31. Diabetes, Disability, and Mental Health - Allyson S. Hughes, PhD

Diabetes, Disability, and Mental Health - Allyson S. Hughes, PhD === [00:00:00] Allyson Hughes, PhD: Anxiety symptoms also feel like low blood sugar symptoms, which is really scary when you're like, am I anxious or am I having a bad low blood sugar and feeling that symptomology. Introduction --- Meghan Beier, PhD: Hi everyone. This is Meghan from Find Empathy. I'm thrilled to introduce Dr. Allyson or Ally Hughes, a Health Psychologist and Assistant Professor in the Department of Primary Care at Ohio University's Heritage College of Osteopathic Medicine. She's affiliated with the Diabetes Institute and the Institute to Advance Health Equity. ~Dr. Hughes work Li ~Dr. Hughes' work lives at the intersection of diabetes, disability, and health policy. She uses mixed methods research to elevate patient and caregiver voices, especially around diabetes, distress access to technology and making diabetes care truly accessible for people who are blind or who have low vision. Her perspective is also personal. She has lived with Type 1 Diabetes for nearly three decades, and she [00:01:00] channels that experience into equity-minded practical solutions for clinicians and communities. I hope you enjoy this talk by Dr. Hughes. Presentation by Dr. Hughes --- Allyson Hughes, PhD: ~Okay, Ally, since this is my computer's not cooperating with me. Um, so everyone I'm, I'm very excited. Um, we have Ally Hughes here today. Um, she is going to be talking about, um, mental health and diabetes. And I think this is going to be a really interesting talk, it's certainly, um, I've run into a number of people that I've worked with who have been living with, um, with diabetes, both type 1 and type 2, and, um, also with other kinds of comorbid neurologic conditions and things like that, and I've often wondered, um, And wanted to learn more about this topic.~ ~So I'm really excited that you have agreed to join us. So I'll turn it over to you, Ali, to give a little bit more information about your background, and then we can get started. I'm also going to allow you to, you should be able to share your screen. ~ ~Okay, let me see. Let me try to pull that up. So~ thank you all for having me. ~I'm really happy to be here. Um, I feel like this date kind of snuck up on me. I was, I think we planned this a little further out. So it was kind of funny when I was like, Oh, it's the day already. How is May here? And it's like end of May and I'm like, This year has been a whirlwind. Um, so ~my name's Ally. I am a health psychologist. And when I went through my training and my program, um, at the University of Texas, El Paso, I chose to, uh, obtain a clinical psych masters. And I started doing my internship hours and proceeding with that. And I was like, wait a second, I don't want to be a therapist. You know, I had I thought I was just going to go out there and just be like a diabetes therapist and, you know, help people in endocrinology offices. And then I realized that I wanted to pivot because I am one of those nerdy people that fell in love with data and fell in love with health policy. So I'll talk a little bit about that. And, um. Mental health and what that looks like. And then I'm also going to talk about [00:02:00] disability from the perspective of some of the research that I've been doing the last couple years, um, with the blind and low vision community as stakeholders. All right. So introductions, you know, as I already said, Oh, something I need to mention that sometimes I forget to say is, um, I, I'm one of those people where research is me search. I've had Type 1 since I was a little kid. And so going on 30 years very soon. And then thanks to Type 1, um, I am now going on six years with eye disease, which is just, you know, not about, you know, stigmatizing things and, um, bias sort of things of, You know, not taking care of myself, but simply because of duration of the disease. So mental health conditions that are common in diabetes, unfortunately, as I'm sure you all know, there's a long, long list, um, that can happen. And You know, maybe happening before diabetes, um, happening after. I have a [00:03:00] side plug here. I have a review article coming out, uh, surrounding schizophrenia, bipolar disorder, and OCD and diabetes. So I will send that to your listserv once that is, um, in press. But just so you know, there's just so much to cover when it comes to behavioral science and behavioral medicine with these diagnoses. And also, as I'm sure you're seeing what I'm alluding to here, when it's something, um, you know, that involves certain medications, it can be, um, really bad for, uh, physical health because it can really promote insulin resistance. So to begin with, I want to talk about some of the mental health disorders that happen so frequently across all types of diabetes. So, um, and really in these cases, I'm talking type 1, type 2, we know there's also gestational, there's, there's many other subtypes, but in general, you know, these, [00:04:00] it's pretty easy to say there's just like an umbrella of these things happening. So there's recent data, and I mean, it's just one study, but, uh, that a third of the kids with new onset type 1 diabetes have adjustment disorder, um, and then 20 percent increased prevalence of anxiety disorders across the board for adults and kiddos. And obviously that's a really big deal. I will also, um, in a little bit tell you about how anxiety and diabetes go hand in hand. Because anxiety also, anxiety symptoms also feel like low blood sugar symptoms, which is really scary when you're like, Am I anxious or am I having a bad low blood sugar and feeling that symptomology. So depression and diabetes, I think this is the biggest one that we see across the board. We, I have all heard about depression and diabetes going hand in hand, whether it be depression came first, whether it be diabetes came first, this is often co linked and there's [00:05:00] increased symptoms of diabetes affecting, let me move my screen, affecting one in four adults with diabetes. So, um, obviously. This depression relationship is huge. The thing I always tell people is it's likely a higher number than even one in four. Um, it's just the best that we have, the best of our ability to, um, measure at the time. And maybe it's not a great measure. So I will also say too, if anyone needs any of the citations from this, uh, presentation, I'm happy to send you references, just requests, and I'm happy to send those after this. So in general, for folks with Type 1 with adults, it's about 21 percent have depression and about 27 percent of adults with Type 2. So there is that, that difference there. And so depression rates and diabetes rates Can look a lot higher in rural communities. This is actually the [00:06:00] university where I work as faculty at an osteopathic medical school in Athens, Ohio. We also have 2 other locations