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I am really honored to have Mona Ahmed from the American Stroke Foundation joining us today and we're gonna dive into hearing a little bit about the patient perspective. Mona, it's really great to have you. You join me and, and thanks for, thanks for sharing a little bit bit of this really important uh perspective. I wondered if you could give us a little brief introduction to yourself. What you do your role of the American Stroop Foundation, a maybe a little bit about American Stroke Foundation's mission. Yeah, I'm happy to be here. Um So my name is Musa. I'm an occupational therapist. Um I got my uh occupational degree from Washington University School of Medicine um 15 years ago. And so for anyone who doesn't know occupational therapy is uh working on anything that occupies your time. So I like to give that general definition because everything occupies your time. So there's occupation as in work, but there's sleep and leisure and play and all those things in between. So anything that occupies your time or you can think of it as like physical therapy. But for your whole life, um So at the American Stroke Foundation I'm the program director and the academic field work coordinator. Um The American Stroke Foundation since 1997 has been providing post rehab services to stroke survivors and their caregivers in the Kansas City area. Our mission is to empower stroke survivors and their families to overcome the challenges after stroke. So what we see is after the medical journey is done or insurance has kind of ended the journey. Um For them, there's still a lot of need for support and a formal structured way to continue to work on mental and physical health. So we offer community based programming to do that. We have three sites in the Kansas City area and then we also offer online and virtual offerings for our national and international clients. Um I guess it'd be, it'd be really great to dive in. So that's a, you know, really important mission, right? What are the, what are the most common challenges that you see faced by stroke survivors in their recovery process? Yeah, the number one challenge I see is um the need for emotional and mental support, mental health support. So we are actually lucky enough on our board to have a neurologist who is a stroke survivor herself. Um And one of her great um epiphanies and kind of the thing that changed her paradigm in terms of how she works with stroke survivors is after she had her stroke, she really, it wasn't the medication management, it wasn't the physical limitations um that were impacting um prognosis and that were impacting carryover and generalization. It was the fact that your life is turned on its head and you didn't get that support or resources for it. And after the medical journey, a lot of issues come to the forefront that weren't necessary addressed in the medical setting. So you go home um and you're doing things completely differently in a completely different timeline or you're going home with a caregiver. And if it's family, this whole disruption in the rules causes such chaos, you know, am I the spouse or am I the caregiver? And you find yourselves burnt out quick and you find yourselves butting head over communication. Um And there's no guidance, there's no handbook on that and behavioral health support, mental health support everywhere. Um practitioners, you know, have huge waiting lists. Um There's still a lot of, you know, shame and stigma around needing those services and the stroke survivor and their caregiver, you know, can still be in crisis mode. And when you're in crisis mode, it's hard to be in a learning state when you're in an emotionally activated state. And so whatever resources you got in the hospital, you know, you have to track those down. You have to make those calls, you have to have the frustration tolerance and the problem solving and the schedule management. All the things that may actually have been stressors, prestroke. And now after stroke, you know, you're given all this information and you know, now manage your life, right? So that emotional health and mental health piece is definitely a big perpetuator um of all symptoms, stroke related and not. And the other is caregiver support and caregiver respite. Um The caregiving role is actually, you know, should be a big social determinant of health. Um because it caregiving status impacts your health. We're all caregivers in some capacity. Um There is a quote by Ros Rosalind Carter that basically says, you know, we've all either been a caregiver will be a caregiver have had caregiving services. Um You know, we all are gonna fall into a caregiving pa you know, story and so to not have caregiving support and understand that um the lifestyle changes that happen when you're a caregiver and also, you know, your health markers um directly reflect caregiving status. So where's the support? Where's the financial assistant? Where's the respite? Where's the, you know, it's OK to have feelings of sadness and anger and frustration. It doesn't mean that you're not a good caregiver. So I would say those are the two big things that come to play emotional mental health and then the caregiver piece and they overlap as well. Sure, I mean, there, there are a lot of big changes that happen, right? Uh uh You