Abstract
The COVID-19 pandemic has disproportionately affected HIV-positive cisgender men who have sex with men (MSM). Between May and June in 2020, we conducted one-on-one semi-structured qualitative interviews with 20 HIV-positive MSM aiming to describe their (dis)connection to social, sexual, and health networks during the COVID-19 pandemic. All participants relied on social support networks to manage pandemic-based distress, using computer-mediated communication as well as physical proximity. To connect to sexual networks, this sample described adaptations to their partner selection strategies, such as enumerating harm reduction approaches. To connect to health networks, participants depended on reassuring providers, resourceful case managers, telehealth, and streamlined access to their antiretroviral therapy (ART) medications. Nonetheless, stay-at-home recommendations reduced community connection, sexual activity, and healthcare access for many participants, and perceptions of these losses were shaped by psychosocial burdens (e.g., loneliness), structural burdens (e.g., environmental barriers, financial difficulties), and health-protective factors (e.g., hopeful outlook, adherence to a regular routine). The COVID-19 pandemic appears to have exacerbated health-related issues for HIV-positive MSM. Given the ongoing COVID-19 mutations, community-based organizations, clinicians, and researchers might use these findings to modify HIV prevention and intervention efforts.
Keywords: HIV, men who have sex with men, COVID-19, healthcare, syndemic theory
Introduction
Reports suggest that COVID-19 disproportionately affects minority communities and people with preexisting health conditions (1,2), including cisgender men who have sex with men (MSM) living with the human immunodeficiency virus (HIV; 3). Given the health vulnerabilities of sexual minority adults (4), the presence of a chronic, highly stigmatized disease such as HIV may exacerbate these health disparities in the age of COVID-19 (5). HIV-positive MSM, a population who experienced higher rates of isolation prior to the pandemic (6), may face unique challenges in staying connected to their communities, healthcare systems, and sexual partners. However, apart from three studies (5,7,8), the majority of research on HIV-positive MSM and COVID-19 is quantitative. A qualitative approach may reveal important nuances in how this population is coping with disconnection from social, sexual, and health networks.
HIV-positive MSM may be uniquely susceptible to negative, COVID-19-related outcomes due to their experiences of syndemic conditions. The syndemic model of health problems is a framework that considers health risk as a compound of public health epidemics and biological, psychological, and sociocultural factors (9,10). The framework encourages researchers and health officials to consider structural factors (as opposed to individual and biological factors alone) in explaining health burdens among marginalized populations, such as greater risk for HIV seropositivity among MSM (11). Shiau et al. (10) proposed a syndemic model of HIV and COVID-19 coinfection in which bidirectional relationships are hypothesized between structural (e.g., food insecurity) and psychosocial (e.g., social isolation) burdens and existing health problems (e.g., immunodeficiency, mental health issues). Evident from this perspective is the synergistic potential for negative health outcomes among HIV-positive MSM in the age of COVID-19. Research suggests that a syndemic model is useful for understanding the coronavirus pandemic because COVID-19 is associated with both structural (e.g., income reduction, loss of access to HIV care providers) and psychosocial (e.g., higher psychological distress) burdens (8,12,13). Hence, structural and psychosocial burdens may shape how HIV-positive MSM make sense of staying connected, accessing healthcare, and engaging in sex during the pandemic.
In terms of staying connected, social support may be difficult to maintain during stay-at-home-orders. From a syndemic perspective, the potential for loneliness is a psychosocial burden that may increase the risk of HIV and COVID-19 coinfection (9). Research suggests that perceived loneliness can increase mortality and morbidity rates through lower wellbeing (14). Data from Spain identified COVID-19-related loneliness as a strong predictor of symptoms of depression, anxiety, and posttraumatic stress (15).
MSM may be particularly vulnerable to social disconnection during social distancing ordinances. Since the pandemic began, MSM have reported fewer social interactions with friends and family (8,12). Furthermore, COVID-19 may exacerbate the social isolation already experienced among people living with HIV (PLWH; 16,17), generating greater distress (18) that may not be assuaged by increased social media use (8). However, findings are inconclusive. A 2021 study, for example, found that HIV-positive MSM believe in collective action (e.g., “remembering the strength of [the gay] community in overcoming hardship;” 7), indicating that community connection may be a protective factor for this population during stay-at-home orders. Conversely, in a qualitative study of HIV-positive MSM coping with COVID-19 in the Southern U.S., a participant disclosed: “I do feel alone, and it kind of reminds me of when I learned that I had HIV” (8). Although living with a partner may counter loneliness, COVID-19-related stressors (e.g., no distinction between work and home) are associated with poorer relationship quality and greater partner conflict (19). Collectively, these findings suggest that stay-at-home orders may strain cohabitating relationships or generate feelings of disconnection unique to HIV-positive MSM.