in Cleveland and Columbus, but as you can imagine, if you know anything about Ohio locations, Athens is in Appalachia, and so what we have is really low education, um, really low SES. We have really high rates of diabetes, really high rates of disability. And unfortunately, not a lot of specialty care providers such that folks who need a specialist often have to go to Columbus or Cincinnati, believe it or not. But despite that depressing statistic and some of that information, I hope you enjoy this beautiful, um, picture from a university. So, this is what depression diabetes looks like as far as I think you can see these linkups of the relationship and how depression [00:07:00] can impact diabetes management. Obviously, if we have, uh, reduced motivation to take care of ourselves, um, including diabetes tasks, like maybe someone isn't going to go get their blood work done, or maybe they're not motivated to, um, make an appointment with their healthcare provider or their healthcare team. Obviously decreased energy, which is a big deal in diabetes because of things like insulin resistance and the need for exercise, but also poor sleep and poor appetite. Believe it or not, we have data showing that if you have a poor night's sleep. The following 24 hours, you're going to see, um, ramifications in your, um, blood sugar. So you will run higher just because your body is not well rested and it's really compensating. Also, of course, as you all know, as psychologists, loss of joy, isolation, hopelessness, and then this also [00:08:00] translates to higher A1C. So all of these things are just really not taking care of oneself and not. You know, being able to put in that really hard work that more than even a full time job that having diabetes is. So I would be remiss if I did not mention disordered eating, and this is not necessarily eating disorders, but instead disordered eating, and diabetes is actually associated with an increased risk of disordered eating. The thing I tell folks when they're not science minded folks or health care trained folks, I say, you know, think about diabetes and how we're saying you should eat so much at this time, you should only eat this type of food. Um, if you. Splurge or cheat and you have a snack, maybe go out for ice cream, you know, things like that, you know, that that builds a lot of guilt and that really promotes from the time you are, you [00:09:00] know, diagnosed up until current date, you know, it can promote a lot of really hard feelings, difficult feelings to process around food and eating. So 20 percent or more of people with diabetes experience these disordered eating habits. We do have some really good measures in diabetes land on how to measure disordered eating, and we find very, very low rates of bulimia and anorexia. Women, of course, as you all know, are more likely to experience disordered eating, and unfortunately, at this time in the research and clinically, we don't have information around disordered eating and eating disorders as far as under the diabetes umbrella regarding people of color and LGBT plus. So we really are struggling, um, to collect that data. As you know, it's hard to get that information even in clinic, let alone from a big study. Um, one of my collaborators is actually working on that right [00:10:00] now, trying to get more people, um, for her study to better understand that behavior in Type 1 diabetes. Okay, so diabetes distress. I'm assuming that some of you have heard about diabetes distress. This is like, in my brain, the big one, like, um, the, the great white, basically, of, um, mental health and diabetes. And the reason I think it's like that is because it largely started as, oops, as an academic term and wasn't, um, assessed for in clinic. So instead we were assessing anxiety, you know, depression, things like that. And believe it or not, when you assess for depression, anxiety, you're often missing symptoms of diabetes or stress. And I'll go into that a little bit more. So first to take a step back, the most common psychosocial challenge in diabetes is diabetes distress. Hands down across the board, no [00:11:00] matter I'm telling you, it's like every research sample I see, every person I talk to, myself included, we've all experienced diabetes distress, and it can be anywhere on the spectrum of mild to severe. So I'm going to give some examples. Diabetes distress can literally be, I feel powerless. My blood sugar is high. And because it feels because of the symptoms of feeling high, sometimes like flu like symptoms can be a severe hyper or severe hyperglycemia, things like that, you know, I can't go for my run today or I can't go pick up my kids from soccer or, you know, I just feel powerless like it's, you know, ruining family dinner, those sorts of thoughts. That's diabetes distress. Which may sound like other things, right? You can see that overlap maybe with some anxiety and how that can be heightened. And I'll talk about that in just a second. But also it can be, I don't want to see my health care provider. They're going to judge me on my blood values, right? They're going to be like, wait, why is [00:12:00] your average blood sugar so high? Or wait, why didn't you wear your continuous glucose monitor last month? I'm missing all this data I could be using for you. And so it's something that a lot of people struggle with. It's just something that's just ingrained in, in the diabetes diagnosis. And, you know, this culture that we live in with diabetes. Yeah. Yeah. So some may experience high levels of distress that then negatively impact their diabetes care. So an example of this, like I said, is not making appointments with your provider. Maybe not, um, checking your blood sugar as often or not, um, you know, ordering your, your prescription on time, not getting your refill on time from the pharmacy, things like that. And of course, that impacts quality of life. It's really, there are people that have made, um, academics that made their whole Um, careers on researching diabetes distress and making measures and scales for diabetes distress specifically for [00:13:00] clinics. We have some really great measures out there, but I will tell you I include diabetes distress as a measure as a questionnaire in every study I do because no matter who I'm talking to, they have felt distress and they know what that distress feels like. And I will say to caregivers also experience diabetes distress. So you can imagine If it's pediatrics related, if you've got a kiddo who's 10 and you're trying to keep a balance of how much insulin to give them and how many snacks to give them and, um, they're running outside for recess playing soccer and their blood sugar drops, that's a lot of distress, right? Um, it's, it can be really frustrating, but like I said, it's kind of the culture of diabetes and I'll talk a little bit about that in just a second. So diabetes distress is really fear, defeat. Oops. Uh, loneliness. It's