EPISODE 64 [INTRODUCTION] [00:00:05] MBH: Thanks for joining us at Keys for SLPs, opening new doors for speech-language pathologists to better serve clients throughout the lifespan, a weekly audio course and podcast from SpeechTherapyPD.com. I'm your host, Mary Beth Hines, a curious SLP who embraces lifelong learning. Keys for SLPs brings you experts in the field of speech-language pathology as well as collaborative professionals, patients, and caregivers to discuss therapy strategies, research, challenges, triumphs, and career opportunities. Engage with a range of practitioners, from young innovators to pioneers in the field, as we discuss a variety of topics to help the inspired clinician thrive. Each episode of Keys for SLPs has an accompanying audio course on SpeechTherapyPD.com available for .1 ASHA CEUs. We are offering an audio course subscription special coupon code to listeners of this podcast. Type the word KEYS for twenty dollars off. With hundreds of audio courses on demand and new courses released weekly, it's only $59 per year with the code word KEYS. Visit SpeechTherapyPD.com and start earning ASHA CEUs today. [INTERVIEW] [00:01:24] MBH: Welcome to this episode, Keys to Supportive Communication Strategies. I am Mary Beth Hines. Before we get started, we have a few items to mention. We encourage questions from our participants. You can put your questions in the chat box for our guest to answer throughout and at the end of the episode. Here are the financial and non-financial disclosures. I am the host of Keys for SLPs and receive compensation from SpeechTherapyPD.com for hosting this podcast. There are no non-financial disclosures. Hilary Sample receives compensation from SpeechTherapyPD.com for this episode. There are no non-financial disclosures. Our learning objectives today are to describe the psychological impact of communication challenges experienced by people with aphasia, name three ways in which communication partner training can increase the quality of life for people with aphasia, and list five strategies, tools, and resources that can be used to aid successful and meaningful communication for people with aphasia. And now, we welcome our guest today, Hilary Sample, a speech-language pathologist and co-creator of the MedConcerns app by Communication Rescue Services. She also serves as an adjunct instructor at Cleveland State University. Hilary has spent her career working primarily with stroke and brain injury populations in the inpatient rehabilitation hospital setting and recently in acute care. She has a passion for education and patient advocacy, serving as a peer mentor, supervising clinical fellows and students, developing staff competencies and training, guest lecturing, and presenting at state and national conferences. Hilary, we are so happy to have you on Keys for SLPs to talk about supportive communication strategies for people with aphasia and their communication partners. Welcome. [00:03:24] HS: Thank you, Mary Beth. I'm excited to be back. And I'm really grateful for the opportunity to dig a little deeper into these things. [00:03:30] MBH: Well, we had so much fun with you last time. And there was so much more to say. So thank you for coming back. [00:03:36] HS: Thank you. [00:03:37] MBH: And I'm really excited that you're going to talk about one thing. Well, a lot of things. But one thing I would like to ask you about is your experience that led you to the field of speech-language pathology and your experience as an SLP. Because I think there's one little bit that is just so exciting to talk about. And I don't know that we had a lot of time to dig into it last time. So, tell us about your experience. [00:04:02] HS: I promised Mary Beth that I would share about it. I don't know why. I'm closed-lipped about the opera thing. But I am sometimes. But I am an opera singer turned SLP. And there are some of us out there. I completed my undergraduate coursework at Oberlin Conservatory of Music, which brought me over here to Ohio. I came to the field of SLP from that because my training in voice made me very interested in the anatomy and physiology of the vocal mechanism. I am a nerd and I showed up for that role. And the helping profession was so much more consistent with who I am and what I'd like to add to my time here on Earth. And so, it was more important for me to find my place in a helping profession. I dug into speech-language pathology. And when I began my education, I found that it was just perfect for me. The interesting thing is I had this information about the vocal mechanism and things like that. But it was more than just that. It was my personal past. We all have our things that that we've gone through and we've endured and we've persevered through. I have that too. And it felt like I could use some of that to be of service to other people. And then, in addition, my mom actually survived a severe TBI when I was six months old. And I've watched her just grow every single year and become more and more herself. And, I mean, you wouldn't even know that it happened. And so, having those experiences behind me I felt like the combination just enabled me to be ready to be of service and in a way that was a little unique. I always tell my students that you all have something that you've gathered. If you've done lots of different things, you're going to gather all of those bits of life together and it's going to help your patients in some way or another. That's been the case for me. And then, like you said, I started in the inpatient rehabilitation hospital setting and now working in acute care. But I worked with patients or people with aphasia a lot and I found my home working with them. That's the population that I feel like I can Ð that just touched my heart. And so, I not only wanted to improve my own skills, but I saw a need for improved communication with healthcare providers. And so, that took me to the MedConcerns app and working in partnership with Dr. Richmond, which you mentioned before. My life today is seeking to improve the app and the services I provide. And then I get to help future SLPs become aphasia advocates too. [00:06:29] MBH: Well, we are so happy that you found this profession and you have contributed so much already at such a young age. Just to mention the app, because we did have a previous podcast where we talked about the app, but for those who might be listening new tonight and might be confused, could you just tell us what it is? And then we'll move on to our current content. [00:06:48] HS: Absolutely. The MedConcerns app is an aphasia-friendly app that we created to support communication for people with aphasia that are in the hospital setting or anywhere really with any doctors. Because people have difficulty communicating, people with Aphasia, in the healthcare setting. And there needs to be training. And unfortunately, we don't see everyone having it or implementing techniques that work for people with aphasia. We created a medical assessment with embedded supportive conversation techniques so that the work is done for the practitioner and that the person with aphasia still gets what they need. [00:07:23] MBH: Well, thank you so much for that contribution. Okay, let's move on to tonight's topic. And now, most of the people who are listening are speech-language pathologists. But there are some people who might be listening who might be new to understanding aphasia. Can you describe specific communication challenges for people with aphasia? [00:07:44] HS: Yes, absolutely. Aphasia is a loss of language. And more specifically, it's a loss of a degree of language ability. It's not just that it's all gone. But there are varying degrees of loss. But it's not a loss of intellect and cognition remains largely intact. Aphasia, most commonly, occurs post-stroke. But it can also happen with brain injury, and tumors, and infections like meningitis. But the issue that we see a lot with people with aphasia is that a lack of language skills, despite intact ability or intact intelligence otherwise, masks confidence. We judge people's cognition based on their ability to communicate, their intelligence. And so, it's very easy for us to judge someone as not having intact intellect when they can't communicate it. And so, we see it affecting relationships a lot. Really, it's social isolation. If you have Ð communication is