Abstract
The HIV epidemic continues to expand in Russia, with suboptimal levels of care uptake. This qualitative study aimed to characterize social capital resources and lived stigma experiences, coping, and disclosure among care-nonadherent men who have sex with men (MSM) living with HIV in Russia. Twenty-five HIV-positive MSM—recruited online—completed in-depth interviews over Zoom, with data analyzed using MAXQDA software. Stigma was more likely to be encountered in interactions with persons with whom social ties were weaker such as medical providers and relatives, particularly males. Close friends—often other HIV-positive MSM and female relatives—were the most supportive and least stigmatizing. Similar persons were most often considered for HIV serostatus disclosure. Coping strategies to reduce the impact of stigma included ignoring stigmatizing experiences, seeking support from members of one’s social circle, minimizing contact with stigmatizing persons, seeking new relationships with persons who are also HIV-positive, proactively reducing stigma through involvement in advocacy roles, and correcting myths and educating others about HIV infection. These findings underscore the need for interventions to assist HIV-positive MSM in building accepting social capital resources to reduce the impact of stigma and to build support within their social networks, often with other HIV-positive MSM.
Keywords: Good health and well-being, Intersectional stigma, HIV serostatus disclosure, Social support, Social capital
SDG Keywords-: SDG 3: Good health and well-being
Introduction
The HIV epidemic continues to expand across a large part of the Eastern European and Central Asia (EECA) region (UNAIDS, 2020; 2023a). Although 93% of persons living with HIV (PLH) in the region who are on antiretroviral therapy (ART) are virally suppressed, a high proportion of PLH are not receiving antiretrovirals. In contrast to most of the world where HIV incidence and mortality have declined, annual new HIV diagnoses in the EECA region have increased by 48% and deaths by 32% since 2010 (UNAIDS, 2020; 2023a). These indicators are largely driven by HIV epidemiology in Russia, the region’s largest country, with the highest rates of HIV prevalence, incidence, and mortality (European Centre for Disease Prevention and Control, 2022; World Life Expectancy, 2023).
ART engagement barriers are common among PLH in Russia. Access to ART varies by HIV exposure group and geographical region and is impacted by care delivery, structural, and systems factors (Sarang et al., 2013; Vyatchina et al., 2021). These are accompanied by contextual factors that contribute to social marginalization, adversely impact mental health, increase substance use, and contribute to continuing HIV transmission. It is well-documented that HIV stigma impacts health and contributes to social challenges, particularly when it occurs in intersection with sexual orientation-related stigma, deleteriously affecting the lives of PLH men who have sex with men (MSM; Turan et al., 2017).
Prior research has shown that PLH employ a variety of strategies to help buffer against the stress associated with intersectional stigma. For example, seeking support from peers and community organizations increases resilience (Earnshaw et al., 2015; Quinn et al., 2023). In addition, community advocacy and social relationships strengthen intersectional resilience and pride in the face of stigma (Quinn et al., 2019). Other studies have shown that PLH cope with anticipated stigma by distancing and using other avoidance strategies, although these can also result in reduced HIV care engagement (Brown et al., 2020; Batchelder et al., 2021). Finally, some PLH MSM chose to conceal their stigmatized identities to avoid anticipated stigma or social isolation (Azhar & Gunn, 2021). By contrast, HIV serostatus disclosure to accepting others boosts social support and can facilitate the use of services (Serovich et al., 2010; Sullivan et al., 2005).
Social support strongly predicts HIV care engagement and psychosocial well-being (Alemu et al., 2012; Amirkhanian et al., 2022; Davis et al., 2021; Knowlton et al., 2007; Remien et al., 2003; Rotheram-Borus et al., 2010), can moderate associations between intersectional stigma and adverse HIV health outcomes, and can improve coping (Earnshaw et al., 2015; Quinn et al., 2018; Slater et al., 2013). The social supports available to persons is related to their social capital resources that provide social connections for adaptive outcomes (Bourdieu, 1987; Coleman, 1988; 1990; Putnam, 1993). Higher social capital has been linked to improved medical outcomes including early HIV diagnosis, linkage and retention in care, and ART adherence (Campbell et al., 2002; 2012; 2013; Cattell, 2001; Frumense et al., 2010; Gibbs et al., 2014; Holtgrave et al., 2003; Poundstone et al., 2004; Ransome et al., 2016; 2017; Ware et al., 2009). Social capital resources also strengthen feelings of support, self-worth, and resilience, and the role of social capital in HIV care and coping may be especially important for PLH who live in regions where stigma is great (Amirkhanian et al., 2018; 2022; Desrosiers et al., 2017; Edelman et al., 2017; Goodness et al., 2014; Kiriazova et al., 2017; Kuznetsova et al., 2016; Pecoraro et al., 2015).
Study Aims
The present study used qualitative in-depth interview methods to explore the lived experiences of a purposively recruited sample of care-nonadherent PLH MSM in St. Petersburg, Russia. The specific aims of the study were (a) to identify prevailing patterns of perceived and enacted stigma related to HIV and sexual orientation; (b) to identify positive coping strategies to counteract HIV stigma or avoid exposure to stigmatizing experiences; and (c) to examine HIV serostatus disclosure strategies, their functions in increasing social support, and reasons for non-disclosure.
