Self-management of the dual diagnosis of HIV and diabetes during COVID-19: a qualitative study

Abstract

The purpose of this qualitative secondary analysis research is to describe the impact of the COVID-19 pandemic on self-management behaviors and practices for people living with the dual diagnoses of HIV and T2DM and to identify early pandemic-specific disruptions or changes to their self-management practices. In-depth interviews conducted in May-June 2020 with nine participants, and analyzed using content analysis, revealed five themes: Adjusting to living with HIV and diabetes impacts beliefs about COVID-19 risks; COVID-19 information-seeking and accuracy; Trade-offs in self-managing multiple chronic conditions; Balance between safety, relationships, and the society at large; and Discordant perceptions and actions. Some participants were resilient from previous experiences. Many received mixed messages about their risk for COVID-19, resulting in inaccurately or inconsistently applying guidelines for social isolation.

SARS CoV-2, the virus that causes coronavirus disease (COVID-19), was classified as a pandemic by the World Health Organization on March 11, 2020.¹ As of October 1, 2021, in Texas, there were over 4 million confirmed COVID-19 cases and 65,191 deaths due to COVID-19.² In Travis County, where the present study was conducted, there have been over 115,000 confirmed cases and 1,331 deaths to date.² The Centers for Disease Control and Prevention (CDC) recommended several preventative measures to reduce the spread of COVID: wearing masks, physical distancing (6 or more feet) from other people, and washing hands and surfaces.³ Some states instituted “stay-at-home” orders and restricted gatherings of 10 or more people outside of the same household to curb the spread of the virus.⁴ The CDC also identified risk factors associated with increased severity of COVID-19 symptoms that includes older age, and chronic conditions such as diabetes and hypertension.⁵ COVID-19 affects the cardiovascular system, specifically the angiotensin-converting enzyme (ACE2) cells, which also are found in lungs, intestines, and kidneys.⁶ COVID-19 frequently causes intense but uncoordinated immune system responses.⁷ Therefore, people with comorbid conditions who have impaired cardiovascular or immune systems have been more negatively impacted by COVID, meaning higher incidence, worse symptoms, and increased risk for detrimental COVID-19 outcomes, such as hospitalizations, ICU admissions, mechanical ventilation, and death.⁸

People living with HIV (PLWH) are at higher risk for contracting and being hospitalized with COVID-19 than those without HIV (27.7 per 1000 versus 19.4 per 1000).⁹ Having a diagnosis of HIV with weakened immune systems, and low CD4 white blood cell counts, increases risk of contracting COVID-19.⁹ Additionally, PLWH have high rates of cardio-metabolic comorbid conditions, such as diabetes, which adds to their high-risk for worse outcomes from COVID-19. Along with general diabetes risk factors such as aging, PLWH are at an increased risk for developing diabetes than the general population due in part to chronic inflammation and mitochondrial damage caused by HIV treatment.¹⁰ Even when a PLWH has a viral load that is undetectable, meaning that the level of virus is so low that laboratory testing cannot detect it, they will still have some level of inflammation due to the HIV virus.¹¹ About 12–19% of PLWH also have diabetes, which is higher than the prevalence in the general population.¹²

Self-management of chronic health conditions involves the daily tasks that individuals need to complete in order to manage their health and prevent disease-related complications including eating a specific diet, taking medications, monitoring symptoms, and keeping medical appointments.^{10, 13} Poor self-management can lead to increased morbidity and mortality, and decreased quality of life.¹⁴ People with multiple chronic conditions, such as the dual diagnoses of HIV and diabetes, must include condition specific self-management behaviors, such as blood glucose monitoring and foot inspection for people with T2DM and harm reduction and managing symptoms for PLWH.^{12, 15} Self-management of these dual diagnoses is even more complex because of the diseases’ overlapping symptoms, polypharmacy, and the need to track multiple medical appointments.¹⁶ Self-management routines for PLWH and T2DM were likely impacted by the pandemic and stay-at-home orders. Self-management may have become more complicated due to fear of exposure to COVID-19, the need for physical isolation, and restricted healthcare access.¹⁷ Furthermore, PLWH and T2DM may have lost access to resources like transportation or social support during the pandemic, making it difficult to effectively self-manage their diseases.

The research team was in prime position to explore the impact of COVID-19 because it was engaged in a larger study of how PLWH and T2DM self-manage their diseases. The team, which had already engaged the sample using ethnographic qualitative methods, was albeit to reconnect with the research participants to see how their self-management experiences had been affected by COVID-19. In May and June 2020, communities were still experiencing shortages of supplies, including masks and COVID-19 tests, and some groceries and personal supplies. The promise of a COVID-19 vaccine was still six months away. The purpose of this study is to describe the impact of the COVID-19 pandemic on self-management behaviors and practices for people living with the dual diagnoses of HIV and T2DM and to identify pandemic-specific disruptions or changes to their established self-management practices.