everything. It's how we build friendships. It's how we go to work. It's how we do the work we're doing and interact with colleagues. It's how we communicate with people in the street. It's how we order at a restaurant or at a coffee shop. It's how we do everything socially and really engage meaningfully in our society. Once that's just kind of stripped away in a traumatic event, like a stroke, the person is really left isolated. And it can impact their ability to connect with familiar and unfamiliar people because even those people that know them the most don't understand that their intellect is intact. We're all misjudging that. Roles are changed. Activities are changed. And just in general, access to equal rights is something that I've noticed a lot is something that's changed for people with aphasia, and their well-being, and the list goes on and on. But the important thing is that the reason we're here tonight is to talk about that there's hope. People with aphasia can communicate with adequate support. I know we'll go into that later. But we don't have to have it stay just like what I described. [00:09:55] MBH: Aphasia has a significant impact, psychological impact. Let's explore the social-emotional challenges of people with aphasia. [00:10:04] HS: Okay. I want to talk a little bit more about it being an invisible disability. When people see someone with aphasia, they might not have a physical demonstration of having aphasia. Aphasia is not something that shows on the body necessarily. It's something that people don't necessarily have awareness of, they weren't educated on. Like I said before, there are a lot of assumptions being made. And what that looks like is people with aphasia are routinely confronted by impatient listeners, confused looks, communication breakdowns. They have difficulty communicating in the day-to-day interactions that we have. Just communicating basic needs might be impacted especially early on. But so is accessing the medical system and that includes mental health services. Overall, an accessibility issue exists for people with aphasia. And there are a lot of issues already with mental health with people stigmatizing it. It may be cultural, the cultures people come from, it might not be something that's supported. We're entering into a place where the needs for mental health services are higher, and yet, the ability to get them is far lower. Some other things that beyond what I talked about before that increase the difficulty that people with aphasia have is they're excluded from decision-making. They are excluded from demonstrating their autonomy being treated, like I said before, as if they're intellectually impaired, which leads to a lot of being left out of the conversation. Just imagine how it would feel if you're suddenly in a foreign country and don't speak the language and everybody just assumes you can't do anything because of that. People with aphasia typically feel misunderstood. Because people misunderstand aphasia, they can feel disrespected. There's a lot of that elder speak or baby talk that they might get because people have made assumptions about their intelligence. It's really hard for them to follow conversations because of fast talking if there are a lot of speakers speaking at once. And generally, if the topic isn't well-demonstrated and there's noise or there are other distractions. And then if they are following the conversation, they might not be given ample time or sufficient time to take their time to respond, to formulate questions, to formulate responses because it takes them longer. And overall, I think they feel Ð or a lot of this comes from literature, including Brooke Hallowell's text on acquired neurogenic communication disorders is phenomenal, her 2023 textbook. And she describes a lot of these things. But in general, the ability to contribute meaningfully is significantly reduced. Communication is the successful sending and receiving of messages between two or more people. What I've seen, what I've perceived in my career, is that when somebody can't communicate, they're waiting to get Ð like healthcare providers or family, we're waiting to get something from the person with aphasia, waiting for them to be able to say what it is they're trying to say, but communication is successfully sending and receiving. It really takes two to tango. And the increased isolation happens not as a result of the person with aphasia having a communication disability, but because we have not modified the environment to allow them to experience success. We don't convey the information in a way that's more easily understood. Like all the things that I talked about before, the fast rate and all of those things, which I know I'm currently doing. But also, because we don't present a vocabulary or present opportunities where the person with aphasia can point or can use alternative methods to communicate with us to keep that exchange going. It reminds me a lot of Maslow's hierarchy of needs, and that the traumatic single event of having a stroke is then you might have lost the ability to use your right side. Generally, people post-stroke, it's a sudden traumatic event where they've lost independence and countless things, countless ways that their life has been impacted. Then, you put on a loss of language on top of that. Now you can't communicate what you're actually experiencing. But where before, you might have been able to get angry, and yell and tell somebody Ð vent. Get it out. Now you don't have that and you have the trauma. It's really a double trauma. And Maslow's hierarchy, the bottom is the physiological, and then safety, love, belonging, esteem, and self-actualization. You need to have the base needs met first in order to then get the others. That's the idea. But when I think about Maslow's hierarchy with regard to people with aphasia, I think it's all stripped away. Really, you can meet those basic needs. But if you don't meet the other ones, they all work together to create a situation where the person enjoys their life, where the person feels motivated to continue making progress, and feels like there's some light at the end of the tunnel. I think from the get-go, talking about the social and emotional aspects of aphasia, we need to think about not only just meeting those basic needs, but that feeling like I have purpose and feeling like I have worth. All of those things matter as well. And then, definitely, the safety thing is something that is just a problem. Because of difficulty communicating with people with aphasia, because maybe we're not trained or we don't feel comfortable using it or we think there's no time to use the techniques, I've heard a lot of that, we leave the people with aphasia at a three times higher risk of preventable adverse medical events. We leave them with increased isolation and the things that I've already mentioned. [00:16:13] MBH: Back to the three times higher risk of an adverse medical event, is that post-stroke? Anytime post-stroke? Or during the rehabilitation process? [00:16:21] HS: Yeah, thank you for asking. Because that, I need to be more clear. That study is by Bartlett et al in 2008. I believe I need to double-check myself. But he's referencing a study that happened in Quebec. And it wasn't just with people with aphasia, but any communication barrier, including just not speaking the language. Not having your first language be the language of the healthcare provider. People that didn't speak French as their first language. Maybe they spoke some rusty French. They were also at a three times higher risk of preventable adverse medical events. And for people that don't know what that means, these are injuries, possibly death, and medical errors that are not because of the disease process itself but just due to poor clinical management. We didn't give treatment or we gave inappropriate treatment. The list goes on. But if you think about it, you need to be able to communicate what's wrong. And if communication is stripped away and you're not given alternative means to communicate, how do you tell somebody when something devastating is happening to you? How do you tell somebody when those first signs of something coming are happening? For me, I'm the noisy person at the doctor's office saying like, "Yeah, it kind of feels weird here. And my arm is a little funny and like I feel like it's going to Ð" and