that frustration, that low motivation. I'm sure you can [00:14:00] all see how that all is like tying in with like anxiety and depression and why there's been like, you know, some fights in the literature about, wait, why don't we just scream for depression? And, you know, things like that. But overall, um, like I said, it happens to every single person with diabetes, and we are seeing that it does happen to caregivers as well. This can also mean if you're caring for someone who's an older adult with diabetes. It can be really frustrating. Um, And you can be fearful and you can feel defeated. Diabetes is a full time job, whether you're caregiving or whether you have it yourself. So I want to talk to you also about, I was talking about like the culture of diabetes and the great technology that we have. We can see for those of us with continuous glucose monitors, I'm sure you've all seen the Dexcom ads at the super bowl and things like that with Nick Jonas. Um, we are, for those of us who can afford it and have an insurance coverage [00:15:00] able to see our blood sugar real time every five minutes on our phone. We can see it. Um, you know, a nice graph where we are, where we're going and we can make decisions on food intake and how much insulin and maybe exercise and all the 42 plus variables. that we have to think about in a day to keep our blood sugar in our target range. And what's important about alarm fatigue is that it does happen. It is real. And many folks who are using devices, insulin pumps, continuous glucose monitors, apps on the phone that they're getting fatigued because It's a constant alarm. And like I said, caregivers, you know, there are many caregivers who follow their children's blood sugar on, um, it's called the follow up so they can just see exactly where their, um, kid's blood sugar is when they're at recess at school, at a friend's house. And there can be a lot of alarm [00:16:00] fatigue and diabetes distress with that. So the thing I always say is technology is great and this innovation is so wonderful. We're out of the dark ages as far as blood sugar goes, but it's not great when you're 3am and you're waking up to really loud beeping and you're just really sleeping really well and then you have to deal with your blood sugar and whether it's low or high or or whatever is going on while you're getting the alarm. So this is just an example of what a Dexcom 24 hour readout looks like. I pulled this from Google Images and what's important to see here is that the gray area is what their target range is. I'm not sure what the numbers are on the side. I'm going to guess and say maybe 70 would be the gray to red area. So if it drops below 70, they get an alarm saying, Hey, you got to eat something. And then if it's between that gray and yellowish [00:17:00] area, that would be in the higher range. And it's like, Hey, you need to think about probably taking more insulin or going for a walk or drinking water, you know, those sorts of diabetes things. And so what's important to think about with diabetes distress and alarm fatigue is every time that it's going in the red or in the yellow, they're getting an alarm. And that can be a loud beep, a loud series of beeps. It can be vibrations. I mean, you can really set it up how you want, but that can be really frustrating and also promote some burnout for folks when they're dealing with a high blood sugar day. And if this is what their everyday daily looks like, as you can imagine, maybe those, those beeps aren't that helpful. And, you know, like I said, might just be promoting, um, some poor behavior habits even. ~Okay, let me see if I can go to the next slide. Sorry about that. Let's see. Well, okay, there we go. I was stuck on the screen. I'm back. ~All right. So, um, regarding diabetes distress. [00:18:00] So, a large amount of people report high levels of diabetes distress. So, like I said before, that high level can be impact in behavior, disease management, all those things. So between 22 and 36 percent, and you may be like, wait a second, Ally, that's a high range. Well, like I said, it's not perfect measurement, and it's from a series of studies, and we're still really figuring out, you know, uh, what these rates look like. But like I said, maybe in certain areas, like maybe in rural Appalachia, where I'm at, you know, maybe we'll have a higher rate of these levels of distress. So women and younger adults are also more likely to report higher levels, so these elevated levels of distress for diabetes. And then it's related to, as I mentioned before, high A1C levels, so out of range, creating distress, increased number of complications. Maybe that's related to A1C being higher, maybe that's related to just [00:19:00] lack of self management around diabetes, but also lower quality of life. It's tough. you know, having a high blood sugar all the time and really feeling, you know, the sick symptoms all the time. So there's also diabetes burnout. So diabetes burnout is really, um, a function of diabetes distress. So those challenges with self management, less self care, maybe they're not changing their insulin pump sites every three days, like they're supposed to, and maybe instead they're changing it once a week. So they're creating scar tissue and things like that. Maybe it's also or I'm sorry. It's also related, um, to a high prevalence of diabetes associated comorbidities and complications. So, for example, comorbidities can be all kinds of things. So, of course, depression, but it can also be celiac, um, [00:20:00] for example, for folks with Type 1 -- 1 in 10 folks with Type 1 have celiac and can't consume gluten, but also as you can think as you go on with these comorbidities and complications, maybe anxiety and other things like that, but also increased healthcare costs. So as you can imagine, maybe these folks are needing more care. Maybe there's needing, you know, more visits with a psychologist. Maybe they're having more emergency room visits, things like that. So one, um, tool that can be really helpful. And one of my colleagues that works in Peds Diabetes, um, at Cleveland Clinic recommends is she recommends a division of responsibilities. So for folks that are like, I just can't change my pump site today, or I can't put on a new Dexcom sensor, or the thought of going to the pharmacy to pick up my insulin prescription [00:21:00] is just, it's too stressful. I can't wait in the drive thru line and I can't deal with it. So instead, it's sharing the burden of those daily diabetes tasks. So be specific and say, okay, um, if I know, maybe if I knew my dad was running out to run an errand, I could say, Hey dad, while you're in town, do you mind picking up my insulin prescription? It's just really stressing me out. And I'd appreciate if I didn't have to go to the pharmacy again. Right. It's important to identify the hardest aspects of diabetes care that other folks can really take