The two qualitative studies identified during our literature review that featured themes associated with relationship maintenance either sought a rapid, preliminary description of COVID-19-related issues (8) or collected data through open-ended survey responses (7). Although these contributions are useful, the literature would benefit from a richer description of relational coping strategies and perceived consequences of social disconnection using interviews.
Public and personal health require care continuity for PLWH because access to care increases adherence to antiretroviral therapy (ART), thereby decreasing HIV transmissibility (20). Access to HIV care provides additional individual benefits to PLWH, such as reducing the risk of developing acquired immunodeficiency syndrome (AIDS) and increasing referral to support services (21). The coronavirus pandemic threatens access to HIV care in several ways. First, evidence indicates that COVID-19 may impair ART adherence for some HIV-positive MSM (8,13), but not others (12). Second, the pandemic required many PLWH to stay home, encouraging the rapid adoption of telehealth (20). Research suggests that telehealth can be effective for some PLWH (22), but technological barriers (e.g., poor Internet service) can complicate access to telehealth (8,9,18,20). Third, even among PLWH who maintained healthcare access, there are documented concerns about the perceived interaction between COVID-19 and HIV (5,18,23), possibly limiting how HIV-positive MSM connect to healthcare. Two studies found that HIV-positive MSM expressed anxiety about immunosuppression, co-occurring health conditions, and increased COVID-19 susceptibility (5, 8), but given that the studies “did not consider the specific challenges” (5) or “aimed to identify the breadth of experiences” (8), we sought to extend this work with an in-depth qualitative exploration of specific healthcare challenges. Additionally, since studies have yet to explore how HIV-positive MSM make sense of pandemic-based service disruptions and the loss of non-medical HIV programming (e.g., support groups), we sought to address these gaps.
Beyond continuity of care issues, there is limited evidence on how HIV-positive MSM describe the perceived impact of COVID-19 on their health status. Rhodes and colleagues (8) identified changes in sleep and increased worry. Quinn et al. (7) suggested that HIV-positive MSM follow recommended CDC guidelines to protect their physical health and draw on their experience living with HIV to cope with COVID-19-related fears. Evidence also indicates that symptoms of depression and anxiety have increased (12,13). However, across these studies, it is unclear which structural and psychosocial factors HIV-positive MSM would describe as contributing to their health concerns.
Given recommendations for social distancing and staying at home, it is no surprise that researchers have observed changes in sexual behavior as a result of COVID-19 (24-26). Sexual behaviors, desires, and fantasies have changed during pandemic-based stay-at-home orders (26,27), suggesting that people have maintained their sexual networks in novel ways. Among MSM specifically, evidence is mixed. Some MSM reported fewer sexual partners (12,23) while others reported more casual partners (12,28-30) and an increased use of dating applications (12). Since less sex might amplify perceived loneliness and other adverse outcomes of COVID-19 (25,31), exploring how HIV-positive MSM cope with fewer sexual partners might inform public health initiatives and clinical practice. Conversely, given that casual sex could increase the spread of the coronavirus, it is important for public health stakeholders to know how HIV-positive MSM describe their engagement in sex during COVID-19.
This study used thematic analysis to complement and to extend previous research with HIV-positive MSM coping with COVID-19 by focusing on specific challenges, aiming for descriptive depth, and using semi-structured interviews. We aimed to answer the research question: what are the ways in which HIV-positive MSM described their (dis)connection to social, sexual, and health networks during the COVID-19 pandemic?
