors in the process, but regardless, we find people are really inspired when they leave.  Ellen Bernstein-Ellis  30:55 I think you're pointing out the importance, that's in the literature on financial sustainability and healthcare innovation, of identifying your champions. That is an element that seems to be mentioned in numerous articles. You have to find the person who's motivated to support your program, whether you are at a university or community nonprofit. I remember an early episode with Janet Whiteside, Episode 17. She spoke about how the dean of her university asked her to share her dream. He wanted to know what it would be and then when he heard it was about building this Aphasia House, he was committed to raising the funds that would open the doors to this dream. That was just so inspirational, that type of partnership and championship. Any tips around identifying your champions? Kathryn Shelley 31:50 Sure, if I go back to the beginning, like Janet Whiteside and Jodie Morgan, all of us listened to our heart's desire to make a difference. And then we started talking to others. For me, there were a couple of community people that listened to me talk. And I was just talking everywhere I could think. What happens when you start talking, is that the power of good in the universe does open doors. In addition, you find the dreamers who came before you. So Aphasia Access, and the Aphasia Institute are great places to find community. But if you start talking in your own community, it really is contagious. I do think that the world does start opening up to you, Ellen Bernstein-Ellis 32:47 That's really inspirational advice. It just really goes to the heart. And I really appreciate this conversation today, because fundraising and finances can be very scary and today, you've made it feel so much more doable--lead by what's in the heart, and I really appreciate that. So thank you. Is there anything else you haven't had a chance to cover that you just wanted to share with the listeners? Kathryn Shelley 33:15 The one thing that I haven't mentioned that I have used in fundraising, and in populating a request for media or anything like that is I've been using the Aphasia Access State of Aphasia Report. I really am not trying to continually go back, but it is unlike anything I've ever seen. Instead of finding statistics, and all kinds of things in all kinds of places, all those stories and statistics, so much of what we all need to populate grant proposals and give them media sound bites is all in there. It's so worth it. Ellen Bernstein-Ellis  34:00 I personally have also had an amazing experience with that as a resource for multiple tasks. And I just want to let our listeners know that recently in December, I think it was episode 96, we actually featured Nina Simmons-Mackie and Jamie Azios, telling us about how they're updating the report and what it's going to look like next. That is absolutely exciting. I am so grateful that that will soon be in our hands as well. So thank you for bringing that up. It's time to wrap up this episode. But I must ask you one more thing, Kathryn, and this is a fun one for me. If you had to pick only one thing we need to achieve urgently, as a community of providers and professionals, what would that one thing be for you? Kathryn Shelley  34:50 I think that's easy. For me, I say this with the greatest respect, but I do think it's diversification. It really is. Is my observation over these 20 years that if the condition of aphasia is going to become a household word, and if services are really going to reach the people who need them, then we must take our passionate storytelling selves and invite experts in marketing and fundraising, broader healthcare and community leaders who have the expertise and can help open more doors to other communities of influence. Ellen Bernstein-Ellis  35:29 That sounds really important, easier, maybe easier said than done, but absolutely essential. So thank you. Thank you for being part of the podcast today, number one and number 100, Kathryn.  Kathryn Shelley  35:42 Thank you so much. Ellen Bernstein-Ellis 35:42 Our pleasure. I'm gonna thank our listeners as well. And for references and resources mentioned in today's show, please see our show notes and they're available on our website, www.aphasiaaccess.org. And there you can become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy that Kathryn described at the start of the show. And if you have an idea for a future podcast episode, email us at info at aphasiaaccess.org For Aphasia Access Conversations, I am Ellen Bernstein-Ellis, and just thank you again for your ongoing support of Aphasia Access References and Resources Aphasia Center of West Texas, https://aphasiawtx.org/ Aphasia Anecdotes including Ann's story (from website) https://aphasiawtx.org/about-us/ Brooks Rehabilitation Aphasia Center: https://brooksrehab.org/services/aphasia-center/ Aphasia House, University of South Florida: https://healthprofessions.ucf.edu/cdclinic/aphasia/ State of Aphasia Report, Aphasia Access: https://www.aphasiaaccess.org/reports/ Board Source, https://boardsource.org Nonprofit Management Center, https://www.nmc-pb.org/resources National Council of Nonprofits, https://www.councilofnonprofits.org/ Nonprofit Life Cycle, https://speakmanconsulting.com/resources/nonprofit-lifecycle-matrix.pdf      

In this episode of Chasing the Insights, I talk to the host of one of the world's most popular YouTube channels, Jesús Ramirez. Jesús talks to us about how to get a million subscribers on YouTube. Jesús Ramirez is a graphic artist and educator specializing in Adobe Photoshop. His clients include Adobe, Microsoft, Motorola, and Conde Nast. Most recently, Jesús has worked as a Finisher in the Hollywood industry, creating film and TV posters for HBO, HULU, Netflix, and CBS. Jesús also runs the Photoshop Training Channel, one of the world's most popular Photoshop YouTube channels, with over 1.9 million subscribers. Over the last seven years, Jesús has been a speaker at over 30 conferences worldwide. Most notably, Adobe MAX, Creative Pro, Photoshop World, PhotoPlus, and WPPI. In 2019, Jesús was one of the 40 Under 40 recipients of Cal State East Bay.

Alex Vesia was a 17th Round Draft Pick out of a D2 called Cal State East Bay, and before that he was a 150-pound college freshman who couldn't squat 135. Now, he's a star reliever for the Los Angeles Dodgers with a fastball eclipsing 97 MPH and has one of the highest K/9 in Major League Baseball. His story is absolutely remarkable, and anyone who's looking to get some motivation for chasing their dreams is gonna love this episode. Hope you enjoy!

DB Bedford is the CEO and founder of iNeverWorry Consulting, a company that specializes in Emotional Intelligence training staff and leadership on how to effectively manage their behavior and make better personal decisions to achieve positive results. DB sits down with Dan Pontefract on Leadership NOW to discuss his latest book, "30 Days to Emotional Wellness" and all things emotional intelligence. One of the things that separates DB from his contemporaries is his empirical knowledge gained by growing up on the rough streets of Oakland, California which is a community that is regularly listed as one of the most violent cities in America. As a result of his turbulent upbringing DB ultimately learned how to use Emotional Intelligence to survive and navigate complex social situations. The authenticity of his background makes him uniquely qualified to administer this extremely multifaceted work. He has taught and trained staff at many of the world's top corporations and universities such as Kaiser Permanente, Sutter Health, Arizona State University and Cal State East Bay just to name a few.