on. And a lot of it's time. We have a hard time talking about time in, um, research and in clinical management. It's so hard to say, Oh, I'm doing this many hours a week of diabetes management. When really, like I said, it's a 24 seven 365 job, no vacation, you know, [00:22:00] unfortunately no 401k, right? Like we are, we are stuck doing this management. So it's really important to think about whether it be in Peds care, older adult care, just strictly adults care. What are some things that the, the family can bring in to kind of take some of the weight off that person's shoulders? And that's why I love the division of responsibilities. I will say as an example, I did ask my husband to start picking up my prescriptions from the pharmacy and he told me it stressed him out too. So it's important to still touch base with caregivers and with family members and be like, wait, does this work for you? Cause I mean, sometimes it is a stressful thing. Even the pharmacy for some reason is a stressful thing for many. So, like I said, engaging and problem solving and brainstorming, as I just showed you with that Dexcom sensor data, there's so much data out there for those of us that are plugged in and have all this technology. And even if you're just doing finger sticks, so much data, because then you have to be like, wait, what did I eat a week ago when my blood sugar [00:23:00] was so high? Or, um, wait a second, you know, why did I go low after that walk after dinner? Things like that. If, if there's ways to do this in the best way possible, that's really going to help alleviate diabetes burnout and that burden. But also, um, You know, we recommend enlisting the support from your team. So you're being the, the patient, the person with diabetes, you know, telling these folks need to tell their healthcare providers, obviously what they're going through and what they're dealing with. Otherwise can't possibly know, you know, everything that's, that's going on for them and what those pain points are. And that's part of it too, is working on communication strategies and skills. What works, what doesn't work. Okay, I'm doing really well with this today, but you know, maybe I'm going to struggle with something else tomorrow. Just open communication, especially regarding to this burnout and distress. Something that's important to [00:24:00] know is especially with a team with an endocrinologist, a diabetologist, uh, you know, a primary care physician that really knows their stuff about diabetes. People with diabetes can actually take safe planned breaks from their usual diabetes management, whether that be trying new foods or, you know, maybe engaging a little less and checking blood sugars or, or things like that. But it needs to be planned for it to be the safest way possible and not end up In the emergency room and enabling this freedom can take short planned breaks every now and again. So I know people who are like, I just can't wear an insulin pump right now. I feel like a cyborg like a robot. It's just stressing me out. And I really want to wear, you know, tight dresses or, um, you know, like prom dresses for teens or, you know, I just want to be able to wear a bathing suit and people not see it. You can take those breaks and there's freedom and doing that planned break, but [00:25:00] you still have to be doing the other piece of manually checking blood sugar or, you know, um, injecting insulin with a syringe if you're taking a pump break and things like that. And that can, like I said, all be planned, but it takes the full team to make sure that it's going to go well. Because I think people with diabetes also realize like, Oh, management trying in a different way, shots, you know, these injections or trying different, different ways of taking insulin. And it can actually be really, really good for mental health. So, I didn't realize when I started this research, believe it or not, that I was going to ever be talking about the intersection of diabetes and disability. But suddenly as I was collecting data from, in the, the previous work that I'd done before I came to the, the med school at Ohio University, I was like, wait a second, am I doing health equity research? I was seeing a lot of things about costs. [00:26:00] of insulin. And as I'm sure you've all heard about, I was seeing a lot of things about health policy. And then I started thinking more and being told more about people's experiences of being disabled and having diabetes. And what I heard was pretty alarming. So what's important to know is that As I should have stated at the beginning, diabetes is a huge thing in the United States and globally, so we have about 37 million folks in the United States have diabetes. But what's important to know is in 2020, it was estimated that one in six folks with diabetes also had a disability. This could be cognitive, this could be a mobility disability, there's all kinds of different categories there. But despite this common comorbidity, diabetes education and treatment, it's not readily tailored for disability. So if someone has rheumatoid arthritis and they can't, like, reach to, like, this is how I would make a move to put [00:27:00] a sensor on my arm for my, for my Dexcom, or maybe they've got some shoulder issues like frozen shoulder, which is really common in diabetes. If you can't reach your sites. You're going to have a problem, right, with, with keeping up with your management. And that's literally not talked about. And that's all under the umbrella of diabetes and disability, which is why I get so frustrated about this stuff, but why I'm so glad to talk to you all about it tonight. Um, so you'll learn more as well. So, as I said, this is inaccessible, impacting health outcomes, and led me on a long study of this research, which I just didn't expect to ever be on. So, the prevalence of diabetes retinopathy is huge. It's reported to be 27%. The really cool thing about Diabetes complications regarding eyes, though, is 95 percent of it is preventable, such that if we do early detection, if you're coming in for your yearly eye exam and getting, um, your [00:28:00] retina screened, that's all you need because there's such good treatment on the market. Here's the problem. We have a huge issue with education and with health care and access to, um, eye doctors, optometry and ophthalmology. So it's really hard for people to realize that, um, they need to go in and get care now and get prevention treatment now. I have, have heard stories of people going blind from diabetes and they say, I just thought the issue would resolve itself. They thought the, you know, the, the black dot in the middle of their vision would just stop spreading. And instead it would just like resolve itself one day. And this is very common. Many folks in diabetes, and this is part of diabetes stigma is. Many people are taught when you get diabetes, if you don't take care of yourself, you're going to go