Materials and Methods
Participants & Procedures
Participants were recruited from the Together 5,000 cohort study. The cohort and study procedures have been fully described elsewhere (32). Briefly, the goal of Together 5,000 is to identify modifiable individual and structural factors associated with HIV risk and PrEP uptake. Together 5,000 eligibility criteria for enrollment specified that participants were aged 16 to 49, had at least two male sex partners in the prior 3 months, were not currently participating in an HIV vaccine or pre-exposure prophylaxis (PrEP) clinical trial, were not currently taking PrEP, lived in the U.S. or its territories, were not known to be HIV-positive, had a gender identity other than cisgender female, and reported one additional behavioral or clinical criteria that increased one’s vulnerability to HIV (32). Inclusion criteria for this qualitative supplement consists of (a) being a member of the Together 5,000 cohort and (b) reporting a positive HIV status since enrollment. Between May and June of 2020, in response to the COVID-19 pandemic, we conducted one-on-one qualitative interviews with 20 HIV-positive MSM (Mage = 36.9; SD = 8.3) who were randomly selected from the larger study, contacted via email, and invited to participate in the current study. Most identified as gay (n = 18) and two were bisexual (n = 2). The sample was a majority people of color (n = 11). Participants had completed some college (n = 10), or earned a bachelor’s degree (n = 5), or held a master’s degree (n = 1) at the time of enrollment. They were employed full-time (n = 8), currently unemployed (n = 5), going to school but not working (n = 3), collecting disability (n = 2), or employed part-time (n = 2). Two participants reported incarceration within the last year. Finally, participants were regionally diverse, with most participants residing in the West (n = 8), followed by the South (n = 7), the Northeast (n = 4) and the Midwest (n = 1).
Participants provided informed consent. Interviews lasted between 45 minutes to one hour, were audio-recorded, and were conducted either via Zoom or telephone. The interview guide followed a semi-structured format. A two-step transcription process was used. First, the initial transcription of audio-recorded interviews occurred via a natural language processing algorithm. Second, to address quality assurance (33), research staff listened to each audio file while proofreading the initial transcription. Participants were compensated with a $40 Amazon gift card. All procedures were approved by the IRB affiliated with the senior author’s home institution.
Data Analysis and Trustworthiness
Several methodological assumptions guided our thematic analysis (34,35). First, this project focused on the identification of semantic themes. That is, the researchers coded data at the explicit level of meaning without searching for an underlying interpretation beyond the theoretical framework. Second, this project sought a rich description of the data across participants. Finally, the thematic analysis started with theoretical coding by organizing data according to the structural and psychosocial burdens specified by syndemic theory (9), then shifted to inductive coding to determine how participants described their experience.
Themes were generated according to a six-phase process (35). First, the first and second author read over the transcripts and noted their initial ideas using analytical memos. Second, the first and second author generated initial codes for the same transcript. This initial list of codes served as the foundation for the team-based codebook (36). The first and second authors met to merge their coding scheme, to define the codes, and to agree on the boundary of the codes (36,37). Next, they applied the codebook to the next two transcripts and met to compare their coding list until consensus was reached. Third, the first and second author met to cluster the codes into potential themes (35). Fourth, the first author reviewed the candidate themes against the entire dataset to consider whether there were enough data to warrant the establishment of the theme. Fifth, themes were defined with illustrative quotes followed by a brief interpretation. Finally, illustrative data were extracted as examples. All analyses were conducted in Dedoose, a secure and collaborative software program for qualitative coding and analysis.
Common methods of quality assurance, otherwise known as trustworthiness (37), were used in the present study (33). Morrow (38) specified four criteria for trustworthy qualitative research in the postpositivist tradition. Credibility was achieved through peer debriefing. Specifically, the first and second author met weekly to discuss their reactions to the transcripts, to audit each other’s coding decisions, and to arrive at consensus for each transcript. Transferability, dependability, and confirmability were achieved through audit trails (38), which were posted as meeting notes on the Open Science Framework. Themes were grounded in the data adequately and reported only if they were consistent across the dataset. Moreover, the fourth author, who was uninvolved with data collection and analysis, audited the thematic analysis and codebook, evaluated the themes for consistency, and assisted with excerpt extraction.
Results
Team-based thematic analysis generated six themes from the qualitative data: (a) experiences of (dis)connection, (b) health status, (c) health-protective factors, (d) continuity of care, (e) psychosocial burdens, and (f) structural burdens. Illustrative excerpts were edited slightly for readability (e.g., removed repeated words).
Experiences of (Dis)connection
During COVID-19, all HIV-positive MSM in this sample either sought connection to personal and sexual relationships, navigated partner selection in the context of stay-at-home recommendations, and/or felt disconnected from community, personal relationships, and casual partners. All participants described helpful social interactions with family, friends, or sexual partners. In the domain of personal relationships, one participant gradually managed his COVID-19-related distress by connecting to friends:
I’m getting really better about it […] I just let my friends […] know about my mental state […] And that’s been through either just like texting, through social media platforms, or it’s been also just a lot of FaceTime. I do find myself sometimes also lacking to make an effort to communicate, and I wonder if that has anything to do with, again, me just feeling depressed or fatigued.