then they're looking at it immediately and they can tell me you know, "Hilary, you're thinking too much about what bothers you." Or it can be a real thing that they follow and they are notified early on so they could maybe get ahead of something that's really going to have a significant impact on me. I'm watching a family member of my mind and go through some physical health things. And it's brilliant when communication is strong with her mother, and her and the healthcare provider, that there are all these specialists involved. She's going through a terrible experience and she's getting the care she needs. I think about people post-stroke. When they have aphasia and they're limited in their ability to advocate for themselves and their caregiver might be there and might notice something's wrong but might not be trained either. Might not know how to communicate with them and the information just isn't shared. We've looked into that a lot, and that's one of the reasons for the app that I talked about before. But the other side of it is that psychological impact. Statistics really vary with regard to rates for depression in people with aphasia. The most frequent number I have seen is two-thirds of people with aphasia have a major depressive disorder. I'm going to butcher the name Crusade et al 2010. And then, in prevalence, has been shown to increase during the 12-month period following stroke. So all of that, that's very significant. Two-thirds is a huge number. And in Brooke Hallowell's text that I referenced earlier, which, again, I highly recommend, she says that these statistics have serious limitations including not really accounting for the language challenges of the people being assessed. How accurate is it? And her quote was, "Those of us with decades of experience working with this broad population will attest that the condition is severely underreported and the rate is close to 100%." And that's just Ð that makes my heart hurt. Then, to contrast that, the rate is closer to 100%, fewer than 1% receive direct treatment for psychological distress. And that's Townsend et al 2010. People with aphasia are one of the most underserved populations in mental health counseling and psychotherapy. And that's on Blaise Morrison's presentation at the Aphasia Advocacy Conference or the Aphasia Advocacy Summit just this year. But it's huge. And we can't even know just how vast it really is because there's the communication barrier and our literature just hasn't really accounted for the needs of people with aphasia when we really totally assess. There're neurobiological changes that impact mood. It's the brain itself that's impacted because of the stroke. And then you have the life circumstances and the adjustment to this life-changing disability that suddenly occurred. People have described it as "I died that day. Because I'm different today." And I've heard that more than once. While there's something beneficial to going that route, ÒIÕm a new person.Ó It's helpful to start seeing yourself as the new you that is not bad but is a different version of yourself that we are working to adjust to this new you. These new circumstances so you can enjoy your quality of life. But also, they have experienced the death of themselves is what they're communicating. But regardless of the diagnosis of depression, most experience anxiety, stress, and worry. They often feel inadequate, and then just the fear of communicative failure is huge. And if you work with people with aphasia, we've all seen the frustration that occurs when someone is Ð it's like your body just will not do what Ð you have the concept in your mind but you just can't get the word to just communicate what you really need to communicate. And that might be, "I need to go to the bathroom." Or that might be, "I experienced something really terrible that I need to tell you about." But either way, nothing. That frustration is just huge. There's post-stroke depression, anxiety, and PTSD. And I want to say that I know I've said trauma multiple times. And I'd like to scream it from the rooftops. Because this is trauma. People do experience PTSD. And I saw Ð there was an ASHA presentation this year about trauma-informed care for people with aphasia. And it's just something like that I think all of us who are working with people with aphasia need to be aware of. We are frequently Ð we're the people that speak aphasia. If you're trained in those techniques and if you've gone to the little extra distance to be prepared for that. If we're not providing the counseling, like I said before, 1% are getting those services. And it's limited otherwise. Because who's trained to speak aphasia? We are. There are a few counselors and psychologists and they are out there. Blaise Morrison, the person, Dr. Blaise Morrison that I mentioned earlier, he is one of the greats in the field that's really pushing for more access to mental health services for people with aphasia. But it's a huge gap. I thought that the healthcare disparity for people with aphasia is a huge gap. Well, the mental health side of it is maybe even bigger. I don't know that you could even compare the two. They're both too big. But there's stress and fear. And there are all the new limitations in function that they have to get around. But there's that isolation and reduction in social activities. You might be limited because people no longer ask you to come. You might be limited because your caregiver or spouse feels scared for you to have to deal with a social interaction. You might be limited in the social interaction because there's too much noise. There're too many conversations. Those kinds of things. Or maybe you just don't go because you don't think it's going to go well and you don't want to embarrass yourself. There're so many ways that people with aphasia are isolated. And then beyond that, we have the emotional dysregulation that is part of adjustment but also part of the neurobiological changes. Difficulty returning to work for obvious reasons. And then the financial difficulties that come from that. When we think about access to mental health services, well, they're frequently not covered. And if you're having financial difficulties as a direct result of aphasia, how are you going to pay for services? There's often limited support. I strongly recommend Ð and I was at that wonderful Aphasia Access Conference, where there were so many aphasia advocates talking about how we can support people with aphasia. And training Ð and I know we're going to get into this. But training friends. Training family. But training beyond that. Don't limit the person with aphasia. You might be the only one providing communication partner training. Bring them all in there. Give them support. Help them have some tethers out there in their social world. And that way, they can experience some of that emotional support that they were getting from friends. I mean, who talks to one person only? I have a million wonderful people like that in my kind of support network. If I could only talk to one person and I was just barred from anyone else, that would be incredibly lonely. Then the family adjustments. Changes in roles and then changes in intimacy have a large impact on psychological well-being. The National Aphasia Association had a great blog post entitled ÔEmpathy, Sympathy, and AphasiaÕ and it was one of my favorite things to read. It talks about the range from pity to compassion. From acknowledging that someone has a problem to actually helping someone with that problem. And this is kind of where I'm thinking, like Ð SLPs, pay attention because this is where we really come in. [00:25:39] MBH: Exactly. [00:25:41] HS: And so, we can help the families and friends and healthcare providers to go from pity to compassion. Before I felt comfortable, there was a time where I just Ð there was a friend of mine who was diagnosed with stage four cancer. I was really young and didn't really understand. I didn't know how to talk to that person. I remember I was scared by it and I had pity. But I didn't know how to go from that in order to have a conversation and let them feel all the fragmented and painful feelings that they're feeling and not have to fix it and just let them talk. And so, now, as part of what I'm doing in my role and the work that I'm doing in my businesses when we get to empathy, we can actually be