An overarching objective was to examine the role of the social capital resources present in—or missing from—the lives of MSM poorly engaged in HIV medical care and to explore two types of resources: those accepting, supportive, and understanding versus those that are socially rejecting, blaming, and shaming, as well as strategies used by PLH MSM to navigate between the two types. These findings can inform the development of intervention strategies that can be employed by providers and community agencies to assist PLH who live in regions high in stigma to identify, access, and mobilize social capital resources.
Methods
Settings and Participant Enrollment
MSM who were living with HIV were recruited from 2020 to 2021 using multiple strategies to maximize diversity with respect to age and treatment status. Announcements were posted on PLH and MSM-oriented websites such as chats, discussion boards, online forums, as well as in online social network groups. In addition, we partnered with community programs that referred their PLH MSM clients to the study. Announcements included study information and the study telephone number so that interested persons could call and be screened for eligibility. Eligibility criteria were: self-report of being HIV-positive, male at birth, at least 18 years of age, sex with a male in the past 12 months, being a Russian citizen, living in or near St. Petersburg, and nonadherent to HIV care. Nonadherence was defined as either: (a) not engaged in HIV care, engaged in care but did not attend an HIV care visit in the past 6 months, or was prescribed antiretroviral therapy (ART) but refused to initiate it; or (b) was on ART but discontinued it or—if on ART—reported <90% medication adherence in the past month. A study sample size (n=25) was selected because it was large enough for a broad range of themes to emerge before saturation was reached.
Interview Procedures
This research was approved by the Institutional Review Board (IRB) of the Medical College of Wisconsin, USA (project #PRO00038732). After providing oral informed consent, participants completed a 60-to-90-minute in-depth interview conducted through encrypted Zoom. To further protect participant identities, video was not used during the interviews, with only audio communication enabled. Participants received a $30 incentive payment for the interview session. All interviewers were trained to carry out interviews using a standardized guide developed for this study that allowed flexibility to probe participant responses and explore emerging topics in greater depth (Bernard, 1995). The interviews elicited detailed information about participants’ (a) stigma related to HIV and sexual orientation; (b) outcomes following HIV serostatus disclosure as a coping strategy; and (c) other coping strategies used by participants. Interviews were intended to identify types of social capital resources reported to be most and least beneficial to coping, including the types of persons in participants’ social networks who were perceived as supportive versus stigmatizing or rejecting following serostatus disclosure, and strategies used by participants to counteract stigmatizing attitudes or minimize stigmatizing experiences.
Data Analytic Procedures
Interviews were audio recorded and transcribed verbatim in Russian. Each transcript was compared with the interview audio recording by an independent staff member to verify transcript accuracy and correct any detected errors. All verified transcripts were entered into MAXQDA 11.0.2 (VERBI Software, 2013) with participants’ identifiers removed. All data that could be meaningfully categorized within central questions of interest were transcribed verbatim into a summary table for each participant.
The first 10 interview data summaries were independently coded by two qualitative co-investigators to identify key themes and develop a taxonomy of the themes that emerged for each of the questions of interest. To establish reliability, the two raters then worked collaboratively to develop a single taxonomy following the Spradley (1980) approach. The raters discussed and resolved any discrepancies. Decision trails were noted and documented to assure that interpretations were supported by the data (Hall & Stevens, 1991; Sandelowski, 1986). All 25 interview data transcripts—including those from the 10 interviews used to develop the taxonomy—were coded using the final taxonomy. Direct quotes were translated into English.
Results
Participants
Participants’ mean age was 35 years (range=23 to 52). Over two-thirds (n=17) of men had a university degree. Three-quarters (n=19) were employed, 16% (n=4) were jobless, and 8% (n=2) were students. Twenty-one (84%) participants were on ART for a mean duration of 5.6 years (range=5 months to 20 years). However, almost one-quarter reported daily adherence lapses (either missed pills or delayed pill taking). All others reported between one and seven incidents of medication nonadherence in the past month. The mean duration of participants’ HIV-positive serostatus knowledge was 7.4 years (median=6; range=1 month to 20 years).
Perceived and Enacted HIV and Sexual Orientation-Related Stigma
Two-thirds of participants (n=18) reported experiences that they felt were stigmatizing or discriminatory. In almost all instances, these experiences involved interactions with persons outside of their immediate social circles. One theme that emerged was related to others expressing negative reactions when the topic of HIV infection arose during a casual conversation:
I might have been around people who, not out of malice, sometimes talk about this illness from a negative perspective.
(Participant B43, the code that indicates study ID # B and the age of 43).
And the guys would say, “If they found out, like someone told them, that a person has HIV, they immediately reacted like, ‘No, no, no, not HIV, goodbye!’”
(I33)
Some instances of stigmatizing interactions were related to the participant’s own HIV status:
There was this guy I was dating. When I told them about my status, they reacted with very rude, foolish, and unkind behaviors, and that’s the end of it. There was another person with whom I had an ongoing sexual relationship. After we had a break, when I came back to him and told him about it [HIV], he also distanced himself a lot. Well, that’s it.
