EPISODE 84 [INTRODUCTION] [00:00:04] 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.Ê Each episode of Keys for SLPs has an accompanying audio course on speechtherapypd.com available for 0.1 ASHA CEUs. We are offering an audio course subscription special coupon code to listeners of this podcast. Type the word KEYS for $20 off. With hundreds of audio courses on demand and new courses released weekly, it's only $59 per year with a code word KEYS. Visit speechtherapypd.com and start earning ASHA CEUs today. [INTERVIEW] [00:01:24] RT: Welcome to this episode of Keys for SLPs: Keys to Improving Life Participation with Aphasia Groups. I am Mary Beth Hines. Before we get started, we have a few items to mention. Here are the financial and non-financial disclosures. I'm the host of Keys for SLPs and receive compensation from speechtherapypd.com.Ê Michelle Armour is a salaried employee of Northwestern Medicine. She is currently the Vice President of Aphasia Access and also served four years as the founding co-chair of the Aphasia & Other Communication Disorders Task Force through the American Congress of Rehabilitation Medicine.Ê And now here are our learning objectives for today. One, describe life participation approach to aphasia. Two, summarize quality measures reported that support evidence-based practice using the LPAA in a group setting. Three, explain how to plan a group program and describe three activities that will work well with a life participation approach to aphasia.Ê And now we welcome our guest today, Michelle Armour MS, CCC-SLP. She is a speech-language pathologist, program lead clinician, and founder of the Northwestern Medicine Aphasia Center at the Marianjoy Rehabilitation Hospital in Wheaton, Illinois. She specializes in stroke rehabilitation with a specific area of interest in neurogenic communication disorders. Michelle has conducted clinical research and had her work published on the topic of supportive communication, quality of life, and acute inpatient rehabilitation for patients with aphasia. In addition to her work at Marianjoy, she has served as an adjunct professor teaching on the subject of aphasia at Midwestern University in Downers Grove, Illinois. Michelle, we are so happy to have you here on Keys for SLPs to talk about keys to improving participation with aphasia groups. [00:03:20] MA: Thank you so much. I'm so happy to be here. Thank you for inviting me.Ê [00:03:23] MBH: Well, it was luck that we met. And it was so exciting to hear the work that you've done. I love groups. I love the group dynamic. I think they are so important to rehabilitation both to make progress with communication. But also, to have the support of other people who have been going through similar things. I'm so happy to see the evidence-based. [00:03:51] MA: Thank you. Yeah. It's all I do, groups. And I just have grown to love them. And I'm so excited to talk about them with you today. [00:03:59] MBH: Wow. I did not realize that you only did groups.Ê [00:04:02] MA: It's a large part of what we do in our aphasia center. We do some individual sessions. But the majority of my day is doing groups. And so, I love it and I'm so excited to share what I've learned over the years with it.Ê [00:04:15] MBH: Well, let us dig in. Tell us about your journey as an SLP. And what led you to have expertise in aphasia and specifically with groups with the life participation approach?Ê [00:04:29] MA: I feel really lucky because I've gained a little bit of experience across pretty much all of the levels of care in my career. It's been unique. And I feel like I've learned a lot about the continuum. And I've been really lucky to do that. I started back when I was in graduate school, I was in an acute care placement. I had a taste of what acute care was like in the ICU, and the emergency room, and some of those acute units.Ê But when I started my career, I was hired on as a CF in outpatient day rehab. And so, at the time, I knew I was very passionate about working with adults. I had only applied out of school for all medical settings. And, obviously, they can be hard to come by, especially for a CF. I was offered a job but it was part-time. I wanted full-time hours but I took it because I just wanted to get my feet in the door and I really wanted to be in a hospital setting. I took that part-time outpatient day rehabs position and I ended up filling in the rest of my work hours doing registry for the same hospital. In my CF year, I was able to have that permanent placement in outpatient. But then I floated to inpatient rehab and skilled nursing facilities. It was a really neat experience because I got a taste of just coming out of acute care in my clinicals and then a taste of the sniff population, and then outpatient, and impatient. And it was such a great learning experience for me. [00:05:58] MBH: Oh, that's great.Ê [00:06:00] MA: Yeah. After doing that for some time, I transitioned permanently to a full-time position on the inpatient stroke unit where I remained for many years. That really became my home. And, obviously, in that setting, I worked with a lot of patients with aphasia.Ê And early in my career on the stroke unit, it became apparent to me that I didn't quite have all the tools in my toolbox that I needed. I knew I could be providing better care than I was capable of at the time. I just became really passionate about spending my personal time. Reading as much literature as I could to really investigate, what can I do different? How can I improve the care that I'm providing? I did a lot of additional just CEU opportunities to learn more. And through all of that investigation is how I came to learn a lot more about patient-centered care and the life participation approach to aphasia. And so, right away, I knew, "Okay. Well, this is it. This is what I've been missing. I haven't been using this to my fullest potential." And I really started to strive to use that with every patient that I saw.Ê And one thing led to another. And I just started seeking out more opportunities to better the care within our hospital in general. I'm doing inservices and such to share what I had learned with some of the other clinicians. But our hospital is really great. They have a whole program that is designed just for professional development. I got involved with this program in addition to my work on the stroke unit. And the program, the professional development program, allows opportunities for clinicians to um identify opportunities in the hospital where we can better patient care. Is it through a research study? Or is it through just a new innovative idea that we're not quite implementing at the moment? And we have to submit a whole application with what our idea is.Ê And after my time on the stroke unit and after so many projects here and there focusing on LPAA and aphasia in more of that inpatient setting I decided to move forward with a bigger project in that professional development program. And that's when I proposed opening an aphasia center, a post-acute aphasia center program at our hospital.