know, it, it a a stroke is obviously AAA huge thing to have happened to, to someone and, and, and it must have a huge, huge impact on their mental health as well as their, their physical health. We've been talking a little bit about, um, antithrombotic medication this evening how a stroke survivors perceive the rule of antithrombotic medications in their recovery and the prevention of future strokes. Mhm. I think they, you know, perceive value in it just like any medications. Um, we have this perception that, you know, when we are not feeling well, when we have a significant event that medications are at the forefront of what we should be looking at. So the medication piece is definitely important. Um, being on those type of medications obviously impacts, you know, risk when you have a fall, you have to be more cautious about injuries. Um And following up on that, it also plays into, you know, I'm not a medical doctor. So I'm not, you know, we don't get into the symptoms and the side effects and everything. But my job is to make sure people feel empowered to understand what these medications are for, that they and their caregivers are getting the information in an accessible manner that they understand the interaction with other uh medications that they understand the impact on safe activity while being on these blood thinners and also any dietary considerations. Uh But I think the main thing with medication is people, you know, at our Stroke Foundation, they tend to take it as you know what the doctor says as gospel. Um, but I think just, you know, advocacy and making sure they understand what they're on and why they're on. It is kind of where, you know, the extent to which we, um, discuss those type of medications. Um, it's another thing to think about at a very critical time. You know, it's a, it's a, an, another piece of information that you've got to digest and understand and comprehend that. Actually I, you know, II, I've now got to start a new medication. What are the most common challenges uh that you see with stroke survivors when it comes to adhering to secondary prevention treatments? Mhm. Um So lifestyle changes are an evidence based part of secondary stroke prevention. Um So behavior change in general is very challenging. I think we, we don't emphasize the ch you know, how difficult that is, it's more than knowing what to do. It's more than willpower. You know, we can on paper, recommend something that is an exact fit for where we want the person to be. But that actual change embedding a new habit into your routine. There's a science to that and requiring change, you know, initiating a change requires energy and after a stroke, you know, your reserves are down. So we're requiring this input of mental and physical, you know, energy and mental flexibility that, you know, energy is already at a premium. That's number one, number two health, you know, stroke survivors tend to fall in the lower category of healthy behaviors. Um And so, and they're underserved in general. So if you combine all that, you're just setting up, you know, the stage for an extra challenge, you've got the physical and cognitive changes after a stroke that make behavior change even more challenging. So lifestyle recommendations in addition to medication, you know, often go hand in hand for secondary stroke prevention, but there's really not that cohesive, comprehensive, robust support for how do you actually initiate a change? So at the Stroke Foundation, we talk a lot about, you know, the pillars of brain health, we call them. So sleep eating for brain health, pain management, resiliency, physical movement. Um but the information is not new, we all know to get good sleep, we all know to make it the healthier food choice, we all know to move our bodies more. But how do you actually make that happen? How do you overcome the self thoughts? How do you overcome that, you know, inertia, physical and emotional, how do you fit time in your day? You know, there's this concept of health work um that was in an article from the Canadian military that I really liked and health work is basically just any work prescribed medically or recommended nonmedically um for work for the purpose of getting better. But if you spend all your whole day and activities relate to quote unquote, getting better, there's little energy for the things that actually give you quality of life. So there's a balance. You can't have everything you do via therapeutic activity. You can't have every, for instance of walking, be practicing your gait, you know, you'll burn out. So how do you balance all this stuff and this perception that if I don't do everything, my home exercise program, if I don't exercise this way, if I don't eat 100% on the, you know, on the mark and stuff, then I'm not doing everything I can for stroke recovery. So finding that balance, but definitely the lifestyle behavior change. Um, it's already a challenge, prestroke. Um And it only becomes a bigger challenge, post stroke. How do stroke survivors and their families perceive their follow up care and ongoing management? Are there, are there gaps that could be addressed? MDA? Yes, I think the main gaps again are like long term support. So, you know, how do we keep this going from a financial perspective? How do we start, you know, changing our house and the equipment