blind. And, as I said, it's not necessarily the case. I [00:29:00] myself have eye disease. It doesn't impact my vision yet. Maybe one day it will. But it's all about prevention and duration of diabetes. So blind people, believe it or not, are an elevated rate of diabetes related morbidity and mortality. So this is a bi directional relationship, because then, retinopathy, so, um, having diabetes first, is the leading cause of blindness among US adults. So that's why this is so important, and this is why I spend time talking about this stuff, as my pump is going off. Just a second. So, now you get to hear a pump alarm, as I just talked about diabetes distress. All right, so. One thing to keep in mind is, um, people with diabetes, like I said, are more likely to develop blindness, but I think part of that, and this is the research I've been doing, is because there's a lack of care, um, there's a lack of engagement in healthcare, [00:30:00] and folks just truly don't know where to go to as far as getting their screenings. Okay, so what's important about this, like I said, is stigma, and it really is the elephant in the room. So telling people that are just diagnosed with diabetes they're going to go blind if they don't take care of themselves, that's fear tactics. As you all know from behavioral medicine, we know fear tactics don't work. People still try it, I don't know why, but we know from meta analyses that. Fear tactics don't work, but there's also stigma around diabetes as far as it's because you ate sugar. It's because you don't take care of yourself. Man, I wish it was because I ate all that sugar when I was a kid. I mean, it was, it was unfortunate I was a very healthy eating little kid, but it's one of those things where there's so much stigma around how we as people with diabetes and other folks with blindness handle their whole lives. That's really like you're under the microscope dealing with that. So when I talk about accessibility and making it better for people who are blind [00:31:00] and have diabetes, it's really just the quality of being available. It's really simple and intuitive to engage with. So if I said, hey, so and so, you should think about an insulin pump, or you should think about, you know, using your phone for a CGM, they should be able to just download that app for the CGM and just be able to read exactly what their graph says. You know, but instead that's not what we have. So overall, and this is my little manifesto, my little tirade, but there's a lack of collaboration from pharma and device companies. They think that blind people will have too much information direct quote, by the way, from one of the pump companies to my face, um, and that they can't handle it. So it's a lot of ableism is what this really is. There are workarounds and hacks that are required that are really, really cool. So there's things like voiceover and Siri and all these other things, Alexa, that will read your blood sugar to you and [00:32:00] describe anything that's on your phone. And that's how blind people and low vision folks truly get around in this day and age ~in 2024.~ So why wouldn't diabetes technology companies embrace that? I'm not sure. Bye. I'm still thinking it's ableism, but that's just me. There's also contraindications from FDA. Based in ableism saying you need to be someone who's not hard of hearing and deaf and someone who has, um, you know, corrected to normal vision to be able to use a pump or a CGM, which then means that, you know, we're saying this whole group of folks don't get quality standards of care, gold standard care because of maybe how they were born or, you know, an acquired disability. There's also a lack of tactile buttons, believe it or not, and that's very frustrating. Yeah, especially in the middle of the night when I'm trying to give myself insulin. But for someone who's not sighted, that can make things pretty impossible.[00:33:00] So some recent data from my research. I am such a quotes person. I'm a chatty Cathy. I love small talk. Um, and so when I do qualitative and mixed methods research, I love getting quotes that I can take back to clinicians and I can take to health policy and I can publish on and I want it to be something that people think about later and they go, Oh my gosh, I couldn't believe that, that really made me think about their situation a different way. So here's one of my favorite ones from a study, a focus group study I did, um, in the last couple of years with one of my dear friends. Blindness is more than one person should ever have to deal with. Now I don't get to eat what I love? Some days I don't, I don't know whether it's harder to be blind or diabetic. Put them together. It's a living nightmare. No one gets till they're in it. So this person's talking about how distressful it is for them to be blind and have [00:34:00] diabetes. And I, you know, I don't blame them for feeling this way. They've had a really hard experience and they feel like it's a nightmare. So in an exploratory study, uh, I won't bore you all with a ton of data, I tried to make this pretty, pretty brief, but, um, 33 participants who are blind, um, and had diabetes and managed their diabetes, we wanted to know more about, did they have support from their health care providers, did they experience diabetes distress as someone who, um, is a blind person. Believe it or not, we were the first study, and this shouldn't be the case. This is not a brag. This is like a sad thing. We were the first research team to look at diabetes and, uh, distress in the blind community. And that just shows you the lack of care that's happening here, that this is the most common mental health issue. Persistent condition that impacts behavior [00:35:00] and no one was talking about it. Anyway, enough of that tirade. So participants most frequently believe or not reported barriers to checking blood glucose. So think about, you know, um, getting a little blood on your thumb and then, you know, being a blind person trying to get it on the glucose meter stick. Maintaining a healthy diet, so food preparation and things like that, reading, um, nutrition labels, and then diabetes distress related to the intersection of having blindness and diabetes. So believe it or not, those who mentioned this intersectional diabetes distress tended to be braille illiterate and less likely to use mobility tools that are symbolic of blindness, like using a white cane and also using a guide dog. So this is a huge deal when you think about You know, having autonomy, being able to travel in a group or even by oneself, like using sidewalk, you know, being in an urban area, things like that. [00:36:00] In another study, we had 42 participants in focus groups and most reported interactions with their HCPs where they were treated as incompetent. This is pretty common in the literature, this incompetency piece, um, due to disability. And so. Uh, folks also discussed how they