Ê And so, they allowed me to move forward with the plan. I worked on it for some time. I had to obtain some funding just to get us up and running and off the ground. I did that by obtaining a grant at the time. And the Aphasia Center opened in 2017. We are very excited. Yeah. And it just continues to grow. [00:08:44] MBH: Wow. Now how big was it when it opened? How many patients did you have capacity for?Ê [00:08:50] MA: Great question. Initially, before I started with the initial plan, I opened a support group. I started small with just like one group a month as a support group after hours in the evening. And I didn't know how much interest I would get. I didn't know if anyone would even show up. And the first meeting ended up having like 35 people. [00:09:12] MBH: Oh, my goodness. Wow. [00:09:13] MA: Yes, I know. I was shocked. I didn't realize how many people in the community were seeking these extra opportunities outside of inpatient, outside of outpatient. Just extra opportunities to practice, to socialize, and to get involved. The support group was so successful that we kind of asked them. We used them as a focus group. I said, "Well, what are you guys looking for? We're doing this once a month. You seem to like it. But what else do you want?" And it was really socialization. They want to meet new people. They want to practice their Communication in a supportive environment. And so, all of their comments really supported the Aphasia Center opening.Ê We opened part-time at first for our first three months where we were is running programming two days a week. But our volumes Ğ I started to get a lot of calls. More and more people wanted to do it. Our volumes quickly grew. And after just the first three months, we opened up full-time. We were running the program full-time hours, 40 hours a week.Ê [00:10:17] MBH: Wow. That's excellent. And so, you are housed within the hospital? [00:10:21] MA: We are. We are housed within the outpatient building at the hospital. Our hospital, it's a freestanding rehab hospital. We have 125 inpatient rehab beds. And then we have a whole comprehensive outpatient program. But what's interesting is we also, beyond that outpatient program, have a group of specialty programs. And so, they consist of driver's rehab, wheelchair, and positioning. We have a full fitness center, an accessible fitness center. And so, the Aphasia Center was kind of under that umbrella where we provide post-acute care that can be accessed on an ongoing continuum. It's not a full episode of care. It's a standard episode of care. It's an addition. And so, people can access these as they feel they need it, which is really consistent with the values of the life participation approach. And so, we are housed within the outpatient building under that specialty program umbrella. [00:11:23] MBH: Okay. Okay. Well, let's talk about for those Ğ I think many people who will be listening to this are familiar with the life participation approach. But there may be many who are not. Let's just define that before we dig into the details. [00:11:39] MA: Absolutely. The life participation approach to aphasia we abbreviated to LPAA. It's really a general philosophy. It's a service delivery model. A way to provide the services and the therapy that you're doing with your patients with aphasia. The primary focus of LPAA focuses on re-engagement in life activities. But most importantly, the life activities of whatever the patient chooses. Not of what the therapist uses. But you interview them. It's collaborative. You talk to the patient. You talk to the family in this LPAA model and you say, "Well, what are your goals for participation?" And so, it's going to be different with every patient that you work with. But it places whatever their life concerns are at the center of the care.Ê Generally, the whole concept of LPAA is a statement of five values, so that when you're providing care with the LPAA approach, you really want to make sure that you are adhering to those five values. The first one is that the primary goal of what you're doing is enhancement of life participation. Okay? The second one though is that all people affected by aphasia are entitled to service. That means that it's not just the patient and the therapists engaging in this therapy. It should be anybody else in the patient's life. Because maybe their life is impacted by their loved one's aphasia. It's really collaborative. You always want to bring in family, friends, whoever the patient identifies as wanting to be a part of the process.Ê But the third value states, the way to measure it is by documented life enhancement changes. It's not by a WAB score. It's by very functional outcomes and maybe using more PROMs, patient-reported outcome measures, to identify if we're helping that patient achieve their participation goals. The fourth value really focuses on the fact that it's not just communication being targeted. We have to think about the patient's personal well-being, their psychosocial well-being. We have to think about the environments that they communicate in. And all of those things have to be factors that are considered in your targets of intervention. They have to be part of the process because they play a big role in the communication.Ê And then, finally, the fact that people have chronic aphasia often. They should have availability of services at all stages of their lives. It's not just in that acute aphasia world, right? It's not just inpatient. It's not just outpatient. They could be 10 years post. But if they identify a need, they are entitled to access services. And so, that's a really key component I think for the life participation approach as well. [00:14:45] MBH: Absolutely. Even the term chronic aphasia is not um always familiar to people. The way that our medical system works in the United States with insurance, and we only have so many visits or reach a plateau. And sometimes therapy ends because coverage ends. But the needs don't end. And as life changes and people with aphasia go through different phases of their life, their needs for communication change.Ê [00:15:20] MA: Absolutely. And as I mentioned, I worked across all these levels of care. And I worked with patients with aphasia at all those levels. Their needs were different depending on what level of care they were at. And then at the support group, meeting them years post and seeing that they're still wanting these services but they don't necessarily have access to them anymore. It was such a frustrating feeling for me when all I wanted to do was help these people achieve these life participation goals. But they didn't have Ğ they didn't feel like they had the resources or the access to do so after that standard episode of care ended.Ê I think, for me, the Aphasia Center concept was really born out of that frustration. Like, "What can we do? What can I do to try to help these people at any point that they want to access the service?" And so, I feel very fortunate that we were able to do that.