Methods

This qualitative, exploratory study was conducted in May-June 2020 with a subsample of participants from a larger qualitative study of self-managing both diabetes and HIV. As part of the larger study, participant had already been interviewed twice about their self-management behaviors and attitudes. A third interview opportunity was offered to all of the qualitative study participants via phone call or email. Data collection for this study included semi-structed interviews with two research team members using video conferencing or, if there were technical difficulties, interviews were conducted by telephone. Both researchers wrote field notes during and after the interviews. The interview guide consisted of open-ended questions that were adapted from the parent study’s interview guide to include questions about self-management during the COVID-19 pandemic, COVID-19 information-seeking behavior and knowledge (see Table 1). The parent study was guided by a model (manuscript in review) that described diabetes and HIV health outcomes as predicted by contextual (age, race/ethnicity), psychological (stress, anxiety), and motivational factors (self-efficacy, health beliefs). The current study used the model to develop the interview guide; the open-ended questions reflected each of this areas, and the data analysis.¹⁸

Table 1.

Interview guide

Number	Question type	Question	Probe(s) / follow-up
1	Background	How has it been going for you?	How have you been since the COVID-19 crisis started in the US?
2	COVID-19 assessment and precautions	What do you think about COVID? Do you think you had it? Did you/have you been tested?	How is it making you feel? What do you think is going to happen?
3	If they had COVID-19	How was that for you? How are you feeling now? Did your HIV or diabetes get worse?	Get the story of getting diagnosed, treated, and getting well.
4	If they didn’t have COVID-19 already	If you think you were showing symptoms of COVID, what would you do?
5	COVID-19 assessment and precautions	Do you feel your risk for getting COVID is different compared to someone without a chronic condition? Can you tell me about that?	If you feel more at risk – what are you doing to keep yourself safe?
6	COVID-19 information seeking	Where do you get your information about COVID?	Examples of places you might get information are online, friends/family, newspapers Can you describe how true or accurate you think the information you have been getting is?
7	COVID-19 assessment and precautions	What precautions are you taking?	Examples of precautions are quarantining, practicing social distancing, and wearing masks or gloves.
8	COVID-19 assessment and precautions	How do you feel about different places in your life such as stores, restaurants, or the outdoors and	Are there some places that feel safer than others?
9	COVID-19 assessment and precautions	Can you tell me specifically about getting your groceries? What has this been like?
10	COVID-19 assessment and precautions,Self-management habits & COVID-19	What about getting your medications, has that changed? Has this changed your ability to take your medications regularly?
11	Self-management habits & COVID-19	Previously we talked about snacking and comfort food. Can you tell me about your eating habits now?	FU: Have you been cooking a lot or eating out?
12	Self-management habits & COVID-19	Some people have told us that they have had difficulty getting exercise during this time, how as that been for you.	Can you remind us of your exercise regimen before COVID.
13	Self-management habits & COVID-19	Since COVID have you had any difficulty with your diabetes in general? Can you tell me about it?	Are you trying anything new to help with your diabetes?
14	Accessing Health Care	Have you seen your provider during this time and if so, what was it for and how was that for you?	FU: Was the consultation in-person, an over the phone or computer?
15	Accessing Health Care	If you got sick, not related to COVID, what would you do?	Would you go to the hospital if you had a non-COVID 19 condition? Has COVID gotten in the way of you getting appointments or treatment?
16	Social support	For a while we were told to shelter at home and now things are opening back up. How has that been for you? How are you interacting with your family and friends? Some people are wearing masks, and some aren’t, or keep social distance – what have you decided to do? How did you come up with that decision?	Some people are reaching out to old friends, how has that been for you? Can you compare what it’s like to check up on friends during COVID? How is it different? How are you handling celebrations such as weddings, birthdays, and graduations?
17	Social support	If you are in a support group, is that still meeting or how is that going?	How has it been doing the support group remotely?
18	COVID changes - Employment	Can you tell me if you are working and how COVID has impacted your job or employment?	Were you forced to stop working because of COVID or could you work from home? What about work during COVID? Have you worked from home using things like Zoom? FU: If you stopped working, were you able to obtain benefits?
19	COVID changes - Housing	Has there been any change in housing for you?
20	COVID changes – Risk behaviors	Can you tell me about any changes to your smoking, alcohol, and/or drug use?	Are you smoking more, about the same, quit?
21	Social media/Technology use	There is a lot of people using social media to stay connected to the larger world, what social media have you been using? Are you using different or more technology to socialize because of COVID?	Some examples of social media are Twitter, Instagram, and Facebook
23	Wrap-up	Is there anything else about your life during COVID-19 that you think is important for me to know about?

The University’s Institutional Review Board approved the protocol prior to beginning study activities. Participants provided verbal consent to participate at the start of an interview with at least two members of the research team via videoconference software or phone. Research team members completed reflexive journaling directly following the interviews to note body language or emphasis on topics and identify potential researcher biases during the interview. The research team also reflected on the ethical and methodological challenges of conducting qualitative research during a pandemic with a sample that has multiple layered vulnerabilities. Participants received a $50 electronic gift card via email after the interviews.

The research team is composed primarily of people of color from various socioeconomic status levels. Team members reflected on their privilege and biases prior to data collection and during analysis. Their own experiences in addition to perspectives of other scholars of color informed the study design, data collection, interpretation, and conclusions reported in this article.

Recruitment and Population

Participants were part of the convenience sample enrolled in the larger qualitative study (n=21), all of whom were invited to be re-interviewed for this study. All participants lived in a central Texas county while a mask mandate was in effect, and residents were requested to stay-at-home when not engaged in essential work or health-seeking activities. Participants for the parent study had been recruited via flyers and in person from local organizations and clinics that served PLWH and T2DM, and by word of mouth recommendations. Inclusion criteria for both this study and the parent study were: people who 1) self-reported having been diagnosed with both HIV and diabetes, 2) were 18 years or older, and 3) taking prescribed medications to treat HIV and diabetes. People with gestational diabetes were excluded.

