Study setting

Between January and February 2022, we conducted semi-structured individuals interviews with 30 SMM living with HIV in Lagos, Nigeria and 38 healthcare providers (HCPs) that provide HIV prevention and care services to SMM. We included perspectives from HCPs because future interventions aimed at improving HIV outcomes for SMM in Nigeria will likely involve them, reinforcing the importance of including them in the current research project. The following inclusion criteria applied to SMM: (1) biologically assigned male sex at birth, (2) 18 years or older; (3) current residence in Lagos, Nigeria, (4) has engaged in oral or anal sex with at least one birth-assigned male partner in the previous year, and (5) lab-confirmed HIV positive diagnosis. Additionally, transgender women were excluded from participation due to differences in lived experiences compared to SMM. Specifically, transgender women have experiences related to their gender expression, presentation, and conformity (or lack thereof) to societal expectations of gender performance that cisgender SMM don’t experience. Additionally, renowned researchers within the field of HIV prevention and treatment have called for the need to study transgender populations, separate from SMM, especially within the African context [21–23]. The following inclusion criteria applied to healthcare workers: (1) 18 years or older, (2) current professional certification, and (3) at least 6 months’ experience providing services to SMM in Nigeria. SMM were recruited (between December 2021 and February 2022) through a local community-based organization (CBO) that provides sexual health services to SMM in Lagos, Nigeria. Outreach workers at the CBO shared information about the study with the target population during programming events and provided study contact information to individuals who expressed interest. HCPs included staff at the partner CBO and other health organizations that serve SMM in Lagos, Nigeria.

Procedures

All study procedures were approved by the institutional review boards at Harvard University (Protocol #: IRB21–0914). Written informed consent was obtained from all participants before completing any study-related activities. We assigned each participant a unique four-digit identifier and did not collect any identifying information to maintain confidentiality. Individual interviews were conducted in a private office at the partner CBO. Interviews were conducted entirely in English and digitally recorded. Each interview lasted about 1.5 hours. The interviews explored the following topics: cultural context and lived experiences of SMM in Nigeria; experiences with various types of stigmas (enacted, structural, community, anticipated, and intersectional); coping mechanisms; and engagement in HIV care. We also collected demographic data from all participants. Upon completion of the interview, participants were compensated in Nigerian naira, equivalent to 20 U.S. dollars ($20).

Data analysis

We utilized a thematic data analysis approach for the current study. A thematic analysis identifies, analyzes, and reports themes found within a qualitative dataset [24]. The interview transcripts were compiled in Microsoft Excel 2024, and a comprehensive data analysis was conducted in NVivo 14. A member of the study team read the interview transcripts and generated codes based on pertinent interviewee responses to the questions. The codes for each question of interest were then analyzed and categorized into themes. The analysis was inductive (data-driven), with codes and themes generated from the data, rather than deductive (or driven by a theoretical framework). After initial coding was completed, 15% of randomly selected transcripts were double-coded by a second senior study team member. The resulting interrater reliability was 88%.

HIV stigma

Experiences of HIV-related stigma described by participants primarily fell into two stigma categories: anticipated and enacted. Participants more commonly reported anticipated stigma than enacted stigma. Participants attributed this to an individual’s HIV status not being easily observable and the proliferation of sensitization efforts to reduce HIV-related stigma in the general population.

Anticipated stigma (expectations of experiencing stigmatizing events): Participants described expecting discrimination from others because of their HIV status. Specifically, participants expected to be discriminated against if their HIV status became known to others. This was due to participant uncertainty around the type of response knowledge of their HIV status would elicit. As a result, many participants hid their HIV status, ARTs, and information about their HIV care from family, friends, and society at large, including other members of the SMM community:

“I hide my HIV status because the stigma is still there…. Some people will say, ‘Please don’t come and give me HIV.’ So, I hide my HIV status, so that people will not stigmatize me.”

An HCP echoed these sentiments by sharing how their SMM clients, at the point of starting HIV care, hide their HIV status, including from family members:

“Most of them don’t want their family members to know. At the point of enrollment, they will tell you, we don’t want anybody to disclose our status to anybody, and they will even tell you that ‘when my appointment is due, I’ll come to the facility to come and pick up my drugs, nobody should call me.’”