(31-year-old Latino gay man)
Participants (n = 16) also used technology to maintain relationships with family and sexual partners, relying primarily on social media, text messaging, and video calls. However, for n = 12 participants, physical proximity to others tended to buffer against pandemic-related distress. Living with a partner was the only form of consistent social contact for six participants:
I’m very grateful to have my partner here [… because] I have cried things out, you know, I’m constantly talking to my partner about how I feel.
(28-year-old Multiracial gay man)
Intimate partnerships emerged as an important form of sexual connection during COVID-19. Indeed, half of the sample reported monogamous relationships as a source of social support and sexual fulfillment. Most single HIV-positive MSM (n = 9) used sexual webcamming, pornography, sexting, and dating apps to feel connected to their sexual networks; three continued to have sex during the pandemic with casual partners whom they had known prior to stay-at-home recommendations.
Overall, seven HIV-positive MSM acquired new partners during COVID-19-related restrictions. However, both partnered and single HIV-positive MSM (n = 15) described adaptations to their partner selection behaviors during stay-at-home recommendations. Some strategies prioritized physical health over sexual connection (i.e., no sex at all). Other strategies aimed to reduce harm while pursuing sexual connection, such as (a) vetting new partners according to their adherence to “social distancing” and “using face masks” (30-year-old Black gay man), (b) asking whether potential partners “played with a lot of guys” or “if they travel everywhere” (39-year-old Asian bisexual man), (c) inquiring about “showing all signs of COVID” prior to meeting (51-year-old White gay man), (d) limiting partners to men with whom they had sex “with in the past” (34-year-old Latino gay man), (e) limiting sex to erotic “chit chat” (31-year-old Latino gay man), or (f) otherwise assessing risk to determine “like any STD […] if I want to take the chance” (51-year-old White gay man). However, four participants emphasized that these new strategies would likely not change their partner selection behaviors post-COVID-19.
Despite the many strategies of connection employed by this sample of HIV-positive MSM, most participants experienced disconnection (n = 19). For participants without the privilege of physical proximity to family and friends, isolation was more salient. Participants began to call their family “a lot more” just to have “somebody to talk to” (39-year-old Asian bisexual man). For participants for whom connection to the local “gay” community mattered, the pandemic resulted in a significant loss:
As far as connecting with the community at large? No, I think it’s been […] difficult. We understand that we’re all in it together. And there’s been, you know, outreach things from the community to the gay community—whatever—to connect us all over. But instead of knowing how individuals are doing throughout the community, you just—you don’t see them […] it’s not like you get to be together […] So, that’s a tough one.
(46-year-old White gay man)
Disconnection from the wider “gay” community also manifested in disrupted access to sexual networks. Despite desiring sexual connection, half of the participants reported less sex, fewer partners, or no sex at all (n = 10):
I even thought about breaking up with this guy just because I was like: “someone I just met versus me potentially dying,” you what I mean?
(31-year-old Latino gay man)
Nine participants identified dating apps (e.g., Grindr, Scruff) as beneficial for fulfilling their sexual needs, either via erotic chat (n = 9) or finding new sexual partners while implementing harm reduction strategies (n = 7). However, 11 participants reported no use of these apps either due to being monogamous (n = 9) or due to other COVID-19-related concerns (n = 3).
Health Status
A minority of HIV-positive MSM (n = 4) reported positive changes to their health status, such as eating well. Another set of participants (n = 3) reported no changes to their physical or mental health status. Overall, however, stay-at-home recommendations resulted in perceived increases in physical and mental health symptoms (n = 14), even among two participants who experienced some positive changes. Twelve HIV-positive MSM reported greater physical health problems, such as hyper/insomnia. For one participant, structural burdens in his local environment, compounded with stay-at-home recommendations, impaired his ability to eat well:
I stay around all these fast-food restaurants. If I like a salad, I eat it at work […] Healthy foods, you have to go to the grocery store and get it yourself because you can’t get it from [where I live …] I feel like I’ve gained weight […] while being in the house.
(41-year-old Black bisexual man)
Other participants (n = 9) described mental health concerns, such as feeling “on edge” (33-year-old White gay man), “self-destructive” (29-year-old Latino gay man), and “overwhelmed” (31-year-old Latino gay man). Mental health problems were most salient for participants facing coexisting psychosocial and structural burdens:
I’m so scared to even go out in my own living room […] My anxiety and depression has kind of went off the charts […] I’ve been dealing with major depression and stuff because of me not being able to work and […] I want to work but I have so many medical issues [… plus] finding that disability [was] denied.