useful. What it talks about here is the pity is, "Oh, no. Aphasia sounds awful. You poor thing." Sympathy is, "I'm so sad that you're experiencing aphasia." And that's nice. That matters. And then empathy is, "I understand that aphasia is frustrating, especially not being able to communicate." And then compassion is, "I want to help you navigate aphasia." We don't do much with pity and sympathy. People with aphasia or any disability don't really like to be pitied. It is harmful. It can make them feel hopeless. But if you let them know, "I cannot understand completely what you're going through, but I'm going to try to put myself in your shoes. I want to be able to help you." That's empowering that somebody sees you. And like any of us that go and get therapy for anything that we're dealing with, it doesn't matter that the person says the right thing except for that you feel seen and heard. Really, that's my experience anyway. Just feel seen and heard. Silence can go a long way. But if you're listening intentionally and not just out of pity or that kind of thing just because you feel bad, but you're listening to support. Empathy being the ability to understand and share the feelings of another. Put yourself in the other person's shoes. And then when you imagine how they feel, you treat them with the golden rule. Treat them how you want to be treated. And this is the gap that I see. This is the huge step that we need to take from treating aphasia as a diagnosis, being very impairment-based, and working with a human being that has aphasia, but as a human being that needs a lot more than to work on their letters. There's been a huge step toward increasing the consistency of counseling Ð or there needs to be a huge step. We can make a huge step toward increasing the consistency of counseling and life coaching integration into our services. This really couples a lot with supportive communication. Because if I don't have those techniques, and if I'm not employing them all the time and implementing them all the time and if I'm not coming from that desire to help this person participate in their life, then I'm probably not going to be very successful with counseling and life coaching because I'm not speaking the same language as the person with aphasia. If you feel like you might not have the tools yet to provide that counseling, you are within a large group of people. According to Sekhon et al, in 2015, '19 and '21, 60% to 70% percent of SLPs surveyed reported a lack of confidence, knowledge, and satisfaction while assessing and managing well-being. More than 70% reported no additional training and counseling beyond what they learned in grad school, which we know is probably not a ton. And then 85% report that addressing psychological well-being was important for all phases of recovery. Most people weren't trained. Most people did not feel up to it. But 85% report that it's necessary. And that's Ð you know, when we looked into the literature about the healthcare disparity, that's the thing too. People know it's necessary. They just don't know how. So no judgment. No anything like that. We don't know what we don't know. But once we know better, we do better. We know that there's a gap here. We know it's really the SLP's role to provide this vital service. And it really is vital. And so, let's find out what we need to do. And a lot of that comes from kind of looking within and seeing what your personal barriers are. I talked about my own personal barriers that I had to move through. Being able to shut up and listen is a huge thing. We're fixers. We want to work it out. But being able to just acknowledge that what they're going through is valid and stop and listen is just huge. Sekhon has a counseling training model. And I'll share the link for it after the podcast. But it's 10 hours of self-paced study with three-hour hands-on workshop on Zoom. And it's just for counseling training. After that research, they also created a protocol that's effective. [00:30:35] MBH: So counseling training specifically for people with aphasia? [00:30:39] HS: And communication disorders Ð communication disorders as well. But when I was learning about it Ð we were talking about aphasia. So I'm going to have to look and just double down on that. Double-check on that. But it is for counseling training in general with communication disorders. But I believe it's with aphasia specifically. [00:31:00] MBH: Yeah, that's a great resource. Can you say the name of it again? [00:31:04] HS: It's S-E-K-H-O-N. That's the last name. And it's a counseling training module. It's just Sekhon's model for counseling training. And there's a link that I will end up sharing with you. [00:31:17] MBH: Okay. Thank you. Thank you very much. [00:31:18] HS: Yeah. Because we might have a semester or something where we actually learn about these things. And that doesn't go too far so. [00:31:26] MBH: Right. In your experience, in your area where you live, in the Cleveland area, do you know of any therapists? Not speech-language pathologists, but therapists, counselors, and psychologists who specialize in aphasia? [00:31:40] HS: I don't. [00:31:41] MBH: Yeah, I've never heard of anyone around here. Okay. Well, let's dive in. Now that we have established that there's certainly a need for supportive communication strategies, let's dive into those strategies. Can you describe supportive communication training for people with aphasia and their communication partners? [00:31:59] HS: Absolutely. And first, I believe that our role as clinicians is more than simply assessing and treating, but addressing all aspects of communication. I'm sure I made that very clear. But if you really look into anything written by an aphasiologist, they're going to point you to Life Participation Approach to Aphasia and use of supportive conversation approach and techniques. There's a variety of strategies. Because it's essential. I'll start off by saying Ð and Morris in 2022, Megan Morris, has this fantastic article that's all about the healthcare disparity. But she talks about the social model disability. That states that disability is the result of environmental and societal limitations, restrictions, biases, and assumptions. Disability is the result of limitations in the environment. The social model moves disability from existing within the individual as someone who needs to be fixed to the society and environment. And that's the part that needs to be fixed. The classic example is a person who uses a wheelchair is not disabled until they reach a building with no ramps or elevators. If it's fully accessible, then the person with the wheelchair would not experience the disability. They would have equal access. And so, therefore the environment, in this case, the building, would need to be fixed rather than the individual. And so, the same thing is true. We can fix the communication environment and that's by using tools ourselves. But also, by helping other people to use tools. There's communication partner training and train the trainer at Aphasia Institute. And I'm going to forget the name of the other one but I'll provide that for you after as well. But it needs to start with us because we are the discipline that knows, that we're trained in aphasia. And this is our area. But it needs to go further than that as well. Recently, I hear a lot of Ð and I actually heard at the conference too recently that acute care, there's no time for strategies. And we might have heard that elsewhere too. And my experience with using supportive conversation techniques is that it's more efficient. Once I know how to do it, I am so much faster and I know what's going on. Like we're actually communicating. Whereas if I bring nothing with me, I learned nothing, I've left the person frustrated and I'm frustrated. And sure, it took less time potentially because I just left without anything. But usually, it takes far more time to muddle through and then still be frustrated. I would love to encourage people to think about Ð there is no off-limits. If you would use an interpreter for a person that speaks a different language, then you have to be using supportive communication techniques with a person with aphasia. There is no difference because they're both intellectually there and ready to communicate on complex topics with you often and language is the barrier. I know I went on a little