The sample is drawn from a vulnerable population because PLWH have been stigmatized, have medical conditions that place them at higher risk of COVID-19 infection and poor outcomes, are predominantly people of color, drawn from clinics serving low-income populations, and are well-documented as difficult to recruit into research.¹⁹ They were the ideal sample to speak about their experiences of HIV and diabetes self-management during the pandemic because they met the inclusion criteria and because they had a preexisting relationship with the research time. When data were collected, our university and others around the country had just allowed research activities to start again, provided they were specific to COVID-19 and did not put participants at risk for infection. The research team leveraged the prior relationships with the parent study’s sample and did not attempt to recruit additional participants during a peak time in the pandemic.

Data Management and Analysis

Information on the methods and activities used to ensure rigor are seen in Table 2. The interviews were audio recorded and professionally transcribed. The transcripts were analyzed using thematic content analysis.²⁰ The transcripts were entered into NVivo software (version released March 2020) to organize and analyze the data, and provide an audit trail of the codes, categories, and themes. The transcripts were each coded by three (XX, XX, XX) or more members of the research team. The first three transcripts were coded by the three research team members together during a 90-minute collaborative coding session in order to build a codebook. Subsequent coding was completed individually with codes discussed in a weekly meeting with any disputes resolved by a fourth researcher (XX). Once coding was completed, research team members met to combine codes into higher-level themes and categories. A final confirmability audit was completed by the fourth research team member to enhance rigor and ensure trustworthiness of findings.²¹

Table 2.

Study methods and actions to ensure rigor

Quantitative	Qualitative	Methods utilized	Actions associated with each method
Internal validity	Credibility	Prolonged and varied field experience Establishing authority of researcher/team Reflexivity Interview technique Referential adequacy Triangulation of investigators	Previous study provided prolonged experience; All team members have different but relevant expertise; Research team members kept reflexive journals to record field notes, observations, and bracket (potential) biases; Regular team/peer debriefing after interviews and during analysis; Semi-structured; Private online space; Interviewer techniques such as re-phrasing what was said to check understanding and accuracy in-the-moment; All raw data has been de-identified and kept in secure storage in order for future access by other researchers; Coding team (n=3) included multiple researchers with diverse backgrounds and expertise;
External validity	Transferability	Dense description of data Sampling approach	Sufficient quantity (e.g., thick) and quality (e.g., rich) of description in raw data and reported in the manuscript; Purposive sampling to ensure participants can speak to the research question (e.g., critical case sampling);
Reliability	Dependability	Dense description of research methods Code-recode procedure	Sufficient quantity (e.g., thick) and quality (e.g., rich) of description in manuscript and Table 1; Each transcript was coded independently by at least 2 members of the coding team with codes compared and consensus formed by the entire coding team;
Objectivity	Confirmability	Audit trail Reflexivity Peer examination	Qualitative software (NVivo) was used to maintain a clear audit trail; Discussion of final results and implications by research team with a focus on ensuring researcher neutrality; A senior member of the team independently coded a representative sample of transcripts (33%) and compared the findings with the preliminary results from the coding team.

Results

Nine PLWH and T2DM were interviewed for this study. Interviews lasted an average of 36.7 (SD 13) minutes. Participants reported the following racial/ethnic identities: Black (n=4), White (n=3) and Latinx (n=2). Their mean age was 54.8 years (SD 5.7), and the majority were men (n=6). All participants had been diagnosed with HIV for over 20 years, and all had been diagnosed with diabetes subsequently to HIV. None of the participants had been diagnosed with COVID, exhibited symptoms, or had been tested for COVID-19 at the time of the interviews.

Themes and categories

Five themes emerged from the analysis: 1) Adjusting to living with HIV and diabetes impacts beliefs about COVID-19 risk; 2) COVID-19 information-seeking and accuracy, 3) Trade-offs in self-managing multiple chronic conditions; 4) Balance between safety, relationships, and the society at large; and 5) Discordant perceptions and actions. Each of the themes are described below.

Theme 1: Adjusting to living with HIV and Diabetes Impacts Beliefs About COVID-19 Risk.

Participants described how having HIV impacted their thinking and perceptions of risk regarding COVID-19. They drew parallels between their experiences of being diagnosed and living with HIV and the emergence of COVID-19. Participant 1 shared that having HIV had already prepared them to reflect on their mortality.

Even if I think – oh my God; I’ve got COVID-19, and I’m gonna die. Been there, done that… this isn’t my first rodeo at the deadly virus convention… COVID-19 – it’s nature, you know? Sometimes a big storm blows through and the trees drop a few dead branches. Sometimes, nature decides to clear out some of the dead branches.

Participants considered SARS-CoV2 to be like the early years of HIV. They recognized that the world was dealing with a novel, relatively unknown, and potentially deadly disease that can increase panic. Participant 4 reported that being diagnosed with HIV in the early 2000s, when healthcare providers had learned about it and there were clearer treatment options for it, helped him feel less panic and fatalism than he might have experienced if he were diagnosed 10 years earlier. He compared that with the newness of COVID-19 and how little was known about it.

And I think that…with the HIV, I always have thought that if I’d have known about this before 2003, then I may not have handled things so well just because the medication was not as good. I think a lot of people, when they got the news in the ‘80s and ‘90s, just gave up. And with the COVID thing too, I think it’s the same. Once you realize what it is, then people panic.