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Ellen Bernstein-Ellis, Program Specialist at the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences, and a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's hosts for an episode featuring Dr. Arla Good and Dr. Jessica Richardson.        We will discuss the SingWell Project and the role of aphasia choirs from a bio-psychosocial model. Today's shows features the following gap areas from the Aphasia Access State of Aphasia Report authored by Nina Simmons-Mackie:  Gap area #3: insufficient availability of communication intervention for people with aphasia, or the need for services.  Gap area #8: insufficient attention to depression and low mood across the continuum of care.  Gap area #5: insufficient attention to life participation across the continuum of care. Guest Bios: Dr. Arla Good is the Co-director and Chief Researcher of the SingWell Project, an initiative uniting over 20 choirs for communication challenges around the world. Dr. Good is a member of the Science of Music, Auditory Research and Technology or SMART lab at Toronto Metropolitan University, formerly Ryerson University. Much of her work over the last decade has sought to identify and optimize music based interventions that can contribute to psychological and social well-being in a variety of different populations.  Dr. Jessica Richardson is an associate professor and speech-language pathologist at the University of New Mexico in the Department of Speech and Hearing Sciences, and the Center for Brain Recovery and Repair. She is director of the UN M brain scouts lab and the stable and progressive aphasia center or space. Her research interest is recovering from acquired brain injury with a specific focus on aphasia, recovery, and management of primary progressive aphasia. She focuses on innovations in assessment and treatment with a focus on outcome measures that predict real world communication abilities, and life participation. Listener Take-aways In today's episode you will: Learn about the SingWell Project model of supporting choirs and research around the world Learn which five clinical populations are the initial targets of the SingWell Project Discover how the SingWell Project is challenging the stigma about disability and singing Learn about some of the biopsychosocial measures being used to capture choir outcomes Transcript edited for conciseness Show notes Ellen Bernstein-Ellis  02:58 I'm going to admit that aphasia choirs have long been one of my clinical passions. I'm really excited and honored to host this episode today. I'd like to just start with a question or two that will help our listeners get to know you both a little better. So Arla, is it okay, if I start with you? Would you share what motivated you to focus your research on music-based interventions? Do you have a personal connection to music?   Arla Good  03:29 I feel like I could do a whole podcast on how I ended up in this field.   Ellen Bernstein-Ellis  03:33 That'd be fun.   Arla Good  03:34 There's just so many anecdotes on how music can be a powerful tool. I've experienced it in my own life, and I've witnessed it in other lives. I'll share one example. My grandfather had aphasia and at my convocation when I was graduating in the Department of Psychology with a BA, despite not being able to communicate and express himself, he sang the Canadian National Anthem, perfect pitch-- all of the words. It's just an accumulation of anecdotes like that, that brought me to study music psychology. And over the course of my graduate studies, I came to see how it can be super beneficial for specific populations like aphasia.    So, I do have a quote from one of our choir participants that really sparked the whole idea of SingWell. It was a Parkinson's choir that we were working with. And she says, “At this point, I don't feel like my Parkinson's defines me as much as it used to. Now that I've been singing with the group for a while, I feel that I'm also a singer who is part of a vibrant community.” And that really just encapsulates what it is and why I'm excited to be doing what I'm doing--  to be bringing more positivity and the identity and strength into these different communities.   Ellen Bernstein-Ellis  04:49 Yes, the development of positive self-identity in the face of facing adversity is such an important contribution to what we do and thank you for sharing that personal journey. That was really beautiful.  Jessica, I'm hoping to get to hear a little bit about why what your personal connection is to aphasia choirs and music.   Jessica Richardson  05:12 Again, so many things. I grew up in a musical household. Everyone in my family sings and harmonizes and it's just beautiful. But a lot of my motivation for music and groups came from first just seeing groups. So some early experience with groups at the VA. Seeing Dr. Audrey Holland in action, of course, at the University of Arizona-that's where I did my training. Dr. Elman, you, of course, so many great examples that led to the development of lots of groups. We do virtual online groups for different treatments, different therapies. We have space exploration. We have space teams, which is communication partner instruction that's virtual. So we do lots of groups. And of course, we have a neuro choir here in New Mexico. Now, I'm just so excited that there's so much research that's coming out to support it.    Ellen Bernstein-Ellis  06:03 Jessica, can I just give you a little shout out? Because you were visionary. You actually created these amazing YouTube videos of your choir singing virtually, even before COVID. And you came out with the first virtual aphasia choir. I remember just sitting there and just watching it and being amazed. And little did we know. I guess you knew! Do you want to just take a moment because I want to put those links in our show notes and encourage every listener to watch these beautiful virtual choir songs that you've done. You've done two right?   Jessica Richardson  06:44 Yes. And I could not have done it, I need to make sure I give a shout out to my choir director, Nicole Larson, who's now Nicole Larson Vegas. She was an amazing person to work with on those things. She also now has opened a branch neuro choir, just one town over. We're in Albuquerque and she's in Corrales and our members can go to either one. We coordinate our songs.    I'd really like to start coordinating worldwide, Ellen. We can share resources and do virtual choirs worldwide and with Aphasia Choirs Go Global. But I definitely want to give her a shout out. And then of course our members. I mean, they were really brave to do that. Because there was nothing I could point them to online already to say, “Hey, people are doing this. You do it.” So they were really courageous to be some of the first.   Ellen Bernstein-Ellis  07:36 Do you want to mention the two songs so people know what to look for? And just throw in the name of your choir.   Jessica Richardson  07:42 We're just the UNM neuro choir as part of the UNM Brain Scouts. The first song was The Rose. The second song was This is Me from the Greatest Showman. And the song journal that you could wait for in the future is going to be Don't Give Up On Me by Andy Grammer.    Ellen Bernstein-Ellis  08:01 Beautiful! I can hardly wait. And there are some endeavors and efforts being made to create these international groups. Thank you for doing a shout out to Aphasia Choirs Go Global, which is a Facebook group to support people who are involved in neuro and aphasia choirs. I'll give a shout out to Bron Jones who helped start it and Alli Talmage from New Zealand who has worked really hard to build a community there. It's been really wonderful to have a place where we can throw out questions to each other and ask for opinions and actually dig into some interesting questions like, “What measures are you using to capture X, Y, or Z?” I think we'll get to talk about some of that today, actually. So thank you.    I encourage our listeners to listen to those two YouTube videos we'll put in the show notes. But Jessica, I'm going to give you a twofer here. I've been following your amazing work for many years, but the first time I got to meet you in person was at an Aphasia Access Leadership Summit. I wanted to ask you as an Aphasia Access member, if you have any particular Aphasia Access memories that you could share with our listeners?   Jessica Richardson  09:09 Well, it was actually that memory. So, I would say my all-time favorite collection of Aphasia Access moments, really was working with my amazing colleague, Dr. Katerina Haley. She's at UNC Chapel Hil. We were co-program chairs for the Aphasia Access 2017 summit in Florida. The whole summit, I still think back on it and just smile so wide. And you know, we went to the museum, we were at the Aphasia House, just so many wonderful things. All of the round tables and the presentations, they just rocked my world. And it's just something I'm super proud to have been a part of behind the scenes making it happen. And I also remember that you wrote me the nicest note afterwards.    Ellen Bernstein-Ellis  09:54 It was just because it impacted me, too. Personally, I felt like it just cracked open such a world of being able to have engaging discussions with colleagues. Tom Sather, really named it the other day (at IARC) when he quoted Emile Durkheim's work on collective effervescence, the sense of being together with a community. I'm seeing Arla, nodding her head too.   Arla Good Yeah, I like that.   Ellen Bernstein-Ellis   Yeah, there was a lot of effervescing at these Leadership Summits, and we have one coming up in 2023. I'm really excited about it and hope to get more information out to our listeners about that. So I'll just say stay tuned. And you'll be hearing more, definitely.   I just want to do one more shout out. And that is, you mentioned international collaboration. I'd like to do a quick shout out to Dr. Gillian Velmer who has been doing the International Aphasia Choirs. I'll gather a couple of links to a couple of songs that she's helped produce with people around the world with aphasia singing together. So there's just some great efforts being done.    That's why I'm excited about launching into these questions. I want to start with an introduction of SingWell. Arla, would you like to get the ball rolling on that one?   Arla Good  11:09 For sure. SingWell began with my co-director, Frank Russo, and myself being inspired by that quote I shared at the beginning about singing doing something really special for these communities. We applied for a Government of Canada grant and we received what's called a Partnership grant. It really expanded well beyond just me and Frank, and it became a network of over 50 researchers, practitioners, national provincial support organizations, and it continues growing.    It's really about creating a flow of information from academia to the community, and then back to academia. So understanding what research questions are coming up in these communities of interests. And what information can we, as researchers, share with these communities? That's SingWell, I'll get into the research questions.   Ellen Bernstein-Ellis  12:03 Let's dive in a little bit deeper. What is SingWell's primary aim?  That's something you describe really well in an article we'll talk about a little later.   Arla Good  12:15 So our aim is to document, to understand, group singing as a strategy, as a way to address the psychosocial well-being and communication for people who are living with communication challenges. SingWell, we're defining a communication challenge as a condition that affects an individual's ability to produce, perceive or understand speech. We're working with populations like aphasia, but also people living with hearing loss, lung disease, stuttering. I hope, I don't forget anybody. There are five populations. Parkinson's, of course.   Ellen Bernstein-Ellis  12:53 Perfect. So that's your primary aim. Do you want to speak to any secondary or additional goals for your project?   Arla Good  13:03 The second major pillar of this grant is to advocate and share the information with these communities. So, how can we facilitate the transfer of this knowledge? We've started a TikTok channel, so you can watch videos. We have a newsletter and a website that's continuously being updated with all the new information. We want to develop best practice guides to share with these communities about what we've learned and how these types of choirs can be run. And really, just mobilize the network of partners so that we're ensuring the information is getting to the right community.   Ellen Bernstein-Ellis  13:35 Wow. Well, I mentioned a moment ago that there's a 2020 article that you wrote with your colleagues, Kreutz, Choma, Fiocco, and Russo that describes the SingWell project protocol. It  lays out your long term goals. Do you want to add anything else to what you've said about where this project is headed?   Arla Good  13:54 Sure, the big picture of this project is that we have a network of choirs that are able to address the needs of these different populations. I want the network to be dense and thriving. The home of the grant is Canada. But of course, we have partners in the states, like Jessica, and in Europe and in New Zealand. So to have this global network of choirs that people can have access to, and to advocate for a social prescription model in healthcare. Have doctors prescribing these choirs, and this network is available for doctors to see, okay, here's the closest choir to you. So, in some ways, this is a third goal of the project is to be building this case for the social prescription of singing.    Ellen Bernstein-Ellis  14:41 Before we go too much further, I want to acknowledge that you picked a wonderful aphasia lead, Dr. Jessica Richardson. That's your role, right? We haven't given you a chance to explain your role with SingWell. Do you want to say anything about that Jessica?   Jessica Richardson  14:58 Yeah, sure. I'm still learning about my role. Overall, I know theme leaders, in general, were charged with overseeing research directions for their theme. Aphasias, the theme that I'm leader of, and then monitoring progress of research projects and the direction of that. So far, it's mostly involved some advising of team members and reviewing and giving feedback of grant applications. I'm supposed to be doing more on the social and networking end and I hope to be able to make more that more of a priority next year, but I do think this podcast counts. So thank you for that.    Ellen Bernstein-Ellis  15:33 Well, you did a wonderful presentation. I should be transparent, I was invited to be on the Advisory Committee of SingWell, and I got to hear your first presentation at the first project meeting where each team leader explained their focus and endeavor. I was so excited to hear the way you presented the information on aphasia, because again, we know that for some people, aphasia is not a well-known name or word. And even though this is a very educated group, and I think everybody, all the leaders know about aphasia, but it was nice to see you present and put on the table some of the challenges and importance of doing this research.    One of the things that really attracted me when reading about that 2020 article is that you talk about SingWell having an ability versus disability focus early, Arla, could you elaborate on that?   Arla Good  16:22 Our groups are open to anybody, regardless of their musical, vocal or hearing abilities. And we compare it often to the typical talk-based support groups that focuses on challenges and deficits. Of course, there's a time and place, these can provide a lot of benefit for people living in these communities. So, this isn't a replacement for these types of support groups,  But, singing is a strength-based activity. They're working together to create a beautiful sound and there's often a performance at the end that they're very proud of. We're challenging stigma, especially in a population like aphasia, where it would seem like, oh, you have aphasia, you can't sing? But, of course they can. We're challenging that stigma of who can sing and who can't sing. We find that it's just so enjoyable for these people to be coming and doing something strength- based and feeling good. Going back to that, quote I said at the beginning, right? To feel like there's more to their identity than a diagnosis. This is what keeps them coming back.    Ellen Bernstein-Ellis  17:22 Beautifully said, and I can't help but think how that really connects with the life participation approach. There's no one better than Jessica, for me to throw that back out to her, and ask how she sees the connection between that.   Jessica Richardson  17:37 Yes, absolutely. Their focus on ability and fighting loneliness and isolation and on social well-being is right in line with it. Because LPAA is really focusing on reengagement in life, on competence, rather than deficits, on inclusion, and also on raising the status of well-being measures to be just as important as other communication outcomes.    I want to make sure we also bring up something from our Australian and New Zealand colleagues, the living successfully with aphasia framework, because it is also in line with LPAA and SingWell. I can say they have this alternative framework. They also don't want to talk about the deficit or disability. It doesn't try to ignore or even minimize the aphasia, but it emphasizes positive factors, like independence, meaningful relationships, meaningful contributions, like you know that performance. So there's just so much value and so much alignment with what Aphasia Access listeners and members really care about.    Ellen Bernstein-Ellis  18:44 That's a great transition for what I was thinking about next. I was very excited to see people talking about the 2018 review by Baker, Worrall, Rose and colleagues that identifies aphasia choirs as a level one treatment in the step psychological care model for managing depression in aphasia. So that's really powerful to me, and we're starting to see more research come out looking at the impact of participating in aphasia choirs. I'm really excited to see some of this initial research coming out.    Maybe you can address what some of the gaps in the literature might be when it comes to group singing? And its impact on well-being. Maybe Arla, we can start with that and then Jessica, you can jump in and address specifically communication and aphasia choirs. Arla, do you want to start out?   Arla Good  19:35 This is a very exciting time, like you said, there is research that is starting to come out. People are starting to study choirs as a way of achieving social well-being, psychological well-being and so the field is ripe and ready for some good robust scientific research.    Most of the studies that are coming out have really small sample sizes. It's hard to get groups together, and they often lack comparison groups. So what I think SingWell is going to do is help understand the mechanisms and what is so great about singing and what singing contributes. The other thing I'd like to mention is that with SingWell, our approach is a bit unique compared to what some of the other research researchers are doing, in that we're adopting a very hands-off approach to choir. So we're letting choir directors have the autonomy to organize based on their own philosophies, their expertise, and the context of their choirs. So we call it choir in its natural habitat.   And this is giving us the opportunity to explore group effects. What approach is the choir director taking and what's working, what's not working? And to have this large sample of different types of choirs, we can learn a lot from this number, this type of research project as well.   Ellen Bernstein-Ellis  20:54 What I really love about that is getting to know some of these wonderful colleagues through Aphasia Choirs Go Global and hearing about what their rehearsals and goals look like. There are some amazing similarities, just like saying, “You're doing that in Hungary? But we're doing that here, too.”  And there are some wonderful differences. I really firmly believe that there are a variety of ways to do this very successfully, just like there are a variety of ways to run successful aphasia groups, but there's going to be some core ingredients that we need to understand better.    Just before I go too far away from this, how about you? Do you want to speak to anything we need to learn in the literature about aphasia choirs?   Jessica Richardson  21:35 Yeah, I mean, I don't think I'm saying too much different than Arla. Arla, may want to follow up. But the main gap is that we just don't have enough evidence. And we don't have enough, like she said, solid methodology, high fidelity, to even support its efficacy to convince stakeholders, third party payers, etc. Anecdotal evidence is great, and YouTube videos that we create are also great, but it's not enough. And even more and more choirs popping up around the world, it's not enough.   We need that strong research base to convince the people that need convincing. SingWell is hoping to add to that through its pilot grants, through its methodology that they share for people to use. And I'm hopeful that other organizations, you know, like Aphasia Choirs Go Global, can link up at some point with saying, “Well, I'm excited about communities like that that are also supportive of researching choirs.” Arla, think I saw you're wanting to follow up.   Arla Good  22:31 I just wanted to add to something that Ellen had said about the power and diversity and having these different perspectives. And another goal of SingWell is to create, and it's up on the website already, it's a work in progress, it's going to continue growing, but a menu of options for choir directors who are looking to start a choir like this. Like if you want this kind of goal, here are some tips. So, if it's a social choir, you might want to configure the room in a circle. But if you have musical goals, maybe you want to separate your sopranos, your altos, tenors, and your bass. It's not one prescribed method. It's a menu of items that we're hoping we can through, this diversity of our network, that we can clarify for people who are trying to start a choir for themselves.   Ellen Bernstein-Ellis  23:19 I love that because I can hear in my head right now, Aura Kagan saying over and over again that the life participation approach is not a prescriptive approach. But rather, you're always looking at what is the best fit for your needs. Jessica, your head is nodding, so do you want to add anything?   Jessica Richardson  23:37 It's a way to shift your whole entire perspective and your framework. And that's what I love about it.   Ellen Bernstein-Ellis  23:44 We'll just go back to that 2020 article for a moment because I really liked that article. You and your authors describe four measures of well-being and there are potential neuroendocrinological, that's really a lot of syllables in here, but I'll try to say it again, neuroendocrinological underpinnings,    Arla Good   The hormones---   Ellen Bernstein-Ellis   Oh, that's better, thank you, the hormones, too. Could you just take a moment and please share what these four measures of well-being and their hormonal underpinnings might be?   Arla Good  24:11 For sure. The first one is connection, the connectedness outcome. So we're asking self-report measures of how connected people feel. But we're also measuring oxytocin, which is a hormone that's typically associated with social bonding.    The second measure is stress. And again, we're asking self-report measures, but we're also looking at cortisol, which is a hormone associated with stress.    The third measure is pain. And this one's a little bit more complex, because we're measuring pain thresholds. Really, it sounds scary, but what we do is apply pressure to the finger and people tell us when it feels uncomfortable. So it's actually well before anyone's experiencing pain. But we're thinking that this might be a proxy for beta endorphin release. So that's the underpinning there.    And then the last outcome is mood. This is also a self-report measure. And one of the types of analyses that we're running is we want to see what's contributing to an improved mood. Is it about the cortisol? Is it about just like deep breathing and feeling relaxed? Is it that or is there something special happening when they feel the rush of oxytocin and social connectedness? The jury's still out. These are super preliminary data at this point, especially with oxytocin, there's so much to learn. But those are some of the hormones, the sociobiological underpinnings that we're exploring.   Ellen Bernstein-Ellis  25:31 That makes for some really exciting research and the way you frame things, SingWell is supporting grants, maybe you could comment on how its biopsychosocial framework influences the methods and outcome measures that you want to adopt.   Arla Good  25:48 Sure, we do provide guidelines and suggestions for measures. Jessica alluded to this. We have it all up on the website, if anyone else wants to run a study like this. And then we have some that we're requiring of any study that's going to be funded through SingWell. And this is so we can address this small sample size problem in the literature. So the grant runs for six more years. It's a seven year grant. And at the end, we're going to merge all the data together for one mega study. We want to have some consistency across the studies, so we do have some that are required. And then we have this typical SingWell design. We're offering support for our research team, from what a project could look like.   Ellen Bernstein-Ellis  26:28 Well, this podcast typically has a wonderful diverse demographic, but it includes researchers. and clinical researchers who collaborate. So, let's take a moment and have you describe the grant review process and the dates for the next cycle, just in case people want to learn more.   Arla Good  26:45 Sure, so we are accepting grants from SingWell members. So the first step is to become a SingWell member. There is an application process on the website. We have an executive committee that reviews the applications twice a year, the next one is in scheduled for November. There's some time to get the application together. Once you're in as a member, the application for receiving funding is actually quite simple. It's basically just an explanation of the project and then it will undergo a review process. Jessica is actually one of our reviewers, so she can speak to what it was like to be a reviewer,   Ellen Bernstein-Ellis  27:21 That would be great because, Jessica, when you and I chatted about it briefly, I've never heard a reviewer be so excited about being supportive in this process. So please share a little bit more because I thought your perspective was so refreshing and positive.    Jessica Richardson  27:36 I have to say too, I have definitely benefited from having some amazing reviewers in my own lifetime. I definitely have to point out one who was so impactful, Mary Boyle, her review, it was so thorough, and it was so intense, but it elevated one of my first endeavors into discourse analysis to just like a different level. And just the way that she treated it as a way to help shape, she was so invested, in just making sure that we were the best product out there. I learned what the world needed to learn. I definitely learned a lot from that experience and from other reviewers like her that I've benefited from.    As a reviewer, whenever I review anything, I try to keep that same spirit. So when I was doing SingWell reviews, I made sure that I revisited the parent grant. I did a really good, thorough reread. I provided feedback and critiques from the lens of how does this fit with SingWell's aims? And, how can it be shaped to serve those aims if it isn't quite there yet? So it's never like, “Ah, no, this is so far off”, it was just like, “Oh, where can we make a connection to help it fit?” Then trying to provide a review that would be a recipe for success, if not for this submission cycle, then for the next.    And as a submitter, even though I mean, we didn't have a meeting to like all take this approach. But I felt that the feedback that I received was really in that same spirit. And so I love feedback in general. I don't always love the rejection that comes with it. But I do love stepping outside of myself and learning from that different perspective. And I've really just felt that this thing while reviewers were invested, and were really just interested in shaping submissions to success,   Ellen Bernstein-Ellis  29:24 That's really worthwhile, right? So you get something, even if you're not going to get funding. You still get to come away with something that's valuable, which is that feedback.    We've been talking about measures and I'm really interested in that as a topic. Jessica, could you take a moment and share a little bit about how SingWell's pre/post measures are being adopted for aphasia?  We all know that's some of the challenges. Sometimes, some of the measures that we use for mood, connectivity, or stress are not always aphasia-friendly. So what does that process look like?   Jessica Richardson  29:59 I will say they did their homework at the top end, even before the proposal was submitted. Really having you on the advisory board, and I was able to give some feedback on some of the measures. Some of the measures they've already selected were specific to aphasia. For Parkinson's disease, there are Parkinson's disease specific measures and for stuttering, specific measures. And for aphasia, they picked ones that are already aphasia-friendly. What I was super excited about too, is that they included discourse without me asking. It was already there. I think we helped build it to be a better discourse sample and we've added our own. So it's already in there as their set of required and preferred measures. But the other thing is that the investigator, or investigators, have a lot of latitude, according to your knowledge of the clinical population that you're working with, to add outcomes that you feel are relevant. That's a pretty exciting aspect of getting these pilot funds.    Ellen Bernstein-Ellis  30:58 So there's both some core suggested measures, but there's a lot of latitude for making sure that you're picking measures that will capture and are appropriate to your particular focus of your projects. That's great. Absolutely.   Jessica Richardson  31:09 I definitely feel that if there were any big issue that we needed to bring up, we would just talk to Arla and Frank, and they would be receptive.   Ellen Bernstein-Ellis  31:20 I've been very intrigued and interested in attempts to measure social connectedness as an outcome measure. You speak about it in your article, about the value of social bonding and the way music seems to be a really good mechanism to efficiently create social bonding. Is there something about choir that makes this factor, this social connectedness, different from being part of other groups? How are you going to even capture this this factor? Who wants to take that one?     Arla Good  31:50 I do, I can talk, we can do another podcast on this one.   Jessica Richardson  31:55 It's my turn, Arla. I'm just kidding (laughter).   Ellen Bernstein-Ellis  32:01 You can both have a turn. You go first, Arla,  And then Jessica, I think you will probably add,   Jessica Richardson  32:04 I'm totally kidding (laughter).   Ellen Bernstein-Ellis  32:06 Go ahead, Arla.   Arla Good  32:07 This is what I did my dissertation on. I truly believe in the power of group music making. So singing is just an easy, accessible, scalable way to get people to move together. It's consistent with an evolutionary account that song and dance was used by small groups to promote social bonding and group resiliency. I've seen the term collective effervescence in these types of writings.    When we moved together, it was like a replacement for in our great ape ancestors, they were one on one grooming, picking up the nits in each other's fur. Human groups became too large and too complex to do one on one ways of social bonding. And so we needed to develop a way to bond larger groups rapidly.    And the idea here is that movement synchrony, so moving together in precise time, was one way of connecting individuals, creating a group bond. Singing is just a fun way of doing that. I've been studying this for about 15 years and trying to understand. We've pared it down, right down to just tapping along with a metronome, and seeing these types of cooperation outcomes and feelings of social bonding, connectedness. I do think there's something special, maybe not singing specifically, but activities that involve movement synchrony. We could talk about drumming, we could talk about dance, I think that there is a special ingredient in these types of activities that promote social bonds.   Jessica Richardson  33:37 There's been some of us even looking at chanting, there's research about that as well.    Arla Good   We should do a SingWell study on chanting!   Ellen Bernstein-Ellis  33:43 Jessica, what else do you want to add about what is important about capturing social connectedness? Or, how do we capture social connectedness?     Jessica Richardson  33:53 I think I'll answer the first part, which is, what is special about thinking about it and capturing it. It's something that we've slowly lost over decades and generations, the communal supports. Our communities are weakened, we're more spread out. It's also a way of bringing something back that has been so essential for so long. We've weakened it with technology, with just all the progress that we've made. It's a way to bring something that is very primitive and very essential back. So, that doesn't totally answer your question, though.   Ellen Bernstein-Ellis  34:31 When we think about the isolation related to aphasia and the loss of friendship, and some of the wonderful research that's coming out about the value and impact of friendship on aphasia, and then, you think about choirs and some of this research--I believe choir is identified as the number one most popular adult hobby/activity. I think more people are involved in choirs as an adult. It's not the only meaningful activity, but it's a very long standing, well developed one,   Jessica Richardson  35:03 We have to figure out how to get the people though who will not touch a choir with a 10 foot pole?   Ellen Bernstein-Ellis  35:08 Well, we will continue to do the work on the other groups, right, that suits them very well. You know, be it a book club, or a gardening group, or a pottery class, or many, many, many other choices.   Jessica Richardson  35:21 Or a bell choir?   Ellen Bernstein-Ellis  35:24 Bell choirs are great, too.    Do either of you want to speak to what type of measures captures social connectedness or what you're using, or suggesting people try to use, for SingWell projects?   Jessica Richardson  35:38 I think Arla already captured some of those with those markers that she was talking about earlier. Hormonal markers. But the self-report questionnaires, and that perspective. There's other biomarkers that can very easily be obtained, just from your spirit. So I think that's going in the right direction, for sure.   Arla Good  35:59 Yeah, we've also looked at behavioral measures in the past like strategic decision making games, economic decision making games, and just seeing if people trust each other, and whether they're willing to share with each other. We've asked people how attractive they think the other people are. Questions like this that are capturing the formation of a group, whether they're willing to share with their in-group.  It's a question of in-group and out-group, and what are some of the effects of the in-group.     Jessica Richardson  36:26 And we're definitely exploring too, because we do a lot of neurophysiological recording in my lab. Is there a place for EEG here? Is there a place for fNIRS, especially with fNIRS, because they can actually be doing these things. They can be participating in choir, we can be measuring things in real time. While they're doing that, with the fNIRS-like sports packs, so sorry, fNIRS is functional near-infrared spectroscopy in case some of the listeners aren't sure.   Ellen Bernstein-Ellis  36:52 I needed help with that one too. Thank you.    I'm thinking about some of the work done by Tom Sather that talks about the sense of flow and its contribution to eudaimonic well-being, right? I think that's a key piece of what SingWell is looking at as well. It's exciting to look at all these different measures, and all these different pillars that you are presenting today.    And if people want to find out more about SingWell, do you want to say something about your website, what they might find if they were to go there?   Arla Good  37:25 Yes, go to the website, SingWell.org, pretty easy to remember. And on the website, you'll find all the resources to run a research study, to apply to be a member. We have resources for choir directors who are looking to start their own choir, we have opportunities to get involved as research participants if you're someone living with aphasia, or other communication challenges. There's lots of opportunities to get involved on the website. And you can sign up for our newsletter and receive the updates as they come and check out our website.   Ellen Bernstein-Ellis  37:57 That's great. I certainly have been watching it develop. And I think it has a lot of really helpful resources. I appreciate the work that's been put into that. How do people get involved in the SingWell project? You mentioned earlier about becoming a member. Is there anything else you want to add about becoming engaged with SingWell?    Arla Good  38:18 I think the ways to become involved, either becoming a member or starting a choir using the resources, or like I said, signing up for the newsletter just to stay engaged. And as a participant, of course, doing the surveys or signing up for a choir if you're one of the participants called.   Ellen Bernstein-Ellis  38:35 Thank you. I'm was wondering if you'd share with the listeners any sample projects that are underway.    Arla Good  38:46 For sure. So we have five funded studies this year. We have one ChantWell, which Jessica spoke about, assessing the benefits of chanting for breathing disorders. That's taking place in Australia. The effects of online group singing program for older adults with breathing disorders on their lung health, functional capacity, cognition, quality of life, communication skills and social inclusion. That is in Quebec, Canada. The third study, the group singing to support well-being and communication members of Treble Tremors. That's a Parkinson's choir taking place in Prince Edward Island, Canada. The fourth is how important is the group in group singing, so more of a theoretical question looking at group singing versus individual singing, an unbiased investigation of group singing benefits for well-being and that's also in Quebec. And then last but not least, I saved it for last, is our very own Jessica Richardson's group singing to improve communication and well-being for persons with aphasia or Parkinson's disease. So I thought I might let Jessica share, if she's open to sharing some of what the research study will entail.   Jessica Richardson  39:53 Oh, yes, thank you. When we first started our neuro choir, I had envisioned it as being an aphasia choir. And we had so much need in the community, from people with other types of brain injury. Our Parkinson's Disease Association, too, has really been reaching out ever since I've moved here. They have a group actually, they're called the Movers and Shakers, which I really love. So, we have a pretty healthy aphasia cohort of people who are interested, who also, you know, taking a break and only doing things virtually if they are interested, you know, since COVID. And then we have our Parkinson's cohort here as well, the Movers and Shakers, were following the suggested study design, it's a 12 week group singing intervention. They have suggestions for different outcome measures at different timescales, we're following that and adding our own outcome measures that we also feel are relevant. So we have those measures for communication and well-being, including the well-being biomarkers through the saliva. As she mentioned, already, we have latitude for the choir director, like who we want to pick and what she or he wants to do. We already have that person picked out. And we already know, and have all of that stuff figured out. There is some guidance, but again, flexibility for our session programming. And we have the choices over the homework programming, as well. We are really looking at this choir in the wild, and looking at those outcomes with their measures. So we're excited about it.   Ellen Bernstein-Ellis  41:22 I think you've just thought of a great name for a future aphasia choir, which is a “neuro choir choir in the wild”   Jessica Richardson  41:30 Well, out here, we're a choir in the wild, wild west.   Ellen Bernstein-Ellis  41:34 There you go. Absolutely. What have been some of the most surprising findings of the benefits of singing so far that have come in through the SingWell project? Either of you want to take that on?   Arla Good  41:46 I don't know if it's the most surprising, but it's definitely the most exciting. I'm excited to continue unpacking what's happening with oxytocin, I think it's a pretty exciting hormone, it's pretty hot right now. It's typically associated with being like a love hormone. They call it associated with sex, and it's associated with mother-infant bonding. If we can find a way that's not mother-infant or pair bonding to release oxytocin, that's very exciting. If group singing is one of those ways to promote this sense of “I don't know where I end and you begin, and we're one” and all those loving feelings. As Jessica mentioned, the missing piece, and how we relate to each other in a society, choir might be an answer to that. I'm really excited about the oxytocin outcome measure. Again, it's still very early, I don't want to say definitively what's happening, but it's a pretty exciting piece.   Jessica Richardson  42:45 I have a future doctoral student that's going to be working on this. That is the part she's most interested in as well..   Ellen Bernstein-Ellis  42:52 So there are some really good things that, hopefully, will continue to tell us what some of these benefits are and that it's important to fund and connect people to these types of activities. You said, this is like year one or two of a 6 year project, was that right? Or is it seven year?   Arla Good  43:09 It's seven year.   Ellen Bernstein-Ellis  43:10 So what is your hope for the future of the SingWell project?   Arla Good  43:15 The secondary goals would be the hope for the future, of actually creating change in the communities and getting people to think outside the box of providing care. Is there a choir that can be prescribed nearby? Is there a way to train these choir directors so that they have the correct training for this specific population? So drawing from the knowledge from speech- language therapy, from choir direction, from music therapy-   Ellen Bernstein-Ellis  43:42 Music therapy, right.   Arla Good  43:43 Of course, of course. So creating an accreditation program and training choir directors to lead choirs like this, and having this army of choir directors around the world that are doing this. So, this is a big goal. But that's what I hope to see.   Ellen Bernstein-Ellis  44:00 That's fantastic. And I think there's some researchers who are really working hard at looking at protocols and asking these questions. And I know, I've been inspired by some of the work that Ali Talmage is doing in New Zealand that's looking at some of these questions. And, Jessica, do you want to add what's your hope is as aphasia lead? Or, what you're thinking about for the SingWell project that you're excited about?   Jessica Richardson  44:21 We have to generate that evidence that we need and mentioning again, those 10 foot pole people, to reach out to let people know that choirs aren't just for people who think that they can sing. We definitely have had some very energetic and enthusiastic choir members who think that they can sing and cannot, and they're still showing up. Maybe you're the one who thinks that choirs aren't for you. If we can generate enough energy, inertia, and evidence to convince those that it might be worth giving a try. I think some of them are going to be surprised that they enjoy it and “oh, I can sing.” So I think that to me is a future hoped for outcome.    And then again, seeing it spread out to other gardening groups, other yoga groups, all these other things that we know are happening within Aphasia Access members and beyond to see, okay, there's this methodology. This is what's used to study something like this, let's apply it also so that its efficacy data for these other approaches that we know and we see can be helpful, but we don't have enough proof to have someone prescribe it and to get those stakeholders involved.   Ellen Bernstein-Ellis  45:33 Yes. And we talked about the importance of some of the work that's being done with mental health and aphasia and how some of the information that you're pursuing could really tie in and help us support and get more work in that area as well. So really exciting.    I can't believe we have to wrap up already. I agree with you all, that we could just keep talking on this one. But let's just end on this note, I would like to find out from both of you. If you had to pick just one thing that we need to achieve urgently as a community of providers and professionals, what would that one thing be? What would you like to speak to? At the end of this discussion we've had today and Arla, you get to go first again.   Arla Good  46:15 The one thing we need to achieve urgently is to find a way to address people's needs in a more holistic way. And to see the human as a whole, that it's not just this piece and this piece and this piece, but all of it together? And how can we do that? How can we communicate better as practitioners, as researchers, so that we can address these needs more holistically?   Ellen Bernstein-Ellis  46:36 Thank you. Thank you. And Jessica, what would you like to say?   Jessica Richardson  46:41 I could just say ditto. I totally agree. So the end.    But I think the other part is from a clinician standpoint. What I hear most from colleagues that are out there in the wild, and former students, is that they want the “How to” info which is perfect, because, SingWell has a knowledge mobilization aim, and the exact aim of that is to develop and share best practice guides, which you know, are already mentioned, choir sustainability guides, how to fund it, how to keep it going. Really important. And they're going to update these regularly. It's going to be available in lots of languages. So that's something I'm especially excited for, for our community, because I know so many people who want to start a choir, but it feels too big and intimidating, and maybe they don't feel like they have the musical chops. But this will really help them get over that hump to get started and will address that need. And that desire, that's already there, in a big way.        Ellen Bernstein-Ellis  47:42 Thank you. I'm so appreciative that you both made this happen today. It was complicated schedules. And I just really, really appreciate want to thank you for being our guests for this podcast. It was so much fun. I'm excited to follow the SingWell project over the next seven years and see what continues to grow and develop.    So for more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasiaaccess.org And if you have an idea for a future podcast series topic, just email us at info@aphasiaaccess.org And thanks again for your ongoing support of Aphasia Access. Arla, Jessica, thank you so much. Thank you.    References and Resources  UNM Neuro Choir: https://www.youtube.com/watch?v=zQuamJgTVj8&list=PLy586K9YzXUzyMXOOQPNz3RkfRZRqtR-L&index=5 https://www.youtube.com/watch?v=guU_uRaFbHI&list=PLy586K9YzXUzyMXOOQPNz3RkfRZRqtR-L&index=6 https://www.youtube.com/watch?v=Q4_0Xd7HNoM&list=PLy586K9YzXUzyMXOOQPNz3RkfRZRqtR-L&index=7   www.singwell.org Good, A., Kreutz, G., Choma, B., Fiocco, A., Russo, F., & World Health Organization. (2020). The SingWell project protocol: the road to understanding the benefits of group singing in older adults. Public Health Panorama, 6(1), 141-146. Good, A., & Russo, F. A. (2022). Changes in mood, oxytocin, and cortisol following group and individual singing: A pilot study. Psychology of Music, 50(4), 1340-1347.    

