“I think as researchers we need to do a better job of recruiting people that don't fit the usual demographic and actually represent the population.”
Dr. Hughes talks to us about the intersection of behavioral medicine and diabetes treatment: in other words, the psychosocial challenges of diabetes management.
Ally is an Assistant Professor at Ohio University Heritage College of Osteopathic Medicine, Department of Primary Care. She is passionate about health policy. Her research in diabetes focuses on the psychosocial challenges of self-management including health equity, severe hypoglycemia, diabetes distress, diabetes complications, and disability.
Shireen: Dr. Allyson Hughes talks to us about the intersection of behavioral medicine and diabetes treatment. In other words, the psychosocial challenges of diabetes management.
Podcasting from Dallas, Texas, I am Shireen. And this is a Yumlish Podcast.
Yumlish is working to empower you to take charge of your health through diet and exercise and reduce the risk of chronic conditions like type two diabetes and heart disease. We hope to share a unique perspective and a culturally relevant approach to managing these chronic conditions with you each week.
Dr. Allyson Hughes is an assistant professor at Ohio University Heritage College of Osteopathic Medicine, Department of Primary Care. She is passionate about health policy and her research in diabetes focuses on the psychosocial challenges of self-management, including health equity, severe hypoglycemia, diabetes distress, diabetes complications, and disability.
Welcome Dr. Hughes.
Allyson: Thanks, Shireen. Thanks so much for having me.
Shireen: An absolute pleasure. So, Dr. Hughes, tell us a little bit more about why you became a psychologist and how you became interested in behavioral medicine and then diabetes in particular relationship to that.
Allyson: Yeah, so I really feel like I almost didn't have a choice.
I was just so drawn to it. I was diagnosed when I was seven years old. About 26 years ago, with type one diabetes. And I lived in a really rural area and a very low-income area with not many resources, not only for adults, but also in pediatric clinics. The experts just weren't there for diabetes and chronic disease and kids in general.
So, we had to travel a very long distance in order to get my care. And also, we were on assistance in order to afford my care. And for me that really drove me to think more about it as I got older. Okay. Uh, how does this work for other people with diabetes? How does this work for other people? You know, that may have more resources than we do.
And from that point on, I really thought about, well, do I want to be a pharmacist? Do I want to be a nurse? Do I want to think more about being a counselor? I was so fascinated by all these other parts of what I could be doing to what I saw as fixing a problem, fixing a gap in diabetes. And then I came across data science and research and psychology, and I just fell in love and knew that I wanted to, you know, not only have contact with people with diabetes, but promote their voices. And by doing that impacts health policy.
Shireen: Love that. And what is behavioral medicine and what exactly does psychosocial mean?
Allyson: Yeah. So those are two umbrella terms that I throw around a lot in my work. So behavioral medicine is this really cool term where it's about using behavioral techniques.
That can improve behavior and, in my world, improve diabetes care. So, something to think about is mindfulness or yoga. This is one of my favorite examples, because I use this as well, um, in my own personal and professional work. And so, with mindfulness, that might be, you know, kind of trying to transport yourself and take time before a doctor's appointment to just relax lower your blood pressure, you know, before the white coat syndrome kicks in and just take a little bit of that worry or concern or even fear you might have around your doctor's appointment.
So, for people with diabetes, they experience a lot of distress, which I'll always be going on about, I think in my career, because stress is such a huge thing for people with diabetes. And as far as psychosocial goes, I will say that, like I said, a big umbrella term, but that's really about the environment and also the impact of the environment on behavior.
On you as a person, your own personal behaviors. So, this can be social support. This can be your family, your friends, things like that. And I always think about social support when it comes to chronic disease management and specifically diabetes, because it takes a village. It takes a team not only in the clinic, but also outside of the clinic.
You know, for me, most of my social support is online. I found it in the diabetes online community. But it can also be found professionally if you're lucky can also be found personally, you know, in vivo in person everybody's different.
Shireen: Can you tell us exactly how behavioral medicine interacts with diabetes management?
Allyson: Yeah. So, this is a major question. Sure. So, this is one of those where I could go on for hours about this, but, uh, behavioral medicine and diabetes management really go hand in hand with diabetes. Unfortunately, for those who are listening and know someone with diabetes or they themselves have diabetes know it's a 24/7 job.
And unfortunately, there's no vacation time. There's no benefit. And when not collecting any retirement, you know, we're just here doing the thing. And so, because of that nature, diabetes, we are always having to be, you know, on, so there's never a step away of vacation from it. And so, things that can impact your diabetes management include like sleep.