About half the participants believed they were at higher risk for contracting COVID-19 and having poor outcomes due to their HIV, more so than their diabetes.

At first, it was harder than I thought it would be, but I get it. And I kinda miss the interaction working with the public. I know it’s gonna change now with everything going on. I had an in-person face-to-face [job] working with customers and that was at 40 hours a week. So, working 100 percent of the time at home it’s been different because I don’t go out because of my HIV, not because of the diabetes. And I know that I’m one of the high factors, and I don’t wanna be catching the virus.

Participant 5

Others did not believe they were at higher risk for COVID, because both their HIV and diabetes were well controlled. Several participants were more concerned about the risk for older adults than themselves, with many specifically citing concerns for their aging parents.

I don’t think [my risk is different compared to somebody else’s]. I feel that I’m in really good health, so I had most of it under control…The fact that my last doctor’s visit, which was on the phone, he said, “Have you any symptoms of diabetes, at all?” So, I don’t know if he remembered that I was diabetic or not, but he was just going by my blood reports. So, that was it. And that’s been that way for a while. Most worried, my parents are 88, and that’s what I was most worried about – the symptoms, that they would not recover. That held deeply on my mind.

Participant 19

Theme 2: COVID-19 Information-Seeking and Accuracy.

Participants accessed information about COVID-19 from many different sources and media. A few participants had difficulty assessing their level of COVID-19 risk because they were not confident about the information they were getting from the news and public officials. Participant 3 said,

I really don’t know whether I am more at risk than somebody else or not. Like I say, you hear all this misinformation on the TV about what is going on or what’s not going on. You really don’t know what to think until you have it or something like that… I don’t know what to trust because our President say one thing, and then he turn right around and say something else. The governor will tell you one thing, and then he turn around and recants what he said. So, who are we supposed to believe?

Furthermore, many participants stated that they sought information only from sources that they trusted prior to COVID-19. They had confidence in the information shared by healthcare providers with whom they had longstanding relationships and from their accustomed news outlets.

The participants trusted the information they received from their healthcare providers. During a telemedicine visit, Participant 6 was able to ask their HIV provider specific questions about what would happen during treatment for COVID-19.

I love all my doctors. They care so much about us. He just wanted to make sure I was okay. And I was, “Yeah, I am.” He was trying to calm me down ‘cause this was back when I was freaking. I was worried about that drug thing, people getting put on the ventilator. He was tellin’ me, “They’ll put you to sleep. You’re not gonna know you’re on it.” I’m like, “Yeah, I’m not gonna ever wake up.” But, yeah, I’ve talked to him.

Participant 6

Participant 4 described their trust in a local news source because it was well known to them and the information presented was consistent with their own beliefs.

So, I get most of it through [a local TV station] from here in town. Even though I work for (blinded) and have been in some departments that are under investigation and they’re throwing messes towards, still I think they do a good job of covering the news. And they don’t sugar-coat things, and they just say what’s up. And I would say that other news agencies are probably just as good, but I’ve just been watching [local TV station] for so long, I just feel like those anchors, the weather people that we…I’m friends with some of them on Facebook. I chat with them. It feels like we’re friends, to a certain extent. So, I believe what they’re telling me. And I have not run across anything yet that I disagreed, as far as they all seem to be very pro-mask and pro-taking steps to be safe, as well, which is important. So, as long as they’re preaching the same thing I’m thinking, then I really appreciate that. It cements my values and my thinking in that it’s the right way to be thinking.

Many participants reported concerns about people, especially families members, and some news outlets giving contradictory COVID-19 information. Participant 4 described having to manage family members’ discrepant information about how to keep his father safe.

My brother is very much conservative, right-wing, born-again Christian guy and that’s great. That’s the way I was brought up too, so I understand that. But he had a talk with me one day about how he doesn’t feel like the COVID thing is that important. The majority of people who get it recover, so it’s just like any other sickness. And I said, ‘Well, I get that. And, you’re still of middle-age, and you’re healthy, and you have no immune system problems.’ And I said, ‘But my problem with you is that you’re by Dad, who’s 80 and you’re giving him the same information.’ And I said, ‘I don’t think that’s fair because Dad is in a higher-risk category, especially because now that Mom’s died, he’s very social.’ So, I just asked him to be more considerate and more responsible in what he’s saying to our dad.

A small number of participants who trusted their healthcare provider stated that they tried to make sense of conflicting information by triangulating information sources and checking the accuracy of information with experts.

I just read a lot about it, and I’m an avid news watcher, CNN, so I watch the news all the time. If there’s something that I’m kind of like not so sure about or kind of hmmm, there’s a lot of doctors here [at my job]. I can always talk to them, ask them, and they give me their opinion or their advice. I use that a lot, and I’m kind of glad I work in a medical facility because there are things a lot of times that happens. I Google something and then I’ll take it to them and say, ‘Hey, I Googled this and I think something like this is happening to me?’ They kind of sense it and they’ll show it; no, it’s not that. It’s good to have that access here…I’ve been working with them quite a while, so we’ve kind of established a relationship. I kind of fuss at them. I can ask them questions that I normally would feel embarrassed about asking my own doctor. Hmmm, that might be a dumb question. I’ll ask them, and they’ll be like, ‘No, that’s not dumb.’ It works out real well for me.