(O25)
Stigmatizing attitudes from medical personnel in non-HIV-specialized clinics towards HIV-positive or sexual minority patients were also reported:
I went to a dental clinic, and the dentist and the entire staff had a negative attitude towards me after I disclosed my HIV status… I vividly noticed that they printed “HIV+” on my medical record in such large letters, and their attitude towards me became somewhat arrogant and discriminatory. It was an unpleasant and hurtful moment.
(R24)
I was dissatisfied when I went to my local polyclinic to see a urologist based on the doctor’s recommendation. The urologist looked at me as if I were a leper and sent me to an infectious disease specialist. Luckily…, he [the specialist] had been my attending physician during my time at the [HIV care] hospital, and he remembered me… He asked, “Why did the urologist send you to me?” I replied, “Because I am supposedly HIV-positive.” He said, “So what’s the problem? You are on therapy.” I asked him if he could talk to his colleague about it. In the end…, I haven’t returned to that urologist since. It’s disappointing that someone in the medical field doesn’t know about HIV, and they fear it like fire. I consider it to be incompetence on the part of the doctor.
(C37)
One-third of informants (n=8) reported experiencing intersectional stigma associated with HIV and sexual orientation:
When I was admitted to the hospital, the head of the ward…, while processing my documents…, looked at my papers. I had a medical record from the AC [AIDS Center] clinic and so on. And I was asked, ‘And you what? Are you HIV-positive? Are you what, gay? Probably, you gays were punished by God for that!’ You know, when you turn to a medical institution, where you expect to receive help, and you hear such things…, it weighs heavily on me.
(T30)
Indeed, to some extent, I felt a sense of danger, a feeling that I was already discriminated against at one point because of my non-traditional sexual orientation, and now, because of my HIV status, I was facing discrimination once again. It made me acutely aware of the need for support during that time.
(R24)
In some cases, stigmatizing and judgmental attitudes were expressed by other HIV-positive MSM in forms of group discussion or rumors:
And once again, in the same [support] group, there is a person who said something like: “Well, he got infected because he slept around and caught a bug!”
(U)
HIV Serostatus Disclosure: Positive and Negative Experiences
HIV Serostatus Disclosure Strategies
Disclosure of positive HIV status was a personally significant event in the lives of MSM living with HIV. Sharing with others about one’s HIV diagnosis affected relationships, determined the circle of potential supports, and impacted relationships, both positively or negatively. Most often, the respondents disclosed their status to close friends (n=24) and sexual partners (n=16):
With one person… I knew that he also had a positive HIV status. He was the first one to disclose [his own HIV status]. He is my friend, a very close friend, and we’ve been friends for a long time.
(H35)
We started dating, and I showed him the test results right away. He didn’t turn away from me and said, “I’m with you. It doesn’t scare me. I’m a reasonable and understanding person.”
(N33)
About one-third of participants (n=9) disclosed their HIV status to their female relatives such as mothers, sisters, or grandmothers:
Since my mom was the first among the family to know about all my problems, I came to her and honestly said, “Mom, this is what happened, I have HIV…” Mom said, “Well, okay, we survived a war, and we will get through this too, that’s it.”
(Q37)
Although uncommon, participants described instances in which they felt comfortable enough to disclose their serostatus to persons with whom they had weaker ties. For example, HIV was disclosed to a colleague who earlier shared having HIV-positive friends:
I knew that my colleague already had HIV-positive friends… even before I found out about my positive diagnosis. After I learned about my diagnosis, for some reason, I decided to simply share it with my colleague. I needed to speak out to someone, and so I spoke out. He was the first person.
(S30)
HIV status was sometimes disclosed to persons of similar social backgrounds (i.e., provincial MSM who seek life opportunities in large cities such as St. Petersburg) but with whom they had weak social ties:
Well, at that time, I wasn’t living [permanently] in St. Petersburg, and I didn’t have a large social circle there. In our city, there are always people who have moved here… We talked, and I shared the general outline of how and why I ended up there [in a treatment facility]. They were calm about it and said, “Alright, everything will be fine. The main thing is not to fall into any distress, sadness, or depression.” So, sometimes, I receive this kind of psychological support from them.
(F32)
Reactions of Others to One’s HIV Serostatus Disclosure
HIV-positive status disclosure to close people revealed three types of social reactions: positive, negative, and mixed or ambiguous. Very often participants felt that disclosure resulted in increased emotional support, care, or tangible support:
You know, at that moment [of disclosure], my mother was the one who supported me. Yes, she supported me the most.
(Q37)
We met with friends at a bar somewhere, and they could see that I was feeling down. They asked me, “What’s wrong?” So, I told them that I found out I have HIV… I thought it would be the end of our friendship. But they reacted quite sensibly. During that period, they were supportive, constantly calling, communicating, and meeting up [with me]. They didn’t leave me alone in all of this.