Interviewer I'm Ellen Bernstein-Ellis, Program Specialist and Clinical Supervisor for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA's strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.  Today, I have the honor of speaking with Dr. Jamie Lee who was selected as a 2022 Tavistock Distinguished Scholar. We'll discuss her research interests and do a deeper dive into her work involving the study of texting behaviors of individuals with aphasia and her efforts to develop an outcome measure that looks at success at the transactional level of message exchange.  As we frame our podcast episodes in terms of the Gap Areas identified in the 2017 Aphasia Access State of Aphasia  Report by Nina Simmons-Mackie, today's episode best addresses Gap areas:  Insufficient attention to life participation across the continuum of care;  Insufficient training and protocols or guidelines to aid implementation of participation-oriented intervention across the continuum of care;  Insufficient or absent communication access for people with aphasia or other communication barriers  For more information about the Gap areas, you can listen to episode #62 with Dr. Liz Hoover or go to the Aphasia Access website.   Guest bio Jaime Lee is an Associate Professor in the department of Communication Sciences and Disorders at James Madison University. Jaime's clinical experience goes back nearly 20 years when she worked as an inpatient rehab SLP at the Rehabilitation Institute of Chicago (now Shirley Ryan Ability Lab). She later worked for several years as a Research SLP in Leora Cherney's Center for Aphasia Research and Treatment. Jaime earned her PhD at the University of Oregon, where she studied with McKay Sohlberg. Her research interests have included evaluating computer-delivered treatments to improve language skills in aphasia, including script training and ORLA, examining facilitation of aphasia groups, and most recently, exploring text messaging to improve participation, social connection and quality of life in IWA.   Listener Take-aways In today's episode you will: Learn about why texting might be a beneficial communication mode for IwA Explore the reasons it's important to consider the communication partner in the texting dyad Find out more about measures examining texting behaviors, like the Texting Transactional Success (TTS) tool. Consider how Conversational Analysis may be helpful in understanding texting interactions Edited show notes Ellen Bernstein-Ellis Jamie, welcome to the podcast today. I'm so excited that we finally get to talk to you. And I want to offer a shout out because you mentioned two mentors and colleagues who I just value so much, McKay Solberg and Leora Cherney, and I'm so excited that you've also had them as mentors.   Jaime Lee  02:44 Thanks, Ellen. It's really great to talk with you today. And speaking of shout outs, I feel like I have to give you a shout out because I was so excited to meet you earlier this summer at IARC. We met at a breakfast. And it was exciting because I got to tell you that I assigned to my students your efficacy of aphasia group paper, so it was really fun to finally meet you in person.   Ellen Bernstein-Ellis  03:11 Thank you, that is the paper that Roberta Elman was first author on. I was really proud to be part of that.   I was excited to get to come over and congratulate you at the breakfast on your Tavistock award. I think it's very, very deserving. And I'm excited today that we can explore your work and get to know each other better. And I'm just going to start with this question about the Tavistock. Can you share with our listeners what you think the benefits of the Tavistock Distinguished Scholar Award will be to your work? Jaime Lee  03:43 Sure, I think first off being selected as a Tavistock Distinguished Scholar has been really validating of my work in terms of research and scholarship. It's made me feel like I'm on the right track. And at least maybe I'm asking the right kinds of questions. And it's also really meaningful to receive an award that recognizes my teaching and impact on students. And I was thinking about this and a conversation that I had with my PhD mentor McKay Solberg. And it was early into my PhD when we were talking about the impact of teaching and how important it was, where she had said that when we work as a clinician, we're working directly with clients and patients were hopefully able to have a really positive meaningful impact. But when we teach, and we train the next generation of clinicians, you know, we have this even greater impact on all of the people that our students will eventually work with throughout their career. And so that's just huge.  Ellen Bernstein-Ellis  04:51 It really is huge. And I have to say I went to grad school with McKay and that sounds like something she would say, absolutely, her value of teaching.  I just want to do a quick shout out to Aphasia Access, because I think they also recognize and value the importance of teaching. They have shown that commitment by their LPAA curricular modules that they developed and make accessible to Aphasia Access members, so people can bring content right into their coursework, which is helpful because it takes so much time to prepare these materials. So, if you haven't heard of these curricular modules yet, please go to the website and check them out.  So yes, I'm so glad that you feel your work is validated. It's really important to validate our young researchers.  I think there's an opportunity to expand who you meet during this year. Is that true? Jaime Lee  05:40 That is already true. This honor has already led to growing connections with other aphasia scholars and getting more involved with Aphasia Access. I'm excited to share that I'll be chairing next year's 2023 Aphasia Access Leadership Summit together with colleagues Esther Kim and Gretchen Szabo. We're really enthusiastic about putting together a meaningful and inspiring program. I am just really grateful for the opportunity to have a leadership role in the conference. Ellen Bernstein-Ellis  06:17 Wow, that's a fantastic team. And I, again, will encourage our listeners, if you've never been to a Aphasia Access  Leadership Summit, it is worth going to and everybody is welcomed. We've had several podcast guests who have said that it has been a game changer for them-- their first attendance at the Leadership Summit. So, we'll be hearing more about that.  Well, I want to start our interview today by laying some foundation for your work with texting and developing some outcome measures for treatment that captures transactional exchange in individuals with aphasia. And let me just ask what piqued your interest in this area? Jaime Lee  06:57 Yeah, thanks. Well, before I got interested specifically, in texting, I had this amazing opportunity to work as a research SLP with Leora Cherney and her Center for Aphasia Research and Treatment. And we all know Leora well for the contributions she's made to our field. At that time, she had developed ORLA, oral reading for language and aphasia, and a computerized version, and also a computerized version of aphasia scripts for script training. And these were treatments that not only improve language abilities in people with aphasia, but I really had this front row seat to seeing how her interventions really made a difference in the lives of people with aphasia, and help them reengage in the activities that they wanted to pursue-- reading for pleasure and being able to converse about topics that they want to do with their script training. So at the same time, I was gaining these really valuable research skills and understanding more about how to evaluate treatment. I was also able to start learning how to facilitate aphasia groups because Leora has this amazing aphasia community that she developed at what was then RIC. I'm just really grateful for the opportunity I had to have Leora as a mentor, and now as a collaborator. And her work really helped orient me to research questions that address the needs of people with aphasia, and to this importance of building aphasia community. Ellen Bernstein-Ellis  08:37 Wow, that sounds like a really amazing opportunity. And I think it's wonderful that you've got to have Leora as a mentor and to develop those interests. Then look at where you're taking it now. So that's really exciting to talk about with you today. Jaime Lee  08:54 As for the texting interest that really started after I earned my PhD and was back at the Rehab Institute, now Shirley Ryan Ability Lab, Leora was awarded a NIDILRR field initiated grant and I served as a co-investigator on this grant. It was a randomized, controlled trial, evaluating ORLA, combined with sentence level writing.  The two arms of the trial were looking at ORLA plus writing using a handwriting modality, versus ORLA combined with electronic writing or we kind of thought about this as texting. So we call that arm T-write. And ORLA was originally designed to improve reading comprehension, but we know from some of Leora's work that there were also these nice cross-modal language improvements, including improvements in written expression. This was a study where we really were comparing two different arms, two different writing modalities, with some secondary interest in seeing if the participants who were randomized to practice electronic writing, would those improvements potentially carry over into actual texting, and perhaps even changes in social connectedness? Ellen Bernstein-Ellis  10:15 Those are great questions to look at. Interest in exploring texting's role in communication has just been growing and growing since you initiated this very early study. Jamie, would you like to explain how you actually gathered data on participants texting behaviors? How did that work? Jaime Lee  10:32 Yes. So we were very fortunate that the participants in this trial, in the T-write study, consented to have us extract and take a look at their real texting data from their mobile phones prior to starting the treatment. So, for those who consented, and everyone, I think we had 60 participants in the trial, and every single participant was open to letting us look at their texts and record them.    We recorded a week's worth of text messages between the participant and their contacts at baseline, and then again at a follow up point after the treatment that they were assigned to. And that was so that maybe we could look for some potential changes related to participating in the treatment. So maybe we would see if they were texting more, or if they had more contacts, or maybe they might even be using some of the same sentences that were trained in the ORLA treatment. We haven't quite looked at that, the trial just finished so we haven't looked at those pre/ post data. But when my colleagues at Shirley Ryan and I started collecting these texting data, we realized there were some really interesting things to be learned from these texts.  And there have been a couple of studies, we know Pagie Beeson's work, she did a T-CART study on texting, right? And later with her colleague, Mira Fein. So we had some texting studies, but nothing that really reported on how people with aphasia were texting in their everyday lives.  Ellen Bernstein-Ellis  12:08 Well, Jamie, do you want to share what you learned about how individuals with aphasia texts are different from individuals without aphasia? Jaime Lee  12:15 We saw that first, people with aphasia do text, there were messages to be recorded. I think only a couple of participants in the trial didn't have any text messages. But we took a look at the first 20 people to enroll in the trial. We actually have a paper out-- my collaborator, Laura Kinsey is the first author. This is a descriptive paper where we describe the sample, 20 people, both fluent aphasia and nonfluent aphasia, a range of ages from mid 30s up to 72. And one striking finding, but maybe not too surprising for listeners, is that the participants with aphasia in our sample texted much less frequently than neurologically healthy adults, where we compared our findings to Pew Research data on texting. And our sample, if we took an average of our 20 participants and look at their texts sent and received over a week, over the seven days, they exchanged an average of about 40 texts over the week. Adults without aphasia, send and receive 41.5 texts a day. Ellen Bernstein-Ellis  13:36 Wow, that's quite a difference. Right?  Jaime Lee  13:39 Yes, even knowing that younger people tend to text more frequently than older adults. Even if we look at our youngest participants in that sample who were in their mid 30s, they were sending and receiving text much less frequently than the age matched Pew data. Ellen Bernstein-Ellis  13:56 Okay, now, I want to let our listeners know that we're going to have the citation for the Kinsey et al. article that you just mentioned in our show notes. How can we situate addressing texting as a clinical goal within the life participation approach to aphasia?  Jaime Lee  14:14 I love this question. And it was kind of surprising from the descriptive paper, that texting activity, so how many texts participants were sending and receiving, was not correlated with overall severity of aphasia or severity of writing impairment?  Ellen Bernstein-Ellis I'm surprised by that. Were you?    Jaime Lee Yes, we thought that there would be a relationship. But in other words, having severe aphasia was not associated with texting less. And we recognize, it's dangerous to draw too many conclusions from a such a small sample. But a major takeaway, at least an aha moment for us, was that we can't make assumptions about texting behaviors based on participants' language impairments, also based on their age, their gender. You know, in fact, our oldest participant in the sample, who was 72, was actually most active texter. He sent and received 170 texts over the week period. Ellen Bernstein-Ellis  15:22 Wow, that does blow assumptions out of the water there, Jamie. So that's a really good reminder that this to be individualized with that person at the center? Because you don't know.  Jaime Lee  15:32 You don't know. Yeah. And I think it comes down to getting to know our clients and our patients, finding out if texting is important to them. And if it's something they'd like to be doing more of, or doing more effectively, and going from there.    Ellen Bernstein-Ellis Wow, that makes a lot of sense.    Jaime Lee   Yeah, of course, some people didn't text, before their stroke and don't want to text. But given how popular texting has become as a form of communication, I think there are many, many people with aphasia, who would be interested in pursuing texting as a rehab goal.   Ellen Bernstein-Ellis  16:08 Right? You really have to ask, right?    Jaime Lee  16:11 Yes, actually, there's a story that comes to mind about a participant who was in the T-write study, who had stopped using her phone after her stroke. Her family had turned off service; she wasn't going to be making calls or texting.   Ellen Bernstein-Ellis Well, I've seen that happen too many times.  Jaime Lee   And when she enrolled in the study, and she was a participant at Shirley Ryan, because we ran participants here at JMU and they ran participants in Chicago. And she was so excited. I heard from my colleagues that she went out and got a new phone so that she could use her phone to participate in the study. And then her follow up data. When we look at her real texts gathered after the study at the last assessment point, her text consists of her reaching out to all of her contacts with this new number, and saying hello, and getting in touch and in some cases, even explaining that she'd had a stroke and has aphasia.  Ellen Bernstein-Ellis  17:13 Oh, well, that really reminds me of the value and importance of patient reported outcomes, because that may not be captured by a standardized test, per se, but man, is that impactful. Great story. Thank you for sharing that. So well, you've done a really nice job in your 2021 paper with Cherney that's cited in our show notes of addressing texting's  role in popular culture and the role it's taking in terms of a communication mode. Would you explain some of the ways that conversation and texting are similar and ways that they're different? Jaime Lee  17:45 That is a great question, Ellen and a question I have spent a lot of time reading about and thinking about. And there is a great review of research that used conversation analysis (CA) to study online interactions. This is a review paper by Joanne Meredith from 2019. And what the review tells us is that there are many of the same organizing features of face to face conversation that are also present in our online communications. So we see things like turn taking, and we see conversation and texting or apps unfold in a sequence. So what CA refers to as sequential organization.  We also see, just like in face to face conversation, there are some communication breakdowns or trouble sources in online communication. And sometimes we see the need for repair to resolve that breakdown. Ellen Bernstein-Ellis  18:45 Yeah, Absolutely. I'm just thinking about auto corrects there for a moment. Jaime Lee  18:51 And they can cause problems too. When the predictive text or the AutoCorrect is not what we meant to say that can cause a problem.Ellen Bernstein-Ellis  18:59 Absolutely. Those are good similarities, I get that.   Jaime Lee  19:03 I think another big similarity is just about how conversation is co-constructed. It takes place between a person and a conversation partner and in texting, we have that too. We have a texting partner, or in the case of a group text, we have multiple partners. There's definitely similarities. And another big one is that purpose, I think we use conversation ultimately, and just like we're using texting to build connection, and that's really important Ellen Bernstein-Ellis  19:32 Yeah, I can really see all of those parallels. And there are some differences, I'm going to assume. Jaime Lee  19:39 Okay, yes, there are some definite interesting differences in terms of the social aspects of conversation. We do a lot in person, like demonstrating agreement, or giving a compliment, or an apology, or all of these nonverbal things we do like gesture and facial expression and laughter. Those nonverbal things help convey our stance, or affiliation, or connection. But in texting, we can't see each other. Right? So we have some different tools to show our stance, to show affiliation. What we're seeing is people using emojis and Bitmojis, and GIFs, even punctuation, and things like all capitals. We've all seen the all caps and felt like someone is yelling at us over text, that definitely conveys a specific tone, right? Ellen Bernstein-Ellis  20:34 I was just going to say emojis can be a real tool for people with aphasia, right? If the spelling is a barrier, at least they can convey something through an image. That's a real difference.   Jaime Lee  20:45 Absolutely, I think some of the problematic things that can happen and the differences with texting have to do with sequencing and timing. Because people can send multiple texts, they can take multiple turns at once. And so you can respond to multiple texts at once, or that can lead to some confusion, I think we're seeing, but texting can also be asynchronous, so it's not necessarily expected that you would have to respond right away Ellen Bernstein-Ellis  21:16 So maybe giving a person a little more time to collect their thoughts before they feel like they have to respond versus in a person-to-person exchange where the pressure is on?    Jaime Lee   Absolutely, absolutely.  Ellen Bernstein-Ellis Well, why might texting be a beneficial communication mode for individuals with aphasia, Jamie, because you have spelling challenges and all those other things.   Jaime Lee  21:37 Yeah, I think it comes back to what you just said, Ellen, about having more time to read a message, having more time to be able to generate a response. I know that texting and other forms of electronic communication like email, can give users with memory or language problems a way to track and reread their messages. And in some cases, people might choose to bank responses that they can use later. We know this from actually some of Bonnie Todis and McKay Sohlberg's work looking at making email more accessible for users with cognitive impairment. So I think there are some really great tools available to people with aphasia to feel successful using texting. Ellen Bernstein-Ellis  22:30 That's great. I think banking messages is a really important strategy that we've used before, too.  Jaime Lee  22:37 So there's all these other built-in features, that I'm still learning about that are in some mobile phones, that individuals with aphasia can potentially take advantage of. I think some features might be difficult, but there are things like we've just talked about, like the predictive text or the autocorrect. And then again, all these nonlexical tools, like the emojis and the GIFS and being able to link to a website or attach a photograph. I think this is a real advantage to communicating through text. Ellen Bernstein-Ellis  23:10 It lets you tell more of the story, sometimes. One of my members talks about when his spelling becomes a barrier, he just says the word and then that speech-to-text is really helpful. It's just one more support, I guess.   Jaime Lee  23:24 Yes. And we're needing to find out a little bit more about the features that people are already using, and maybe features that people don't know about, but that they would like to use like that speech-to-text. That's a great point.    Ellen Bernstein-Ellis  23:37 Well, how did you end up wanting to study texting for more than an amount of use or accuracy? In other words, what led you to studying transaction? Maybe we can start with a definition of transaction for our listeners?  Jaime Lee  23:51 Sure. Transaction in the context of communication is the exchange of information. So it involves understanding and expression of meaningful messages and content. And this is a definition that actually comes from Brown and Yule's concepts of transaction and interaction and communication. So Brown, and Yule tell us that transaction again, is this exchange of content, whereas interaction pertains to the more social aspects of communication. Ellen Bernstein-Ellis  24:26 Okay, thank you. I think that's really good place to start. Jaime Lee  24:29 Part of the interest in transaction, first came out of that descriptive paper where we were trying to come up with systems to capture what was going on. So we were counting words that the participants texted and coding whether they were initiated or are they texts that are simple responses. We counted things they were doing, like did they use emojis or other multimedia? But we were missing this idea of how meaningful their text were and kind of what was happening in their texting exchanges. So this kind of combined with another measure we had, it was another measure in T-write really inspired by Pagie Beeson and Mira Fein's paper where they were using some texting scripts in their study.  We also love scripting. We wanted to just have a simple measure, a simple brief texting script that we could go back and look at. We had as part of our protocol a three turn script. And I remember we sat around and said, what would be a really common thing to text about? And we decided to make a script about making dinner plans. And so we're collecting these simple scripts. And as I'm looking at these data coming in, I'm asking myself, what's happening here? How are we going to analyze what's happening? What was important didn't seem to be spelling or grammar. What seemed most important in this texting script was how meaningful the response was. And ultimately, would the person be able to make dinner plans and go plan a dinner date with a friend. So it seemed like we needed a measure of successful transaction within texting. Ellen Bernstein-Ellis  26:23 Jamie, I'm just going say that that reminded me of one of my very favorite papers, whereas you started out counting a lot of things that we can count, and it did give you information, like how much less people with aphasia are texting compared to people without aphasia, and I think that data is really essential. But there's a paper by Aura Kagan and colleagues about counting what counts, right, not just what we can count. And we'll put that citation and all the citations in the show notes-- you're  bringing up some wonderful literature. So I think you decided to make sure that you're counting what counts, right? In addition to what we can count.    Jaime Lee  26:59 Yes. And I do love counting. I was trained at the University of Oregon in single case experimental design. So really, behavioral observation and counting. So I am a person who likes to count but that sounds, like counting what counts. I love that. Ellen Bernstein-Ellis  27:13 Yeah, absolutely. In that 2021 paper, you look at the way some researchers have approached conversational analysis measures and you acknowledge Ramsberger and Rende's 2002 work that uses sitcom retells in the partner context. And you look at the scale that Leaman and Edmonds developed to measure conversation. And again, I can refer listeners to Marion Leaman's podcast as a 2021 Tavistock distinguished scholar that discusses her work on capturing conversation treatment outcomes, but you particularly referred to Aura Kagan and colleagues' Measurement of Participation in Conversation, the MPC. We'll put the citation in the show notes with all the others, but could you describe how it influenced your work?   Jaime Lee  27:58 Yeah, sure. That's funny that you just brought up a paper by Aura Kagan, because I think I'll just first say how much Aura's work on Supported Conversation for Adults with Aphasia, SCA, how influential it's been throughout my career. First as a clinician and actually interacting with people with aphasia, and then later in facilitating conversation groups and helping to train other staff on the rehab team, the nursing staff. And now, it's actually a part of my coursework that I have students take the Aphasia Institute's free eLearning module, the introduction to SCA, as part of my graduate course, and aphasia, and all of the new students coming into my lab, do that module. So they're exposed really early on to SCA. Ellen Bernstein-Ellis  28:50 I'm just gonna say me too. We also use that as a training tool at the Aphasia Treatment Program, It's really been a cornerstone of how we help students start to learn how to be a skilled communication partner. So I'm glad you brought that up. Jaime Lee  29:03 Absolutely. So yes, Kagan's Measurement of Participation in Conversation (MPC), was really influential in developing our texting transactional success rating scale. And this is a measure that they created to evaluate participation and conversation. And they were looking actually both at transaction and interaction, I needed to start simply and just look at transaction first. They considered various factors. They have a person with aphasia and a partner engage in a five minute conversation. And they looked at factors like how accurately the person with aphasia was responding, whether or not they could indicate yes/no reliably, and could they repair misunderstandings or miscommunications. And then the raters made judgments on how transactional was that conversation? So, we looked at that measure and modeled our anchors for texting transactional success after their anchors. We had a different Likert scale, but we basically took this range from no successful transaction, partial transaction, to fully successful. And that was really modeled after their MPC.   Ellen Bernstein-Ellis  30:17 Wow. Thank you for describing all of that. Jaime Lee  30:20 Yeah. Another big takeaway I'll add is that, and this really resonated with what we were hoping to capture, the scores on the MPC weren't necessarily related to traditional levels of severity. So Kagan and colleagues write that someone even with very severe aphasia, could score at the top of the range on the MPC. And I think similarly, what we feel about texting is even someone with severe writing impairments could be very successful, communicating via text message, really, depending on the tools they used, and perhaps, depending on the support they received from their texting partner.   Ellen Bernstein-Ellis  31:02 You and your colleagues develop this Texting Transaction Success tool, the TTS, right? What is the goal of this measure?    Jaime Lee  31:13 The goal of the TTS is to measure communicative success via texting. We wanted this functional measure of texting, not limited to accuracy, not looking specifically at spelling, or syntax, or morphology, but something that reflected the person with aphasia-- his ability to exchange meaningful information. I think the measure is really grounded in the idea that people with aphasia are competent and able to understand and convey meaningful information even despite any errors or incorrect output. So this is really relevant to texting because lots of us are using texting without correct spelling or without any punctuation or grammar. Yet lots and lots of people are texting and conveying information and feeling that benefit of connecting and exchanging information. Ellen Bernstein-Ellis  32:08 It sounds like a really helpful tool that you're developing. Could you please explain how it's used and how it's scored? Jaime Lee  32:16 Sure. So the TTS is a three-point rating scale that ranges from zero, which would be no successful transaction, no meaningful information exchanged, one, which is partial transaction, to two, which is successful transaction. And we apply the rating scale to responses from an individual with aphasia on the short texting script that I was talking about earlier. So this is a three-turn script that is delivered to a person with aphasia where the first line there, we ask them to use their mobile phone or give them a device, and the prompt is: “What are you doing this weekend?” We tell the person to respond any way they want, without any further cues. And then the script goes on, we deliver another prompt, “What about dinner?” And then another prompt, “Great, when should we go?” Each of those responses, we score on the TTS rating scale. We give either a zero, a one or a two. We have lots of examples in the paper of scores that should elicit a zero, a one or a two.We feel like it should be pretty easy for readers to use.   Ellen Bernstein-Ellis  33:33 Wow, that's going to be really important. I always appreciate when I can see examples of how to do things. Jaime Lee  33:40 We did some really initial interrater reliability on it. The tools are pretty easy to score. We're able to recognize when something is fully transactional, even if it has a spelling error or lexical error, we can understand what they're saying. And a zero is pretty easy to score, if there are graphemes letters that don't convey any meaning, there's no transaction. Where things are a little more interesting, are the partial transaction. I think about an example to “What about dinner” and the participant responded, “Subway, Mexico.” So that's a one because the conversation, the texting partner, would really need to come back and clarify like, “Do you want to get a Subway sandwich?”  Or “Do you want to go eat Mexican?” It could still be really transactional, and they could resolve that breakdown, but the partner would have a little bit more of a role in clarifying the information. Ellen Bernstein-Ellis  34:36 When you were actually trying to validate the TTS and establish its interrater reliability in your 2021 article with Cherney you mentioned using the Technology Confidence Survey from the 2021 Kinsey et al. article. Having tools that allow us to understand our clients' technology user profile is really informative in terms of understanding what modes of communication might be important to them. We talked earlier about not assuming, right, not assuming what people want to do or have done. Can you describe the survey? And is it available? Jaime Lee  35:13 Sure, yes. This is a survey we developed for the T-write study, the ORLA Plus Electronic Writing study. It's a simple aphasia friendly survey with yes/no questions and pictures that you can ask participants or clients about their technology usage. from “Are you using a computer? Yes or No” or  “Are using a tablet?”, “Are you using a smartphone?”  We ask what kinds of technology they're using and then what are they using it for? Are they doing email? Are they texting? Are they looking up information? Are they taking photos?  It also has some prompts to ask specifically about some of the technology features like “You're texting? Are you using voice to text?” or “Are you using text to speech to help you with reading comprehension of your text?”  At the very end, we added some confidence questions. We modeled this after Leora Cherney and Ed Babbitt's Communication Confidence Rating scale. So we added some questions like, “I am confident in my ability to use my smartphone” or “I am confident in my ability to text” and participants can read that on a rating scale. We use this in the context of the research study to have some background information on our participants. I think it could be a really great tool for starting a conversation about technology usage and goals, with people who are interested in using more technology, or are using it in different ways. This (survey) is in the Kinsey et al. article. It's a supplement that you can download. It's just a really good conversation starter, that when I was giving the technology survey to participants, many times they would take out their phone or take out their iPad and say, “No, I do it. I use it just like this”. It was really hands on and we got to learn about how they're using technology. And I definitely learned some new things that are available. Ellen Bernstein-Ellis  37:20 I think many of us use kind of informal technology surveys.  I'm really excited to see the very thoughtful process you went through to develop and frame that (technology use). That's wonderful to share. Jamie, can you speak to the role of the TTS in terms of developing and implementing intervention approaches for texting? You just mentioned goals a moment ago? Jaime Lee  37:42 Sure. I think we have some more work to do in terms of validating the TTS and that's a goal moving forward. But it's a great starting place. If you have a client who wants to work on texting, it only takes a few minutes to give the script and then score their responses and gives us a snapshot of how effectively they're able to communicate through text. But in terms of developing intervention, to support texting, that's really where we're headed with this. I mean, the big drive is to not just study how people are texting, but really to help support them and texting more effectively and using texting to connect socially and improve their quality of life. But with any kind of intervention, we need a really good outcome measure to capture potential changes. Another reason I'm motivated to continue to work on the TTS, if people with aphasia are going to benefit from a treatment, we need rigorous tools to capture that change and document that potential change. 38:50 Ellen Bernstein-Ellis Absolutely. Absolutely. Jaime Lee  38:53 At the same time, I'd say the TTS isn't the only method we are focused on, we're really interested in understanding what unfolds during texting interactions. What's happening in these interactions. So, most recently, I've been working with my amazing collaborator, Jamie Azios, who is an expert in Conversation Analysis. I've been working with Jamie to say, “Hey, what's happening here? Can we use CA to explore what's going on?”  Ellen Bernstein-Ellis  39:25 Well, Jamie, you probably heard this before, but Conversation Analysis can sometimes feel daunting for clinicians to use within their daily treatment settings. In fact, we've had several podcasts that have addressed this and have asked this question. What are you finding? Jaime Lee  39:40 I can definitely relate because I am still very new to CA and learning all the terminology. But Jamie and Laura and I are actually working on paper right now, a CAC special issue, because we presented some data at the Clinical Aphasiology Conference and then will have this paper. We'll be submitting to a JSHL on how we're applying CA to texting interactions. That goal is really based around understanding how people with aphasia and their partners are communicating via texting and looking at these naturalistic conversations to see what barriers they're coming across, and what strategies they are using to communicate in this modality. Ellen Bernstein-Ellis  40:27 That makes a lot of sense. And it really circles back again to communication partner training. That does not surprise me. Jaime Lee  40:33 We're seeing some really interesting, creative, and strategic behaviors used both by people with aphasia and their partners. We're seeing people link to a website, or instead of writing out the name of a restaurant, you know, “meet me here” with a link, or using an emoji to help convey their stance when they can't meet up with a friend. They might have more of an agrammatic production. But that emoji helps show the emotion and we're seeing a lot of people with more severe aphasia using photographs really strategically. Ellen Bernstein-Ellis  41:09 So those are the strategies are helping and I'm sure that CA also looks at some of the barriers or breakdowns, right?  Jaime Lee  41:15 Yes, we're seeing some breakdowns, trouble sources in the CA lingo. In some instances, we see the partner clarify, send a question mark, like, “I don't know what you're saying”. And that allows the person with aphasia, a chance to self-repair, like, “Oops, here, this is what I meant.” And that's really useful. We also have seen some examples of breakdowns that may not get repaired. And we don't know exactly what was happening. In those instances, I suspect there were some cases where maybe the partner picked up the phone and called the person with aphasia, or they had a conversation to work out the breakdown. But we really don't know because we're using these data that were previously collected. So a lot of this does seem to be pointing towards training the partners to provide supports, and also helping people with aphasia be more aware of some of the nonlinguistic tools, and some of the shortcuts that are available, but there's still a lot to learn. Ellen Bernstein-Ellis  42:22 Well, Jamie, as you continue to explore this work, I know you're involved in a special project that you do with your senior undergrads at your university program at James Madison. Do you want to describe the student text buddy program? It sounds really engaging. Jaime Lee  42:38 Sure. This is a program I started here at JMU. JMU has a really big focus on engaging undergrads and research experiences. And we have students who are always asking for opportunities to engage with people with aphasia. Particularly during COVID, there weren't these opportunities. It just wasn't safe. But I know some of the participants from the T-write study and some people with aphasia in our community here in Harrisonburg, were looking for ways to be involved and continue to maybe practice their texting in a non-threatening situation. So this was a project and I was actually inspired by one of the students in my lab, Lindsay LeTellier. She's getting her master's degree now at the University of New Hampshire. But Lindsay had listened to an interview with one of our participants where she said she wanted a pen pal. And Lindsay said, “Oh, this participant says she wants a pen pal, I'd love to volunteer, I'll be her pen pal.” And I said, “Lindsay, that's great. I love the idea of a pen, pal. But if we're going to do it, let's make it a research project. And let's open it up and go bigger with this.” So Lindsey helped spearhead this program where we paired students with people with aphasia to have a texting pen pal relationship for four weeks. And in order to be able to kind of watch their texts unfold, we gave them a Google Voice number, so that we can watch the texts.  We've really seen some really interesting things. We've only run about 10 pairs, but all of the feedback has been really positive from the people with aphasia, they felt like it was a good experience. And the students said it was a tremendous learning experience.  We're seeing some interesting things. Using CA, Jamie and I presented this at IARC, sharing what the students/person with aphasia pairs are doing that's resulting in some really natural topic developments and really natural relationship development. Ellen Bernstein-Ellis  44:39 Nice! What a great experience, and we'll look forward to hearing more about that. Jamie, I can't believe how this episode has flown by. But I'm going to ask you a last question. What are you excited about in terms of your next steps for studying texting? Jaime Lee  44:57 I think we definitely want to continue the Text Buddy project because it's such a great learning experience for students, so we'll be continuing to do that. Jamie and I have applied for funding to continue to study texting interactions and use mixed methods, which is a pairing of both of our areas of expertise. I think there's just more to learn, and we're excited to eventually be able to identify some texting supports to help people with aphasia use texting to connect and be more effective in their communication.   Ellen Bernstein-Ellis  45:35 Well, Jamie, this work is going to be really impactful on the daily lives and the daily ability for people with aphasia to have another mode of support for communicating. So thank you for this exciting work. And congratulations again on your Tavistock award, and I just am grateful that you are our guest for this podcast today. Thank you. Jaime Lee  45:58 Thank you so much, Ellen. This has been great, thanks. Ellen Bernstein-Ellis  46:01 It's been it's been a pleasure and an honor.  So for our listeners, for more information on Aphasia Access and to access our growing body of materials, go to www.aphasiaaccess.org. And if you have an idea for a future podcast series topic, just email us at info@aphasia access.org. And thanks again for your ongoing support of aphasia access. References and Resources  Babbitt, E. M., Heinemann, A. W., Semik, P., & Cherney, L. R. (2011). Psychometric properties of the communication confidence rating scale for aphasia (CCRSA): Phase 2. Aphasiology, 25(6-7), 727-735. Babbitt, E. M., & Cherney, L. R. (2010). Communication confidence in persons with aphasia. Topics in Stroke Rehabilitation, 17(3), 214-223. Bernstein-Ellis, E. (Host). (2021, July 29). Promoting Conversation and Positive Communication Culture: In conversation with Marion Leaman (No. 73) [Audio podcast episode] In Aphasia Access Aphasia Conversations. Resonate. https://aphasiaaccess.libsyn.com/episode-73-conversation-and-promoting-positive-communication-culture-in-conversation-with-marion-leaman Brown, G., & Yule, G. (1983). Discourse analysis. Cambridge. University Press. https://doi.org/10.1017/CBO9780511805226 Fein, M., Bayley, C., Rising, K., & Beeson, P. M. (2020). A structured approach to train text messaging in an individual with aphasia. Aphasiology, 34(1), 102-118. Kagan, A., Simmons‐Mackie, N., Rowland, A., Huijbregts, M., Shumway, E., McEwen, S., ... & Sharp, S. (2008). Counting what counts: A framework for capturing real‐life outcomes of aphasia intervention. Aphasiology, 22(3), 258-280. Kagan, A., Winckel, J., Black, S., Felson Duchan, J., Simmons-Mackie, N., & Square, P. (2004). A set of observational measures for rating support and participation in conversation between adults with aphasia and their conversation partners. Topics in Stroke Rehabilitation, 11(1), 67-83. Kinsey, L. E., Lee, J. B., Larkin, E. M., & Cherney, L. R. (2022). Texting behaviors of individuals with chronic aphasia: A descriptive study. American Journal of Speech-Language Pathology, 31(1), 99-112. Leaman, M. C., & Edmonds, L. A. (2021). Assessing language in unstructured conversation in people with aphasia: Methods, psychometric integrity, normative data, and comparison to a structured narrative task. Journal of Speech, Language, and Hearing Research, 64(11), 4344-4365. Lee, J. B., & Cherney, L. R. (2022). Transactional Success in the Texting of Individuals With Aphasia. American Journal of Speech-Language Pathology, 1-18. Meredith, J. (2019). Conversation analysis and online interaction. Research on Language and Social Interaction, 52(3), 241-256. Ramsberger, G., & Rende, B. (2002). Measuring transactional success in the conversation of people with aphasia. Aphasiology, 16(3), 337–353. https://doi.org/10.1080/02687040143000636 Todis, B., Sohlberg, M. M., Hood, D., & Fickas, S. (2005). Making electronic mail accessible: Perspectives of people with acquired cognitive impairments, caregivers and professionals. Brain Injury, 19(6), 389-401. Link to Jaime Lee's University Profile: https://csd.jmu.edu/people/lee.html  mu.edu/people/lee.html 