tangent there. But I think Ð [00:34:57] MBH: That's okay. We like tangents. [00:34:59] HS: No more artificial barriers is what I'm hoping for. We bridge the gap. And first, it's by building rapport. Letting the person know that you know that they're competent. If you don't know that they're competent and you're second guessing that and you're still dealing with some preconceived notions, well, try to leave them at the door and see them. See their strengths first. Don't go in with an impairment-based assessment. That's the first thing that your Ð first interaction you're going to have. But see how they engage with you. See if they smile when you walk in the door. See if they point to the bathroom or they point to their body indicating, this is the crap that I'm dealing with now. If they're using facial expressions, those things are strength. Like, notice them. Document them. And that will tell me far more about this person than all the nitty-gritty of the impairments. Because this tells me what I can use to then help them to engage and to communicate effectively. We want to let them know why they're having difficulty communicating. We want them to be aware that we see them as the competent individual that they are and let them know why we're using supportive techniques. And then we can use them. But I'm using them as I'm giving this education. But that rapport and that trust building is huge because when you're left on this island and isolated and nobody is really trying to talk to you in the way that you can understand, trust is frequently lost pretty quickly. The first thing Ð when you have something happen to you and you're in the hospital, the first thing you want to do is hear from the doctor, "What happened?" But what if you never hear that? We're often the first people that can describe the stuff in the detail and in the manner that is actually received where communication occurs. Sending and receiving the message. Supportive communication is anything, anything that improves access to or participation in communication. Activities, engagement. And this can include strategies, materials, resources, supportive attitudes, and any modification to the environment or to the activity itself. Supportive communication is a huge umbrella term, really. It's just: bring with you the attitude and the tools necessary to help this individual right in front of you. Because there's no one else like this person to help this person in front of you to communicate effectively and have a little bit easier time. Wo we want to ensure the best exchange of information possible. So we give cueing. We request clarification. It's really important to know how frustrating it is for people when we pretend we understand when we don't. They know you didn't get it. They know that you're like, "Aha. Yeah." And moving on because you gave up. If you didn't understand, they know that they're having difficulty communicating. So do you. And it can be out there in the open, "I didn't understand that. I'm going to Ð let's see what else we can do to figure that out. Or did you want to move on? You kind of look like you wanted to move on." Be honest. You're human and it counts that you're trying. You don't have to also pretend that the problem doesn't exist. We request clarification if we didn't understand. And we verify them. Make sure that they understood. We paraphrase in general using aphasia-friendly communication, which I'll dig into in just a second. Again, supportive communication can involve any modality. And when I walk into a patient's room, I always have blank paper and a marker, like a dry-erase marker. And I'll talk more about that when I talk about aphasia-friendly communication. But I always have that with me. And then I have Ð probably what you've noticed is I'm using my arms and my face has a lot of expression and I'm pointing. I'm a lot of times miming things with people that do communicate that they're communicatively intact because I'm in such a habit of doing it. And why the heck not? Because a lot of people have hearing issues anyway. So why don't we just help everybody? This can be gesture. If you are using gesture, don't do it like I might have been doing it throughout this because this means nothing. But talk about this one thing about my Ð when I was looking at that whole big group Ð we're using Ð I know this is going to be recorded later. But I'm pointing, I'm gesturing in a way that is trying to mime or demonstrate what I'm actually trying to say. Be specific. And you might not do that all the time. And that's okay too.You're human too. Drawing. You don't need to be an artist and neither do they. I kind of consider drawing to be an extension of gesture. A lot of times, when I'm talking to them about the bumpy road ahead, but that we're leading somewhere good, somewhere better. Like better is better and that there are going to be errors along the way. There's going to be difficulty. I draw it. I could also do that with my hand. But I'll draw it too. It gives me something to add onto. It gives them something to point to. Drawing, it gives more access to words. And you're kind of training them to be able to use that same technique with total communication. Writing. Writing is so important. So that paper and the marker. I'm writing keywords. I'm establishing the topic. Imagine that you barely speak the language and you've got this huge vocabulary that could be Ð it could be being talked about. But if someone just said we're talking about speaking. We're talking about restaurants. And if they just put that at the top and underlined it, you would be able to kind of gather the words that would organize you to be able to have an easier time following the conversation. I write like Ð I establish the topic. I grab keywords that will help them be able to follow. If I am asking them Ð yes no questions are good in a large way. But they're also incredibly limiting if the person can do more. I provide a field of four, field of five, field of six. What can the person do? define the choices. And then I always add the question mark at the bottom. So that if I haven't Ð by some miracle, if I haven't guessed everything they might be thinking, they can point to it's not on here. It's something else. And that's what the question mark represents. If I want to ask them something to drink, drink is at the top of the paper underlined. And then I have juice, soda, coffee, tea, water, and something else. Probably they want some whiskey. Sorry. I'm making little jokes here. [00:41:23] MBH: I thought it was funny. [00:41:25] HS: Oh, thank you. What I do is I'll point to it. Kind of underline it as I'm saying it, juice, soda, coffee, tea, water, and then something else or something else, you know? And I'm pointing to the question mark. It might not be on here. If they point to juice, then I'm branching off and I'm saying, "Okay. Orange? Cranberry? Grape?" And then they can point a question mark. Might be some other wonderful juice like grapefruit. They're pointing to the one that they intend. And I can go from there. They're actually making choices that are personal to them. It always Ð you can see the empowerment that happens when you just give them the most basic access to a vocabulary. And that's what you're doing. They don't have a vocabulary at their disposal with any ease. I'm lending them a vocabulary so they can actually get something that they want. But then, also, I write keywords to make sure that I'm understanding their communication too. If they're telling me about an experience that they had in therapy, I'm writing down what I'm understanding in keywords to verify my understanding. And so, that they can kind of point to it too when they're referring back or anything like that. But also, there's no reason that we're not both speaking the same language. If I want to speak aphasia, I need to be using that to both understand and to communicate so that they can communicate back. And then speaking, we do speak. Verbal expression isn't the easiest for a lot of people with aphasia. But we use short sentences with simplified syntax. There are a couple of things that are harder. Passive is easier than like reversal. And I could dig into that a little bit more. But short sentences. Let them be simple. It doesn't have to be simple content. I have talked with people about very complex information. ItÕs very complex but