(E34)
Some participants shared negative experiences after disclosing their HIV-positive status, which included aggressive reactions, accusations, and unwillingness to communicate:
And, yes, there was also a guy I was dating, and when I told him about my status, he acted very rude, foolish, and unpleasant…
(O25)
You know, in my personal circle, I’ve encountered things like: “Well, you’re an AIDS carrier, damn it. That’s it, your life will end in death.” Well, I just turned away and left… Well, let God be their judge. What can I say?
(Q37)
Finally, participants sometimes reported mixed, ambiguous reactions of others to their disclosure. In some instances, participants reported that persons initially reacted to disclosure with positive and supportive attitudes but later stopped communicating with them:
Well, he somehow convinced me that we would be together, and at that moment, I decided: “Okay, fine, we’ll be together.” And, you know, like… we’d be together to our graves, and no one would fly away… Yeah, that’s how it was. And then, later on, after I agreed to it, he started to go silent, withdraw, and went on his way. Completely on his own. It was just sudden, abrupt cutting off of phone calls, not responding to messages, and not meeting up. And then, he vanished, went away, and didn’t show up. And that’s when I just sent everything to hell, got angry at the whole world.
(B32)
Some persons who had an initially negative reaction (i.e., being scared, not believing) later became supportive:
“Yes, he was the only one who supported me, and he was the only one who knew… Well, he asked me a question: “How much time do you have left?” In his understanding, it was like, well, that’s it, goodbye. A year, two, three, and then this… I’d bite the dust… He carried me [like a luggage] everywhere, for everything. Even… [when] I said, “Oh, I have to work,” he would reply, “No, your work can wait, we’re going there.”
(A43)
Reasons for Not Disclosing One’s HIV Serostatus
Most participants (n=17) expressed reluctance to disclose serostatus to persons with whom they had ties that they would describe as formal or more distant, often colleagues or acquaintances:
And those who don’t need to know about it, I don’t think they should know. And disclosing my HIV status to too many people, to those who don’t need to know, who are not part of my personal circle, who are not among my closest people… I believe there’s no obligation for them to know.
(K42)
Some participants lacked closeness even within their immediate families and did not disclose their serostatus even to family members:
Umm… my family doesn’t know because I have quite formal relationships with my parents, within the family circle, and we are all disconnected. We don’t have, umm… a uniform understanding of [what makes us] a family. To some extent, we are like imitation of a family, something that like kind of exists, but kind of doesn’t.
(R24)
Another reason for not disclosing one’s HIV serostatus was fear of rejection by close people and an expectation that disclosure could harm or negatively impact existing relationships with them (n=8):
[I’d not disclose HIV status to my friends] to keep them from worrying too much, you know. And perhaps, partly, I’m afraid that they will, let’s say, reject me, turn away. Yeah.
(E34)
Participants sometimes felt that HIV status disclosure could be troublesome news to close people and for that reason wanted to keep them unaware of their status:
I probably will never tell [my mother] because I don’t want to traumatize her… she’s already quite old, and she has enough stress as it is. I don’t want to cause her discomfort and make her worry even more about me.
(N33)
Some respondents (n=6) would not disclose their HIV status to people from whom they expected stigmatizing or discriminatory reactions:
For example, let’s consider the most obvious people, the parents. I would feel uncomfortable discussing it with them. Firstly, because they already have a certain worldview in which HIV-infected individuals are not quite considered regular people. I understand that they might change their attitude if I were to tell them… However, it’s not guaranteed to end well. That’s why I don’t even attempt to bring it up.
(M25)
It was generally perceived that male family members are less tolerant, and disclosure to them could result in negative consequences due to the perception of their intolerance:
Only my younger sister and mother know in the family, yeah. And she [mother] immediately said that it is better not to talk to father about it. And as of now, I don’t really discuss this topic with her either.
(V, unknown age)
Finally, reluctance to disclose HIV status was most frequently reported by participants who had negative experiences after disclosing their sexual orientation. There were cases when this occurred within a family:
Yes, because when I found out about my positive status, I hardly communicated with my relatives. By that time, I had already come out to them regarding my [sexual] orientation, but since it was met with negativity, there was no point in discussing anything further.
(D35)
From our conversations, I even know that [sigh] they don’t accept same-sex relationships. They outright reject it to the extent of… like in the old times… like in the past, there were… “Kunstkamera” [reference to a local museum’s ancient collection of human developmental anomalies], punishments… My family has a “concrete homophob”. We don’t discuss this topic anymore.
(H35)
Sometimes, negative reactions to sexual orientation disclosure were expressed by persons outside of participants’ social circles:
I went to see a psychologist, and they gave me an example: “Long ago, in the Middle Ages, sailors took sheep and slept with each other—it was a forced measure because there were no women around.” They tried to convince me that [under regular circumstances] love and relationships between men were impossible… I encountered an Orthodox priest who was trying to exorcise demons and devils of homosexuality from me; that’s what he said. It was all terrible and horrifying. There were people with whom we interacted, chatted, but… when they found out that I was “in the theme” [being gay] and that I have the “plus” [HIV-positive status], then… we kind of stopped communicating.