Hello, and welcome to the Women Leaders podcast! I'm Patti Phillips, CEO of Women Leaders in College Sports. Today, I'm joined by Allison Kern, Associate Vice President and Director of Athletics at Cal State East Bay!   Trust. Authenticity. Intentionality. Vision. – Just some of the main topics we break down in this engaging conversation where Allison gives great perspective on how to be a successful leader In college athletics.  A former student-athlete and head women's basketball coach, Allison shares some important thoughts on non-traditional leadership and changes across the college athletics landscape.   Leading through change, disruptions and transitions are a huge part of every leadership journey, and we touch on all of that, including her transition from private institutions to a public one.   And as we continue to celebrate 50 years of Title IX, Allison shares how this milestone has impacted her, and why she is constantly grateful for the opportunities Title IX afforded her in life.   There are so many great insights throughout this conversation!...Don't miss a minute of it, and remember, we are Women Leaders!  --------------- The Women Leaders in College Sports National Convention is BACK. And In-Person!     Join us in Kansas City October 9th through 11th for three power-packed days of inspiration, connection, and growth!     In the 50th Anniversary year of Ti tle 9, Women Leaders is embracing transformation and... Rising Bolder, Rising Higher, Rising together!    Register now! and learn more online at WomenLeadersInCollegeSports.org/Convention/   We are PhoenIX Rising! 