Participant 18

Theme 3: Trade-Offs in Self-Managing Multiple Chronic Conditions.

Almost all participants reported changes they made to their self-management routines due to the pandemic. Many changes centered on their diabetes management, including behaviors related to healthy eating, staying active, and blood glucose monitoring. In addition, all participants reported changes in their workplace as a result of COVID-19; many transitioned to working remotely. Some participants reported that working remotely increased their time at home and allowed them to improve some diabetes self-management behaviors such as checking their glucose or using their medications more effectively.

One thing about being at home so much is I get to test [my blood glucose] more often, right? So, really, it’s easier to keep track of. Even when I was garbage eating, a little more insulin. But, I mean, you just keep track of it better. It’s not like I’m out somewhere and don’t have my [blood glucose checking] kit with me ‘cause I hate dragging that around. But when you’re home all the time, there’s no excuse to not test and then give yourself a shot [of insulin] if you need it.

Participant 4

However, all participants spoke about the negative impacts on their eating and exercise habits from COVID-19 and working from home. Some participants noted an increase in how much they snacked between meals and surmised that snacking was a way to ease the boredom of isolation and provide comfort. “I’ve gained some weight only because I find myself snacking on carbs or chips.” Participant 5

People with both HIV and diabetes must keep appointments with several specialists. All participants experienced telemedicine since the start of COVID-19. They liked not having to take the time or trouble to travel to appointments, but missed the physical contact and personal connection of in-person visits.

I just had a doctor’s appointment, which we did like this [videoconference], and it went well. I’m kind of open with that in the future instead of having to drive there all the time. It was quicker, it was more convenient, so keep this going on… It just cuts down on office visits and time. I was kind of [not] optimistic at first, like oh how is this going to work, but it worked out much better than what I had anticipated. I hope and I’m good with using it going forward. Only problem is we don’t touch each other.

Participant 8

Theme 4: Balance between Safety, Relationships, and the Society at Large.

All the participants stated they were practicing physical distancing and following the city government’s COVID-19 regulations and restrictions. Several participants described the mental toll this was taking and characterized their feelings as going through peaks and troughs. Participant 5 was partnered with a man from Mexico, and expressed dismay that they were not going to be able to see each other for a long time due to the COVID-19 restrictions at the US-Mexico border.

It’s been a battle. It’s been an up and down issue, just because being quarantined, and because we’re 100 percent working from home now. So, it’s a bit of a challenge not to have good days and bad days, just a roller coaster some days…I don’t know when we’ll be able to see each other until this whole thing passes by. So, he was kinda upset, kinda sad because we’re separated at this point.

However, some of the participants were already accustomed to living an isolated life because they had not disclosed their HIV-positive status to many people. These participants reported little to no change in their lives even with the COVID-19 restrictions. Participant 3 described how they had been living a solitary lifestyle for some time so that the restrictions did not disrupt their daily routine.

I don’t really change things because I don’t do too much. I mean I’m usually around home anyway. And while I’m around home, no, I don’t wear a mask or something like that because I’m at home. And the best I can do is walk out to the street, but I don’t be around anybody. I usually be by myself or maybe a couple of other residents here. But they don’t go anywhere. So, we all right here confined together…Whether Texas was open or closed, it was about the same to me because I never went anywhere. And I never go and do anything. So, it’s a regular day.

Participants also described the different rituals they had developed for staying safe from COVID-19, which centered on making less frequent shopping trips, cleaning practices, and wearing a mask.

Bigger shopping, like one time a month. And when I go in there, I do what I need to, I get out of the stores. When I come home, I separate everything and I disinfect everything with the spray. If it has a chemical – in a can or in a sealed bag, or some things I just wash and I dry everything and I put everything up. And my sister was going to make some masks right at the beginning, but she never did, so then, I made my own. I never went out without one. I don’t think – felt it was advised to have one. Once in a while, I’ll be in my car and I’ll forget that I don’t have it on when I’m driving in my car. I clean it all the time.

Participant 9

Most participants reported how other people’s behaviors and lack of safety negatively impacted their own health. Participant 2 said, “Everybody is not doing the safe thing. Everybody’s not wearing masks.” Participant 4 pointed out the tensions between having personal freedom and participating in safe practices for the benefit of public health and the greater good.

I look at the news reports and see all these idiots out there with no masks, and I just think the masks are gonna be the thing that – and the hand sanitizer too – but especially the masks. I mean, really, with this COVID stuff, that’s how it enters into the body is through your respiratory. It’s your face. It’s your mask. So, if it will keep you from touching your face. Or, I mean, I really think we can get numbers down if we make these masks mandatory…You know, freedoms are great unless you’re dying from the freedoms you’re given. So, I think if we have to take precautions then in order to be free, we need to live up to those precautions.

Other historical events such as social unrest, protests for racial and civil rights, and widespread economic downturn unfolded during COVID-19 regulations and restrictions, prompting several participants to discuss how these events affected their own lives. Participant 4 was particularly concerned about the impact of the restrictions on the economy and the difficulty of balancing COVID-19-related health against economic health.

You know, now that we’re having this spike of and return of it, it’s really difficult to – well, the one thing I think is gonna happen is that we’re not gonna see everything close down again. I don’t think that governments can afford to watch the economy tank like that. It’s very difficult to put everybody at risk with a bad economy, as opposed to a select part of the population with the sickness that you could get better from. So, for us to be closed as long as we were was one thing. But I don’t think that – It may back up a couple of steps, but I don’t think we’re gonna see everything close down like it did. I just don’t know that the economy can handle it because if we all become bankrupt as a nation, then it doesn’t matter what’s out there. It’s gonna be horrible for everybody.