You know, it could be maybe a got into, you know, an argument with your spouse or, you know, maybe even you got a stressful medical. Or maybe you got sick from your kids going to daycare or something like that. All those things can impact diabetes management. And so, in my neck of the woods and in my diabetes research, I'm always thinking about how that social, that psychosocial is combined in that. So, one of the projects that I did in the last couple of years was kind of looking at the impact of daily life. So how does diabetes impact your daily life? Is it something that's, you know, you can put on the back burner, is it something that's impacting your major life decisions?
And we found that people were, you know, reporting sacrifices related to not only employment, and travel finances as to be expected. I mean, we know diabetes is very expensive, but also education and recreational activities. People reported that they chose their career specifically, maybe as a state employee where they would have really good insurance in their opinion and lower copays instead of following a different career that they may be more passionate about because they wanted to be able to afford their diabetes supplies and specifically their insulin.
There's also work in school disruptions just time in general is very taxing. And, you know, this is, this was a study with adults. I mean, we've also seen this with caregivers. So, of, you know, parents of kids with diabetes, we see all kinds of time management issues. In fact, to my research, when I try to interview parents of kids with diabetes, it's always getting interrupted by checking blood sugar, you know, maybe getting a call from the nurse at school.
You know, it's, it's hard to do those interviews because. They come first as they should. I don't, I don't want to interrupt that time, but it's, it's a really interesting, interesting dynamic to see.
Shireen: That is so interesting that you're following us so closely. What are some of the more common psychosocial challenges of diabetes management in your field and what are some of the ways you addressed these issues?
Allyson: Yeah, so there are so many psychosocial challenges and diabetes, but if I had to pick the top ones that I see personally, no matter what my research question is, no matter who I'm talking to, I would say number one, diabetes distress, I would say number two, cost, third, probably education, and then fourth, probably lack of social support.
So, I'm going to talk about diabetes stress with you Shireen because it's the most common psychosocial issue that people with diabetes encounter and it can be fears, concerns, worries. That's all about the daily diabetes experience. So, for example, it could be I'm distressed about going to my doctor's appointment because I know the last time I left that appointment, I felt really bad about what I was doing on the daily with my diabetes.
And it's not necessarily that the provider is passing judgment. You know, they could be really happy and upbeat about. It could just be it's the way the person themselves feels. So, um, all people with diabetes will experience a level of distress of diabetes distress. Specifically. It may be a major hindrance.
It may be something minor that they can just kind of, you know, go on about their day and it won't impact their behavior, but it can be about family social support. It can be about, you know, all kinds of things. And, and it's tough because this is just part of diabetes, is this huge mental health part that isn't always addressed in clinic.
And I think should definitely be addressed more. It's also important to know that high levels of distress actually impact quality of life and hinders diabetes self-care so it's this kind of really terrible bi-directional thing. Um, we also talk about bi-directional thing of relationship of, you know, depression, anxiety, or, and diabetes, like what came first, the chicken or the egg.
And we do see it exemplified, of course when diabetes exists, they're like, it's your most likely, like I said, you're going to get diagnosed with anxiety disorders when you have diabetes, distress is just much more likely, and that's really tough when it comes to diabetes management, because you're already thinking, imagine you're already thinking about numbers all day and food.
Probably the cost and, you know, and then also just other normal human things, like your job and family things. And so, it can be really, really tough. So that's one thing I've been really passionate about is thinking about. What that looks like with diabetes distress and what we can do to lower. It there's so many, I mean, there's so many researchers and clinicians who are currently thinking about this and have been working on this for a couple of decades.
And so, in general, I think we need to just make sure that we think about, I think the action point action bullet point is really what can we do to reduce the distress? We know the distress is going to happen, but how can we reduce it.
And one thing that I think I would be doing a disservice to the community if I didn't mention is really the cost of diabetes and the cost of insulin. We know since the time I was diagnosed, um, the cost of insulin, same insulin I've been using since I was diagnosed as a kid at seven has gone up the price about 1200%. And so, there's no regulation and it's really frustrating from a health policy perspective.
When we have insulin rationing deaths of people that just didn't have resources and potentially know, hey, I just need to ask for help. And so, for me, I find that as a major focus is this mental health perspective and this reducing distress perspective, because if we can lower cost, if we can improve education, I think they all feed into each other and help quality of life.
Shireen: Speaking of some of the research that you talked about, how do you work with other researchers to help with diabetes?
Allyson: Yeah, so I collaborate with national diabetes organizations, research organizations. I also work with companies and make sure that we are prioritizing the voices of people with diabetes.
