Challenges of Self-Managing HIV and Diabetes

Segment Description: Julie Zuñiga, PhD, RN, assistant professor at The University of Texas at Austin, shares findings from her research on self-management of the dual diagnosis of HIV and diabetes.

Contagion®: What challenges are involved with a dual diagnosis of HIV and type 2 diabetes and what barriers currently exist for self-management of these conditions?

Zuñiga: The challenges and barriers for dual diagnosis for HIV are that you have to take way more medications when you have a second diagnosis, and there's a lot of dietary changes that need to be made on top of that. So, you're having to take on more skills and more doctor's appointments with this new diagnosis.

Plus, exercise and food are some big changes that are hard for people to make. Our participants in this study, they talked a lot about that they went to a dietitian, but that they weren't really able to make any of the changes that they suggested, or they thought the changes were silly.

We did a lot of these interviews in their homes. And so we could tell that their answers didn't always match the surroundings. They would talk about having a healthy, small lunch and a healthy small breakfast, but we could see giant boxes of sugary cereals and sodas and candy out, you know a lot of people just have candy sitting out, for guests or for themselves.

Food is comforting to people so having to change food is difficult and the additional appointments, is difficult. Plus, with diabetes, you have to start testing your blood sugar more and most of the participants weren't quite willing to do that just yet.

Contagion®: Can you walk me through how your study was conducted and what the key findings were?

Zuñiga: This study was conducted using a mixed method theory, where we used quantitative and qualitative put together so that we could see if what we're finding quantitatively still has the patient's voice inside of it. And we found out pretty quickly, we were testing a model of self-management to see if we could predict who was more likely to adhere to treatment and to self-manage their dual diagnosis. But the model didn't work for people who had two conditions. If you have HIV or you have diabetes, the model works perfectly, we can we can help you adhere and to manage your conditions.

But if you have two conditions, the model no longer works. And there's other factors that are involved in your self-management. We did 22 qualitative interviews, open ended questions. And we asked about different parts of self management.

And the key findings would be, which is not the most outstanding finding, but it's that social determinants of health are the most important things to this population. If they don't have housing, transportation, there's a lot of depression, and a lot of the participants experienced intimate partner violence in the past and currently.

So there's a lot of other issues that we don't normally study in our research, we usually just stick with did you exercise? How are you eating? We actually need to look beyond that and figure out, do you have stable housing, most of the participants did not have stable housing.

People who have HIV and diabetes are experiencing syndemic, which means two epidemics happening on top of each other, two conditions in the same population. Who they are is actually putting them at risk for both of the conditions. The underlying social issues are what's the major problem, so racism, genderism, sexism, poverty, all of these are problems that have the end results of having these two conditions.

Contagion®: What was really interesting was the note about how glucose monitoring may be linked fear of exposing their blood to others. How do we overcome fears like that?

Zuñiga: One of the big findings was that the people who have HIV and diabetes didn't like their blood exposed to other people. When they would test for glucose they were worried about how other people would be perceiving that and they didn't want their blood exposed to other people.

We’re not going to be able to get around not testing blood glucose, we need people testing their glucose. That's the best way to control what you're eating and how you're managing your insulin. I think the best way to embrace it is fighting stigma, not just in the population of people who have HIV, but the rest of us realizing that HIV is not a hardy virus, and that if you did a pinprick, no one would get HIV from a pinprick. And so stigma was, is going to be the best way to combat this.

But the interesting thing for this person who we talked to in the study was this person didn't want to ever test at work. And he had to work from home so that he could manage his diabetes better. And you're further isolating yourself by putting yourself away from all that, from other people. You're being isolated because of this whole blood issue, and many of the participants talked about dirty blood or bad blood, and none of our blood is dirty, none of our blood is bad. Our blood is blood, even if it has a virus in it. We all have viruses in our bloods probably right now. I think that would be the one way to think about that this is, for us to reduce stigma in the condition.

Contagion®: Are there plans for future research on this topic?

Zuñiga: The plans for future research, there's so many ideas and so many things that we need to embrace. One of the things that I'm super interested in is symptoms. People who have HIV and diabetes together report higher symptoms, but they report them as less burdensome, but when we asked them about their symptoms, when we prompt them, they told us lots and lots of symptoms way more than they were reporting on a regular scale.

So we asked about, well, how often are you depressed? It would be they were depressed all the time. And how often do you have diarrhea, they had diarrhea several times a week from different medications. Or they wouldn't talk about pain. But when we asked them about your feet or neuropathy, almost everyone experienced neuropathy and had changed their lifestyle due to the symptoms.

And so I think developing a better measure for symptom burden in someone who experiences really high levels of symptoms would give them more accurate picture and help us be able better treat them and improve their health outcomes, if we know how bad they really are, because people get used to having a lot of pain and so you normalize it in your own life. So that will be one of them.

Another one is building a new model and testing new models to see what is actually important and how can we actually help people improve their self-management and it's probably not just person based. It has to be community and providers and healthcare systems. We can't put it all on a person, that just isn't going to be feasible and it isn't going to work. We all have to be in it together helping the whole community be healthier.