Ê [00:16:14] MBH: Well, and I know that the people who you helped feel very fortunate that you met that frustration with intensity, and vigor, and creativity and created this center. You've been open since 2017. Do you have any clients who have been with you since the very beginning?Ê [00:16:36] MA: We sure do. Yes. Actually, our most recent project was based on those individuals who've had that access for so long. We had celebrated our five-year anniversary in 2022, which was very exciting for us because we also survived through the pandemic. That meant we were obviously not expecting to have to close our doors.Ê We were very fortunate because we are part of a large healthcare system. And in this hospital environment, we only had to shut down um during COVID for about four months. And so, we were able to reopen in-person very quickly. And during the four months, we were able to move everything virtually. Everyone still had access to LPAA services if they chose to do that.Ê And so, we had people that participated with us virtually during the shutdown and then come back and return right away. It was really consistent participation from what we identified as 10 individuals from the very beginning to our five-year mark. And those 10 are still with us today. We are very excited to have those long-term members of our program as well as all these other people that we've been able to service over the years.Ê [00:17:53] MBH: Do you know off the top of your head how many you have serviced or how many you service a year?Ê [00:17:58] MA: That's a great question. I think, last year, we serviced 89 people. And this is a fiscal year. This past fiscal year has been a lot more than that. We're actually working on that data now. But it's a lot more than what we did. We have really been focusing on growing our programming. Being flexible with our scheduling to accommodate everyone's needs. And we've grown substantially every single year since we've been open. And we are at full capacity right now with our volume. It's very exciting. [00:18:30] MBH: Wonderful. Wheaton, Illinois is a suburb of Chicago. Am I correct? [00:18:37] MA: Correct. We're in the western suburbs of Chicago.Ê [00:18:40] MBH: Do you draw mainly from the western suburbs or from all of Chicago?Ê [00:18:45] MA: P primarily in the Western suburbs. Really, all of the suburbs. Because there's other aphasia programming, but a lot of it is located in the city. And so it can be hard to access for some people who don't want to drive into the Chicago traffic and all of that. Primarily, it's the western suburbs. We get some people from the north. But all of our surrounding areas. [00:19:08] MBH: Wonderful. [00:19:08] MA: We even had a couple people drive all the way from Indiana actually, which was really exciting just to access the services.Ê [00:19:16] MBH: Well, that's wonderful. Yeah, that is exciting. Because part of Indiana is almost a suburb of Chicago.Ê [00:19:23] MA: Exactly. Yeah. [00:19:24] MBH: Being in the Midwest, I find some people don't always know about our geography here. It's good to add that. Okay. All right. Opening 2017. You flourished through the pandemic. You continued to grow. And you're mainly based with groups. Tell us about the group session protocol. [00:19:49] MA: Mm-hmm. Yeah. We do offer individual services. But the bulk of what we do is this group programming. And so, we offer these in-person group options as well as virtual options. But in-person, attendees sign up for an 8-week session and they come and commit to coming once a week for a three-hour period. We have morning sessions or afternoon sessions. They can really pick what day works best for them or what time of day works best for them. But then they would come that same day for those three hours and work with the same people across that 8-week session.Ê And so, across the eight weeks, we do many different kinds of activities on a rotating basis. And so, it's a three-hour day and. And every hour, we switch the activity just to give everyone some variety. Some of them might be really familiar groups. If the listeners are very familiar with aphasia groups, we have an aphasia book club. We have a conversation group. A game group. And then we have others that maybe aren't as common like a technology training group, a music group, a travel group. Math. Not everyone's favorite. But some people love it. And also, a writing group. We just kind of rotate across all of these various activities over the eight-week period.Ê [00:21:13] MBH: Okay. Okay. If someone doesn't love math, they just continue with that during that group. There's not more than one offering at once.Ê [00:21:25] MA: Some of them are. We call it a you-pick-it. We do encourage everyone to do the technology training. Because we do find that that's really valuable. But during those weeks we kind of encourage math, no. It's a you-pick-it. It's kind of this independent hour. Even though we're in this group setting, everyone gets set up with whatever they want to work on at the time. We really cater it to make sure that we're meeting their personal needs. If they don't have goals for math, they don't have to do math. If they want to do more technology, great. We'll do that. It's flexible. But we kind of offer all of these opportunities so that people can consider, "That's tough for me. Maybe I will try that today." And they can kind of direct their own care. [00:22:04] MBH: Okay. Is each hour a you-pick-it?Ê [00:22:07] MA: No. Just kind of independent time, right? We'll kind of Ğ I'll give you an example. We'll walk through the day. We always start with book club. We do that every day for the eight weeks because we have to chip away at a novel together. And so, we always start with an hour of socialization and book club where we do a couple chapters at a time. Then we might switch to technology. Or for the middle part of our weeks, like weeks five through seven, we'll do a you-pick-it, where we're like, "Okay, we could do math. We could do more technology. You could do some writing." They really call the shots. And each individual person picks whatever they want to do.Ê And then in the third hour, we all come back together and we do a game. Or we do a conversation group. Or whatever's on the schedule for that week. It's all kind of predetermined so that everybody knows what to expect. We have a visual schedule that we provide upon registration and we go from there. [00:23:00] MBH: Well, great. And as far as Ğ people register for the group program. But as far as placing them in a group, do you have them leveled off or separated by interest? Or how do you decide who goes in what group?Ê [00:23:15] MA: Yeah. That's really important to me. I get that question a lot. I find it Ğ I've done it in different ways. But I have found the most valuable way to create our groups is to really do a nice thorough interview when I first meet somebody. I do it more so based on are they Ğ would they want to talk outside of here? Do they have things in common? Will they have things that they want to talk about with one another? I don't necessarily care if one person has severe aphasia and one person has a mild.