(R24)
Participants’ Strategies to Cope with HIV Stigma and Navigate Their Social Capital
Participants reported a range of strategies to cope with, reduce the impact of, and prevent exposure to stigma, as well as ways they navigate their social capital resources, mostly to reduce interactions with discriminating, non-accepting persons, and increase or build relationships with those who are more accepting.
One coping strategy was to conform and “passively” live through stigmatizing experiences, ignoring manifestations of stigma or psychologically minimizing its impact. Other participants said they proactively counteracted, while others acted to prevent their further exposure to stigma:
For a while, it was just unpleasant. And then, let’s say, I forgot about it, and that was it.
(E34)
I try not to show any emotions or react in such moments, although maybe I’m not always successful… Well, I just let it pass, don’t comment on it, and act as if I haven’t heard anything.
(M25)
Some participants took proactive steps to exclude or reduce the impact of stigma by minimizing or completely breaking ties with persons in their environment who displayed discriminatory or stigmatizing behaviors:
There was such a case in my life when I told someone that I have an HIV [infection]. Roughly saying, he sent me to hell. Later, that same person found me and said, “I’ve also become HIV positive. I want to have a relationship with you.” I replied, “Did you have to get infected with HIV first before considering a relationship with me?” If someone truly wanted to understand, they would have sought information, read and learned, and then understood. If they didn’t want to, then I move on…
(Q37)
Well, first of all, they threatened me, so I had to leave my hometown and go far away so that I wouldn’t bother them. According to their words, it was as if I posed a danger to their environment. I simply moved to another city, and it became easier for me to live and breathe.
(P37)
Participants also reported that they proactively sought to establish new social capital resources, expand their social circles, and counteract stigma. They often aimed to find new friends and sexual partners among other HIV-positive MSM, by informing others about their HIV status, actively engaging with LGBT and HIV campaigns, and combating ignorance and stigma:
I try to choose people to interact with who have HIV. That’s why I don’t encounter situations where someone accused me of infecting them… I tell people before getting closer… that I am on therapy and HIV positive. I’ve learned to communicate with others more productively, consciously, and thoughtfully.
(J43)
At first, I took it very hard, and it was difficult. I realized that I wouldn’t waste my life on people who don’t accept me, so I decided to take a stance of making my life high-quality, good, and peaceful. I chose to inform my partners in advance, to inform people in my environment, so that I could feel comfortable and avoid unexpected complications.
(R24)
Finally, participants sought social support from trusted members of their close circles, as well as from professionals. When they found support in their networks, a process of self-affirmation often began:
In a way, there was a feeling of danger, a sense that I was already discriminated against at one point due to my, let’s say, non-traditional sexual orientation, and now I was facing discrimination because of this [HIV status], and I just started to feel very keenly that I needed support. And that I needed to protect myself. That I had to stand up for myself, to defend my right to life, my right to have a voice, my right to speak up. I really felt this deeply, and I realized that I truly needed it.
(R24)
Discussion
This research demonstrated that stigma experienced by Russian MSM living with HIV infection is common and originates primarily from persons outside of their immediate social circles. At the same time, the study found that HIV serostatus disclosure was often used as a strategy to increase social support associated with HIV care important for well-being. Apart from the strategies to gain support, participants identified a range of positive strategies that helped them to cope with HIV stigma, from resilience to its exposure to actively educating others.
This study delved into stigmatizing lived social experiences encountered by MSM living with HIV in Russia, a hidden and hard-to-reach group. Participants reported various manifestations of stigma within their families, relationships, and clinical care settings, and even among other PLH MSM. Intersectional stigma associated with both HIV and sexual orientation had a particularly negative impact. In this sample, PLH MSM were less likely to disclose their HIV status to persons with whom they had a prior negative experience when disclosing their sexual orientation and—in addition—to male relatives, to persons with whom they had weaker ties, to close persons who might become distressed, and to elderly relatives.
The research explored the role of HIV serostatus disclosure as a protective factor to counteract stigma. It also identified specific social capital resources for PLH MSM—including members of participants’ own broad life support networks—to whom it was helpful to disclose their HIV status. Female family members and close MSM friends of either HIV status were most supportive following disclosure. MSM living with HIV infection also used strategies like developing new social ties with HIV-positive individuals for friendships or as romantic partners. This was especially important to PLH MSM who lacked support in their existing environments or faced stigma and social rejection from those with whom they had established relationships.
Finally, the study identified other strategies that participants felt were helpful in coping with HIV stigma. A passive approach was commonly reported in which stigma experiences were ignored or not taken “too seriously”. Some participants minimized or stopped interacting with such persons. However, other participants took more proactive approaches such as trying to engage stigmatizing persons in dialogue, educate others about HIV, and change their stigmatizing attitudes. Other interviewees felt it important to combat stigma at a societal level. Finally, an important approach was seeking social support from trusted members of the circles of persons close to them.
The study has several limitations. First, the study was carried out in a single city. Even in-depth interviews may underreport experiences that were emotionally traumatizing or too unpleasant to be discussed. The interview guide focused on disclosure and did not fully address the interaction of social support with mental health, well-being, or resilience. Finally, we did not record the HIV care nonadherence eligibility category for participants during their enrollment.