perceived, um, evaluations of warmth and competence and how that impacted whether their health care providers trusted them and respected them. So, as you can see, there's a whole dynamic here. There's a really good paper from a couple years ago that was in Health Affairs from Iazoni and she talks about, well, it was a study where health care providers talked about, You know, they would rather not have disabled patients, and a lot of us in the disability community were like, wait a second, what? And, you know, it had never been so, um, bluntly stated before. And so this [00:37:00] was a major. Major big deal, and I can send that study out as well, if anyone's interested, but anyway, so participants discussed or discussed their evaluations of their health care providers warmth and confidence. And then they felt like, if they were viewed as incompetent, then they weren't trusted and respected. They didn't get as much out of their appointment, which, as you can imagine, we, you know, for the traditional health care provider appointment being a couple minutes. That can be really frustrating for someone. Okay. So my latest study, and then it will be question time. My latest study, we have, um, diabetes, blindness, and technology. I'm a big, if you can't tell by now technology advocate, it really changed my life. And I feel like it could change so many other people's lives if we just get it to be more accessible and promote that health equity. So, as I said, [00:38:00] You know, insulin pumps and continuous glucose monitors and some of these diabetes monitoring apps are not accessible and, um. Just say, you know, using these devices, the uptake, the utilization, it's impacted by income, insurance coverage, you know, an insulin pump can cost as much as a used car. And it's often constrained by these financial limitations experienced by families because, you know, everything is so expensive. So participants completed a survey about their diabetes management, their medication technology usage, and if they use blindness and low vision technology. So, like I said, voiceover, Siri, Alexa, things like that. We had 182 participants and a little over half of the sample was female. We A1C of about 6.8, which is seen as in target range as it's below 7. And. Ethnicity, I didn't realize I would become [00:39:00] an ethnicity researcher. I was just out here doing some equity work talking about costs. And then all of a sudden, ~excuse me, let me get a drink. Just going to my time right here.~ ~Anyway,~ we saw ethnicity was correlated with a greater frequency of using blindness assistive technology and a lower likelihood of braille usage. This is a huge deal when it comes to autonomy and when it comes to, um, what many blind people are trying to do, which is truly be able to not be seen as a burden. They do not want to feel that way. A1C was correlated with frequency, so A1C being average blood glucose, sorry I should have mentioned that, was um, correlated with the rate of blindness related assistive technology, using a white cane, and having a guide dog. This is huge, and probably also goes back to that diabetes stress we were talking about. So just, one [00:40:00] thing I love to do is I always love to quote my friend Lisa Golden, who is a diabetes care and education specialist. Um, in Texas, and her whole specialty is working with blind folks. She's amazing. I don't know where this is coming from. Sorry about that, guys. And she states, workarounds are not accessibility. So, yes, we've got voiceover, we've got magnifying glasses, we've got Alexa, we've got Siri, but what if that insulin pump and what if that CGM just came to us accessible? What if you didn't have to download an additional app to get it to work and use a bunch of hacks? So there's a lot of tools to improve diabetes care in clinic and at home. Please feel free to think about these and share these with anyone that might be able to use these. Most of these are apps that you can just download on your phone. Be My Eyes is free. Ira is not free. [00:41:00] But what I will say is you can use Be My Eyes or be a volunteer. If you're excited for Be My Eyes and someone might be at the grocery store and they're just trying to pick out the right Type of milk and they're like, Hey, I'm really trying to find oat milk for my lattes and you can be that person who tells them which milk it is Accessible Pharmacy is also fantastic. ~Um, just a second. I'm going to cough. This is just keeps ~ ~happening. I blame allergies.~ Speaker 4: ~Wow. Anyway, ~so Accessible Pharmacy is amazing and they have, um. 1 of the CEOs. Oh, my gosh. I'm so sorry. It's like an allergy fit too. One of the CEOs is blind and he came forward and said, hey, pharmacist friend. We need to make an accessible pharmacy for folks, so it has Braille. It has, like, there's an app, so it will read the prescription to you. It's a fantastic place and it's. It's just incredible. Highly recommend. Okay, let's see if I'm stuck on this slide. [00:42:00] Excuse me. There's also support from the National Federation of the Blind and the American Council of the Blind. They have the Diabetes Action Network, where believe it or not, you can actually go blind, low vision, sighted. They welcome all and say, Hey, just come talk to us about hacks you've had with diabetes and what's working for you. And they're all about education and also have incredibly supportive listservs. Where they will test out the new devices, the new tech on the market and let people know if it's accessible. So tips for working with people with blind patients, and then I think I'm at the end of my talk after all that coughing fit. So always address the person directly always hand documents to the person directly. Introduce yourself by name and role. So when I see my blind friends, I always announce like, Hey, it's Ally. How are you? It's good to see you. Things like that. If you're in clinic, you can say, I would say, Hi, [00:43:00] I'm Dr. Ally Hughes. I'm here today for your appointment. I'm your psychologist. You want to ask if a person would like your help. There's sometimes there's just certain rooms that are truly inaccessible. And it's just hard to get the person, you know, going in the right direction. So sometimes I know people, um, I was just on Capitol Hill last week with, um, one of the blindness advocacy groups. And one of our folks didn't have any vision, um, blindness is a spectrum and she had no vision, no light perception, anything. And she preferred to just hold onto my hand. So we just walked through Capitol Hill and all the buildings with her holding onto my arm. And that's what worked for her, but other people hate stuff like that. And they would just prefer to use a cane. All right, so don't ever grab or touch someone without permission, just common consent things. Don't make assumptions about what a person knows or understands based on their disability. There's a lot of stigma, um, or there's a lot