Ê I've tried groups based on severity. But I have found the most effective for me in my experience is to group people based on maybe age, interests, hobbies, backgrounds because that's when the conversation really starts to be elicited. And they really interact and initiate because they have more in common. And they support each other.Ê For those who have greater communication needs, they get supported by individuals who maybe have more milder needs. And the people with more severe needs support the other. It's such a nice collaborative way to make a group. Because I'm not looking at them based on their impairment. I'm looking at them as people that's part of the life participation approach. And so, for me, it's you as a person, what are you interested in? Let me try to introduce you to other people who might have similar interests. And work together from there. [00:24:39] MBH: What do you want to participate in in your life? Yeah. [00:24:42] MA: Exactly. I'm just really passionate about creating groups based on that versus based on the aphasia itself.Ê [00:24:49] MBH: Okay. Okay. And many people in a group in general?Ê [00:24:53] MA: We typically max it at about six people. [00:24:55] MBH: Okay. That's pretty small. Yeah. And with one therapist at a time? Or two? Or how does that work?Ê [00:25:03] MA: One therapist. It's led by a speech therapist. I like six. We've done some slightly larger. We've done some smaller. But I find six to be kind of our preference. It's enough people to really have a great conversation. But not too many people where it's too challenging of a group environment for those who have greater communication needs. I find six to be our lucky number. [00:25:30] MBH: Okay. All right. Good to know. Okay. Tell us a little bit more about your technology training. [00:25:38] MA: Sure. We have designated desktops, laptops, iPads so that we can really kind of interview them in the beginning. What kind of technology are you trying to get back to using? What technology do you have experience in? And we can kind of fit them based on those needs. We also offer Ğ is it their phone? They can bring their phone in and we can help them do more on their phone.Ê But we offer them in the technology unit kind of two options. One, let's do some participation-based type of practice where maybe we can simulate writing an email or searching the internet. Doing some internet navigation. Working on a written expression for a paragraph level for professional writing versus creative writing. We use the opportunity to use technology in that more functional way. Or if that's not important to them, then we offer them access just to different language-based applications that we have, software that we have if they prefer to just really focus on practice of their communication skills. Really, they direct their care in that hour and we kind of show them some options. And they can pick and choose which route they want to take and how they really want to spend that time.Ê [00:26:55] MBH: Wonderful. Now do you have formal goal setting at the beginning of the group? By the end of eight weeks, I want to be able to do X, Y, and Z on my phone. Or is it really just kind of short-term goals at each session?Ê [00:27:12] MA: Well, no goals are physically written because it's not considered an episode of care. It's just something that they can access for themselves. We obviously talk to them about what you want to participate in more. And we kind of direct the activities we try towards their goals, their personal goals. But what we have done in the past is used more PROMs type of evaluation measures, outcome measures. We use the stroke and aphasia quality of life scale just as part of our ongoing quality improvement work. The first year that we were open, we actually used the SAQOL 39 after every round. And back before COVID, we had a little bit longer of rounds. We were at about 11 weeks. And so, after every round, we would readminister the SAQOL 39. And we were just trying to see, since we were a brand new program, are we helping them improve from their perspective? They're ranking it. Are we helping them improve in their overall quality of life?Ê If anyone listening isn't familiar with the SAQOL, it's all based on a five-point Likert scale so that individuals across all severities of aphasia can easily communicate their preferences. If someone doesn't understand because of comprehension impairments, it also has a proxy version, which is really nice. But in the end, after you administer the scale-based outcome measure, it divides it into five different scores. You get an overall mean score. The higher the score, which the highest score is five, would indicate a higher level of quality of life from the patient's perspective.Ê But then it also breaks it into four different domains. There's a physical domain, a communication domain, psychosocial, and energy. And so, we looked at all five of those scores that we obtained from the SAQOL at those intervals within that first year. And we found statistically significant improvements within our first year of opening, which was really exciting.Ê We had also in that first year evaluated caregiver strain. We use the caregiver strain, modified caregiver strain index, and gave that quarterly to our caregivers. And noticed that, by their loved ones participating on this regular basis, they were demonstrating less strain in their lives. Overall, it was wonderful. We actually had that quality work published in 2019. We don't do the SAQOL regularly anymore. We don't do it quarterly. We just do it intermittently as part of ongoing quality work. But when we celebrated our five-year anniversary, as I mentioned, in 2022, we decided to take those 10 people that I mentioned, had been with us since the very beginning, and let's do the SAQOL again 5 years later. That's a long time in a person's life. How are they feeling now?? And that's why I love these patient-reported outcome measures because it's not have they improved significantly from an impairment level? It's how are they feeling. How do they feel they are participating?Ê And so, we readministered it and we found that they maintained all of the progress. From baseline back before they started participation to five years, we were still seeing that statistically significant improvement in their quality of life. We didn't see statistically significant improvements from the one-year mark to the five-year mark. We were able to just um determine and see that consistent participation helped them maintain all of that progress they had made in their quality of life and their self-reported outcomes within that first year.