Future research should address these gaps and identify intervention strategies to reduce the negative impacts of stigma on the health of MSM living with HIV in Russia. This study offers valuable insights into their coping strategies, and it highlights the importance of social environments and social capital resource networks in establishing trust, stigma-free, and supportive relationships. This study also illustrates how PLH MSM can be assisted in establishing relationships supportive of their health and well-being. Finally, disclosing one’s serostatus to supportive others was seen as a positive coping strategy, provided that PLH MSM carefully consider to whom to disclose so that it is safe and beneficial. Developing and mobilizing affirmative social capital resources can significantly impact the lives of MSM living with HIV in Russia, and represents a promising approach for improving psychosocial well-being, engaging with HIV care, and achieving improved treatment outcomes.
Acknowledgments
The authors extend their appreciation to Anastasia Amirkhanian, Rudolph Amirkhanian, Maria Donskaya, Dmitry Mescheryakov, Vladimir Musatov, Dmitry Pirogov, and Alexey Yakovlev, and the study participants for their contribution to this research.
Funding Details:
This work was supported by the US National Institute of Mental Health (NIMH) under grant R34-MH125715
Footnotes
Author Contributions Statement:
All authors were involved in the conception and design and approved the final version to be published; A.Y.M. and A.V.K. were involved in the analysis and interpretation of the data; Y.A.A. and J.A.K. were involved in the drafting of the paper; Y.A.A., J.A.K., A.Y.M., and K.G.Q. were involved in revising it critically for intellectual content. All authors agree to be accountable for all aspects of the work.
Declaration of Interest Statement: The authors declare they have no conflict of interest
Data Availability:
Following publication, the study data will be available by contacting the first author at yuri@mcw.edu
References
- Alemu H, Haile Mariam D, Tsui A, Ahmed S, & Shewamare A (2012). Effect of depressive symptoms and social support on weight and CD4 count increase at HIV clinic in Ethiopia. AIDS Care, 24(7), 866–876. [DOI] [PubMed] [Google Scholar]
- Amirkhanian YA, Kelly JA, DiFranceisco WJ, Kuznetsova AV, Tarima SS, Yakovlev AA, & Musatov VB (2018). Predictors of HIV Care Engagement, Antiretroviral Medication Adherence, and Viral Suppression Among People Living with HIV Infection in St. Petersburg, Russia. AIDS and Behavior, 22(3), 791–799. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Amirkhanian YA, Kelly JA, DiFranceisco WJ, Tarima SS, McAuliffe TL, & Kuznetsova AV (2022). People living with HIV in St. Petersburg, Russia: gender and exposure group differences in HIV care engagement, psychosocial health, substance use, and transmission risk behavior. AIDS Education and Prevention, 34(3), 226–244. [DOI] [PubMed] [Google Scholar]
- Azhar S, & Gunn AJ (2021). Navigating Intersectional Stigma: Strategies for Coping Among Cisgender Women of Color. Qualitative Health Research, 31(12), 2194–2210. [DOI] [PubMed] [Google Scholar]
- Batchelder AW, Foley JD, Wirtz MR, Mayer K, & O’Cleirigh C (2021). Substance Use Stigma, Avoidance Coping, and Missed HIV Appointments Among MSM Who Use Substances. AIDS and Behavior, 25(5), 1454–1463. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Bernard HR (1995). Research methods in anthropology: Qualitative and quantitative approaches (2nd ed.). Sage. [Google Scholar]
- Bourdieu P (1987). What Makes Social Class? On the Theoretical and Practical Existence of Groups. Berkeley Journal of Sociology, 32, 1–8. [Google Scholar]
- Brown MJ, Serovich JM, Laschober TC, Kimberly JA, & Lescano CM (2020). Ways of coping and perceived HIV-related stigma among people living with HIV: moderation by sex and sexual orientation. Psychology, Health & Medicine, 25(7), 867–878. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Coleman J (1990). The foundations of social theory. Harvard University Press. [Google Scholar]
- Coleman J (1988). Social capital in the creation of human capital. American Journal of Sociology, 94(Suppl.), S95–S120. [Google Scholar]
- Davis A, Pala AN, Nguyen N, Robbins RN, Joska J, Gouse H, Mellins CA, Myer L, Henry M, Leu CS, & Remien RH (2021). Sociodemographic and psychosocial predictors of longitudinal antiretroviral therapy (ART) adherence among first-time ART initiators in Cape Town, South Africa. AIDS Care, 33(11), 1394–1403. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Desrosiers A, Blokhina E, Krupitsky E, Zvartau E, Schottenfeld R, & Chawarski M (2017). Psychiatric symptoms, quality of life, and HIV status among people using opioids in Saint Petersburg, Russia. Drug and Alcohol Dependence, 172, 60–65. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Earnshaw VA, Lang SM, Lippitt M, Jin H, & Chaudoir SR (2015). HIV stigma and physical health symptoms: do social support, adaptive coping, and/or identity centrality act as resilience resources?. AIDS and Behavior, 19(1), 41–49. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Edelman EJ, Lunze K, Cheng DM, Lioznov DA, Quinn E, Gnatienko N, Bridden C, Chaisson CE, Walley AY, Krupitsky EM, Raj A, & Samet JH (2017). HIV Stigma and Substance Use Among HIV-Positive Russians with Risky Drinking. AIDS and Behavior, 21(9), 2618–2627. [DOI] [PMC free article] [PubMed] [Google Scholar]