(45-year-old White gay man)
Feelings of disconnection also contributed to greater mental health problems:
I feel a little bit disconnected […] I’m not taking care of myself […] when everything started, I had a lot of anxiety. I remember like the first week that I woke up at 3 AM and I—my body kind of, like, forgot how to breathe or something.
(31-year-old Latino gay man)
A smaller set of HIV-positive MSM (n = 5) reported struggling with substance use during stay-at-home recommendations. One participant identified the loss of his faith-based support groups as the reason COVID-19 threatened his eight months of sobriety:
Just the temptation has been really, really strong […] with COVID and I’m stranded here, and I just think of you know, “gosh, I wish I could just get high.” But I’m trying to hold on to my sobriety, but I also have this other side pulling at me. Like, if I’m going to be in my room by myself, at least, you know: […] “You’re not going out and hurting anybody—you’re in your room, [so] just get high.”
(45-year-old White gay man)
Health-Protective Factors
At least one health-protective factor was evident at the intrapersonal, behavioral, or systemic level for all participants. At the intrapersonal level, participants reported awareness of COVID-19 risk behaviors, positive affect, and hopeful attitudes towards the future. When participants were informed about and remembered the science of COVID-19 (n = 17), they described “being really extra careful” (31-year-old Latino gay man) while resisting unpleasant predictions and despair:
So, I should be worried simply for the fact that I have a compromised immune system. But at the same time, I’m not going to let something like this completely shut my life down.
(48-year-old Latino gay man)
Even when there were threats to one’s continuity of care, there was evidence of optimism and flexibility:
I had my whole [HIV] appointment cancelled and pushed back. And I guess in a way that it affected me, but it’s not really that bad.
(28-year-old Multiracial gay man)
For HIV-positive MSM in monogamous relationships, translating awareness of COVID-19 infection risk into behavioral health-protective factors was facilitated by intimate partnerships:
Well, [my boyfriend and I] talk pretty much everywhere. We talk every day. So, he’s always like, “put your mask on,” and I’m like, “yeah, put your mask on.”
(31-year-old Latino gay man)
Other harm reduction strategies were used at the behavioral level to protect health (n = 10), including adherence to CDC guidelines (e.g., use of hand sanitizer). Participants also described engaging in self-care to cope with disconnection from social, sexual, and health networks (n = 8). Additionally, they emphasized the importance of establishing and adhering to a regular routine to enhance their health status (n = 13):
I’m doing a lot better. I feel like the worst is past me, because you know, just giving up my routine—my daily schedule […] But now I feel a lot better about it. I’m just creating a new home routine here, and doing things I love, to keep my mind occupied and just to keep myself healthy.
(31-year-old Latino gay man)
Finally, at the systemic level, participants described having steady employment (n = 11), a secure living environment (n = 14), and health insurance (n = 18) as factors that kept them connected to their health networks and engaged in health-enhancing behaviors.
Continuity of Care
Participants (n = 19) described features that facilitated connection to health networks, including HIV-specific care. In terms of general healthcare, most HIV-positive MSM (n = 13) remained connected to their primary care physician via video calls, telephone appointments, and the occasional in-person visit. Supportive, reassuring providers were especially important for this sample during stay-at-home recommendations:
[The] appointment over the phone with one of my case managers helped […] they called me just to make sure everything was good. How was my insurance working out during this time? [They helped me to] make an arrangement for the change of pharmacy, and so I didn’t have to be exposed going outside […They] followed up on all my appointments, [they said] that everything was gonna stay the same. So, it was pretty good.
(29-year-old Latino gay man)
Three participants also perceived an increase in healthcare efficiency and “convenience” (26-year-old White gay man) due to COVID-19, especially in terms of managing their HIV. One 36-year-old White gay men noted how his engagement with his health network seemed “a little more streamlined.”
Positive experiences with HIV care were described by most participants (n = 19). This sample of HIV-positive MSM continued to receive their prescriptions by mail or in-person (n = 14) and adhered to their ART regimen (n = 18). Nearly half of the sample (n = 8) indicated positive experiences with telehealth:
It was really nice not having to sit around in the waiting room. […] It was really fast. We kind of skipped over all the, you know—they weigh you, they take your temperature, they do your pulse, or whatever. Which, I’m sure I wouldn’t want to [skip vitals] every time but, you know, it doesn’t really matter for one visit probably.
(29-year-old White gay man)
Participants also reported that their case managers intervened to counter the structural burdens in their lives (n = 8). For example, case managers assisted with accessing “rent assistance” (31-year-old Latino gay man), sending “packages [of…] food” (28-year-old Multiracial gay man), and “automatically extending” their drug assistance program “by six months” (39-year-old Asian bisexual man). In terms of negative case analysis, the one participant who reported no positive experiences with HIV care stated that he was unable to get tested, his ART medication ran out, he was unable to get in contact with his doctor, and he had no case manager.