Enacted stigma (direct experiences of prejudice, discrimination, and stereotyping based on a specific attribute): Respondents shared experiences of stigma due to their HIV status. An HCP narrated the experience of a former client:

“I had a client who tested positive for HIV, and the client started taking his HIV drugs. His roommate asked about the new medicine he was taking. He told his roommate that it’s an immune booster drug, but the roommate did not believe, and googled the name of the drug. He found out that he was living with HIV and began stigmatizing him. When he went back to the house, he said he observed that the roommate had changed. The roommate had separated his items including clothes and cutlery from his own. He also said everybody was now cold, that he felt that his roommate had told people in the hostel.”

Sexual minority stigma

Participants described varied experiences of stigma (anticipated, community, enacted, and structural) related to their known or perceived sexual minority status.

Anticipated stigma: Participants anticipated discrimination from others due to their sexual orientation, which affected their public presentation and relationships with others. Anticipated stigma resulted in participants concealing their sexual orientation by hiding aspects of their identity to reduce stigmatizing experiences:

“Almost every day, and anywhere I go, I don’t tell people that I’m a gay because I know that I’m not accepted.”

An HCP highlighted cases where clients might be inclined to hide their sexual orientation from healthcare staff:

“They really don’t want you to know their sexual preference because they don’t know how you’re going to feel about it. I tell them, ‘don’t worry, we are one. Just be plain to me so that I know how to provide service.’”

Community stigma (experiences within physical neighborhoods): Participants described enduring stigma in their residential neighborhoods. An HCP shared the story of a client who was a hairdresser and experienced stigma due to his perceived sexual orientation:

“I know one client who is gay and has issues in his community. He is into hairdressing, and that was shattered because in the community where he stays, he is stigmatized for his sexual orientation. Now, he only makes hair for a few young ladies, and it will be inside his house. He could not even explore his career; he was limited because of the stigma he would experience in the outside world.”

Enacted stigma: Beyond experiences of stigma in their neighborhoods, participants described experiences of stigmatization when their sexual orientation was known or suspected and how that sometimes led to extortion and physical violence. One respondent shared their experience of being extorted by a soldier because of their sexual orientation:

“I logged onto Grindr (social networking app), and I was chatting with this person. He wanted me to come to his house, but I was not comfortable with that, so we agreed to meet at a bar. We chatted on WhatsApp and did a video call, so I felt safe. I went to meet the person but unknown to me, it was a set-up and a soldier walked up to me and grabbed me from the back. I was apprehensive so I begged him, but he said that before he could release me, I had to pay. He withdrew all the money in my bank account, collected my phone and my school ID card.”

Another respondent shared the experience of a sexual minority man living with HIV who was also set up and taken to the police station because of his sexual orientation. As a result of the arrest, his family found out about his sexual orientation and HIV status. He recounted that:

“His dad just threw him out because he’s gay and HIV positive. But the mom started crying and was pleading. Later his dad accepted him back but for some months, his dad didn’t talk to him.”

Experiences of discrimination and unfair treatment within an institutional setting were also mentioned. An HCP described the stigmatizing experience of a client who was previously receiving care at a general hospital:

“He discovered that whenever he went there to get these [HIV] drugs, the people working in that health center would watch him and make jest of him. Some even started calling him ‘Sister Segun.’ So, from there, when that thing [stigma] is getting too much, he was like, he can’t bear it again. So, he stopped going there.”

HIV stigma versus sexual minority stigma

Both SMM and their HCP believed sexual minority identity stigma to be more common than HIV-related stigma. In addition, HIV is not unique to the SMM community and is now better understood because of general public HIV sensitization campaigns:

“In Nigeria, the stigma from living with HIV is less compared to the stigma of being a sexual minority man. People are beginning to know that you can use medication for HIV, and it can get to a point where you won’t infect someone else. So, the stigma is reduced. But most people still believe being a sexual minority man is a mental disorder.”

HIV stigma was believed to emanate more within the SMM community, while sexual minority stigma was thought to be from the larger society:

“They [SMM] face more stigma from being HIV positive and less from being SMM depending on the community. Within the SMM community, their sexual orientation is not a problem, but their HIV status is a problem. Within society at large, they don’t have a problem with you being HIV positive. They have a problem with you being SMM. So, it can vary depending on what you’re talking about.”

Intersectional stigma

Participants believed they experienced intersectional stigma, especially enacted and anticipated stigma, from their HIV status and sexual minority identity. Their responses showed that they mainly experienced anticipated stigma. Additionally, some participants expressed some signs of internalized stigma through their linking of their HIV status to their sexual minority identity:

“It interacts. Because there are times that I used to feel if I’m not a sexual minority man, maybe I wouldn’t be living with HIV.”