For today's episode, Ellen Bernstein-Ellis, Program Specialist and Past Director for the Aphasia Treatment Program in the Department of Speech, Language and Hearing Sciences at Cal State East Bay, speaks with Melissa Richmond and members of the Slow Road To Better (SRTB) podcast group from the Stroke Comeback Center (SCC). This show celebrates Aphasia Awareness Month and is honored to feature 5 individuals with aphasia who are consumer advocates through their work on the Slow Road to Better podcast. Guests: Melissa Sigwart Richman, MS, CCC-SLP is a speech-language pathologist with 30 years of experience working in rehabilitation with stroke and brain trauma survivors.  She holds degrees from James Madison University and the University of Maryland, College Park.  Her career has included inpatient and outpatient rehabilitation, long-term care, home care, community-based and virtual settings.  Melissa served as a Senior SLP on the inpatient Stroke Recovery Team for Medstar National Rehabilitation Hospital for over ten years and in 2006 became the Program Director for the Stroke Comeback Center in Vienna, Virginia.  During her tenure, the organization grew to three locations starting with a handful of groups to well over 50 classes per week utilizing a life participation approach. In 2019, Melissa moved to the Outer Banks of North Carolina and started the Virtual Stroke Comeback Center which has continued to grow and thrive.  She continues to focus her energy on improving the lives of survivors and families living with aphasia, with the primary focus of helping them get back to the business of living.   Slow Road to Better Podcast Team Members:  Kitti Tong: At the age of 27, Kitti Tong earned the CEO's Exceptional Performance Award at Choice Hotels – the highest recognition in the company. A data analyst, growth strategist, and event facilitator, she founded a Toastmasters Chapter in Maryland and co-chaired several committees for women's leadership and human rights. Kitti's life was changed forever when she was struck by a car walking home from work, sustaining a severe traumatic brain injury. With determination and grit, she relearned to walk, talk and participate in life. She has founded S.A.Y. Younger Aphasia on YouTube to help create awareness of this isolating condition. Kitti's YouTube channel is: S.A.Y -- Younger Aphasia Group - YouTube Pat Horan: My name is Pat Horan, I was a Captain in the Army. In 2007 I was wounded in combat serving in Iraq. After my injury I couldn't talk, read or write. Over the past 10 years the Stroke Comeback Center has helped me improve my writing, reading and speech more than I could have ever thought possible. Today I am a proud father of a new son and an adopted nephew. My continued recovery will help me be a better father and husband.  Erin Adelekum: Erin's Instagram is: stroke.mama Chris Vincent Dante Thomas Listener Take-aways In today's episode you will: Learn how interprofessional education with physical therapists led to the launch of this member-focused aphasia podcast. Find out how the members prepare for the podcast by embracing spontaneous conversation Listen to members share insights on the benefits of being part of the SRTB podcast Hear the podcast team share the insight that even though aphasia is not “leaving it, but we'd like to crush it a little bit.” Crush it, they do!       Edited show notes Ellen Bernstein-Ellis  00:54 Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Ellen Bernstein Ellis, Program Specialist with the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences and a member of the Aphasia access podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.  In recognition of June being Aphasia Awareness Month, I'm excited and honored to be today's host for an episode that features the five members of the podcast team from the Stroke Comeback Center located in Vienna, Virginia. They are joining me today along with Melissa Richmond, the speech pathologist who produces the show. The Slow Road to Better has launched over 100 episodes that offer authentic and engaging discussions about how to adapt and live well following brain injury or stroke. They share what keeps them all on the “slow road to better”.  Welcome everybody! And I'm going to start with Melissa's introduction. And then I'll ask the podcast members to introduce themselves.  Ellen Bernstein-Ellis  03:21 Melissa, thanks for joining us today. And now I want to get the rest of this show on the road. But in this case, it's actually The Slow Road to Better. I want to have the team introduce themselves. I'm excited to have the podcast team here today. I was wondering who wants to jump in first with the introduction? Because we got five of you. Any volunteers? So Chris, let's start with you. And could you share with our listeners, what was the cause of your aphasia? Chris  03:48 So I was on the motorcycle on the way to a fire meeting. And some guy didn't see me and ran into me. Ellen Bernstein-Ellis  03:58 So traumatic brain injury.  Chris  04:01 Yeah, absolutely. So 10 years, and I only said, “yes”, “no” and four or five curse words, which is important for firefighter, and military and everything. And then obviously I am talking, walking everything.  Ellen Bernstein-Ellis  04:19 Thank you, Chris. And how old were you when you had this brain injury?  Chris Twenty seven  Ellen Bernstein-Ellis   And how long have you been living with aphasia? How long ago was that?  Chris 10 years. Ellen Bernstein-Ellis  04:31 10 years? Okay, and Chris, one more question. How long have you been a podcast team member? Chris  04:36 Since the beginning? So six, seven years? Ellen Bernstein-Ellis  04:40 Six or seven years? I saw Melissa holding up six too, so 6-7 years. All right. So you're an original team member? Chris  04:47 That's correct. Ellen Bernstein-Ellis  04:48 That is fantastic. Okay, and who goes next? Kitti, are you calling out somebody? Oh, Kitti is volunteering. Kitti  04:56 Kitti, I'm Kitti and three years ago I was hit by the car. But Chris and I, and I was 27. Yeah. And Ellen Bernstein-Ellis  05:10 That was three years ago. And how long have you been the podcast team member, Kitti? Kitti  05:15 Two years, two years and now. Ellen Bernstein-Ellis  05:18 Okay. All right. Well, thank you for starting off. And do you want to call somebody next for me?  Kitti  05:27 Oh, wait, wait, wait.  Ellen Bernstein-Ellis What else? Kitti Yeah. I was silent. But now I'm better. Okay. Let's call Pat. Ellen Bernstein-Ellis  05:32 Thank you, Kitti, Pat, what was the cause of your brain injury? You've shared that with us that you're a veteran. Pat  05:42 Yep. I'm Pat Horan. I got hurt when I was in Iraq. I had been there for a year and for no good reason, I got a shot in the head. And that was 15 years ago. Ellen Bernstein-Ellis  05:56 And how long have you been a podcast member? Pat  05:58 I think I've been doing it the whole time also. Ellen Bernstein-Ellis  06:00 So two original members, right? Kitti is a new kid on the block, I guess for podcasting. Okay, Pat, thank you so much. And I see Erin waving her hand. So you are next. Erin. Welcome. And what's the cause of your aphasia? How did that happen? Erin  06:19 So, I'm Erin. And IG (Instagram) knows me as strokemama.mama. I was 39 When I gave birth to my daughter. And nine days later, I had a stroke.  Ellen Bernstein-Ellis  06:37 How long ago was that again?  Erin   Ellen Bernstein-Ellis Okay, so you have a two year old. Erin  06:42 One and a half. She turns two in July. Ellen Bernstein-Ellis  06:46 Beautiful. Okay. And Erin, how long have you been part of the podcast team? Erin  06:50 I'm going to come on my year in, maybe, October or August? Or September? Ellen Bernstein-Ellis  07:01 All right, close enough. Close enough. So you're kind of new like Kitti. Okay, thank you so much. Thank you, Erin. And last, but certainly not least, is Dante then. So Dante? What was the cause of your aphasia? Can you share that with our listeners? Dante  07:17 It's a long time, but I got my pills and stroke. And about five years and I'm improving and words and is really good. So yeah.  Ellen Bernstein-Ellis  07:33 Thank you for sharing that. And how long have you been a member of this podcast team? Oh, one Dante  07:40 Oh, one year. Ellen Bernstein-Ellis  07:41 About one year? Okay.  Well, I want to thank all of you. I am honored to be here. I am a huge fan. I have been listening to your episodes. And I am just so impressed. I'm just so impressed with what you've accomplished. And we want to talk about that today. Before we jump into your experience, I'm going to circle back to Melissa, just for a minute. And Melissa would you share with our listeners? What inspired you to do this? How did this happen? Melissa  08:09 We were actually inspired by a physical therapy student. I was asked to give a lecture at Marymount University to help the physical therapy students understand what speech pathology was and what their role is, as part of a rehab team. And I brought some members from the Stroke Comeback Center with me to tell their story about living with aphasia. The person, his name was Jimmy McVeigh, said I think you all should do a podcast. And he had podcasting and radio in his background. And he said, I will help you, which he did for a few months. And we first had our podcast out on his feed, which was called the PT podcast. Then, you know what happens with students. They graduate and get jobs and real lives. So he didn't really have the ability to help us anymore. And so the members really enjoyed the podcast and wanted to keep it going. So we just picked up where we were, and use what we had, and started our own feed with the help of some friends. And so in 2017, I guess we officially kicked off The Slow Road to Better on our own RSS feed. Ellen Bernstein-Ellis  09:39 Wow, you kind of just rolled up your sleeves and did it, I think. Melissa  09:43 We did. I always tell people, like file it under things they did not teach me in grad school. Okay, Ellen Bernstein-Ellis  09:50 Okay, share with our listeners who might be thinking “maybe we can do this too” what do you do to set up an episode? Melissa  09:58 Really, what I do is support a conversation among members of The Stroke Comeback Center. The way that I see it, my job is to manage the logistics.  We record on Zoom. I get us all together. And most of our conversations are really just authentic conversations-- things that come up with the members who are really doing their best to live well with aphasia. Ellen Bernstein-Ellis  10:30 I was just going to ask what really makes a good show topic. I think that's what you're kind of referring to here. Melissa  10:36 Yeah, authentic conversations feel like stuff. And some of it is serious. Some of it is people dealing with loss of independence, or they feel like their relationships are different, power is different, financial issues. And sometimes it's, I really want to wear my cute shoes and I have this stupid brace. Or, oh my gosh, I'm trying to wear my contacts and I have to put them in with my weak hand. We had a long conversation about how do I shave my armpit on my weak side? You know, so? Ellen Bernstein-Ellis  11:12 Wow, the real stuff or Yeah, stuff. Melissa  11:14 The stuff that friends talk about when they get together? Those make the best conversations. We don't plan. We don't fret. I don't give out the questions. I pretty much turn it over to the members, and they take control. Ellen Bernstein-Ellis  11:29 Sometimes you have guests and the podcast team asks questions. I listened to the episode this week with a physical therapist, and that was fabulous. Hearing people share their questions about their experiences and, and really very empowering. I mean, just being in charge of your own life and your own rehab. That's, that was my takeaway.  Can I ask who is a good candidate to be a podcast team member? What are your thoughts about that? Melissa  11:56 From my perspective, any survivor with aphasia, who is willing to put out their honest, authentic self---the good, the bad, and the ugly, I don't think it's fair for podcasters to come out and say all the good stuff like I'm doing so great. Even though I had a stroke, life is great. It's not. There are a lot of days that really suck. And there are a lot of days where we shed some tears during this podcast, and we've had a lot of failure. I think it takes a lot of courage and a lot of grit to be willing to come on to this podcast and put your true self out there that I really wanted this, but it was a fail. Ellen Bernstein-Ellis  12:45 I'm just gonna say that that honesty, that grit, that resilience has shined through every episode I've listened to so far. That's why I become such a big fan.  And one more question, Melissa, then let's open it up to the whole team. And that is, what benefits have you seen for the members from being part of this podcast? What are the benefits of this podcast? I'm going to be asking the members that in a moment. Melissa  13:11 I think some of the best outcomes have been the survivors being able to share their story with other survivors. Being able to give back to a community. Being willing to put themselves out there and say, “If I can do it, you can do it.” Building a bridge of hope. Which is what we say in our intro, and that's really what our members want. I think they understand that not everybody has a Stroke Comeback Center. And I think they understand what this center and the impact of having friends with aphasia has done for them. And they want to do that for someone else. So I think that's probably the biggest outcome.  And really, it's a great way for the members to track their communication progress. And I say it all the time. Go back to when you started listening, and listen to your communication. And then listen now. Because when I edit, which is really what I would say is my most significant role is, I am the editor and the uploader of all podcasts, is that it's a record of their progress. And it's amazing. It's really a way for our listeners to go “Well they sound great now, you know, they clearly didn't have that much aphasia.” Go back and listen six years ago and see what it sounds like, because I don't try to make people sound like they don't have aphasia. What would be the point of that? Ellen Bernstein-Ellis  14:54 You just mentioned your opener, and the first time I heard the show, I was completely reeled in by that opener. It just hooked me because, first of all, it starts with someone saying, “Come in, come on in, come on in.” And that's exactly right. You are welcoming people into your lives with aphasia, and you're saying, “I'm here. And I'm going to share.” I mean, that was just so empowering. I'm going to play that clip. It's engaging. It's collaborative. Right away that that opening captures everything. So let me play it for the listeners. And then we'll come back again. OPENING ROLL OF SLTB PODCAST PLAYS Ellen Bernstein-Ellis  16:40 I hope the listeners enjoyed that clip as much as I have. I just want to say it's fabulous, every part, every line, but maybe I have a favorite piece. And that's when Pat* says something like, you know, aphasia isn't going to go away. But we want to crush it. And I think that's what happens with every episode, that determination, just to crush it.  (Note: original recording says “Chris” instead of “Pat”, but the correction is noted later in the recording.) So with that, let me throw out a question to this fabulous team. And that is what do you all think is one public benefit? What do you think listeners can take away from this? And what's a personal benefit of the show? So if you could just to speak to either a public benefit or a personal benefit that you you have experienced? Do I have a volunteer? Is Kitti going to call on somebody for us?  Erin  17:37 It's Erin. I think the public benefit is seeing how funny, or sarcastic, or you know, kind, or the troubles that aphasia survivors go through and realizing that they are just as funny, or even more funny, than when they didn't have aphasia. And then I think the personal benefit is having a group that I think, the personal benefit for me is having a group of aphasia people to talk with. And I know that I am so much better, you know, the aphasia is so much better than when I first started the podcast. Ellen Bernstein-Ellis  18:43 That's beautiful. So it's really the sense of camaraderie. And it's also the sense of sharing with others. You're not alone, just normalizing this whole thing. Erin, thank you, and who else wants to share any response to this first question? I see Kitti raising your hand. Kitti  19:03 Hi, I'm Kitti.  In my podcast, I'm full funny, half philosophy, I'm half joking, I'm half serious.  And now, before I was still me, and now I'm still me. Just mindset you know, just mindset. Ellen Bernstein-Ellis  19:24 So being yourself is part of the maybe public benefit because you can let people see who you are. You're a person you're still you. What's been a personal benefit for you Kitti? Kitti  19:35 I'm still me like before and after I'm still me, you know what? Change, I have aphasia but I am still me. Before I was speaking convention. Now, I am still convention. You know? Pat  19:51 I think it's really, like Ellen Bernstein-Ellis   Is this Pat? Pat Oh, sorry, I am Pat. Yeah. I was also Pat, the one that said--I'm sorry, I'm thinking right now, I shouldn't think—It wasn't Chris that said it. I said I was the one who said, “I'm the one, I would crush.”  Ellen Bernstein-Ellis  20:09 Oh, I got that wrong.  Pat  20:11 Yeah, even you it happens to you. Ellen Bernstein-Ellis  20:14 Absolutely, oh heaven's, yes.  So Pat, thank you for that. So we'll put the tribute where tribute's due. Sorry, Chris. I'm gonna toss that one over to Pat. So Pat, what's your, Pat  20:23 I just think it's like, like Kitti was saying, like how she's doing the YouTube and stuff. But like, she went last year--I think, she went down--she went to Vegas to go talk with some other people, you know. And I've been, you know because I got hurt so many years ago, but I've got to go to other colleges around here. I used to have a working dog and I, (unclear) dog, they asked me a couple times to go and we'd go and talk to--I can't remember where we went, somewhere in Maryland. And there was like, over two or three thousand people there that I had to talk with about my dog, Wilson. And it was funny because Wilson was perfect. Like one time, it was really great. We went to, Chris what was that name of that college we went to? Marymount…. Erin  21:22 Chris and you… went to Marymount? Pat  21:24 So we were there, was that for PT maybe? And we did—that, that was, sorry Chris, her name was Kim. And then me. I don't know, there's a bunch of students there. And Melissa was there, but  she told us that we weren't allowed to talk, or she wasn't gonna talk, no matter what.  Ellen Bernstein-Ellis  21:49 Oh, so it was all on you guys. So Pat, are you telling me that part of the benefit from this podcast is that you've really gained kind of the confidence to go out into public and share these messages? Do you think that's been one of the benefits of working on this podcast? Or are you just saying that it's a sense of advocacy that you've really become even a stronger advocate? Pat  22:11 So that's the problem for me is, I don't know big words. Ellen Bernstein-Ellis  22:15 Absolutely. So you stand up for yourself, you're empowered. Pat, I think you're very empowered. Pat  22:21 Or, just like the movie, I'm just “living the dream”, you know. (laughter) I want to go out and have fun. I want to enjoy—I don't want to get into this whole thing with me, but I'm excited that I lived, you know. And so I'm just, like to get out there, you know, when I can talk with people and talk and stuff. And I'm not perfect. I'm not, I'm not the king of the world. I'm not the best, but I just want to help other people. That's what we started years ago. Ellen Bernstein-Ellis  22:47 So that's one of your motivations, then. You're just here to help others too, so a real sense of altruism, and just having that role of a mentor and a helper. That's great. Thank you.  Dante or Chris, do you want to jump in on this question at all? What's the public benefit or a personal benefit of this podcast? Dante  23:09 Dante. The beginning talk, and very little, but then more and more. Sentences and just driving and more and more and more. Like, the mall and talk, and just nothing, and I gain and more and more. So yeah, it's definitely improving. And just more and more and more and group and, and yeah, just flew in and just really talk, and is leaps and bounds and expressing and laughing and….  Ellen Bernstein-Ellis   That's beautiful, Dante. Dante Definitely not sound it out, but just expression and reading and on YouTube. Just more and more and more expressive. Just talk and let me know, and it's definitely getting much better. Ellen Bernstein-Ellis  24:12 And that's an important message for listeners to hear. I think that people continue getting better. There is just a better. I think that's so important. In your last episode, you guys talked about that whole, I call it the “P word”. When people are told there's a plateau, is the “P word”. You know when you. are told that you're gonna get better for six months and stop. And you guys kind of blow that through the roof and say, “No, we keep getting better year after year, because we're working at it.” So, Chris, is there something you want to add to this part of the discussion about a public benefit or a personal benefit of the show? Chris  24:52 Yeah, I mean, so in the world, you have aphasia or TBI. And a lot of people don't have what we have. It kinda--Melissa shows us what the USA and then all over the world. I mean, there's a lot of people that have aphasia or not, and just listening and.. Ellen Bernstein-Ellis  25:28 Right, your show has had over 50,000 downloads. And we know there are over 2 million people with Aphasia just in the US, and that doesn't  even touch the rest of the world. So, Chris, you're saying it gets the message out there. And as Melissa said earlier, there's not --not everybody has access to an aphasia center like you guys all have. Access to your fabulous Stroke Comeback Center. So thank you, Chris, way to kick this off-- your discussion.  And I was wondering if you'd be willing to share any important lessons with the listeners about your podcast experience? You know, what, what type of insights or good lessons or hard lessons have you had with being a podcaster? Your humor is definitely been a good lesson for me, you guys can just let it roll. And that's a part of the magic, I think, is the humor you share with each other. And you call each other out? That's for sure. Chris  26:22 Yeah. laughing And then there's some days that are not happy. It's sad. And it's just… and I think there's laughable moment on each episode. Some are very touchy. But you know, I think that is podcast. And that's what the benefit of listeners. We are not happy all the time. Ellen Bernstein-Ellis  27:03 Yeah, that's very real. And it sounds like this is really storytelling. It's sharing your life. It's the lived experience here. And that's what you're bringing to the listeners. Any other important lessons that you guys can share with us? Kitti? Kitti  27:19 Hi, I'm Kitti. For someone say that I was crying, or I was joking, or I just didn't make sense. And I said, “Do you know what I mean?” And then Melissa said, “I don't (know) what I mean. (Laughter) You know, just okay. One second. Okay. I'm feeling like that we are podcast. Feel like that, what is aphasia? What is different? And what is my benefit? Not me. Not Chris. Not Dante. Not Ellen. Not Pat. But what is most me? Do you know what I mean?  Ellen Bernstein-Ellis   Help me with this. Melissa  28:09 This is where I have to say no, I don't know what you mean. Pat  28:12 I think this is what you might say, Kitti, just let, if I'm totally wrong, you tell me. But like when you go to see any PT, OT, or speech or whatever. And I've had some of these people that are for speech, were like, you know, this and that, you got to do this. And then, just like, but wait, you're doing the same thing with all the, what the people that have a, you know, a stroke or a TBI. And you're like, wait, you can't tell everybody the same? We're all different people, all of us, you know. So? Is that what you're trying to tell Kitti at all? Or am I totally wrong? Kitti Yes. Ellen Bernstein-Ellis  28:54 And nice job, Pat. And Kitti. Are you also saying that sometimes because it's not about any one story or any one person, but it's the bigger piece of everybody helping each other that you… Kitti  29:13 Yeah, like we are human. The normal people is human. We are human. We are both human, not like disability, but different ability, you know?  in-Ellis  29:26 So each of you are telling your story in your own way.  Any other important lessons that you would want the listeners to understand about this podcast experience? And if not, I have other questions, not to worry, I don't run out of questions. Melissa  29:40 I would throws this out there that occasionally, members get a little blowback, primarily from their family. As I said, we do have the ability to edit. We will have conversations that we get to the end of and somebody says, “You know what? You can't put that out there.” And I'm okay with that. And I don't. But sometimes people do share things that they don't think their families or anyone's going to really respond to. But they do. And sometimes, a lot of times, it's just really positive. I think their families hear them have a conversation just amongst friends. And they're like, “Oh, my gosh, I didn't even know it could sound like that.” Sometimes, families get their knickers in a knot a little bit about someone's perception of a situation. And then I get an email that says, “That is not how that happened.” Ellen Bernstein-Ellis  30:42 Okay, so that's an important lesson. That's something that could happen as a podcast team. Okay. All right. Thank you, Melissa. Erin, you look like you want to say something or you. Erin  30:52 So when we have a guest speaker, Melissa tells us, you know, if the guest speaker wants us to ask questions, or the group have questions for them, I will ask. But I think it's just, you know, what did Dante say? “A free for all?” No. Chris  31:21 So honestly, that is 99.9%. (Laughter) Free-for-all. Ellen Bernstein-Ellis  31:28 All right, everybody seems to respond resoundly to free for all. Yes! In the best sense of the word. So it's spontaneous and it's authentic. And it seems to me that you are learning from each other, as well. And that you kind of call each other out to be your best. I mean, that's what I'm seeing. Do you guys agree that you learn from each other in this situation? Chris  31:54 Absolutely. Dante  31:56 No Filter? (Laughter) Ellen Bernstein-Ellis  31:59 What was that? Dante? Dante  32:00 No Filter. No, no plan, nothing. Just, I'm sorry, I'm Dante. Just the plan, the question, just wing it. And expressions, and what did he say? Or just different groups, and just no filter? And you say it, and it gets better, but still more and more and more, just wing it. Chris  32:32 And so the funny thing. I'm sorry, Chris, by the way. So Melissa will tell us, “Hey, this is what we are discussing.” And then 30 minutes later, that is not at all (laughter) what is the topic. Now it is so different from the topic. And then 30 minutes later, you are talking about, “What are you doing for lunch?” Or you know, or the tying the shoes or something like that. But that's one on my part anyway. But it's so random. That, that's what we love, because it is whatever I feel that day. That's it. Erin Yeah! Pat  33:35 I don't think it's 30 minutes. I think it's about two or three minutes. Ellen Bernstein-Ellis  33:39 It goes so fast. It feels like the conversation goes so fast. Erin  33:42 Melissa will get us back on target. Ellen Bernstein-Ellis  33:45 Target. Uh, Melissa, we'll get you back on target sometime.  Group: (Laughter; “eh” verbalization meaning “not so much”.) Ellen Bernstein-Ellis   Okay. We have just a few minutes left, talking about two or three minutes, it feels like it's been two or three minutes. But this is June, which is Aphasia Awareness month. And I was wondering if any of you have any messages you want to put out there as we celebrate June as Aphasia Awareness Month? Any message for the listener about that? Chris  34:13 So, Do More 24…  Dante Slide in...slide in. (Laughter) Ellen Bernstein-Ellis  34:18 Oh my gosh, I think that was quite a transition. Everybody's endorsing that. And that is…? Group (laughter) Chris Oh yeah, Pat It's too late. Melissa  34:24 It's gonna be in May, Chris. It's gonna be too late. But, good try.  Chris Damn it!  (Group laughter and some good natured pandemonium.) Pat Different math. It's different math. Ellen Bernstein-Ellis  34:38 I've never had swearing on the show before, but that's okay. It'll be the first. Pat  34:43 Different math. Ellen Bernstein-Ellis  34:43 Chris, I think you're saying it's never too late to support the Stroke Comeback Center. And that's just a great example of seizing the opportunity for advocacy. And I thank you for that. What else for Aphasia Awareness Month? What other messages can we share? Kitti  35:01 Maybe, if your friend just say, “Hey, do you know what is aphasia mean?” Just teach people, one friend, or five friends… Ellen Bernstein-Ellis  35:17 One person at a time, if that's what it takes.  Kitti Yes. Erin  35:20 And this is Erin, stroke.mama here. M-A-M-A Ellen Bernstein-Ellis Excellent. Kitti  35:27 Is SAYyoungaphasia channel. YouTube. Check it out. Ellen Bernstein-Ellis  35:31 You guys are getting it out there! Erin  35:34 I want to say, if you have a friend with aphasia, and you go to dinner, or a group, you know, party with them, don't let them---include them in the conversation. I take a long time to speak. But I have something to say, you know, and I just want to be included. Well, I don't have a problem, because I will stop the conversation if I'm not included. (Laughter) Ellen Bernstein-Ellis  36:18 I just want to say this is an amazing, amazing team. I am so honored that I got to have conversations with you. And I am so appreciative, as a speech language pathologist, of how you are helping other people with aphasia. Not only people with aphasia, but I think the family, the community, and I hope other speech language pathologists who listen to this and get a sense of how important it is to give voice, to allow people with aphasia to tell their story, and to tell it in a real way. And I want to thank you for that. And I really treasure, you have something special here--your relationship with each other, and your positive belief in yourself and each other. So thank you. Thank you again, thank you for sharing your expertise with Aphasia access, and with all our members.  So on behalf of Aphasia Access, we thank you for listening to this episode of Aphasia Conversations Podcast. I'm going to tell Melissa that if she wants to collect any of these handles that have been shared today, I'll put them in the show notes. For more information on Aphasia Access, and to access our growing library of materials, go to www.aphasiaaccess.org. And if you have an idea for a future podcast series topic, email us at info at aphasiaaccess.org And thanks again for your ongoing support of Aphasia Access. References and Resources  For more info on the Stroke Comeback Center (SCC) use our website: Home - Stroke Comeback Center Follow SCC on FaceBook at: Stroke Comeback Center | Facebook For access to episodes of the SCC podcast, Slow Road to Better: The Slow Road to Better on Apple Podcasts Erin's Instagram: stroke.mama (https://www.instagram.com/stroke.mama)   Kitti's social media handles:   S.A.Y -- Younger Aphasia Group - YouTube   https://www.instagram.com/say.younger.aphasia/ or https://www.facebook.com/groups/say.younger.aphasia    