Participant 2 spoke about the health disparities in COVID-19 cases and deaths experienced by African Americans, and the impact of the protests on this same community.

Just seeing the people with the protests and seeing the people that have … I mean, looking at the news you get all of these numbers [of COVID cases] and you can’t imagine all these people have gotten sick and they are still trying to open the state back up. It’s kind of leery to me. It’s like something isn’t right and then why is it more black people dying? Is it because they can’t get medication, or they can’t get tested and it’s too late after they get tested? It’s just leery.

Theme 5: Discordant Perceptions and Actions.

Early in each interview, every participant reported they vigilantly practiced physical distancing and isolation, consistent with COVID-19 restrictions and regulations that were in place at the time of the interviews. However, as the interviews progressed, most participants let on that they visited with groups of friends from outside their households in-person or that they attended in-person meetings or events. Some talked about plans to resume their jobs in-person where they would come into contact with many people. While some of these behaviors were not outside the regulations and restrictions for small gatherings with masks, they did not align with the participants’ earlier statements about having been completely isolated and quarantined from non-household members. Participant 2 reported they were staying in isolation until they got a vaccine (expected to be at least seven months in the future), but then talked about returning to in-person work before being vaccinated to sell concessions at large sports events.

Yeah, I’m stuck there until there’s a vaccine. So, it doesn’t matter what anybody says in government, I know what is being recommended for somebody with my underlying conditions and basically that’s what I’m following or will continue to follow. Like I said, I am gonna go to work because I’m so excited.

Participant 1 initially talked about meeting with friends over Zoom, but then mentioned meeting with friends in-person and in a manner that was not socially distant. Furthermore, Participant 1 stated that even though they were in the highest risk category for severe COVID-19, they were going to leave isolation to volunteer with an organization when it opened again.

It [Zoom] was just a fun way to socialize, but not really be exposed in any way. So, anyway, yes, I went out to lunch. And, yes, I’m gonna start volunteering again but in an extremely controlled environment because I work in a food bank. And we’re always gloved and sterilizing everything because of sanitary handling and cross-contamination. So, aside from putting a mask on to be in there, and they’re limiting the number of people in the building and number of people in the kitchen and food bank area where I work…So, whatever any government official says, I realize that I have diabetes. I have kidney disease. I’ve lost kidney function. I have advanced liver scarring, and I have HIV, even though it’s undetectable at the moment. Once it breaks, it breaks good, usually. I’m still in the self-isolation category.

Participant 4 had talked about staying home until the vaccine arrived, however they described having recently shared car rides and eating inside at restaurants with friends who were not members of their household.

It’s weird ‘cause my friends here in Austin, we would go to dinner probably once a month or so, four or five of us. And now can’t do that. I go out with one or two recently, but not very often. We’ve only been to two restaurants in the past three weeks, and one of them was in Lockhart [33 miles outside Austin]’cause there was a Mexican restaurant that I had went to before all this happened, which was really good. So, when they started opening restaurants again, especially with the lower numbers in Lockhart and that whole county, I was like, ‘Let’s go eat there. And if there’s a big spike, we’re gonna know it’s us that brought it. So, let’s hope that doesn’t happen’. Yeah, so when they finally opened up restaurants again and stuff, I said, ‘You guys, let’s take a daytrip. Get out of town. We are gonna just be with each other pretty much in the car until we get there and have lunch. And then we’re gonna come back home.’ So, it’s a pretty safe trip, and we haven’t been together. There were four of us who went, and we had a nice time.

Discussion

In-depth qualitative interviews were conducted with nine people diagnosed with the dual diagnoses of HIV and T2DM to ask about their experiences with disease self-management during the early months of the COVID-19 pandemic. In contrast to the interviews conducted the year prior as part of the parent study, interviews for this study were conducted via videoconferencing or phone and the average interview time was shorter by about 30 minutes. Shorter interviews may have been due to a feeling of disconnect by the virtual interview, difficulties with technology (e.g., weak internet or cell signals causing poor sound or video quality), or due to the focused scope of the interview that came after two more in-depth interviews in which detailed histories were already collected. The two participants with the shortest interview times were unfamiliar with the specific teleconference application provided by the university, which may have been a barrier to the participants. The teleconference platform was required by the university because it was the only HIPAA compliant platform available at that time, when “Zoom-bombing” was a concern. Other videoconferencing applications that were more familiar to participants (e.g., Facetime), were not an option for this study.

In general, the participants described feeling like they already had insight into how to deal with aspects of COVID-19 as a result of their experiences living with HIV. They spoke about the difficulties they had in discerning the accuracy of the information they received about COVID-19 and reported that they tended to seek out information from their longstanding, trusted sources, which was reminiscent of the lack of information or misinformation in the early days of the HIV epidemic. Most participants described how specific aspects of their diabetes self-management were suffering, like healthy eating and exercise, but that other aspects, like blood glucose monitoring and taking medications, had improved during the time of quarantining at home. While participants said they adhered to physical distancing, many also reported visiting with friends in-person, indoors, without masks. This exploratory study illustrates issues and sentiments that were unique to people living with HIV and diabetes and also universal to people diagnosed with multiple chronic conditions and, in some ways, to everyone navigating the early stages of the COVID-19 pandemic.