- European Centre for Disease Prevention and Control. (2022). HIV continuum of care. Monitoring implementation of the Dublin Declaration on Partnership to Fight HIV/AIDS in Europe and Central Asia: 2021 progress report. https://www.ecdc.europa.eu/sites/default/files/documents/Dublin-Continuum-of-HIV-care-2021-progress-report-final-with-covers-updated.pdf
- Frumence G, Killewo J, Kwesigabo G, Nyström L, Eriksson M, & Emmelin M (2010). Social capital and the decline in HIV transmission - A case study in three villages in the Kagera region of Tanzania. SAHARA J: Journal of Social Aspects of HIV/AIDS Research Alliance, 7(3), 9–20. [DOI] [PubMed] [Google Scholar]
- Gibbs A, Campbell C, Akintola O, & Colvin C (2015). Social contexts and building social capital for collective action: three case studies of volunteers in the context of HIV and AIDS in South Africa. Journal of Community and Applied Social Psychology, 25(2), 110–122. [Google Scholar]
- Goodness TM, Palfai TP, Cheng DM, Coleman SM, Bridden C, Blokhina E, Krupitsky E, & Samet JH (2014). Depressive symptoms and antiretroviral therapy (ART) initiation among HIV-infected Russian drinkers. AIDS and Behavior, 18(6), 1085–1093. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Hall JM, & Stevens PE (1991). Rigor in feminist research. ANS. Advances in Nursing Science, 13(3), 16–29. [DOI] [PubMed] [Google Scholar]
- Holtgrave DR, & Crosby RA (2003). Social capital, poverty, and income inequality as predictors of gonorrhoea, syphilis, chlamydia and AIDS case rates in the United States. Sexually Transmitted Infections, 79(1), 62–64. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Kelly JA, & Amirkhanian YA (2003). The newest epidemic: a review of HIV/AIDS in Central and Eastern Europe. International Journal of STD & AIDS, 14(6), 361–371. [DOI] [PubMed] [Google Scholar]
- Kiriazova T, Lunze K, Raj A, Bushara N, Blokhina E, Krupitsky E, Bridden C, Lioznov D, Samet JH, & Gifford AL (2017). “It is easier for me to shoot up”: stigma, abandonment, and why HIV-positive drug users in Russia fail to link to HIV care. AIDS Care, 29(5), 559–563. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Knowlton AR, Arnsten JH, Gourevitch MN, Eldred L, Wilkinson JD, Rose CD, Buchanan A, Purcell DW, & INSPIRE Study Team. (2007). Microsocial environmental influences on highly active antiretroviral therapy outcomes among active injection drug users: the role of informal caregiving and household factors. Journal of Acquired Immune Deficiency Syndromes (1999), 46(Suppl. 2), S110–S119. [DOI] [PubMed] [Google Scholar]
- Kuznetsova AV, Meylakhs AY, Amirkhanian YA, Kelly JA, Yakovlev AA, Musatov VB, & Amirkhanian AG (2016). Barriers and Facilitators of HIV Care Engagement: Results of a Qualitative Study in St. Petersburg, Russia. AIDS and Behavior, 20(10), 2433–2443. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Pecoraro A, Mimiaga M, O’Cleirigh C, Safren SA, Blokhina E, Verbitskaya E, Yaroslavtseva T, Ustinov A, Lioznov DA, Zvartau E, Krupitsky E, & Woody GE (2015). Depression, substance use, viral load, and CD4+ count among patients who continued or left antiretroviral therapy for HIV in St. Petersburg, Russian Federation. AIDS Care, 27(1), 86–92. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Poundstone KE, Strathdee SA, & Celentano DD (2004). The social epidemiology of human immunodeficiency virus/acquired immunodeficiency syndrome. Epidemiologic Reviews, 26, 22–35. [DOI] [PubMed] [Google Scholar]
- Putnam RD (1993). Making democracy work: Civic traditions in modern Italy. Princeton University Press. [Google Scholar]