Psychosocial Burdens
Connecting to social, sexual, and health networks was complicated by burdens within the individual and his immediate environment (n = 19). Many participants (n = 14) underscored the stress resulting from COVID-19-related environmental changes (e.g., lockdown, self-isolation) and social concerns (e.g., worry about older parents, talking to anxious friends). Greater loneliness and social isolation were common reactions (n = 9), especially for MSM longing for connection:
I feel particularly lonely because […] I’m nobody really. I feel like nobody wants me. So, it’s hard to deal with, especially with this time. I have so much time on my hands, and then I don’t have a love life.
(39-year-old Asian bisexual man)
Whereas a desire for romantic and sexual companionship was most salient for some participants, others identified a general lack of social support as the reason “why [their] anxiety and depression [had] gone up” (45-year-old White gay man). With one exception (i.e., a 29-year-old Latino gay man who continued to visit his boyfriend on weekends), self-isolation was somewhat less shocking for participants living alone (n = 4) in comparison to participants accustomed to being “very social” (31-year-old Latino gay man). Nonetheless, in the context of pandemic-related distress, both groups experienced greater negative affect (e.g., apprehension, sadness, boredom, loss of interest) and negative appraisal. In terms of negative appraisal, harboring a harrowing attitude about the future (n = 9) ranged from worry about HIV–COVID-19 coinfection to beliefs that COVID-19 was “not a pandemic [but] a plandemic” (35-year-old White gay man). Some participants felt afraid of the possible interaction between HIV seropositivity and COVID-19:
Well, me being positive, I was like, “is this…,” you know—“how is it gonna affect me?” Because nobody’s talking about that. So, that was a little bit scary […] it was like an extra layer.
(31-year-old Latino gay man)
Uncertain outcomes and their attendant speculations, coupled with increased isolation, negative affect, and distress provoked disengagement as an additional coping response. For example, one participant reported:
I’m tired and I don’t care what happens […] I’m jaded, but with sadness. You cannot go through feeling sad all the time. So, you just feel like it’s nothing.
(29-year-old Latino gay man)
Another denied COVID-19 by emphasizing:
Everything’s still pretty much normal other than businesses being closed down […] it’s like it’s not even real, it doesn’t even feel real.
(28-year-old White gay man)
When the psychosocial burdens reached a crescendo, even disengagement seemed difficult:
Under all that extra stress from [COVID-19] and then from being back under the influence and everything all at once together. On top of financial [stress…] and like all this other stuff, it was really hard to keep any kind of physical—or, I mean a mental block, or a filter, I guess.
(29-year-old White gay man)
Finally, HIV stigma in the context of COVID-19 manifested in the lives of four participants. A 35-year-old White gay man denied feeling “worried about COVID-19 […] because I’ve already got the worst thing out there.” A 45-year-old White gay man did not perceive the lack of access to sexual networks as a problem because his HIV status had engendered internalized HIV stigma (e.g., “[my HIV is] just kind of devastating [… so] I’m celibate”). Another participant continued to conceal his HIV status from his partner despite spending increased time together due to stay-at-home recommendations.
Structural Burdens
At the systemic level, most participants (n = 18) faced structural burdens while attempting to access social, sexual, and health networks. Negative case analysis revealed that the two participants who experienced no structural burdens were employed, had robust social networks, no service disruption in their HIV care, and were in long-term relationships. For the remaining HIV-positive MSM in this sample, environmental barriers, financial difficulties, poor healthcare experiences, discrimination, and incarceration emerged in their lives. Significant environmental barriers included lack of access to recreational opportunities, information, healthcare services, and transportation (n = 9). For example, one recently incarcerated participant desired connection with his partner, but the couple had limited options during stay-at-home recommendations:
[My partner] went into a shelter program […] because he was in-between places—hotel rooms—but they’re kind of strict on what time he has to be home […] and it’s so far away from me. We like being with each other, but it was him having to ride the bus back and forth; the long trip was scary.
(34-year-old Latino gay man)
Financial difficulties, such as job loss, unemployment, lack of health insurance, homelessness, poverty, and food insecurity, were also prominent in this sample (n = 12):
[I’m] trying to find a job. You know, like anything. The only thing in this area that’s hiring right now is Amazon [… but] it’s not a field that I want to put myself into [during COVID-19], especially with HIV. You know, I don’t want to: “hey, give me all your other viruses,” you know? I think one’s enough.