that we have to make sure that, you know, the caregiver and the stroke survivor are not getting injured in the poststroke process managing their new life. You know, how do we, how do we get back to like on, you know, life as it was? Um without it being we're still working on getting better or we're still in crisis mode. Um So I think when, um, you know, they go to their follow up visits yes, they're getting medication management and yes, they're getting, you know, a health checkup. But the conversation from either direction is not necessarily addressing, like, is this, it, is this where we're at? Um And how do I, you know, find purpose? How, what is my identity now? How do I make myself feel like a valuable member of society? Like, how do I reestablish my identity as more than a stroke survivor? Those are the common themes that we see and what do you think are the key aspects of treatment and recovery that stroke stroke survivors feel are most critical to improving their quality of life? I think having number one, having um the right equipment um to be able to access um what they need to inside and outside the house. Um insurance, you know, the people who, you know the guidelines on what's covered, what's not covered, it doesn't always align with what facilitates quality of life. Um You write quality of life in a letter of medical assess necessity and it tends to get rejected. Um They wanna know about pain and independence and reducing caregiver burden, but quality of life is a health predictor, you know, so um really having the equipment and the devices that they need to be able to support the body and being able to engage in their environment, I think um they feel like that is very important. Um And the second thing is, you know, transportation is a big one. having an accessible vehicle or having reliable transportation to be able to engage in community activities, to be able to um connect to the, the context social um that they, that make them feel like they're part of something bigger. Um or connect to the things that were meaningful before transportation is very tricky. Um It's a very big hit to your independence to not be able to go where you want when you want or to feel like you're always imposing on someone, you know, all those feelings come into play. So really, um you know, all those come back to the core of like, how am I going, you know, ho how do I relate to myself and how do I relate to someone else after a stroke? Because, you know, the social support can fall away after a while after the acute phase and, you know, your life is still going on and you're still facing challenges. So I think having a stroke or having any events where your physical and cognitive being changes, it brings anything that was not um anything that was not pro you know, pro wellness or prohealth just gets brought to the forefront um because things that were automated aren't anymore. And so everything is requiring more effort and um you have more time to, you know, you have more time to sit with things. So I think, you know, anything that cuts you off socially um from the world around you um tends to be a big challenge. Super important things to bring right out to the floor maz. Now, as we, as we're thinking about secondary prevention and therapeutics this evening, actually beginning to think about the impact all of that has on a patient, their quality of life and what that means for them on a day to day basis are, are really critical. What kind of support and education do stroke survivors need to effectively manage their condition and to prevent future strokes? I think um they need education on brain health in general. So we're not making these recommendations because you, you know, these recommendations aren't only because you had a stroke, but these are the recommendations that we know will keep your brain and body healthy for as long as possible. So, you know, after they're medically stable, do we need to do a sleep study? Were they using a CPAP before and have not used it? You know, sleep is a huge part of recovery after the stroke and really understanding what's normal and what's not normal for rest needs. Um after a stroke, um that's really important and then having some guidance on um a diet because, you know, they'll go online and they're like, well, this person said this and this person said this or they're seeing a nutritionist who doesn't have access to their medical history. So really some guidance um so that they don't do any, you know, program that's very concrete in a way that won't be given the nutrients they need um physical movement, making sure they're clear if they have a BP ranges, you want them to stay in and how to assess good activity versus, you know, you need to stop and do something different. Um making sure that they have access to uh mental health services and then, you know, lots of things that fall, I always call resiliency like the catchall. So making sure that they have education on what to expect like visual changes. Um And that's more than just acuity, you know, a lot of people are like, oh yeah, my glasses are my prescriptions updated or I can see fine but vision is much more than that um understanding changes in taste that may happen or other sensory um factors, understanding how to manage stress, understanding what is a normal part of drug recovery