Roland Williams is an interventionist, author, trainer, counselor and consultant specializing in addiction related issues. He is one of the first Licensed Advanced Addictions Counselors in the state of California. He is a motivational speaker who conducts seminars, workshops, keynote presentations, as well as staff training, skills building and program development worldwide. Roland is the Founder and President of Free Life Enterprises, Counseling and Consulting Services, He is the Coordinator of Chemical Dependency Studies at Cal State East Bay. He is the Director of the United Auburn Indian Community (UAIC), Recovery Program, He was the Chairman of the Clinical Advisory Board for Lionrock Recovery, and innovative Online Intensive Outpatient program. He was the Founder and Director of VIP Recovery Coaching, an International Coaching Company providing Recovery Coaching for high profile clients in their environment. As a Clinical Consultant he helped set up the first abstinence-based addiction treatment center in Amsterdam, Holland, and has worked with addicts and treatment centers, in Japan, Switzerland, Russia, Thailand, Costa Rica, England, Holland, Mexico, France, The Philippines, Dominican Republic, Nepal and Italy. Mr. Williams has three published books; Relapse Prevention Counseling for African Americans, Relapse Warning Signs for African Americans, (both written with Terence T. Gorski) and Relapse Prevention Workbook for African Americans written solely by Mr. Williams. He recently published Recovery is a Verb, a Workbook by Roland Williams.Episode ResourcesCENAPS Training | cenaps.comRoland Williams Consulting | rolandwilliamsconsulting.comRecovery is a Verb Workbook | www.amazon.com/Relapse Prevention for African Americans | www.amazon.comRelapse Prevention Counseling Workbook | www.amazon.comConnect with The Courage to ChangePodcast Website | lionrock.life/couragetochangepodcastPodcast Instagram | @couragetochange_podcastYouTube | The Courage to Change PodcastTikTok | @ashleyloebblassingamePodcast Email | podcast@lionrock.lifePodcast Facebook | @thecouragetochangepodcastLionrock ResourcesLionrock Life Mobile App | lionrock.life/mobile-appSupport Group Meeting Schedule | lionrock.life/meetings