(36-year-old White gay man)
For one participant, the decision to connect to social networks resulted in a lack of access to his health network due to environmental disadvantages:
COVID-19 happened […] and then I came back home to […] a very small town […] So me moving states, I haven’t been able to get Ryan White, which is a [HIV/AIDS] program […] I haven’t been able to get that or see a doctor yet. I haven’t taken my medication since COVID-19 has started. […] Because […] me living in a small town, the next closest big town is like an hour and a half away. And for me to do that, I would have to go there, and I don’t have a license. [… And] living in a small town like this while being gay? All this is very, very hard.
(28-year-old White gay man)
Even for HIV-positive MSM who remained connected to their health networks, poor service delivery intersected with financial difficulties to create barriers to maintaining a desired health status:
[I finally] had an appointment last week. We did it over the phone […] I had to take a picture of my little rash […but] how can you tell me what this rash is if you can’t see it in person? […] How you gonna check my vitals, how you gonna see if I maintain undetectable—how you gonna check that? […Plus] you know that medication is so high. What if I do lose my job [because of COVID] and can’t afford it?
(41-year-old Black bisexual man)
Although this sample was concerned about COVID-19 and its impact on their connection to health networks, there was a sense of disempowerment when structural burdens were salient:
I mean, I don’t ask questions […] you can’t really when you’re […] at the bottom of the pyramid.
(35-year-old White gay man)
Discussion
The present study used team-based thematic analysis to generate six themes that describe the ways in which HIV-positive MSM accessed social, sexual, and health networks during initial stay-at-home recommendations of the COVID-19 pandemic in spring 2020. All participants relied on social support networks to manage pandemic-based distress, using computer-mediated communication as well as physical proximity. To connect to sexual networks, this sample described adaptations to their partner selection strategies, such as enumerating harm reduction approaches (e.g., inquiring about COVID-19 symptoms). To connect to health networks, HIV-positive MSM depended on reassuring providers, resourceful and attentive case managers, telehealth, and streamlined access to their ART medications. Nonetheless, stay-at-home recommendations reduced community connection, sexual activity, and healthcare access for many HIV-positive MSM, and perceptions of these losses were shaped by psychosocial burdens (e.g., loneliness, resignation), structural burdens (e.g., environmental barriers, financial difficulties), and health-protective factors (e.g., hopeful outlook, adherence to a regular routine). HIV-positive MSM in the sample perceived interactions between these three forces and their health status, with the majority reporting increased physical (e.g., weight gain) and mental health (e.g., anxiety, depression) symptoms, and some reporting an increased risk for substance misuse.
Our findings support a COVID-19-specific syndemic framework (9), wherein for PLWH, the co-occurring COVID-19 pandemic and HIV epidemic results in exacerbated physical and mental health concerns, as well as social and structural marginalization. A syndemic framework thus allows researchers to explore how the COVID-19 pandemic amplifies existing challenges (i.e., loneliness, mental and physical health challenges), while also synergistically presenting new challenges specific to those living with HIV (i.e., HIV care continuity issues, magnified health concerns). The pandemic’s perceived effects on physical, mental, social, and sexual well-being among our sample of HIV-positive MSM occurred largely as a result of the physical distancing and isolation. Prior research (16,17,39) has identified how social isolation harms HIV-positive MSM, as well as how increased physical isolation from social networks due to the pandemic has exacerbated this existing phenomenon. These outcomes may have a lasting effect on those living with HIV, as lost interpersonal connection with protective social networks, as well as sexual networks, has the potential to prolong adverse effects on HIV-positive MSM beyond the context of stay-at-home recommendations should isolation persist.
Moreover, our participants reported ART adherence challenges and forgone laboratory testing to monitor viral loads, a result of impeded daily routines and in-person HIV-related clinical appointments, which is consistent with prior work (8,40). Pandemic-based HIV care disruptions raise concerns regarding lasting consequences for PLWH, as well for HIV prevention at large. Indeed, modeling and clinic-based studies suggest that the COVID-19 pandemic has deleteriously impacted viral suppression in the U.S. (41,42), although disruption and subsequent impacts on viral load suppression have been mediated by engagement in care via telehealth (43). Impaired viral suppression not only harm PLWH but may delay national HIV prevention goals, such as ending the HIV epidemic by 2030 (44). Thus, our findings suggest that the adverse effects of the pandemic on PLWH will rely on coordinated efforts from mental health providers, social support networks, and HIV providers to obviate the worst outcomes.