it's simple, easy-to-understand words so that it's accessible. And then ask one question at a time. Do ask yes-no questions to verify. Just don't stay with just that. Like I said before, emphasize keywords like with writing. But you can also do that with your speech. Some people think that it's not good to emphasize keywords. But if I'm talking blah-blah-blah and then I say tools, you're going to be Ð your brain is going to attend to that a lot more. This is not the same as elder speak or baby talk. This is an exaggerated intonation pattern so that their brain goes, "Hey, this is something important to listen to." And then we slow down the rate because the processing of that information is harder. And so, we give them time to be able to have it soak in. If you've walked into a patient's room and the only thing you're doing is speaking, then you're not speaking aphasia. Then you're not providing access to communication. I just want that to kind of stick with everybody. It doesn't mean you're a bad therapist by any stretch. But add something to it so that it's easier to take in. When we were working on the app, there are pictures, and there are spoken words, and there's written. And maybe not everybody needs that. But layering language, layering these different modalities could help to clarify the concept that you're trying to communicate. Yeah, exaggerated speech, facial expressions. Again, just be intentional and specific. Body language, intentional and specific. It's adding context. Whatever you can do to add context. And then some that take a little bit more. Pictures. You can use apps. You can use their iPhone or tablet. You can Google. ParticiPics are really great. And then there's also specific AAC devices and other forms of technology. But you don't necessarily always need to have those. What I see a lot is I'll see a communication board presented in front of somebody. People don't know if they can see the whole board, one. Maybe they have a neglect. If it's maybe too many icons, do they understand what the icon actually means? And just looking at something. Like we know that there's a lot to language processing including the visual component. We need to make sure that we take that in and we don't just hand something and expect somebody to just go for it. If you didn't see somebody use it, it probably means that they couldn't or that they were frustrated by it. But instead, when I have a communication board, I'm using all these other techniques to make that communication board come to life for the person with aphasia especially if it's more than like four pictures. What is aphasia-friendly communication? It's really incorporating all these things. But it comes down to the short and simple spoken or written structures, clear photos, clear pictographs. We're eliminating that irrelevant content. When I was coming up with those icons with Dr. Richmond, it was like we needed it to be just hone in on the thing. Because all that extraneous information is distracting and we know that it's very hard to filter out. And then content, generally for people with aphasia, should Ð when it's like on something like a communication board or an app or something like that, we try to have it be relevant for moderate to severe comprehension deficits to increase accessibility on a wider range. It needs a lot of white space. It needs emphasis on keywords by underlining, capitalizing, bolding. There's a lot to say about fonts. Easy to read fonts. Talk about Sans Serif. I don't know how to actually pronounce that and the way it's supposed to be said. But larger fonts. None of this tiny stuff. But Simmons-Mackie in 2013 advocated for no smaller than 20 points. The reason I bring in that dry-erase marker is because it's bold. It's easily Ð the contrast is big from that white space. And it's going to help me make larger letters right off the beep. It's just more accessible information when I write it with a dry-erase marker. And yes, I do ruin a lot of dry-erase markers. The last thing I'll say is that supportive communication also involves internal properties, and that means respect for inherent competence. If you didn't come in with it, then the support of communication just can't be there in the same way. They need to know that you see them and you need to see them. Knowledge about the communication disorder. Why do we have such a lacking of supportive communication being used? It's because there's a very limited group of people who understand what aphasia is. And so, if you don't know what the communication disorder is, then how are you going to then respect the confidence? And how are you going to know that they can do better if only they have the tools? It includes methods like providing the skills, the opportunities, the resources, and the assistance needed to participate. Making topics relevant. Going back to their life situations that really matter. And it requires not only the understanding of the impairment but also the consequences and some insight into what that person in front of you, that single person requires to live successfully despite their language impairments. And that's from Simmons-Mackie in 2013. And when I was first learning how to do supportive conversation and I felt really kind of nervous. I felt I don't know what the heck I'm doing. Okay. I'm going to Ð and then, over time, those things that she mentioned there in that little segment, those things carried me. Because I do understand that you're there, and I do have an understanding of aphasia. If I can just keep trying, that's what matters to the person with aphasia. And I'll figure it out. I'll get better over time. And I did. I always just kind of ask myself, "Was the exchange successful? And how did I know that? Did I verify anything? Did I do the things I need to do?" But at the end of the day, if I exchanged information, if both parties don't feel too frustrated, then we probably did a good job. And then always know that sometimes you can't figure it out. Sometimes it's hard. And you couldn't come up with the questions or the Ð and that's okay. I've definitely had a lot of those experiences. And I just want to be perfect, you know? I just want to be able to do it right every time because I just hate leaving someone with something they wanted to say but they couldn't communicate. But a lot of times, if I take a second to think about it and, at the end of my day, I'll stop by again and something might have come to me. Or they had something else happen throughout the day where they could point to something. And we can revisit those things. But just we're two humans trying to communicate. And that means that we're both going to be human. And it's not always going to be perfect. But if we lead with that empathy and respect and build that strong rapport, it's going to be fine and they will be so grateful. You will have done counseling just by demonstrating that approach. I know that the people that I work with aphasia feel comfortable when I enter the room, most often, I think, because they know I know that they know. They know that I see that. And that feeling seen is a huge part of what encourages us to keep going. I'll move on to case studies. [00:50:24] MBH: Well, no. That's such a good point. And one thing that you brought up earlier is it's so good to train others to be authentic and not pretend that you know. Because that is such a breakdown to communication and a breakdown of that trust. When they see you, they know that they have an authentic person with a huge smile who's going to keep trying. [00:50:46] HS: Yeah. Yeah. Even reviewing the stuff, I know that there are things I can do better. And so, we're all just trying to do a little bit better, and that's absolutely acceptable. But I always think about, like, if I'm doing something if it would make me feel bad if somebody did it to me, then I'm going to try my best to knock it off. I have wanted to act like I understand because I didn't want the person to feel embarrassed. That really basic thing that we do. It's awkward. Well, it feels much worse to have someone lie to you and kind of like just move on and pretend. It feels worse. When in doubt, I just try to think about: how would it feel if it were me? [00:51:28] MBH: And another thing that you mentioned early on is not being able to vent. So often, when something happens, little or big, just being able to