Ê [00:31:01] MBH: Well, exciting to see the evidence for the groups after one year. And to see it maintained after five years, it would be so interesting to get a measurement from a SAQOL from someone who left after that one year and compare it to the five-year Ğ five years later.Ê [00:31:23] MA: That would be interesting. [00:31:25] MBH: Would that be a possibility?Ê [00:31:28] MA: Perhaps. We do keep in contact with some of our members even after they've left and discontinued services. Thank you for the idea. Yeah. That would be really interesting. [00:31:40] MBH: All right. Of those 10 people, was there a variety in age, gender, and years post-onset? Or were they all the same number of years post-onset?Ê [00:31:52] MA: They were different. They all would be classified as chronic aphasia. None of them were technically in the acute phase anymore. The cohort of 10 were primarily men. I think we had two females in that cohort and eight men. All English-speaking. All of our um services are provided in English. But in terms of level of severity, they were all quite different as well. It was a very diverse sample in that regard.Ê [00:32:22] MBH: Wow. Well, that is exciting.Ê [00:32:24] MA: I should mention too, one of the Ğ a couple of them might have been like one year, two years post. But one of our 10 was over 40 years post-onset. [00:32:34] MBH: Well, that is certainly worth mentioning. Over 40 years post. Well, that is some exciting evidence, I would say, to making a difference 40 years later is really incredible. [00:32:49] MA: It was very exciting to see. Yes.Ê [00:32:51] MBH: And that person still participates?Ê [00:32:53] MA: They do. Mm-hmm.Ê [00:32:55] MBH: Wow.Ê [00:32:56] MA: And with that project that we did where we looked at the five-year data to just kind of get their inputs, we also did a program evaluation survey. It was electronic. So that they could complete it with their family and the comfort of their home. And we just asked them questions about groups specifically. We asked questions like does working in a group help you? And then for those that were able, we asked, "If so, how?" If they could provide us some open-ended feedback or some comments just to give their input on their attitudes and thoughts about groups, we really wanted to hear that and gain more information.Ê For all of our questions about does group help you? Do you feel you've improved your communication? Would you recommend an approach like this to a friend who has aphasia? We had 100% all yes. It was all very positive in terms of how they felt about the group with these yes-no questions.Ê And then when we asked for these comments, we got a lot of great comments. Some people saying which activity is their favorite? And why they keep coming back? What is it about group that really they felt helped them? And what we did was we kind of analyzed all of these comments and we identified three distinct themes among what everyone said.Ê The first theme was skill. A lot of people make comments like I like that I get three hours to keep practicing my communication every week. Really, at that kind of skill level. Also, the second theme we noticed was a sense of belonging. If they made a comment about the fact that other people in the room also had aphasia. They don't have anyone else in their life who understands aphasia like that. Comments like that, we kind of grouped in that sense of belonging theme. And then the third theme that we identified was the social opportunity. People saying, "I've made new friends. I get to socialize every week. I like that I can talk with these people about what's on my mind." And so, when we looked at it from that perspective, we saw that 66% of participants noted the skill level comments and 66% Ğ because people left multiple comments. 66% also enjoyed the socialization. And about 33% identified the sense of belonging type of comment that fit into the sense of belonging theme. It was just really great to get that feedback to know what are they looking for and what do they enjoy way about the group itself. And it was great to hear some of the comments to know more. And so, we can keep facilitating that for them. [00:35:43] MBH: Mm-hmm. Well, if you think about it, when someone has difficulty communicating or sometimes the course of life after a stroke, there are not as many opportunities to meet new people and make new friends. And I have friends who are like, "I'm good with the number of friends I have." Some people don't want to continue to make new friends their whole life. I am kind of on the other camp. I love to make new friends and meet new people. I mean, that's how I met you, right? I just you know introduce myself. And to think of that being taken away from someone who really does like to meet new people is so difficult. To provide that format and that opportunity for people is really worthwhile.Ê [00:36:37] MA: It means everything to me. Because, I mean, the literature shows that even their existing friendships might tend to shrink a little bit. Those existing social circles can shrink after a person acquires aphasia. I think about, a lot of my best friends live very far away now. We've all kind of gone separate ways as we've grown, and our careers and our families. And we keep in contact through texting or email things that are very heavy on the language base. A lot of those connections can fail and be lost after a person has a stroke. I love that we're able to offer this close to them where they can access it as much as they want if they find those connections are really helping them improve their life. [00:37:28] MBH: And it can be from the perspective of the person who has the stroke. It can be hard for them to communicate with other people or be embarrassed for a while. And then when they're ready, sometimes those people aren't as accessible. Or you haven't talked to someone in two years since a stroke. And you're going to call someone up now, it's just a little bit awkward.Ê [00:37:54] MA: Yeah. And I think another aspect Ğ because we've seen Ğ I think kind of speaking to some of our favorite kind of outcome stories, we have seen so many friendships flourish. And so, a couple of our groups with this consistent participation over years now, they know each other so well. They ask about each other's families. And they've started kind of doing outings outside of our environment, right? They'll meet up. They coordinate it. They go on nature walks together. They go get coffee, dinner, movies. We have a couple different groups that have decided to do this outside of our aphasia group time. And it's been so wonderful. Because now they're not just participating in this social opportunity where they can have this meaningful impact on their communication with us. But they have all these opportunities to do it outside now as well.Ê And along with that, they typically bring their families. Now we have these caregivers that are getting more peer support from one another with these increased opportunities and just these introductions that we've been able to help them with. It's really exciting to see those support networks and friendships flourish.