At the same time, the pandemic may have facilitated the rapid expansions of telehealth. In our sample, telehealth sustained care continuity for many HIV-positive MSM. Our findings expand upon previous work (9,18,20,45), which identified telehealth as influential in maintaining HIV care in the U.S. Similarly, reimaginations and expanded use of existing videoconferencing software (i.e., Zoom, FaceTime) and other technologies (geosocial networking apps) aided in maintaining social and sexual connection for HIV+ MSM in this study, although in-person connection remained vitally important for participants. Thus, although the co-occurring COVID-19 pandemic and HIV epidemic synergistically created new structural and psychosocial burdens, as well as barriers to care and interpersonal connection, these unique conditions also enhanced existing avenues for connection via technology. Building upon these findings to support the physical and mental health of PLWH will be integral for ameliorating the harmful effects of the COVID-19 pandemic on healthcare access going forward. These efforts should include policies that help to sustain access to telehealth and replace regulations that limited the reach of telehealth in the past (e.g., cross-state care delivery restrictions; 46).
Finally, our participants discussed the work of case managers in connecting them to medical and non-medical services during the early pandemic. To our knowledge, only one study (45) has reported on the provision of non-medical services for PLWH during COVID-19. Further research in this area is needed to better understand the experiences and acceptability of remotely delivered non-medical services for PLWH during the ongoing pandemic. An ever growing body of literature (47-49) has underscored the importance of comprehensive “wraparound” programming that meets the complex socioeconomic needs of PLWH. Expansions to this body of work could provide critical information for supporting PLWH as they experience structural barriers to necessary services (e.g., sustainable housing), which in turn may impact HIV prognosis.
Limitations
Our findings should be considered in light of our study’s limitations. First, although generalizability is not the of purpose of qualitative research, it is worth emphasizing that (a) this sample trended towards mid-life adults, (b) primarily included gay men, and (c) featured data from men in long-term, monogamous relationships who (d) were primarily White and Latino. We also had fewer participants from the Midwest. Thus, findings from younger, bisexual, single, Black and Asian, and midwestern participants are undersaturated. Second, although a postpositivist, realist approach to inquiry enabled us to document specific challenges and to describe direct experience through the lens of syndemic theory, a constructivist approach may have generated latent interpretations of how the themes intertwined. Finally, these data were collected during the early months of the pandemic in 2020, and the pandemic has continued to evolve and change meaningfully over time. Thus, there is a need for future research to evaluate the experiences of HIV-positive MSM during other phases of the pandemic (e.g., after vaccine access and uptake increased nation-wide).
Conclusion
While coping with psychosocial and structural burdens, changes to their health status, and pandemic-based experiences of disconnection, this sample of HIV-positive MSM used a diverse set of strategies to remain connected to social, sexual, and health networks during stay-at-home recommendations. Public health officials and clinicians might recommend these adaptive strategies to other HIV-positive MSM or incorporate them into organizational practice. Given the ongoing COVID-19 mutations, community-based organizations, clinicians, and researchers might use these findings to modify HIV prevention and intervention efforts to be responsive to future pandemic-related disruptions.
Acknowledgements
The authors would like to thank Gamille Gallus and Sabrina Rios for their assistance during the quality assurance phase of transcription. Special thanks to additional members of the T5K study team: David Pantalone, Denis Nash, Sarit A. Golub, Viraj V. Patel, Gregorio Millett, Don Hoover, Sarah Kulkarni, Matthew Stief, Chloe Mirzayi, Javier Lopez-Rios, Fatima Zohra, & Pedro Carneiro. Thank you to the program staff at NIH: Gerald Sharp, Sonia Lee, and Michael Stirratt. And thank you to the members of our Scientific Advisory Board: Michael Camacho, Demetre Daskalakis, Sabina Hirshfield, Jeremiah Johnson, Claude Mellins, and Milo Santos. While the NIH financially supported this research, the content is the responsibility of the authors and does not necessarily reflect official views of the NIH.
Funding
This work was supported by the National Institutes for Health under Grant UH3 AI 133675—PI Grov—Together 5000. Other forms of support include the CUNY Institute for Implementation Science in Population Health, the Einstein, Rockefeller, CUNY Center for AIDS Research (ERC CFAR, P30 AI124414). Cory Cascalheira is supported as a RISE Fellow by the National Institutes of Health under grant R25GM061222.
Data Availability:
Data available upon request.
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Associated Data
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Data Availability Statement
Data available upon request.
