Background
Methods
Participants and eligibility
Survey
Qualitative interview
Analysis
Results
Demographics
Factor | N (%) |
---|---|
Race/Ethnicity | |
Black/African American | 16 (100) |
Hispanic/Latino | 2 (13) |
White/mixed | 1 (6.3) |
NYC borough | |
Manhattan | 5 (3.1) |
Bronx | 8 (50) |
Brooklyn | 1 (6.3) |
Queens | 1 (6.3) |
Staten Island | 1 (6.3) |
Sexual identity | |
Gay/homosexual | 15 (94) |
Bisexual | 1 (6.3) |
Education | |
Some high school | 1 (6.3) |
Some college | 7 (44) |
Degree from vocational/technical school | 1 (6.3) |
Associate degree | 3 (19) |
Bachelor’s degree | 2 (13) |
Advanced degree | 2 (13) |
Employment status | |
Employed for wages | 10 (63) |
Self-employed | 2 (13) |
Unemployed and looking for work | 3 (19) |
Unemployed and not looking for work | 1 (6.3) |
Housing status | |
Currently housed | 14 (88) |
Currently homeless | 2 (13) |
Homeless in the past 12 months | 3 (19) |
Annual income | |
< $20,000 | 9 (56) |
$20,000 – $40,000 | 4 (25) |
$40,000 – $60,000 | 1 (6.3) |
> $100,000 | 2 (13) |
Health insurance | |
Yes | 15 (94) |
No | 1 (6.3) |
Relationship status | |
Single | 12 (75) |
Partnered | 2 (13) |
Married | 2 (13) |
STI diagnosis in the past year | |
Yes | 2 (13) |
Syphilis | 1 (6.3) |
Gonorrhea | 1 (6.3) |
No | 14 (88) |
Illicit drug use in the past year | |
Yes | 8 (50) |
Crack/cocaine | 1 (6.3) |
Ecstasy | 1 (6.3) |
Methamphetamine | 1 (6.3) |
Marijuana | 7 (44) |
Injection drugs | 1 (6.3) |
No | 8 (50) |
Past incarcerations in lifetime | |
Yes | 2 (13) |
No | 14 (88) |
Years in which participants first tested positive for HIV | |
1985–2000 | 3 (19) |
2001–2016 | 13 (81) |
Visited a healthcare worker for HIV-related medical care within 3 months of diagnosis? | |
Yes | 15 (94) |
No | 1 (6.3) |
Visited a healthcare worker for HIV-related medical care in the past year | |
Yes | 16 (100) |
No | 1 (0) |
Current trusting relationship with healthcare provider | |
Yes | 15 (94) |
No | 1 (6.3) |
Number of missed clinic appointments in the past year | |
0 | 11 (69) |
1 | 1 (6.3) |
2 | 2 (12) |
≥ 3 | 2 (12) |
Currently taking antiretroviral medications | |
Yes | 15 (94) |
No | 1 (6.3) |
Viral load | |
Undetectable (< 50 copies/mL) | 11 (69) |
≤ 75 copies/mL | 3 (19) |
Unknown | 2 (12) |
Qualitative findings
Themes | Subthemes | Theme description | Additional Representative Quotes |
---|---|---|---|
Diagnosis trauma | Direct trauma | Refers to perception of HIV as a fatal diagnosis, anticipated loss of life goals and dreams. | “When I first got diagnosed, I thought it was a death sentence … I was shocked, disappointed with myself, disappointed with the person that gave it to me, depressed, and that’s pretty much it.” (Participant 5, age 40s, diagnosed 2010s) “I was overwhelmed, but I didn’t cry … there was so much going wrong in my life it was just another slap in the face … It was so sterile, so detached from emotion. It was like I would have a year left to live” (Participant 10, age 30s, diagnosed 2010s) “I cried, I thought my life was over, I was like I’m not gonna be able to have any kids, if I tell my parents about this they’re gonna go absolutely nuts … after I found out I was homeless, I had to go into the SRO system … Once I got into my apartment I pretty much was bound (there), stopped hanging out with my friends, stopped going to school, didn’t even go grocery shopping first couple of months, just smoking weed all the time …. I probably missed a lot of appointments, I didn’t really deal with it (Participant 7, age 20s, diagnosed 2010s) The struggle became even more harder because I had other things that I had to tackle, but that’s what was really the difficult—was the anxiety and the depression, that—it’s just—it’s hard to even explain that mentally, if you have a weak mind and you’re in a weak place, it’s easy for the devil to kind of play on those feelings, those emotions. You’re not suicidal—and I’m not a suicidal person, but I did try to commit suicide when I was with my ex, the ex who gave it to me. I did try to commit suicide while I was with him and we were living together, but again, I’m not a suicidal person. Again, that was one of those situations that was—I was dealing with a mental health situation.” (Participant 13, age 30s, diagnosed 2000s) |