and what mean, you know, what is the symptom that you need to be concerned about? So really just um helping them um you know, have cause we, we have a, we have a picture of what, you know, their prognosis can be, we have a frame of reference, they don't, so just giving them some reassurance on what is quote unquote normal what to expect. Um And what to be mindful of does a lot to ease that burden and then also making sure that they have things in a written format or any format, you know, their learning style. Um You can give them the detailed information, you know, they need to know obviously all the side effects and things like that, but really making things user-friendly a one page summary handout, making being aware of the fonts and the sp and visual noise and making sure that either the stroke survivor or the caregiver is able to verbalize understanding and agreement before you leave the session. So that's, that's a really important point, isn't it? That's about communicating risks, clearly, risks and benefits and, and next steps and um implications to stroke survivors. What else, what, what can healthcare providers do to better communicate the risks and benefits of secondary prevention, antithrombotic medications to stroke survivors? Um So anything that, you know, I would encourage the stroke survivor and caregiver to come with question so that you can be prepared to answer those. Um And then also, you know, ii it's just communication, I think any anyone stroke survivor or not will be receptive to learning about something that could potentially help. But it's the communication piece, right? So after a stroke, if you have someone with aphasia, then getting, you know, a speech therapist in there, um to help with the communication piece, you don't want to just like when you have an interpreter, you're supposed to look at the client, not the interpreter. Same with a stroke survivor. If you're not looking at them like uh autonomous adult with a decision making capacity that impacts the whole interaction. So the information you could give could be very effective, could be very beneficial, could be best practice. But if you're not making them feel like they're part of the decision making process, um that kind of gets negated. So, um you know, everyone is receptive in my, uh you know, in my experience, everyone is receptive to um caring about something as long as you know, the environment is conducive to it. Um And they know that their, their concerns and their fears are being addressed. I can healthcare providers improve their approach to, to that kind of patient centered care for stroke survivors, particularly when it comes to addressing their concerns and, and needs. Mhm. I think like having, um, you know, having kind of a social survey given to them before a lot of people, you know, are a lot of medical practices are doing that. Like, do you have any in the, you know, the next few months? Do you have any concerns about housing insecurity, about financial insecurity, about food insecurity? So finding out like, what support do they have to manage all these recommendations or to do the research? Um and a lot of access to, you know, whether it's a treatment, a medication, a clinical trial, you have to have a, you have to be able to access that. So who's gonna bring them there? You know, who has the time, who has the vehicle who has the money, um, to stop what they're doing and bring that person there. Can they actually access what you're recommending? Because that, you know, again, that's a big barrier if you, if you can't, if a clinical trial is something the person wants to do, but they have no way to get there. Um, and they have no way, um, to make an informed consent without a caregiver. Do they actually have that support? What support are they working with? And then a stroke survivors? Not on their own? Right. They've got usually a family or a caregiver most, most the time, how can health care providers better engage caregivers and family members in the stroke recovery and prevention process? Mm. I think, you know, a few minutes dedicated to just checking in with the caregiver individually would be beneficial and making sure that they have access to the services they need just because someone has a caregiver come in with them doesn't mean they have caregiver support. Um, you don't know what's happening at home. Um, you don't know, you know, the, you know, if there's a, you know, attitude there, if there's a barrier in attitude, you know, when they interact, then obviously that's gonna impact it too. Just because if someone is with them doesn't mean they have their support. I think it's important to know. So, um, really understanding individually from the stroke survivor and from the caregiver perspective, um, what the picture is at home to support health care and medical recommendations. Um and making sure both have resources and then, you know, bringing in your interdisciplinary team. Do you need a social coworker come facilitate the appointments? So that at least, you know, the information is, you know, getting to the person, would it help to have a chaplain? Would it help to have, you know, someone to facilitate communication? I'm really using that team um to help, um, get the maximum, you know, to make sure that that medical visit and those recommendations are value-added