of stereotypes saying like, oh because you're blind you also [00:44:00] have cognitive deficits, and obviously it's not the case. It's just an awful thing that society puts on people. I recommend giving specific directions. Sometimes I'm really good at this and sometimes I'm really bad at it, but sometimes it's just saying there's a chair three feet behind you or there's a chair to your left or the door is right in front of you if you walk one step forward. It's also educate yourself about sighted guides. So as I said, you know, being able to give directions and things. Once you practice, you'll be an expert at it and it's okay not to know something about diabetes and blindness. That's why I'm part of these listserv groups. They teach me before any news outlet will, or any clinician will. They know exactly what they're doing. And one thing I will say too, is don't make assumptions about health behaviors. There's a lot of. Um, uh, in the disability community, there's a lot of, you know, judgment about and saying like, oh, you're disabled, you're not having sex and you're [00:45:00] not doing illicit drugs or smoking or drinking or anything like that. And that's actually not the case, you know, so it's important to still screen for those behaviors. But also don't assume that they have a caregiver who's managing their diabetes. This is like a huge one where just some folks just need the social support. We all with diabetes need social support and to meet other folks like us. So these are the resources I recommend. Um, the person on the left is the most, one of my favorite people in the whole world. Her name is Alice Wong, and she wrote Disability Visibility and a few other books. You're the Tiger. She is disabled, an incredible strong advocate. I also recommend as the second book I would recommend is Demystifying Disability by Emily Laddow. She is also in a wheelchair. for your time. And this is broken down where it's almost like a fourth or fifth grade reading level. And it's just a nice, almost like picking up a magazine, a nice read on how you [00:46:00] can, you know, better yourself as far as how you're talking people with disabilities. And then the third one from this list that I would strongly recommend is by Judith human. And I'm still really upset that I didn't get to meet her before she passed away, but it's called being human. And she's one of the people that actually came forward and put in place um, 504 plans. Um, uh, protecting them, uh, education for disabled folks through the federal government and then also, uh, ADA protections. So, truly an amazing human. There's also podcasts and YouTube channels. These are all, none of them are diabetes and blindness, but separately diabetes and separately blindness. Some of them are YouTube, some of them are podcasts. Highly recommend these, um, especially Juicebox Podcasts. They bring on a lot of clinicians. Um, Because they're giving health advice, so it's, it's pretty darn good. And then also the ADA, the American Diabetes Association, has a directory of diabetes specialized [00:47:00] therapists. So if you ever feel like you're outside the norm and you're like, wait a second, um, who should I get some, um, advice from for this? Is there anybody that can help me with this? That directory is pretty darn good. Okay, thank you all for putting up with my coughing fit and letting me talk about one of my favorite topics tonight on this Friday evening. And I am ready for some questions. Meghan Beier, PhD: Thank you so much for this presentation. That was really excellent and so many good resources that I think we can use clinically. Um, Allyson Hughes, PhD: I'm happy to I'll I'll send it to you, Meghan, if you can share it with everyone. Yeah, please feel free to use it. It's just kind of some of it's kind of like Yeah, of course, I know that stuff and other stuff's like, wait a second, I gotta go back and review that and think about that some more so highly recommend those books and the podcast. They're really good. Meghan Beier, PhD: Yeah, we'd love that. Thank you. Guest 1: ~Go ahead, Courtney. Um, ~thank you, first of all, um, [00:48:00] the resources, the podcast, I didn't get to take a screenshot or jot down, but it was juice box, something. Um, Diabetes, the diabetes focused podcast. Yeah. Allyson Hughes, PhD: So, um, let me see if I can go back. Sorry, my PowerPoint is being a little slow. So the juice box podcast, this is probably the top podcast in the world for diabetes. It's pretty fantastic. And, um, really. A really great resource for people with diabetes caregivers clinicians. It's just like this guy. Um, he is a parent of a kiddo with type 1 and he just gets it. And he made a great podcast about it. Guest 1: Awesome. Thank you for going back. Um, I do have a few patients who are managing type 1 diabetes. So, um, I have a patient who was [00:49:00] also more recently diagnosed with ~stage 4 colorectal~ cancer. ~And so there are some crossovers in terms of Christian ~and what I was wondering is, and I thinking about, um, diabetes distress and and some of the burnout, it may be one of those additional things that aren't necessarily recommended. But what are your thoughts on recommendations for nutrition professionals? Do you recommend that? Do you not recommend that? Um, for individuals who are struggling to manage, so there, there's a set of needs for managing cancer and, and some of the, excuse me, some of the markers and some of the general physical health around cancer and cancer treatment. And then there's diabetes, right? And staying within the ranges and staying in the green, which is her graph. Um, anyway, long question, but would you recommend and what are your thoughts on. Allyson Hughes, PhD: Yeah, I think, I think it's hard because cancer [00:50:00] is really like this uncharted territory. And I think about it when people experience it. Um, There's a lot to unpack there and then when diabetes is already on board, that's even more to unpack of like, wait a second, should I be doing this? And what does this look like? I think nutritional support is fantastic, but I will say that, I know, um, I know of at least one person, um, at Society Behavioral Medicine that her expertise is in diabetes and cancer, so, um, I can connect you with her if you'd like. I would actually like that. Yes. Yeah. Yeah, I can definitely do that. And I will need to track her email down, but I will go ahead and and send that to you for sure. Guest 1: Okay, wonderful, because on one hand, she's got the fear tactics coming at her. Yeah. And there's this kind of lack of. Um, importance really placed on on nutrition and so there it [00:51:00] creates this kind of confusion, even though there's. Was the need for, um, for to stay within a certain range for protein intakes and it was the need for other things. And so just, um, if there's a resource, I would like to be able to direct her towards it. Speaker 4: Yeah, no problem. I will