Explaining how both identities can interact, some respondents described the heavy burden of holding multiple stigmatized identities:

“The[y] do interact because for someone that’s only SMM, he’s only having to worry about the SMM identity. Someone who is only HIV positive is only having to worry about being HIV positive. Now having the two of them even becomes more difficult as you don’t have so many people you can relate with as much as those who are only HIV positive, or those who are only SMM.”

“You know, it’s a different thing, if you are gay or you are HIV positive, but being gay and at the same time being HIV positive is more like an overload, something heavy. It’s more like you’re carrying a lot of burden. It’s more like, ‘you know what? any moment from now I’m going to drop dead.’ So, I mean that’s a lot.”

Participants also mentioned a few instances where they faced greater stigmatization because of the interaction of their HIV status and sexual orientation. An HCP described the experience of a client at a previous healthcare facility that was made worse with the discovery of his two identities:

“A client was perceived to be effeminate. The nurses were somewhat irritated and were asking themselves, ‘why is he acting like a woman?’ but the client was just downcast and wanted to be attended to. His attitude was, ‘I came here to seek help, so you people should just attend to me and let me go.’ To worsen this guy’s situation, they found out he was HIV positive when they ran their tests. So, it became worse and what he got after then was judgment.”

Respondents also alluded to the belief that individuals known or perceived to be sexual minority men are automatically believed to be living with HIV:

“I have a friend whose aunt said, ‘HIV is a gay’s man sickness, it’s the homosexual’s sickness’ she added that ‘it’s God’s punishment to the homosexuals.”

Stigma coping strategies

Respondents adopted several strategies, both negative and positive, to cope with experiences of stigma. The most common strategy mentioned was self-acceptance, while their HCPs most often mentioned having a support system. Other coping mechanisms cited by the participants include substance use, identity concealment, social isolation, support systems, and engaging in various hobbies as a form of self-care.

Substance use

Some participants utilized substances to cope with stigma. Marijuana use, heavy alcohol consumption, and other drug use were common:

“Smoking has really been my companion. When I sit down and start thinking of my life and what my sexuality and HIV status has caused me, it weighs heavy on me. But when I sit down to smoke and drink, I will just be happy.”

An HCP reinforced substance use as a common coping strategy for many of his clients:

“I have many of them that are into drugs and it’s because they cannot cope with people bombarding them with stigma. They get involved in different types of drugs.”

Identity concealment

Another stigma coping strategy employed by participants was taking the necessary steps to conceal their stigmatized identities. They did not freely disclose their HIV status and sexual minority status because they expected it to lead to discrimination:

“I hide both my identities, like my sexuality and my HIV status. I make sure I hide both because our society today is not accepting.”

Respondents also hid their identities by changing mannerisms that may not conform to societal expectations of gender performance:

“It’s my walking. I’ve really worked on hiding it. Now, I tend to walk very masculine so that people will not be able to talk to me anyhow. They might fear me, ‘ah! This one can beat somebody o.’ Yes, I try to change how I walk, how I behave, and how I talk, and I started growing beard so I can look very manly.”

One HCP described the lengths their clients go to hide their identities, including:

“There are certain things they don’t say in public, and they have a lot of passwords on their phones. Messages are passworded, everything on their phone is passworded. All this is to avoid stigmatization by keeping people out.”

Social isolation

Participants described avoiding social situations that might involve human interaction as a coping mechanism for stigma:

“I just don’t go out. I can stay indoors. if I have electricity, and I have internet, and I have my subscriptions, I can live through a lot of those things.”

While this worked well for some respondents, it did not work so well for others. One of the respondents broke down in tears, explaining how social isolation has been difficult as a coping mechanism:

“It’s not easy. I was just by myself. I don’t have any friends, so it has just been me and me alone. [Respondent crying].”

Self-acceptance

Participants dealt with stigma through self-acceptance and refusal to dwell on their negative experiences:

“I’ve made peace with myself. I’ve read a lot and I’ve come to terms with my identities. I don’t allow all these to bother me anymore. It doesn’t really get to me. I live my life as normal and there have been times when I tell people who just got diagnosed with HIV, that I’m also living with HIV. I just live my life as normal as everybody out there, so it doesn’t really get to me. It doesn’t really weigh me down.”