and not another stressor. Um, and we've been talking about emerging therapies this evening, um, particularly Factor 11 A inhibitors. How do stroke survivors respond to the idea of using newer treatments like factor 11 A inhibitors and especially if they've had previous complications with traditional anticoagulants. Mhm. I think they get, um, you know, in my experience, everyone gets really excited about it. If they hear about it from a doctor, you know, they definitely take it at face value if they hear about it from another stroke survivor, you know, they're only hearing the benefit. They're not hearing like the actual work that, you know, it takes to get the maximum benefit for that because you can have a medication that works wonders. But if you're not supporting your brain and body, um, in other ways that impacts the end result. Um, and so if you've had side effects before, obviously, there's fear there's hesitation. So I think it just ties into what we've talked about before. It's really getting that full information and knowing what, you know, what the actual and making it, you know, reducing it down, taking out the jargon and really making it at a level that's accessible so they can assess the risk and benefit. Um I think most people again are willing to try something um that can help, but I think expectation management is a piece that can definitely be improved. Um for all medical providers is really understanding that, hey, this is what the medication is intended to do. Um Here's what you can expect to see, but it requires, you know, Xy and Z and we'll start start from here and go from there, but there's not going to be something that you can take um to prevent further strokes or, you know, get changes in recovery without some actual, you know, it requires an investment from both parties. Um It's just not a, it's not uh something that works in a vacuum in your experience. High receptive are stroke survivors and their families to discussing clinical trials or emerging therapies. I think they are, they're receptive. I think a lot of stroke survivors is very important for them to give something back and to have something positive come out of their stroke experience. So, in my experience, yes, they're very receptive to clinical trials. Um I think the big thing with that again, is expectation, man management. Um, and making sure that both the caregiver and the stroke survivor, whoever is gonna be providing the support through that trial, both parties are involved in all discussions. Um, so something recently, you know, the vim implant for the vagus nerve, um, that's a big thing but people are missing, you know, when they hear the discussion of, oh, regaining arm, you know, function. They're missing the part about, you know, after the implants having to do three hours of therapy per day. Right. So, um, really making sure that people understand that whatever clinical trial they're trying, you know, it involves um mental and physical input. Um that if you had, you know, if you do on its own would also be therapeutic. And then I'd love to chat a little bit about the American Stroke Foundation and, and, and the work that, that you're doing, what, what role does the stroke foundation and the next step program in particular play in helping stroke survivors understand their treatment options and make informed decisions. Mhm. I think it's just having a place to go to be able to talk about those things um without making an appointment. Um so increased access to, you know, professionals that we have in our organizations to be able to discuss those and kind of problem solve. Um The great thing about community work is that we, you know, we ii kinda say our next step program is intersection of neuroscience based Wellness programming with the power of community. So we know community interaction, community participation is a multi of health outcomes. Um And that's what we want, we want people to have these discussions, we want people to problem solve um the challenges. Um and we claiming their lives um with other stroke survivors, but also with other professionals in a nonmedical setting, there's different, you know, the brain is activated differently when you're having a natural conversation versus doing, you know, a repetitive say this, say this, say this, there's a difference between, you know, lifting your arm up and down for motor retraining versus doing an activity that is engaged. It makes you, you know, you're in a flow state and then you've got bilateral integration like real-life engagement um is good. And so we try to remove the barriers of time and abscess and money so that um our program is a, is as accessible as possible for people who wanna continue on their mental and cognitive goals. And we do a lot of community outreach. Um We wanna make sure that the Missouri Kansas area has a strong stroke care community and we wanna make sure that everyone is hearing the voice of the stroke survivor and really understanding the real-life challenges beyond what's in a textbook or beyond what um just fits into the medical diagnosis mos it has been wonderful to kind of work through um AAA really important perspective, which is that of the patient with you. And uh and thank you so much for bringing your, your insights um with, with you to this conversation. We really appreciate it.