How Living with HIV and Diabetes Impacted COVID-19 Risk Beliefs

Participants voiced a sense of resignation regarding the possibility of contracting COVID-19 that they described in the context of already having significant experience with a “deadly virus,” meaning HIV. Interestingly, participants mentioned expectations of getting sick with COVID-19 in relation to having HIV but not their diabetes even though feelings of fatalism about diabetes have been well documented. Feelings of fatalism are fairly common among people of racial/ethnic minority groups,^{22, 23} are frequently linked to distress and depression,²⁴ and to infrequent or inconsistent self-management behaviors, poorer glycemic control and worse disease trajectories.²⁵ Feelings of fatalism have also been well documented for people with HIV/AIDS, especially among Latino and Black communities.^{22, 23} The participants might have expected to acquire COVID-19 because it is a novel and potentially deadly virus, similar to HIV, whereas T2DM is not a communicable disease, progresses more slowly, and is not associated with major changes in public behavior or panic. For people who have experienced the reality of having HIV, especially in the 1990s before HIV was considered a chronic condition, COVID-19 seemed to cue strong feelings of fatalism related to HIV.

Jimenez et al. recently reported that people who associated COVID-19 with death were less likely to report intentions to perform preventive behaviors like physical distancing and hand washing. This dissonance between fear of getting a disease and lack of prevention is consistent with fatalism. Furthermore, Jimenez et al. reported that people identifying as Black were particularly likely to associate COVID-19 with death.²⁶ While many of the participants in this study expressed fatalistic beliefs about COVID-19, none of them described being unlikely to take preventive action and all participants stated they were attempting to follow current regulations. However, some also engaged in somewhat riskier behavior of gathering indoors with non-family members, going to the gym, or eating inside a restaurant. The participants, who had all been diagnosed with HIV for decades, may have processed their fatalistic feelings about COVID-19, either subconsciously or with intention.

Many participants identified a collective belief that their HIV diagnosis conferred them with higher risk of getting COVID-19 and suffering with worse COVID-19 outcomes, but few participants cited their diabetes as placing them at significant risk. This is notable because T2DM actually confers greater risks related to COVID-19 than HIV, which, when under control of anti-retroviral therapy, adds less risk for negative outcomes than diabetes.²⁷ People with diabetes have a threefold higher mortality rate from COVID-19 than those without diabetes.^{5, 28} COVID-19 also contributes to worsening glucose levels beyond what is typically caused by the stress of a critical illness because the SARS-CoV2 virus damages the pancreatic beta-cells.²⁹ In contrast, Hing et al.’s (2019) study of 75 adults’ experiences of living with HIV and hypertension found that most participants were equally concerned about hypertension and HIV because they were unable to predict consequences of hypertension in comparison to HIV.³⁰ Some participants in this study were more concerned about their older parents, or did not identify themselves as having higher risk than anyone else. People who are unable to gauge their own risk profiles may be challenge when implementing COVID-19 precautions for themselves.

COVID-19 Information Seeking and Accuracy

From the onset of the COVID-19 pandemic, information about the virus and best practices related to safety precautions confused many people. For example, recommendations to wear masks and how to wear them changed often. Initially in the U.S., the public was officially told not to wear masks. However, that recommendation quickly changed and many states or municipalities implemented mandates that people wear masks when in public. The changing information and restrictive policies led to a public backlash in some areas because people did not understand that the initial guidance was about saving masks for healthcare providers, not about their efficacy.³¹ Furthermore, the CDC later recommended wearing two masks instead of one.³² Given the frequently changing information, it is not surprising that participants in the present study had difficulty parsing and acquiring health information—often searching for information until they found a source that confirmed their already formed personal beliefs.

Clear, succinct, accurate health messaging from governmental agencies and shared by trusted local news sources would allow people to take appropriate precautions against COVID-19. For example, information about COVID-19 vaccines should be transparent about how the vaccines were developed, present facts and risks clearly without moralizing, and use modern communication channels such as social media to spread messages.³³ Effective messaging in HIV campaigns has included intensive peer counseling delivered in community settings³⁴. Some participants in the present purposefully limited their exposure to news, to decrease anxiety. As with the HIV information campaigns, COVID-19 information should be disseminated via focused community outreach with information provided by trained peers and neighbors, or community or religious leaders to improve uptake of preventive measures.

Multiple Chronic Conditions and Self-Management Trade-Offs

Participants described better practice of some self-management behaviors during the pandemic, whereas other self-management behaviors became worse. The majority of participants reported snacking more while they were home out of boredom or eating more calorie-dense fast foods due to the convenience and perceived safety of the drive through pick-up. Eating as a way of emotional coping has been well-documented. People tend to eat high calorie food during times of stress and high negative emotions.³⁵ Emotional eating is a challenge for people with diabetes who must maintain a balanced and nutritious diet to keep blood glucose levels stable.³⁶ Some participants talked about not being able to go to the gym and being less physically active due to working from home. A recent study by Lin et al. examined the effect of shelter in place (SIP) orders on weight in 269 adults and found that every month spent sheltering resulted in approximately 1.5 pounds of weight gain.³⁷ By contrast, Brand et al (2020) reported that people who rarely exercised before COVID-19 increased their exercise during COVID-19 although the increase in exercise may not have been adequate to counteract the caloric intake.³⁸ It is highly likely that people may experience weight gain due to the COVID-19 restrictions and their changes in lifestyle and self-management, which may negatively impact their glucose control and blood pressure.^{39, 40} Healthcare providers should note weight changes, but rather than stigmatize their patients for gains that were relatively universal during the pandemic, healthcare providers should help patients return to positive pre-pandemic habits and provide individualized care and mental health resources.⁴¹

