Episode #111: Sharing Strategies to Successfully Support Reading for Individuals with Aphasia: A Conversation with Kelly Knollman-Porter

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.