I think it's so easy to get opinions that could be one sided. And maybe not representative as far as diversity. And then, you know, this hurts equity. I think in general, my goal at this point is to make sure that at this point I can step up and say, well, why don't they have a seat at the table? You know, people of color, people with lower SES, we consistently find that our online research is like 95% white and women and well educated and high SES. And at the end of the day, what's that tell you, it just tells you about that group. And we know that there are so many people out there where that's not that doesn't describe the demographic. And so, I think as researchers we need to do a better job of recruiting people that don't fit the usual demographic and actually represent the population.
And that's harder than it sounds, but you know, that's something I'm proud to be working on behind the scenes and just thinking through that more thoroughly. But, you know, I know that my research collaborators and I are working on that as much as we can, but we're also working on health policy from a local and federal level, how can we impact Medicare policies and how they don't necessarily promote diabetes management, like as it's prescribed because of getting delayed supplies and things like that at a recent study about that, but also locally, like how can we, you know, in my little neck of the woods of Aplasia where there's a lot of low income, you know, a longer duration to getting your diabetes diagnosis, things like that.
How can I in my local community impact that and lower that distress as well. And so that's, that's kind of where my brain is right now of, you know, there's so many levels of policy to impact kind of where do I start first? And so that's been something great that I've been looking to, you know, mentors in the field that have health policy experience or teaching me that it can be difficult, but very worthwhile.
Shireen: Where do you hope to see progress in the area of treating psychosocial challenges of diabetes management in the future?
Allyson: So, in a perfect world, I think we would be better about referring people with diabetes to mental health counselors. I know we've all been there where we've done screeners, like sitting in the waiting room.
And I've had it before as a patient where I don't get through the screener. My waiting time is too short. And so, I think we need to just be better about screening. You know, there's got to be a better way for us to do this. There has, so we're not losing people that, you know, need mental health care immediately.
So, I would hope there wouldn't be a delay to get people with diabetes to mental health resources. In my perfect world. As I said, I would have it where clinics would have embedded mental health counselors, or they could literally walk you two doors down and say, here is our onsite counselor. I'd love for you to talk to them and get an appointment set up, you know, that's to me, I think we need that well-rounded care.
There's some really good research on how that care looks in endocrinology for people with diabetes and I wish that that's really what we could be doing. But at the same time, I think what we need to be doing is removing the barriers of psychosocial barriers, I was talking about better education, not just a diagnosis, but across the lifespan and recent work that I've done with emergency glucagon usage.
We know that people get training on it when they're diagnosed and then. You know, maybe they don't need it for 10 years and maybe they don't need it for 20 years. So, by the time they do need to use the glucagon, or their family needs to use the glucagon for them, they don't remember how to use it and that's hugely problematic.
So, I think it really comes down to removing the psychosocial barriers. And I think the one that I find to be the most distressing now is cost because there's really no reason to continue on the current path that we're on with US health care to have this cost and not have price caps, not just copay caps, which only help people that are insured, but also price caps that will help people who are uninsured and really need it the most in that middle area.
So, with that, Dr. Hughes, we are toward the end of the episode at this point, how can our listeners connect with you and learn more about your work?
Allyson: Yeah, I would love for anyone to connect with me on Twitter @AllysonSHughes, A L L Y S O N S Hughes. And, uh, feel free to email me as well. If you have any, um, thoughts, I love hearing more from the community and there's always things that I miss.
And so, it's, I, I view every member of the community as a stakeholder. So, by all means, send me an email at ASUOhio.edu.
Shireen: And do you have any recommendations for our listeners before we let you go?
Allyson: Yeah. I have two books that I really want to recommend and, uh, they're definitely two of my favorites. One is Bright Spots and Landmines, The Diabetes Guide.
I wish someone had handed me. It's great for beginners, but also for people who've been in this for a couple of decades like me and, uh, offer some really great examples also involving CGM Diet exercise so highly recommend. And then also Think Like a Pancreas is a fantastic book that involves a lot about diabetes technology, but really about testing basal rates and really great for people who are on insulin.
Shireen: Perfect. Thank you so much for sharing. And with that to our listeners. After this episode, head over to our social media and answer this quick question under this podcast post, have you ever experienced or seen a loved one experience, a health challenge that affected their mental health? So again, find us on Facebook or on Instagram @Yumlish_ and answer this question.
Have you ever experienced or seen a loved one, experienced a health challenge that affected their mental health? We will see you there after the episode and with that Dr. Hughes, thank you so very much for your time on the podcast episode today.
Allyson: Thanks, Shireen.
Shireen: Thank you for listening to the Yumlish Podcast. Make sure to follow us on social media @Yumlish_ on Instagram and Twitter and @Yumlish on Facebook and LinkedIn for tips about managing your diabetes and other chronic conditions, and to chat and connect with us about your journey and perspective.
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