- Perlson J, Scholl J, Mayer KH, O’Cleirigh C, & Batchelder AW (2021). To Disclose, Not Disclose, or Conceal: A Qualitative Study of HIV-Positive Men with Multiple Concealable Stigmatized Identities. AIDS Patient Care and STDs, 35(2), 47–55. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Quinn K, Bowleg L, & Dickson-Gomez J (2019). “The fear of being Black plus the fear of being gay”: the effects of intersectional stigma on PrEP use among young Black gay, bisexual, and other men who have sex with men. Social Science and Medicine, 232, 86–93. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Quinn KG, Dickson-Gomez J, Pearson B, Marion E, Amikrhanian Y, & Kelly JA (2022). Intersectional Resilience Among Black Gay, Bisexual, and Other Men Who Have Sex With Men, Wisconsin and Ohio, 2019. American journal of public health, 112(S4), S405–S412. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Quinn K, Dickson-Gomez J, Broaddus M, & Kelly JA (2018). “It’s Almost Like a Crab-in-a-Barrel Situation”: Stigma, Social Support, and Engagement in Care Among Black Men Living With HIV. AIDS Education and Prevention, 30(2), 120–136. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Quinn KG, Dickson-Gomez J, Craig A, John SA, & Walsh JL (2023). Intersectional Discrimination and PrEP use Among Young Black Sexual Minority Individuals: The Importance of Black LGBTQ Communities and Social Support. AIDS and Behavior, 27(1), 290–302. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Ransome Y, Galea S, Pabayo R, Kawachi I, Braunstein S, & Nash D (2016). Social capital is associated with late HIV diagnosis: An ecological analysis. Journal of Acquired Immune Deficiency Syndromes, 73(2), 213–221. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Remien RH, Hirky AE, Johnson MO, Weinhardt LS, Whittier D, & Le GM (2003). Adherence to medication treatment: a qualitative study of facilitators and barriers among a diverse sample of HIV+ men and women in four US cities. AIDS and Behavior, 7(1), 61–72. [DOI] [PubMed] [Google Scholar]
- Ransome Y, Batson A, Galea S, Kawachi I, Nash D, & Mayer KH (2017). The relationship between higher social trust and lower late HIV diagnosis and mortality differs by race/ethnicity: results from a state-level analysis. Journal of the International AIDS Society, 20(1), 21442. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Rotheram-Borus MJ, Stein JA, Jiraphongsa C, Khumtong S, Lee SJ, & Li L (2010). Benefits of family and social relationships for Thai parents living with HIV. Prevention Science, 11(3), 298–307. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Sandelowski M (1986). The problem of rigor in qualitative research. ANS. Advances in Nursing Science, 8(3), 27–37. [DOI] [PubMed] [Google Scholar]
- Sarang A, Rhodes T, & Sheon N (2013). Systemic barriers accessing HIV treatment among people who inject drugs in Russia: a qualitative study. Health Policy And Planning, 28(7), 681–691. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Serovich JM, Grafsky EL, & Reed S (2010). Comparing regret of disclosing HIV versus sexual orientation information by MSM. AIDS Care, 22(9), 1052–1059. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Slater LZ, Moneyham L, Vance DE, Raper JL, Mugavero MJ, & Childs G (2013). Support, stigma, health, coping, and quality of life in older gay men with HIV. The Journal of the Association of Nurses in AIDS Care: JANAC, 24(1), 38–49. [DOI] [PubMed] [Google Scholar]
- Sullivan KM (2005). Male self-disclosure of HIV-positive serostatus to sex partners: a review of the literature. Journal of Association of Nurses in AIDS Care, 16(6), 33–47. [DOI] [PubMed] [Google Scholar]
- Spradley JP (1980). Participant observation. Holt Rinehart & Winston. [Google Scholar]
- Turan B, Hatcher AM, Weiser SD, et al. (2017). Framing mechanisms linking HIV-related stigma, adherence to treatment, and health outcomes. American Journal of Public Health, 107, 863–869. [DOI] [PMC free article] [PubMed] [Google Scholar]
- UNAIDS. (2020) UNAIDS data 2020. https://www.unaids.org/sites/default/files/media_asset/2020_aids-data-book_en.pdf
- UNAIDS. (2023a). AIDSinfo—UNAIDS epidemiological estimates. https://www.unaids.org/en/resources/documents/2023/HIV_estimates_with_uncertainty_bounds_1990-present
- UNAIDS. (2023b). The path that ends AIDS: UNAIDS global AIDS update. https://www.unaids.org/sites/default/files/media_asset/2023-unaids-global-aids-update_en.pdf
- VERBI Software. (2013). MAXQDA (version 11.0.2) [computer software]. VERBI Software. [Google Scholar]
- Vyatchina MV, Kashnitsky DS, Barskiy KA, Abrosimova ZB, & Fedoryak AV (2021). Situatsionnyy analiz po voprosam predostavleniya meditsinskikh uslug v svyazi s VICH dlya inostrannykh grazhdan — migrantov v Rossiyskoy Federatsii [Situational analysis of access to HIV services for foreign migrants in the Russian Federation]. Regional Expert Group on Migration and Health, Moscow. https://migrationhealth.group/wp-content/uploads/2021/04/Situatsionnyj-analiz-migranty-s-VICH-v-Rossii-4.pdf
- Ware NC, Idoko J, Kaaya S, Biraro IA, Wyatt MA, Agbaji O, Chalamilla G, & Bangsberg DR (2009). Explaining adherence success in sub-Saharan Africa: an ethnographic study. PLoS Medicine, 6(1), Article e11. 10.1371/journal.pmed.1000011 [DOI] [PMC free article] [PubMed] [Google Scholar]
- World Life Expectancy. (n.d.). HIV/AIDS death rate per 100,000, age standardized. https://www.worldlifeexpectancy.com/cause-of-death/hiv-aids/by-country/
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
Following publication, the study data will be available by contacting the first author at yuri@mcw.edu