Ê [00:39:10] MBH: Mm-hmm. Yeah, the positive outcomes can just grow exponentially when that happens. And, really, they are participating in life then, right? [00:39:19] MA: Exactly. Yeah. They talk about, "This new movie's out. Anyone want to go see it this weekend?" And they go for it. That's what I always say, the best group is where I don't really have to say much. They can kind of lead the group on their own because that's what it's all about. The less I have to facilitate with them or for them, the better the group. And so, it's just so exciting when we get to that point and they've built these friendships and feel more comfortable and confident. We see such an increase in communication confidence. And it's wonderful. [00:39:56] MBH: It's so important that confidence peace. Let's say you have one of these wonderful groups of six people and they go through eight weeks. And at the end of the eight weeks, they're ready to continue. Can they continue as a group? Or how does that work?Ê [00:40:12] MA: That's very important to me. Because if they've hit it off with people, then, by all means, I want them to stay together. When we're getting ready for another rotation, we go to our current members first and we say, "How many of you guys want to stay on for the next one before we bring in some new people that we've met in the last few months that want to participate?"Ê And so, it's great. Because then they get the option of, "No. I want to stay here. I'm keeping my spot in this group." And then if anyone discontinues, we add some new faces. And they're welcoming. And we get to meet new people that way. We've had some people kind of stop and come back. And some people that have been consistent the whole time. [00:40:58] MBH: Okay. Okay. Well, that's great. All right. You've talked about some of the triumphs along the way that people have had, that groups have had. Can you tell us a little bit more about some of those triumphs and positive outcomes? [00:41:15] MA: Absolutely. One other great participation story that I like to tell is I had one gentleman in his 40s, had moved back in with his parents. And Dad came to me and said, "He used to play chess all the time. He's so good. And he wants to play. But I don't know how." The dad's like, "I don't know how to play chess." And I was like, "Well, I don't know how to play chess either. But, okay. Let's work on this." We just kind of Ğ I brought it to all my groups that week. I'm like, "How many chess players do we have?" And I just kind of acquired across all these different groups. Some of which have never met each other, right? Because they come at different times. Gathered all my chess people and introduced them to one another. And outside of our hospital environment, our outpatient building, they started meeting in the community. They would meet at the library, the third Friday or whatever it was of every month. They'd spend two hours together just playing chess and subsequently talking. Improving their communication. Having conversation. Working together on this joint interest. And that was one of my favorite stories. I had very little to do with it. But I just loved that being in that group environment allowed them access to creating whole things for themselves that they did for years until COVID hit. They did it for a long time. And so, it was just really, really neat. That's participation at its finest for me. [00:42:43] MBH: Absolutely. So fun to hear. That's great. [00:42:46] MA: We've also though had more concrete examples where people come and they say, "I want to get back to work." That's their primary participation-based goal. And we hear that a lot, of course. And so, we've had a lot of great stories where people did their inpatient rehab. They did their outpatient rehab. And then maybe they came to us after. And we kind of simulated. I did a lot of, "Give me your job description." They could either print it out and give it to me. Or they could tell me about it. And I would just simulate as much as possible within the group environment. Like, "Maybe this skill would be needed to return to work."Ê And so, we did a lot of practice like that and a lot of people were able to get back to either their previous job or a different job. Just in the workforce in general. And so, we were always making those suggestions and our observations. And then they would continue and go on and work with some of our other professionals within the post-acute care to achieve those goals, which was really exciting. [00:43:48] MBH: Oh, that is exciting.Ê [00:43:51] MA: Also, we have a really cool volunteer department within our ĞÊ [00:43:54] MBH: That's the next question. I was going to ask you. I was like Ğ because I'm thinking of this client that I have now who would like to return to some type of work. Not his original career. But we've been talking about possibly him volunteering somewhere. Tell us about the volunteer department. [00:44:14] MA: Yeah. The volunteer department is great. It's been so nice. We have amazing people who run it. And if I have someone who's like, "I don't know if I can really get back to work and like an actual employment situation." But they just want a purpose. They want something outside of the house. They want to get out of the house more. The volunteer department's been great. They can get set up with various departments within the hospital. Some of which they get to interact with patients or interact with staff. We're now giving that another communication opportunity with all of these other people. And they come for about three hours a week and they do a volunteer job for Northwestern Medicine. That's just been wonderful too. And a lot of people have taken advantage of that. We also take in that volunteer department students. I've taken students who come and help out with groups every summer. And they're just volunteering their time. but they're able to see this patient-centered care and life participation approach at such an early part of their learning. And that's been such a neat opportunity I think for all of us.Ê [00:45:24] MBH: Well, I really like the idea of the volunteer, the people from the groups volunteering. Because it really promotes aphasia inclusion at the hospital level. I'm sure that some adjustments have to be made for some people who cannot communicate clearly. Do you have anyone who comes to mind who went to volunteer in the hospital but had limited communication skills and any of the accommodations that were made for them?Ê [00:45:56] MA: Yeah. I make it a point. A big kind of part of my role within the hospital is to really provide supportive communication training to all of our departments. Anyone who might um interact with any of our patients, I mean down to our environmental services when they clean the rooms. The people running our cafeteria and our hospitality staff. I think that has been really helpful.