Support systems

Respondents, especially the HCPs, mentioned that SMM living with HIV relied on support systems to cope with stigmatization. Their support system consisted of peers in the community, healthcare facility, and various support groups:

“I thank God that we still have friends around us that help us to build confidence. It has not been easy being a SMM living with HIV. Friends have been very helpful. We try to build ourselves and give ourselves courage. We go out to just take ourselves out of thinking and depression. How do we conquer depression? Sometimes we just go out, meet a friend. We gist, laugh, you know, just do those things to keep ourselves together. If not, there’ll be a lot of problems. There’ll be a lot of suicide.”

“Before, I isolated myself, which caused me a great deal of depression. Then I realized that wasn’t helping me. All I just need to do is be myself, be happy, be around people that love me and that care for me. That has really helped me because most times when I feel down, I have places to go to. I just call a friend and ask ‘how are you doing? Are you home? I’m coming over.’ I’ll just go there chill and in no time, I’m not even thinking about my issue anymore.”

Various HCPs echoed these sentiments:

“Some of them [SMM] get integrated into the community and they relate with their peers. I have seen cases where a person moves out of their parents’ house to start squatting with another SMM who understands them. So, they largely withdraw from the environment where there is stigmatization.”

Hobbies as self-care

Respondents mentioned using activities such as listening to music, going to the gym, praying, and immersing themselves in work as coping mechanisms:

“The first coping mechanism that I employed back then was listening to music every time with earphones. I was always on earphones every single time to like, not listen to whatever anybody’s saying and just be on my own. It helped a lot.”

Impact of stigma on engagement in HIV care

There were divergent opinions on the impact of stigma on engagement in HIV care. While most HCP believe that stigma negatively influenced SMM ability to engage in HIV care fully, most SMM believed stigmatization had minimal to no effect on their engagement in care. Interestingly, both clients and HCPs noted how stigma might motivate and encourage engagement in HIV care:

“The stigma has even encouraged me to stick to my drugs, to always come to the clinic on time, and to always come for my appointment. The stigma has encouraged me not to stop my medication, rather it has encouraged me to stick to it.”

“I’d say the impact has been positive. Everything that happens to a person will either cause a negative or positive response. For someone that knows that the stigma is getting too much, their mindset will be to eradicate the stigma. So, they would be taking the drug to get to that point where the virus becomes undetectable.”

Most of the clients claimed that stigmatization had no impact on their engagement with HIV care. They stated that they were determined to achieve better health outcomes, and the determination drove them to adhere to their care:

“I don’t think I should allow the stigma to affect me because I know what I am going for. I know what I want. It’s your goal that determines how you go about it. So, if I should be stigmatized, I’m hurting myself in that way and I don’t want to do that.”

This sentiment was echoed by HCPs:

“It doesn’t affect their medication, because they know how important it is for them to take their medication. So, they won’t want anything to even distract them from even taking their medication at all.”

Clients who maintained that stigmatization did not affect their engagement in HIV care mentioned changing their daily routines to conceal their engagement in care and to avoid stigmatization:

“Using meds would raise eyebrows, especially if you’re using your medication in front of people who you don’t want to know about your HIV status. I use my meds at nights before I sleep because if I use it during the day when everybody is up and about, they could start asking questions and I don’t want people to be in my business.”

The HCPs and some SMM noted that stigmatization harmed engagement in HIV care. They mentioned that stigmatization sometimes resulted in depression, which might keep SMM from accessing care or taking their medication:

“It has affected me negatively in the past. I was even stigmatizing my own self because I was taking the drugs and I was like, ‘how am I even sure this HIV is even real?’ Because people were always saying that, ‘You are taking drugs that are for HIV people. If you know that you are not HIV positive, then stop taking drugs.’ So sometimes I used to have that mindset that I’m not positive, then I’ll stop taking drugs. But later, it affected me very much, and then it affected my viral load. So, I had to realize that this is the only way I can fight this virus, not by listening to people’s negative talks.”

“Sometimes they don’t come in. When you call, they’ll say, ‘I’m not happy, and I’m tired of taking drugs every day.’ Then you know this one is already experiencing stigmatization. So, you just must engage in long conversation, ‘oh, you need to take this drug. You know how important this drug is, you just must stay alive so that you can fight against anything that is giving you issues.’”

They also mentioned instances of anticipated stigma, which discouraged clients from using their drugs or coming to the healthcare facility when they believed they would meet other people there:

“Because the people around them have not been able to accept them properly, taking their drugs in the presence of their friends has been a very big challenge. Some of them want to go to a hidden place to take their drugs and maybe when they’re in a very big place, some of them skip their drugs, which can in turn affect their adherence and the viral load. And then some of them even miss their clinic appointment because they don’t want to tell their friends, I want to go for whatever.”