Some participants were able check their blood glucose values more regularly when working from home, when not hindered by barriers, like lack of breaks at work, feelings of stigma for asking for a break to check, had been removed. People with a dual diagnosis of HIV and diabetes were already challenged by feelings of additional stigma because their blood is “dirty” or infectious leading them to not feel comfortable testing their glucose outside of their homes, and the COVID-19 pandemic may have added to that feeling.⁴² The privacy of working from home allowed participants to test their glucose levels more frequently and consistently consistent with their preferences to routinely check their glucose and reinforcing the literature pointing to the numerous workplace barriers that interfere with glucose self-monitoring. As the pandemic begins to resolve, healthcare providers must help patients maintain the positive self-management habits fostered, in part, by COVID-19 restrictions. Patients and their advocates can promote workplace policies that support healthy self-management behaviors, such as glucose self-monitoring and physical activity breaks, by providing access to private spaces for glucose checks and regular breaks and places to be physically active.

Balance Between Safety, Relationships, and Economics

The participants reported adhering to safety protocols but also adapted others to maintain relationships. Concerns about COVID-19 transmission led participants to limit their interactions and to engage in thorough and systematic cleaning routines, especially at the beginning of the pandemic. Taking such precautions strained personal and familial relationships, especially when there was a disagreement among friends and family about perceived COVID-19 risk. Similar findings have been reported in a study of family discord (742 co-parents) in the U.S., which found that increased COVID-19 stress was associated with psychological inflexibility and family discord.⁴³

Many participants reported they were “homebodies” before the pandemic; some were already self-isolated due to their health, physical limitations, or perceptions of stigma about their HIV or diabetes. It is common that people with multiple chronic conditions, including HIV, feel stigma that undermines their physical and psychological well-being.⁴⁴ Feeling stigmatized has persisted despite educational campaigns for the general public to increase knowledge about HIV/AIDS.⁴⁵ During the pandemic, feelings of stigma may have increased due to fears of an unknown emerging communicable disease like COVID-19. Though no participants reported absolute isolation, participants kept in physical contact with close friends and family members often without precautions like masks. This level of risk outweighed the benefit of social support for the participants. The participants were keenly aware of the impact of others’ behaviors on their own safety. As COVID-19 is a highly communicable virus, they were dependent on community members to take preventative measures. Rates of COVID-19 were high in the areas of town where the participants lived.

During the time of the interviews, there were local protests in response to the killing of George Floyd and other people of color. There was a confluence of community stress and civil unrest in a population that is already negatively impacted by racism. At the time of the interviews, there were large demonstrations against racism and many feared the protesters would be at risk of acquiring COVID-19.⁴⁶ Areas with high rates of structural racism are associated with health disparities, including disproportionately high rates of COVID-19.⁴⁷ Interventions to disrupt racism include addressing multiple sectors, e.g., housing, economic and justice reform, healthcare policies (e.g., COVID-19 testing), and training healthcare providers and first responders.⁴⁸

Discordance of Perceptions and Actions

Participants reported knowledge of and strict adherence to local pandemic guidelines. However, this did not result in all their described actions aligning with their stated perceptions about their risk behaviors. For example, participants would state they were high-risk individuals, but ready to return to work in-person. Participants most often described leaving isolation to socialize although they did so sparingly and usually with masks. Since the interviews, there have been reports that COVID-19 “bubbles” — a group of people who mutually agree to semi-isolate together during COVID-19 isolation restrictions — are not as safe as people believed them to be because there are more interactions within a bubble than people realized; therefore interacting with people within bubbles actually confers a higher risk.⁴⁹ Despite the efforts to vaccinate the general public, which began months after the interviews were conducted, it will be important to continue research on the safety of COVID-19 bubbles, which will likely continue to be important until communities attain herd immunity and children become vaccinated. Continued education regarding COVID-19 safety and risk factors that encourages and facilitates vaccinations is needed to halt COVID-19 transmission. Instructions and worksheets are available on which people can map out bubbles that illustrate social contacts and potentially help people manage their exposure.⁵⁰

Even with clear and consistent information, healthcare providers and public health officials must recognize that people’s perceptions of their behaviors do not always align with their actions. In the best of times, people often struggle with eating healthy foods, getting enough physical activity, and taking precautions such as wearing seatbelts or helmets or using condoms. The COVID-19 pandemic added a significant layer of confusion, anxiety, and stress that likely contributed to more erratic self-management. Rather than expect the majority of people to adhere perfectly to guidelines and recommendations, healthcare providers should recognize the additional strain the pandemic placed on disease self-management.

Conclusion

The COVID-19 pandemic and resulting restrictions changed everyone’s lifestyle behaviors, but especially for people with the dual diagnosis of HIV and diabetes. For this higher risk group, by examining their perceptions and beliefs related to COVID-19 and learning about alterations in their self-management, highlighting important insights on how to optimize their self-management. Furthermore, these lessons learned may be relevant for other groups at higher risk for COVID-19.