Ê But in terms of accommodations, whatever department they get placed in as a volunteer opportunity are so accommodating. And so, they may come to me and say, "What can I do to help this person be more successful?" We have those conversations. And a lot of times I'm still seeing the person in group as well. I can say, "How's it going? Do you need anything? Can we do anything to make it better?" And so, it's just kind of person-specific in terms of those volunteers.Ê And we've switched jobs. They'll start a volunteer role and they just don't like it. And so, we'll say, "Okay. Well, let's try something else. What else do we have available? And we'll make some changes if that is what they want. Yeah, I think the accommodations, it's just really having that conversation. And seeing how is it going? What can we do to make it better? And making those adjustments along the way. [00:47:10] MBH: And having that hospital environment with people who are trained to support them makes a big difference. [00:47:19] MA: Absolutely. [00:47:20] MBH: Yeah. All right. Okay. We mentioned that some people had goals to return to work or to return to some type of purpose. Tell us about you had a client who had a public speaking goal. [00:47:38] MA: Yes. Yes. That individual had a public speaking Ğ he had a public speaking role in his profession. He did it often. It was very important for him post-stroke to be able to do that again. He didn't necessarily want to go back to work. But he did that. That was part of who he was, was to do these public speaking engagements.Ê And so, we would practice a lot. He would develop PowerPoints with whatever topic he chose. And we would hold lunch-and-learns with all of our aphasia groups. We invited everyone from group saying, "Hey, this person's coming. They're going to talk. They're going to teach us some things. And it'd be great if you came." Everybody would bring their lunch with them. We'd be in a conference room. And this individual, after a lot of practice, and practice at home, and I would give him some pointers and some feedback from a speech therapy standpoint, he would get up there and he would do it. And I think we did it about six times. We did about six different lunch-and-learns. And it was great. We all learned things. Because it wasn't about stroke or aphasia. It was about his interests, and what he did before, and things that most of us knew nothing about. It was great for us. It was great for the aphasia groups because they wanted to support everybody. And so, by coming, they were able to support him. They were asking questions. They were initiating a conversation about his topic. And it was just a really cool experience that we were able to do numerous times. And his family came. Other families came. It was really, really great. [00:49:12] MBH: Well, that's wonderful. I love how the group program fosters all these other offshoots.Ê [00:49:21] MA: Yeah. Exactly. It's just being creative. Hearing what they need. And if we can't do it within that group, well, let's see how else we can make it happen. It's really neat to learn from them, and see what they need, and be creative with it, and see where we can go with their goals.Ê [00:49:37] MBH: So fun and so important. All right. For those people who are listening who maybe work in a hospital environment or outpatient and they're like, "We have an aphasia support group. But I would really like to expand." What are some resources that you could provide?Ê [00:49:58] MA: Absolutely. I think if you as listeners are not familiar with the life participation approach yet, I would start with basically all of Dr. Roberta Elman's work. She was a big inspiration for me. I don't know her personally. But I have read a lot of her work. And she has great articles. One of which is called Aphasia Centers and Life Participation Approach. I think it was from 2016. It's just a great foundation of knowledge of what you need to know going into developing something like that.Ê She also has papers about the importance of aphasia group treatment. And she actually really was one of the first people, if not the first person to develop the book club concept. Everything that I knew I kind of wanted to do, she just does brilliantly. I learned a lot from reading her work. I would suggest that. As well as Dr. Aura Kagan of the Aphasia Institute. [00:50:59] MBH: Just go back to Dr. El Ğ can you tell us Ğ can you spell her name just for the listeners? Dr. Roberto Alman? A-L-M-A-N?Ê [00:51:07] MA: E-L-M-A-N. And I did include a couple of her papers in my references. Access that as well. But, yeah, just great reads to give you the foundation of what you really need to know when you're doing this group development.Ê [00:51:23] MBH: Excellent. Okay. And where was Dr. Elman out of?Ê [00:51:27] MA: She's out of the Aphasia Center of California.Ê [00:51:28] MBH: Okay. Northern? Southern? Do you know?Ê [00:51:32] MA: I think like Central California. Yeah. Yeah. I forget exactly what ĞÊ [00:51:34] MBH: Or Central. That's just like the Midwest. We say East or West. [00:51:39] MA: California. I don't get to go there often, unfortunately. It's all unfamiliar territory to me. [00:51:45] MBH: Well, I lived in h Los Angeles for a while and worked in Los Angeles. My curiosity came from that. Anyway. Okay. Dr. Roberta Elman. Okay. And who else?Ê [00:51:55] MA: Her work's phenomenal, Dr. Aura Kagan. I also read a lot of her work. She and her team at the Aphasia Institute had adapted the ICF WHO model into what they call AFROM, which is a framework for outcome measurement for aphasia. And so, I made sure I did a lot of investigation into that brilliant work that they did. Because AFROM is now a framework that I use every single day. I don't do care without it. And so, I would really suggest people investigate that more if they're unfamiliar with it.Ê Once you kind of have that foundational knowledge going into development in terms of resources specifically, Aphasia Access, which you mentioned. Just as a disclaimer, I'm the vice president of this nonprofit organization. But all they do and all we do in Aphasia Access is try to connect, support, and educate any clinician no matter what the setting is to be better prepared to provide patient-centered care and the life participation approach to aphasia.Ê It's a kind of membership-based opportunity through this nonprofit organization. And members have access to what we call a resource exchange where people who run aphasia groups can upload some of their work. Some really neat topics or neat exercises that they found were really successful with their groups or really fun. And they just upload it. They give instructions, like, "This is how we did it. This is how we facilitated it." And you can just download it and use it the next day. Use it same day.Ê And so, it's a great exchange of just ideas. And Aphasia Access also has what we call Brag and Steals, which we do them virtually. We also do them in our biannual conference where people just go up and they brag on their coolest aphasia group or aphasia idea and they want you to steal it. Go ahead. Take it. Implement it with your client. Just use it. And it's all LPAA-focused. It's a great support, especially as you're developing something new, I think.