vent helps us move on. And when someone doesn't have that ability, it's so important to be truthful with them. Because that might really upset them that you pretended that you understood but they knew that you didn't. Then they don't have anyone to vent to about it. And it might be just a little thing. And especially not just you, but what you, trading family and communication partners, and friends. Let's jump into some case studies because I think case studies are always my favorite part of the podcast because they really bring to life what we've been talking about. You have two or three to mention, I think? [00:52:17] HS: Yeah. These are kind of general, but I wanted to make sure I touched on the most important thing, which is kind of how it goes. The first person is a person with aphasia and they had two family members and a close friend. Mary Beth and I were talking about before the podcast that it's so important to bring on the troops. Like, bring on the friends to increase the group so that the person actually has access to those friends afterward. That was what this one entailed. This is a person, an elderly gentleman with, I think, moderate aphasia. Non-fluent aphasia. Moderate, moderate, severe. And he was able to communicate a couple of different things with significant effort. It was kind of the BrocaÕs type of aphasia, where it's telegraphic and there's a lot of content words if they do come out. But nothing else really. And then there were a good amount of paraphasia. Generally, we were speaking talking almost entirely through supportive communication. And then we were doing Ð I don't just do supportive communication. It's embedded in everything I do, like having a conversation with someone. And we also do things that are impairment-based. I'm not just doing one or the other. I did like ORLA and response elaboration treatment with them and it worked really well with him. We brought in his two family members and a close friend. It's always interesting to see the dynamics, like who wants to go first? But they knew they were coming in to actually practice. I know, in a lot of family trainings, it's, "Here's blah-blah-blah," all this information. And while we did provide information, they knew they were coming in to actually get hands-on training. And so, from the beginning, we gave education that was aphasia-friendly. I'm demonstrating how it is to communicate in a way that the patient could understand as well. They were invited into the conversation. Making sure that that's there from the beginning. I never turned my back. And then the person with aphasia determined the topics with me ahead of time. And we started out with some things that were like more basic needs and problems that you might have. We just had little cards and he and I would exchange that for the next one that we would do. First, I demonstrated Ð I can't remember what the first one was, but a need to go to the bathroom or something simple like that. And how I would try to figure that out using my paper, and my marker, and my communication board that's there. I'm using supportive communication. And at the end, he's able to tell me what he intended to tell me. And it worked out nicely. I think the next one was that he wanted a specific beverage. Like pretty much like we had talked about earlier. And the person's son's wife helped with that one. And she was nervous but she was like willing to try it out. She just started writing things down, writing keywords. And what I would do Ð what I do during it is like give direct feedback during. I ask if they're okay with feedback on the spot. And if they're okay with it, great. And if they need it to happen later, great. They're people too and I want to accommodate what's most comfortable and what's their best learning style. We do this role-playing pretty much. And the person with aphasia is very comfortable with supportive communication by this point even if it's been just a few days. And so, they're able to help their loved one figure it out with them. I think because they're invited into the training right off the bat, their understanding with aphasia just increased tenfold because they're doing it and they're seeing the benefit of the techniques that are being used. It's almost like you didn't even need to say anything about some of their needs, like about some of what they're capable of because they demonstrated by actually engaging in that back and forth. We also worked on eliminating behaviors that we do out of nervousness, like interrupting, filling in the blank, avoiding or changing the subject, or pretending to understand, those kind of things. And then if we could have gone further Ð so maybe they gave two choices. I might say, "He can actually handle five or six." We'd go ahead, "What other things can you think of?" It's hard for people at first to kind of come up with what to write. But I just start out with kind of broad categories. I talked about the juice and the soda and stuff like that earlier. And then go to subcategories. What underlies that? And then get smaller so that you narrow down the field of what they're trying to communicate. I go over those things as well. If I help the family member to understand that if they do want to fill in the blank, then they have to ask for permission. It's really nice to give people the time. And I saw that a lot at the Aphasia Access Conference that there are a good number of aphasia advocates there that actually have aphasia. And there was no interrupting. You just didn't see it. There was quiet until the person got their thought out. Yeah, I know. I can do a whole lot better. I was seeing just how long they would go. And it was awesome. And it was like, "Okay, I'm learning here." But those are the things that I would also encourage from the family member. We would assess how they felt afterward. Was it successful? Was it not? What could we have done differently? Things like that. I just give feedback. And then I'll let them know. I think, right now, I feel like you're using this pretty well in these areas. I gave you assistance here. Next time, we'll work on this. And then you're really giving therapy, like moderate assistance necessary for supportive communication approach. And then we move on to Ð the other family member tries it out. The friend tried it out. And then we moved on to the family member. Well, there's also the person with aphasia came up with something that they wanted to say. Then it becomes more Ð it becomes loose. There're no constraints. I don't know what they're going to say. So that becomes like, really, let's just dive in. And if you don't get it, that's okay. This is just an exercise. I might not have gotten it either. And then the family comes in and wants to tell them something specific. Maybe the grandkids were at school and they had the school play and yada-yada. And we're not just talking. We're going to use keywords and we're going to make sure that they're following us the whole way. We're talking about the school play. And this is what little Jenny did. And this is Ð and it's like using the same techniques that you're using to take in information from the person with aphasia to help them to follow a lot more easily. And then we did a little wrap-up, like answered any questions. And like I said before, identify areas to improve. It's counseling here too because I don't know that I would ever feel good doing this in front of people for the first time, especially when the stakes are high. It's your family member or friend. You want to do right. Giving a lot of love and kindness and patience for those people and letting them know that we know it's awkward. We know it's hard. We know you're new at it. It's totally okay. Anything matters. Like anything that you're doing matters. And so, just letting them know it'll get easier with time just like it got easier for us. And so, one of the things I like to do is let people know that it was hard for me too. And like let people know how in different situations, people with aphasia, their communication skills might fluctuate throughout the day due to neural fatigue or due to stress or anything. And so, sometimes it'll be easier than others. And this is just Ð the effort goes a long way. That's an example of how I would do communication partner training. And really, we have a list that we go through to make sure that we can do the