Our next guest is Marc Rappaport. He's had an interesting and varied career in renewable energy and conservation. Over 50 years, he is the inventor of the geothermal solar thermal hybrid system, he has designed solar buildings, built a solar hot water heater from recycled materials, is a pioneer of a wood waste biomass cogeneration power plant in Medford Oregon, has presented at various conferences, as well as being an invited speaker at the Sustainability of the Planet Conference held in Stockholm, Sweden at the Nobel Institute. He has written white papers for the White House, and is author of the book “On the Verge of Tomorrow”. We find out why Marc chose Cal State East Bay for his undergraduate experience, what is biomass power from wood waste, what is geothermal solar thermal hybrid energy system and how can it help us, what alternatives we have when we replace the windows in our homes, what alternatives do we have to stay cool in the summer, whether we can work with the entire local community on community solar solutions, what technologies students can discover in order to ensure the major they choose in college has a bright future, and the best local restaurants in Washington State. Link: https://www.youtube.com/watch?v=Bf-7dPRvFGo https://www.youtube.com/watch?v=Bf-7dPRvFGo

Join Stephanie Luna as she generously shares her journey of transformation through generational trauma to freedom, joy and a life of service.   From Luna's interview: “I am third generation Mexican American. My grandparents are the ones who immigrated to the United States. My parents assimilated to the American culture really fast. They were born and raised in Los Angeles where I also was born and raised. So there was a lot of having to learn the American culture, don't talk Spanish because we would get, or they would get made fun of.”   “My only coping that I felt was necessary was to just get up and leave. So I had the opportunity to go to college—I'm the first one in my family to go to college, which is a huge deal in my family. It's big. It was a lot of... a lot of pressure to myself, but I wasn't really understanding where the pressure was coming from. And I just felt like I had to get away. … I only knew Southern California and I said, I want to go away, but not too far. So that's when I ended up in the Bay Area.”   “There are moments where I sit back and I just think, wow, I did that not only for me, but I did that for my family. There was an ethnic studies class that I took while in college; we talked about generational wealth and generational trauma. And just how in this generational trauma, we're constantly passing on that trauma from person to person, generation to generation. And the same can be said for wealth.”   “We were at our campus ministry center and [the campus minister] noticed that I was trying to pull away. She was asking me what was going on, what was causing me so much turmoil. And so I shared with her …. And her response was you need to tell that to the community. I did not understand that. I was like, what are you talking about? You're crazy. I don't need to share this sadness with anyone. And so she shared with me that if I were to tell the community, it would give them the opportunity to accompany me in my sadness. Now I am a 19-year-old college student, not understanding any of the words that she's saying, but I heard in that moment that I need to share.”   “So I share with them and they welcome me back to the community. Talk about the prodigal son story. I left the community, and I came back and I felt a belonging. I felt wanted, needed. And in that sharing, I didn't know it until years later, but other people started sharing their traumas and their losses. From my vulnerability, I was able to help others see their vulnerability. So there was this mutual sharing of that.”   “I watched the movie Brother Son, Sister Moon about St. Francis of Assisi, in the scene where St. Francis takes his clothes off and he's in the middle of the Piazza. He's telling his father, these are not mine, these are just earthly possessions. It was the moment where he gave up his name. He gave up his father's name and he said, this is not my name. This is not who I am. I am going to go live a life to go in search of who I am. And I just remember sitting back and I'm like crying my eyes out. And I'm just like, okay, God, I hear you. That's when I ended up choosing the Franciscan Community Volunteers, because of that moment of giving yourself, giving of yourself, so that you can reconnect with yourself, with your source, that I felt drawn to. ... Just the irony of giving yourself away to reconnect with yourself, your true self. …. So, I'm trying my best to live my life, to reflect that love that God has for me and for others.”   For a full transcript, please include episode number and email: fslfpodcast@fslf.org.   References: Catholic Club - CSU East Bay Catholic Club: https://allsaintshayward.org/csu-east-bay-catholic-club-campus-ministry is a collaboration of Cal State East Bay with All Saints Catholic Church Campus Ministry in Hayward, CA.   Eunice Park, Campus Minister: see Episode 16 interview entitled “Gratuitous Love: transforming anxiety to freedom”: https://engagingfranciscanwisdom.org/gratuitous-love-transforming-anxiety-to-freedom-episode-16   Prodigal Son story, Luke 15:11-32: https://bible.usccb.org/bible/luke/15 is also known as the Parable of the Lost Son.   Catholic Volunteer Network: a resource for finding short and long-term volunteer opportunities, see https://catholicvolunteernetwork.org/ . Franciscan Community Volunteers, sponsored by the Franciscan Sisters of Little Falls, MN, closed during Covid. Here is a reference: https://www.fslf.org/pages/franciscan-community-volunteers   “Brother Sun, Sister Moon”: 1972 movie directed by Rafael Zeffirelli; for further information, see https://en.wikipedia.org/wiki/Brother_Sun,_Sister_Moon . This movie touches the heart of Francis' journey of conversion, turning to God and to neighbor, over the course of his life, albeit in a somewhat romanticized, not entirely historically accurate way.   Saint Francis renounces his earthly father, name and possessions: see St Bonaventure's Major Legend 2:4 - https://www.franciscantradition.org/francis-of-assisi-early-documents/the-founder/the-legends-and-sermons-about-saint-francis-by-bonaventure-of-bagnoregio/the-major-legend-of-saint-francis/the-life-of-blessed-francis/1627-fa-ed-2-page-538   Maryknoll, a mission movement: https://www.maryknoll.org/ . Luna is part of the Young Adult Empowerment team https://www.maryknoll.us/home/young-adult-empowerment-community/yae-team-biographies   Saint Francis meets the leper: see https://www.franciscanmedia.org/franciscan-spirit-blog/st-francis-meets-the-leper . See also the earliest biography of Saint Francis by Thomas of Celano (1C 17) https://www.franciscantradition.org/francis-of-assisi-early-documents/the-saint/the-life-of-saint-francis-by-thomas-of-celano/636-fa-ed-1-page-195   Haecceitas: a Franciscan term coined by John Duns Scotus re: the unique value, dignity, ‘thisness', of every person and everything; two references: https://cac.org/irreplaceable-thisness-2018-03-18/ , and https://www.ssfamericas.org/post/a-hagiography-of-blessed-john-duns-scotus     Richard Rohr, true and false self: two of many references to this key spiritual concept: https://cac.org/letting-go-of-the-false-self-2022-03-02/ and https://cac.org/trusting-our-essential-self-2022-02-27/