definitely connect that person because she was a couple of years ago she was collecting qualitative data to better understand what that looked like in that community. So I'm sure she'll have some great pieces for you. I think she's also in a med school. So I'll send that info. Okay, great. Thank you. Guest 1: Yeah. Thank you for your presentation. Allyson Hughes, PhD: Yeah, of course. I mean, one thing I will say too, is I think it's also when thinking about medical recommendations, even as far as fasting, like we know people with diabetes struggle with even fasting for, um, you know, getting blood drawn and things like that. So, um, you know, fasting for a colonoscopy, fasting for [00:52:00] surgery, all of that stuff that goes into it. There's So much to unpack there around nutrition, which is why I try to bring up disordered eating, like diabetes is complicated, you know, and, um, so I get to be under this little umbrella of diabetes and disability, but it's just such a big, huge thing. And then when you introduce cancer, it just like, I think that's just another kind of like a landmine that you have to navigate, you know, indeed. ~Yeah. Thank you. Thanks, Courtney. Yeah. I ~ Guest 2: I have a question. First of all, thank you so much for this presentation. Also, just letting us in on your personal journey. It makes it even more relevant and I got to really try on this idea of diabetes, diabetic stress. One thing, one question I have about blindness, is it a fluctuating progression or is it continuous and progressive, meaning like [00:53:00] does it, does it slowly get worse over time, or will it get worse and then stay that way, maybe a little better, and then, what happens then? Allyson Hughes, PhD: Yeah, so it's different, um, per disease state. So, um, for some folks, maybe they have vision in one eye and then don't have vision or another. Um, when I was on Capitol Hill last week with prevent blindness, one of the young folks that was with us. Um, she had glaucoma in her twenties and was losing her vision actively and not due to diabetes or anything else. Just, you know, um, congenital and so everybody's different. But like I said, it's a spectrum. So there's like low vision where maybe someone just needs, you know, to really magnify their screen, you know, really zoom in or, you know, Um, use glasses like that are, you know, like those thick glasses that are high prescription. Um, but then there's also folks that only see [00:54:00] shades of light and, um, or maybe like, kind of like glitter. Um, Molly Burke, who is at the top on the screen, she is blind and an amazing blindness advocate. And she talks about her vision and she talks about, I can kind of see glittery things. And that's it. She lost it when she was a kiddo. So not related to diabetes or anything, just, you know, um, inherited. So everybody's vision journey is different. And I think that's why it's important to listen to these podcasts as well, because people will describe to you what they can see and what they can't see. It's very rare that I've met someone who has completely lost their vision. I mean, at this point, I've met just a handful of people, but for a lot of people, you know, they, they will have at least a little bit of vision. But as you can imagine, once you're using an app or, you know, trying to navigate one of those awful mazes in a hospital, those hallways that all look the same, same [00:55:00] color, hate it, you know, things like that. It's, that's when it becomes really difficult of like, wait, what did I miss? Right. And that's that distress and anxiety. So everybody's different. And that's why I highly recommend listening to some of these podcasts, because they interview people who are losing their vision or who, or who have lost it and what they're specifically going through. And it's really important to understand that, that perspective. But like I said, in diabetes land, it's important, um, to do prevention. And by that I mean, um, getting yearly eye exams, and then once you flag for retinopathy or macular edema or anything else, then maybe you're going more, you're getting treatment, things like that, and it can, some of it can be, like I said, prevented, but you have to catch it at the right time. Guest 2: Thank you so much. Again, thank you for your presentation. Allyson Hughes, PhD: Yeah, thank you. I'm glad you're here. Any other questions? Got a little bit of [00:56:00] time left. We got like a minute. Meghan Beier, PhD: Um, is there any resources or organizations that you direct people to, um, for learning to manage diabetes if they're new to it? Or do individuals mainly get that from their care team? Allyson Hughes, PhD: So folks usually get it from their care team. And then many people will go to Facebook, um, diabetes groups, which can be really helpful and share a lot of these podcasts, resources and, um, articles and things like that. Um, and then. There's also Twitter. There's, we call it the Diabetes Online Community where most of it's just information being shared. And it's fantastic. Um, because sometimes someone's saying, Hey, I've got this weird rash from my CGM sensor. Do I need to call my doc? You know, and, um, what should I do about it? So sometimes it's like deciding even whether to go to the emergency room. But then as far as diabetes and [00:57:00] blindness, that's where I come in and I'm, You know, in talks right now with National Orgs to create these resources, because at this point, we just don't have anything that's tailored that's easily able to be found. So like I said, I'm pretty upset about that. So I'm trying to make that change. Meghan Beier, PhD: Thank you so much. I know that many of the people on the call are going to have to hop off for therapy visits, but we really truly appreciate you giving this presentation. There were so many great resources and it was very informative and thank you for your time. Allyson Hughes, PhD: Thank you. Thank you all so much. Have a great holiday weekend. ~ Have a great holiday weekend.~ ~You too. ~ Speaker 4: ~Thank you.~ Conclusion --- Meghan Beier, PhD (2): If you like our show, please like subscribe or leave a review. This helps others find out about us. Find Empathy provides continuing education. If you would like to learn more about our courses, please click the link in the show notes or visit learn.findempathy.com. While our education is free, for example, like listening to this [00:58:00] podcast, the proceeds we receive from continuing education goes to support the maintenance of our website and the development of new content. Finally, please know that the opinions expressed by the experts today are their own. We are not financially supported by any of the businesses or resources described in today's podcast. Additionally, any advertising that is published on the episode is chosen by our podcast hosting service and not by Find Empathy. 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