various things that I talked about. And I always encourage them to start with Ð like if the person has something to say, start with the basic needs first. We're talking about that Maslow's hierarchy again. We're not going to jump necessarily to emotion if the person needs to pee. I'm not going to jump to emotion if the person might be having a medical event. So we want to make sure that we're assessing for the concerns that might be there before we go to something higher. Even though we want to get there, the issue is that they can often look the same. Crying can be for many reasons when you don't have the words to express how you feel. We need to make sure that we meet, first, basic needs and then go up from there so we don't miss something huge. We talk about that as well. And incorporate communication boards. I always encourage the families and staff that I work with to take that free e-learning module on the Aphasia Institute's website. It's an SCA free learning module. It's 40 minutes and it's awesome. And it's amazing that they provided that for us. Yeah, I would look that up, the Aphasia Institute. And these are the creators of the Supportive Communication Approachª and they are the ones that give that e-learning module thatÕs 40 minutes. And it's very comprehensive. It's really helpful. I can talk about training healthcare providers if you want? [01:00:55] MBH: Well, that would be great. We are getting close on time. Yeah, let's go into the healthcare providers. And I think we can go through one healthcare provider scenario. But if we have any other questions from any of our participants, now would be a great time to put them in the chat or the Q&A. All right. Take it away. [01:01:15] HS: Training healthcare providers is a different beast. Although, everybody's human to start off with and they may not understand. Just like the family members, just know that the healthcare providers didn't necessarily know the full situation with aphasia. They might not know that the person actually is competent with support. First is education, just like I did with the family member. But with healthcare providers, I haven't been as successful with pulling the doctors aside and doing one-to-one training. Instead, I do sneaky training. And that is Ð if they're coming into my session with a person with aphasia, I am modeling throughout. I'm writing keywords as they're talking, pointing, giving them options. And more that I have done that, I've noticed some carryover. But it's sometimes slower with the healthcare providers. If I don't have complete buy-in, I try to do a little bit of rescuing. If it's this situation where there's clearly not communication happening between the patient and the physician, then that's my opportunity to show what's possible. I take those opportunities any chance I get. Interrupt our therapy. Please, go for it. Because that's our opportunity to show. It's not just something Ð these things, when we do them, it's hard to start implementing it. And it takes time to learn and things. But they're really quite simple. And so, being able to show it's not something specific to SLPs. We want everybody to be using this. And look how simple it can really be. And then they feel that sense of they got the information that they needed out more quickly. They feel the efficiency of it. That's how I get to my healthcare providers right now. And a lot of times, I'll be doing the keywords and then they wanted to follow up with a question. And so, I'll hand them my paper so they can take over and then they're pointing to it. I had an experience like this. I don't want to be too specific. But there is a provider that I did this with and I just kind of slip it in there. And I'm kind of demonstrating a little bit. And then they take over. And so, it's not like they're getting the same feedback as I would give to another communication partner that was open to the experience and looking for the experience. But I get to support them anyway. And then, again, they're able to see that the person can communicate when there's help. So that's kind of how I've done it. And then I've been able to train staff. And every single time I train staff, from nursing aides to dietitians and anybody that has direct contact with people with aphasia, it starts with encouraging empathy and eliminating preconceived notions. And then we talk about the challenges that they've experienced. Because they will have more buy-in and pay attention and want to learn if you're giving them direct solutions to their problems. And so, I talk about like what's happened for you? What's been a situation that was difficult for you when you were communicating with or trying to communicate with a person with aphasia? Because I know you care and I know it's frustrating. And then we'll start from, okay, how that could have looked using supportive techniques. I don't get as long with staff. I might get like 30 minutes. We do some of this, and then the next time they come, I will provide some more support. But what I like to do is follow up with them outside and give them any kind of support that they need especially if they're working directly with a patient. [01:04:33] MBH: Well, those are great suggestions. I just checked, this is the 64th episode and you're the first SLP to introduce sneaky SLP. Sneaky therapy. [01:04:47] HS: [inaudible 01:04:47]. [01:04:50] MBH: But an excellent suggestion all the same. Thank you for that. That's great advice when you do only have a little bit of time with the staff to go right into the problem solving and dive into the different situations that have been difficult in the past and kind of problem solve together. Excellent suggestions. Thank you. [01:05:09] HS: People don't quite listen. And I was listening to this one book recently. But people don't really listen when you make yourself the hero and when you make it about you, this thing you're bringing. They listen when you're helping them solve a problem that they didn't even know they had until you started mentioning it again or they might have known they had. But when you're actually helping them directly. And every single person that I've run into has worked directly with a person with aphasia at the hospital. They all have something. It really does help. And sometimes we'll actually have them role play and feel what it feels like to be asked orientation questions when you only can nod yes or no and then somebody tells you you're not oriented. That helps too. [01:05:46] MBH: Very true. Well, thank you so much, Hilary. It has been so wonderful to speak with you again. And thank you for all of the suggestions. And you did reference a lot. And we did have a question about getting the references. We can put them as a handout to this course. We just can't do it tonight because the person who does that is flying right now, is up in the sky. But later this week. [01:06:11] HS: I will provide you those two with an updated reference list because I'm always adding. [01:06:16] MBH: Okay. Okay. If you provide that to us, then we will update it later this week. And then when the podcast is actually on podcast platforms, that will be available on SpeechTherapyPD.com. Wonderful. [01:06:29] HS: Great. [01:06:29] MBH: Well, thank you. And we hope to have you back again. I think you've been talking about maybe doing some webinars. Do you have anything planned with SpeechTherapyPD.com? [01:06:39] HS: There's an upcoming webinar in May for Aphasia Advocacy. And that's May 7th, May 7th. Coming up. [01:06:46] MBH: May 7th. Okay. That's coming up. Okay. All right. [01:06:47] HS: [inaudible 01:06:47] and the whole dysphagia thing as well with the webinars too. [01:06:54] MBH: Excellent. Well, we are so happy to have met you at ASHA. And we're happy to have you be a presenter on SpeechTherapyPD.com. and especially at Keys for SLPs. Have a great night. And we'll see you soon. Thanks, everyone. Thanks for hanging with us. I know we went over. [OUTRO] [01:07:13] MBH: Thanks for joining us here at Keys for SLPs, providing keys to open new doors to better serve our clients throughout the lifespan. Remember to go to SpeechTherapyPD.com to learn more about earning ASHA CEUs for this episode and more. Thanks for your positive reviews and support. I would love for you to write a quick review and subscribe. Keep up the good work. [END] KFSP 64 Transcript © 2023 Keys for SLPs 1