Ê And for me well, through Aphasia Access, through ACRM, we mentioned, I got involved with a lot of national and international organizations because of the networking opportunities. It allowed me to meet people who were doing this and doing it so well. And I got to learn from them and ask them so many questions. And they would give me ideas and suggestions. And so, I think that is just priceless.Ê If I were to suggest to someone who's developing this, I would suggest that as well. And I'm happy to be contacted as someone who's done it in the past. But just learning from those that have written the work that we're reading about how to do this and just picking their brain, it's been such a great opportunity.Ê [00:54:53] MBH: Well, wow. It's amazing how much you've grown in this practice over the past Ğ you had the idea in 20 Ğ what would you say? 2015, you had the idea?Ê [00:55:04] MA: Yes. Yeah. 2015 is when I started the support group. Yes, that's when the concept grew in my mind that maybe this could be something more than just a monthly support group. And by 2017, we were able to run it.Ê [00:55:20] MBH: Wow. And it's going strong. Well, it's really exciting to see where it's going to go. What are your future projects or plans with Marianjoy?Ê [00:55:32] MA: Yeah. Actually, I will be doing another podcast with you, Mary Beth, about one of our newest projects, which was developing in addition to the program I'm speaking about today an intensive comprehensive aphasia program. That is still a project that we are very passionate about growing. Also, just continuing to be creative with our services. We have virtual groups now partially. Thankful to COVID, we developed this whole virtual platform. And we've continued that because we've seen that we've been able to reach people in more remote areas who can't travel to us. Or maybe they are close by but they don't have transportation to come to the in-person group. We continue to be creative with the virtual offerings and just these connections that we're helping our clients make.Ê We also continue to, as part of our Aphasia Center, just do some outreach. Within our hospital mostly or our hospital system, we've done a supportive communication training video where we rolled that out so that everybody has at least some knowledge of supportive communication. As part of that, I get my clients and the groups to volunteer.Ê We do resident training now where my clients come and I kind of do a spiel first to the residents about supportive communication in aphasia. But then they actually get to talk with my clients and the clients get to teach them. And they get to use supportive communication in practice. And then the speech therapist will give them some feedback. And most recently, we're starting a project looking at supportive communication and tools that we can implement to support our neuropsychologists while making decisional capacity evaluations. And being sure that they're able to obtain the information they need to obtain to make these determinations and these evaluations. But making sure that they're accurate and that they're using supportive communication and have the tools at their disposal to have those conversations.Ê There's just so many needs that we can identify, especially in a healthcare setting. And so, it's just our future projects and plans, they pop up as we see, "That was hard. Or that was Ğ maybe something we can improve on in our patient care." And so, they're kind of everchanging. And it's just really exciting to make that positive impact for our inpatients, our outpatients, and our community members living with aphasia. [00:58:01] MBH: Mm-hmm. Well, it's so exciting for you to be in such an environment at Northwestern where it seems like, whatever idea that you have, given the research and the work to get it started, you're allowed to run with it. What a supportive work environment. That's great. [00:58:20] MA: Yeah. Very supportive of bettering patient care, bettering outcomes, and professional development. We're very fortunate. [00:58:28] MA: Yes, you are. Thank you so much for sharing this with us. And we have just a couple more minutes. I want to ask you, you have really contributed so much to the field of aphasia, and to your patients, and to Northwestern as well, what life lesson have you learned from your work?Ê [00:58:50] MA: Great question. I think for me, through my career, knowing that my patients will always know more than I do. I feel like, especially as a newer clinician, you feel like I have to know every single thing. And I have to lead the session. It's almost like clinicians can get tunnel vision on the goal that's documented in the EMR.Ê And for me, I think the most important thing I've learned is that they know more than I do. I need to just be a listener. I need to know Ğ I need to hear them out. And then I can ask them, "I hear you talking about this. Is that something that you want me to help you with?" And I think it's a change of focus. It's a change of approach. But for me, it's been the most significant lesson for my clinical skills and a big change that I think is needed in everyone's approach. And so, knowing that they're going to know more than I do and I need to hear them out before I make any suggestions myself, I think that's been really important for me. Because everybody's different. I can't go in with this textbook knowledge and think it's going to fit every single patient I meet. And I think that's something that I've been striving to spread among newer clinicians, students that I meet, anyone who is interested in the field of aphasia and just starting to learn more. [01:00:11] MBH: Well said. Thank you for sharing that. So true. It's so true. And so, humble of you to say that as well. All right. Well, I think that is just about time. For everyone listening, Michelle will be joining us again for another podcast where we're going to really dig into an intensive aphasia therapy program with the LPAA approach. Please listen to that next time.Ê And thank you so much, Michelle, for participating. You gave us so many ideas. And I'm sure this podcast will be inspiring others to start similar programs. You did mention that it was okay for people to reach out to you. What is the best way to reach out to you?Ê [01:00:56] MA: Probably email. My email is just my name, Michelle.armour@nm.org. Thank you so much for this opportunity. And, yes, happy to connect with anyone who may be interested. [01:01:12] MBH: Well, thank you. It truly has been an honor to have you with us. And I look forward to the next one. [01:01:18] MA: Thank you. [01:01:19] MBH: And thanks, everyone, for listening. Take care. [OUTRO] [01:01:21] 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 85 Transcript ©Ê2024 Keys for SLPs 26