It has been over two years since the start of the pandemic, and we are only just now beginning to see the repercussions. The impact of mental health is often an invisible one, and we may not always see it until later. The pandemic has affected not only the condition of our mental health, but also restricted many of our access to resources that could give us the help we need. This effect is compounded in kids and teenagers, whose access to mental health resources often comes from school, which was shut down for much of the pandemic. When we embrace the notion that all of us have mental health that needs to be taken care of, we can begin to destigmatize reaching out for help for those who need it. Join the engaging and enlightening conversation on our most recent podcast with Liz Llamas and Christina Henderson as we discuss the need to prioritize taking care of our mental health especially as we come out of a world-changing pandemic.Guests:Liz Llamas - Liz Llamas has over 20 years of experience as a marriage and family therapist. She got her BA in General Psychology from San Francisco State University and her Master's in Counseling Psychology from Santa Clara University. She works as a marriage and family therapist supporting youth and young adults with Psychological Services and Personal Counseling at Skyline College. She also spent time as an Adjunct Lecturer at her alma mater, Santa Clara University. She is a co-founder of the nonprofit CASSY (Counseling  and Support Services for Youth) which has established school based mental health programs in 54 elementary and high schools in the San Francisco Bay Area.Cristina Henderson - Cristina Henderson received her Bachelor's in Psychology from Cal State Long Beach. Then she went on to get her Master's with Credentials in School Psychology from Cal State East Bay. She spent a number of years as a school psychologist for the Alum Rock School District in San Jose, California, where she worked with elementary and middle school students. Cristina now works in the full-time ministry along with her husband Ade. She mentors people of all life-stages, from high school to college to young professionals and families.Reference Notes:Mental Health America - 2022 State Of Mental Health In America ReportCalifornia Surgeon General – Adverse Childhood ExperiencesSuicide: The Ripple EffectJ Stephenson quote - "Our emotional, psychological and social wellbeing. Mental health affects how we think, feel and act."The New York Times - As A Crisis Hotline Grows, So Do Fears It Won't Be ReadySherry Turkle - Reclaiming Conversation: The Power of Talk in a Digital AgeBrené Brown - Atlas of the Heart: Mapping Meaningful Connection and the Language of Human ExperienceMental Health–Related Emergency Department Visits Among Children Aged

Sustainability in sport involves three main components or pillars of sustainability. We should think about economic security, social justice and environmental quality. The goal within sustainability is balance, balancing these 3 pillars so as to achieve the most sustainable practices in our current and future sporting world. Sustainability relates to sport by the equipment and facilities used, the means of viewing the event, the resources involved for powering and creating an event at a particular location, and much more. Social justice will be critical to the viability of sports going forward. Climate change has already made profound impacts on both local and global sports, and we should consider innovative ways of tackling this issue. Resources: You can get involved with the organization that backs this podcast, by visiting the Center for Sport and Social Justice's website: https://www.csueastbay.edu/CSSJ A book that expands upon the present issue of poverty in America: $2.00 a Day, written by H. Luke Shaefer and Kathryn J. Edin: http://www.twodollarsaday.com/ A recent working paper that is referenced in the above link ad expands upon American Poverty: https://www.nber.org/papers/w25907 The UN's list of 17 sustainable development goals to achieve by 2030: https://sdgs.un.org/goals A website detailing a Life Cycle Assessment: https://www.sciencedirect.com/topics/earth-and-planetary-sciences/life-cycle-assessment A website detailing a Social Life Cycle Assessment: https://www.lifecycleinitiative.org/starting-life-cycle-thinking/life-cycle-approaches/social-lca/ CA is committed to fight against climate change: https://www.energy.ca.gov/about/campaigns/international-cooperation/climate-change-partnerships Cal State East Bay offers Sustainability Overlays within their curriculum: https://www.csueastbay.edu/sustainability/commitments/sustainability-overlays.html An article Green Washing - Do You Know What You're Buying? By Richard Dahl explains the term greenwashing: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2898878/ Forest Green Rovers - the World's Greenest Football Club: https://www.fgr.co.uk/ Oakland Roots to Become Climate Positive by 2022 in Partnership with East Bay Community Energy: https://cal-cca.org/oakland-roots-to-become-climate-positive-by-2022-in-partnership-with-ebce/#:~:text=Oakland%2C%20CA%20%E2%80%93%20September%2016%2C%202021%20%E2%80%93%20Oakland,carbon%20dioxide%20from%20the%20atmosphere%20than%20they%20emit. MyYute soccer offers free soccer programs to youth: http://myyutesoccer.org/ Manchester United Juan Mata wants everyone within football to donate 1% of their salaries to charity: https://www.manutd.com/en/videos/detail/juan-mata-interview-about-the-common-goal-project Michael Lee's faculty profile at CSUEB: https://www.csueastbay.edu/directory/profiles/ages/leemichael.html

Mascots and symbols have long been used as a source of pride within sports. This can be problematic and stir up issues when a symbol used may be offensive. We have seen this at all levels, from high school and college, all the way to the pros. In relation to Cal State East Bay, the “Pioneer” remains a symbol of the school, yet the visual representation was removed after a recent initiative was put into play. This led to the investigation of the symbol's origins and the conclusion that “Pioneer Pete'' did not promote inclusivity. The “Pioneer”, symbolic of Manifest Destiny, also continues to reinforce native people's displacement and also industrialist/ genocidal impulses. Because sport is powerful in bringing together a community, compassion and understanding alongside the deconstruction of personal beliefs is key to tackling mascot issues. Resources: The Faculty Diversity and Equity Committee discussed East Bay's mascot at & voted to send the attached resolution to the Senate https://www.csueastbay.edu/universitycommunications/files/docs/mascot/faculty-senate-resolution-mascot.pdf On May 10th, 2018, CSU East Bay's Faculty Diversity and Equity Committee (FDEC) passed a resolution to retire the current image of Pioneer Pete. Afterward this resolution headed to CSUEB's Academic Senate and on October 6 the senators voted to remove Pioneer Pete as the mascot: https://www.csueastbay.edu/universitycommunications/mascot/history-of-pioneer-pete.html#:~:text=On%20May%2010th%2C%202018%2C%20CSU,Pioneer%20Pete%20as%20the%20mascot. Research on the history of “Pioneer Pete, Cal State East Bay's retired mascot, was led by Cal State East Bay student Robyn Perry, a history major: https://www.csueastbay.edu/universitycommunications/mascot/history-of-pioneer-pete.html An indigenous leader supports the usage of a controversial mascot: https://www.nytimes.com/2022/01/29/nyregion/native-american-mascot-cambridge.html?searchResultPosition=3 Referencing the Super Bowl of the SF 49ers Vs KC Chiefs as the “Manifest Destiny Bowl”: https://nypost.com/2022/02/13/super-bowl-returns-to-where-it-all-began/ Skate Like a Girl is an organization that reclaimed the reference of performing “like a girl”: https://www.skatelikeagirl.com/about.html You can get involved with the organization that backs this podcast, by visiting the Center for Sport and Social Justice's website: https://www.csueastbay.edu/cssj/ Student organizations/ student led groups are mentioned as ways for students to be involved in the grassroots movement: http://csusqe.org/chapters/ and https://www.csueastbay.edu/asi/ The book There There by Tommy Orange: https://www.goodreads.com/book/show/36692478-there-there The 2005 NCAA ruling to ban hostile and abusive mascots can be found here: http://fs.ncaa.org/Docs/PressArchive/2005/Announcements/NCAA%2BExecutive%2BCommittee%2BIssues%2BGuidelines%2Bfor%2BUse%2Bof%2BNative%2BAmerican%2BMascots%2Bat%2BChampionship%2BEvents.html Links on the “Manifest Destiny Bowl”: https://healingmnstories.wordpress.com/2020/01/24/whats-behind-the-mascot-next-up-san-francisco-49ers-and-the-genocide-of-indigenous-peoples/ and https://uproxx.com/culture/super-bowl-liv-cheif-49ers-native-american/ The study referenced by Jeff regarding pushback to name changes: Davis-Delano, Laurel R., and Todd Crosset. 2008. "Using Social Movement Theory To Study Outcomes in Sport-Related Social Movements." International Review for the Sociology of Sport 43 (2):115-134. doi: 10.1177/1012690208095375. The 1991 movie City Slickers, directed by Ron Underwood is referenced with Billy Crystal's nostalgia recalling his best day ever at a New York Yankees game Info on Laurel Davis Delano: https://springfield.edu/directory/laurel-davis-delano

Welcome to part 2 of my interview with Matthew Morris and Gertrude Elendu! This episode we will focus on Matthew's journey. Matthew is currently a student at Cal State East Bay and is such an incredible person. Matthew was first a student athlete but an injury changed his path. He tells us about his experience healing from that moment, being homeless while in school, and his journey transferring to CSUEB. We also learn about how Matthew and Gertrude met! Tune in to learn about Matthew and Gertrude's story! Music by Timmoor from Pixabay

Welcome to part 1 of my interview with Gertrude Elendu and Matthew Morris! These next two episodes will feature their college experiences, first focusing on Gertrude's story! Gertrude has recently graduated from Cal State East Bay with a major in political science. She is an international student from Nigeria who faced many challenges the US government and the college system creates for international students. Despite of the hardships she persevered and is on to pursue bigger and greater things. Tune in to learn about Gertrude and Matthew's story! Music by Timmoor from Pixabay

Gisel Juarez has recently graduated from Cal State East Bay with a major in health science. Originally a nursing major, Gisel has always had a goal of ensuring that her community is strong and healthy. Thanks to the support of programs offered by her school and by her community, alongside her strong character and perseverance, she was able to get into and succeed through college. She became a star athlete on the track and field team and maintained good grades, all while commuting to and from school. Tune in to learn more about Gisel's journey to a college diploma! Music by Timmoor from Pixabay

The Center for Sport and Social Justice at Cal State East Bay and Skate Like a Girl have teamed up to create a new podcast! Our intention is to provide an accessible resource that increases awareness in our communities regarding the following topics: the future of social justice and sport, mental health, gender equity. We are thrilled to present to you Making Moves. Available now on Spotify, Apple Podcasts and Soundcloud. #SkateLikeAGirl #CenterforSportandSocialJustice #MakingMovesPodcast

Brandy Anderson has just finished her final semester at Cal State East Bay where she majored in human development with a minor in early childhood development. Tune in to learn about Brandy's experience at Chabot College and CSUEB where she managed school, counseling, financial aid, and much more, while simultaneously excelling as a working parent. Music by Timmoor from Pixabay

Michelle Alvarez has recently graduated from Cal State East Bay and is on her way to becoming a teacher. As a first-gen college student, Michelle has discovered the importance of peer support and communication in order to navigate college. She has been able to advocate for herself and persevere, regardless of the financial, geographic, or housing-related challenges that were thrown her way. Tune in to learn about Michelle's journey towards her Bachelor's degree! Music by Timmoor from Pixabay

Suzan Belfield is a non-traditional student at Cal State East Bay majoring ion Sociology. With over 40 years of experience working towards her Bachelor's Degree, Suzan definitely brings a new and valuable perspective to the classroom and to the podcast! Tune in to learn about her experiences taking classes during a pandemic, confronting ageism in institutions, and creating community with classmates and professors. Music by Timmoor from Pixabay

Stephanie Bravo is finishing up her second year at Cal State East Bay where she is planning on majoring in Business Administration. Throughout her time in college, Stephanie has been equipping herself with many support systems that can support her navigating a brand new space. In this episode we discuss her experience being a Latina in business, mental health, financial aid support, and more. Tune in to learn about Stephanie's journey! Music by Timmoor from Pixabay

Danny Contreras and Michael Salinas served a total of 42 years of incarceration. They have transformed their lives and are making a huge difference in their communities. They are serious about using their time, talents, and lives to help others transform and heal. Danny has a Bachelors of Science in Psychology and multiple certifications in drug and alcohol counseling and human services with high honors. He holds a Substance Use Disorder Certified Counselor (SUDCC III), and is a Certified Drug and Alcohol Counselor through California Association of DUI Treatment Programs (CADTP). Danny works for the County of Santa Cruz's Health Services Agency as the Health Services Manager that oversees the Medication Assisted Treatment Program (MAT) for all of the counties clinics. Danny was the recipient of the 2017 County of Santa Cruz Gold award for being the key contributor to the development of protocols, procedures, forms, workflows, and implementing the Medication Assisted Treatment program at all county clinics. Danny teaches at the local police academy to future officers on stigma, drug addiction, stereotypes, and providing trauma informed care. Danny is regularly consulted by agencies, schools, and people in the community on various issues involving at-risk youth, incarceration, reentry, gangs, addiction, implementing MAT, outreach, prevention, intervention, and homelessness. His experience and education have put him in a unique position to help people on their journey of healing. He is an advocate and a voice for those who cannot be heard and lives his life to get them the services they need. He is a recent graduate of Loyola Marymount University School of Law gang expert certification program. Follow his stories @https://www.youtube.com/channel/UCYhZKQ4lgFAqeObrSlH5_fw Michael Salinas was born and raised in Gilroy Ca. At the age of 11 his life took a turn for the worse. He began to hang out with negative associations ultimately leading to a life of substance abuse, gang involvement, and 28 years of incarceration. After being released from prison for what seemed like 100th time. He decided to stick to his reentry plan and stay free. Part of his plan included his education and substance use/mental health treatment. Once he secured these three components of reentry and restoration in his life, he started a whole new chapter of a life in recovery and service to his community. He is a graduate of a chemical dependency certification program from Cal State East Bay and is very close to earning his Bachelor's Degree. He is an Associate Director for a substance use youth outpatient program. His freedom, sanity, and self-worth are all important to his transformed life. He advocates for the perspective that rehabilitation, reform, and transformation are all possible and society would be better if we gave the incarcerated and formerly incarcerated a second chance because his life is an example that anyone can transform. Please subscribe to The Prison Post and you'll receive a weekly notification when a new show is released. #ThePrisonPost #CROPOrganization #WorkingTogethertoRestoreLivesandHealCommunities #ReimaginingReentry #ThePrisonPostPodcast #Keys2Life

This episode features Lilian Mworia. Lilian is a student at Cal State East Bay, where she is majoring in Clinical Psychology. She is an international student from Kenya who has pushed through many challenges that have risen from being in international student, especially during the COVID-19 pandemic. We discuss the importance of housing, cultural competency, and support systems that help students overburdened by the postsecondary system. Music by Timmoor from Pixabay

Interview concludes with Mari Gray, PhD, Assistant Professor of Education Leadership at Cal State East Bay and mother of four sons, shares wisdom on how we as mothers can speak up on behalf of our children's educational needs. Her research on disproportionate discipline in public schools informs her approach on advocating for children of color and other minorities to be treated fairly on school campuses across the nation. Find out what you can do help.www.MomsChangingtheWorld.orgOn Twitter @MomsChangingTheWorldHost: Ekua Walker, NP and CEO - Chief Encouragement OfficerProducer: Koby BlanksonPodcast Art: Esther and Joel Ishler

In this episode, we talk about cultural appropriation, intent vs impact and have a guest joining us, Steven Cleveland, an activist, filmmaker and Professor of Black Studies at Cal State East Bay.Intro music by https://instagram.com/mikedupreemusicSee the full show notes at https://eracedpodcast.com

Interview with Mari Gray, PhD, Professor of Education Leadership at Cal State East Bay and mother of four, shares wisdom to new moms, single moms and moms of black/brown sons on how she talks to them about race and racism. Her research on disproportionate discipline in public schools informs her approach on advocating for children of color and other minorities to be treated fairly on school campuses across the nation.For more information, visitwww.MomsChangingtheWorld.orgHost: Ekua Walker, Child Development NP and Chief Encouragement OfficerProducer: Koby BlanksonPodcast Art: Esther and Joel Ishler

Justin Landry joined Georgia State Men's Basketball as the Basketball Performance Coach in April 2019 after three years at UC Davis. Prior to UC Davis, Justin had stops at Troy University, University of Texas, Tennessee State University, Baylor University, Diablo Valley College and several high school basketball programs. Justin received his bachelor's of science degree from Cal State East Bay in June 2012 before earning a Masters of Education in Sports Science from Tennessee State in 2014. He is NSCA-CSCS certified and has also received certifications in functional movement screen, reflexive performance reset and fascial soft tissue transformation. He is passionate about elevating the games of players by giving them a platform to get stronger, explosive, and move better. Jlandry@gsu.edu Ig: 3dstrong Twitter: coachlandry3