Vicarious trauma | Indicates being affected by someone else with HIV being treated poorly or dying. The experiences of others may be witnessed directly or learned about through word of mouth. Usually refers to a family member or someone else emotionally close to the participant. | My grandpa’s brother was gay and died in the 90s from HIV. That was kind of our introduction to it, if you will. Because we grew up in a very religious family, and we didn’t really know too many gay people … a year or so before he died, we were all at my grandpa’s house, and he came over. This was after he’d been diagnosed with HIV, and everyone knew he had HIV. They came over, and they put all the kids in a different house, because my grandpa lived next to his sister. They took all the kids over to his sister’s house, and the adults stayed over at my grandpa’s house, so they could visit with him, but they didn’t want the kids around, because they didn’t want him to infect the kids (Participant 14, age 20s, diagnosed 2010s) | |
HIV-related and intersectional stigma | Diagnosis added shame to the burden of intersecting stigmas | “My culture is something that is anathema to me … I don’t feel comfortable being who I am having not been able to choose. If I could go back again I would choose something else. It’s a horrible statement because it contradicts my overwhelming sense of pride in being different and unique … because I’ve had so much plight in my life in having to deal with so many obstacles that come from being black, I actually left the country for a number of years as some relief, escape … When I came back, the reverse culture shock was quite [] … being objectified or ostracized solely based on the color of your skin is literally insufferable. I don’t know how we survived for so long with the things that we have to deal with … a lot of oppression has caused me to take on behaviors of the oppress (or) and I tend to discriminate against my own kind. I think I deal with a lot of [homophobia] from black people and a lot of [racism] from gay people and a lot of my strongest fears and most scathing situations have come from other gay black men. [Being positive] is just not something I’m proud of … I don’t want to have that be another object or label that’s put on the already long list of labels. I have to deal with being a minority in several different ways … I haven’t told my family and the reason behind that is my mother, when she found out I was gay, said, ‘I don’t care just don’t get AIDS.’” (Participant 1, age 30s, diagnosed 2000s) | |
Lack of patient-centeredness | Healthcare system environment | Considers the atmosphere in the clinic or medical office: physical setting (comfortable or not) treatment by staff (welcoming or not, attentive or not), protocols for delivering care | “He was a general practitioner. He wasn’t my doctor. I had no relationship with him so he sent me to a clinic in Newark … there were benches lined up against the wall and people were waiting to be called in … they basically told me to go in peace … There wasn’t any kind of personal relationship. There was really not much else. I was a number.” (Participant 8, age 50s, diagnosed 1990s) |
Medical provider | Includes provider affect, experience, identity. Includes provider’s delivery of the diagnosis (callous, sensitive), level of engagement (attentive or not, willing to answer questions or not) | “It was a bit strange … there wasn’t taking by the hand, you have it. It was more like you have it. This is it, so you need to be on medication. They were pretty much straightforward about it. There was no beating around the bush. There was no pity party … They walked out the door and left [me] in a room, alone, by myself, I guess, to absorb this … I was a bit taken aback, so this is how it is when you get infected. This is how you’ve been delivered the message. It’s thrown into your face” (Participant 16, age 40s, diagnosed 2010s) | |
Acceptance of HIV diagnosis | Disclosure or sharing of diagnosis | Considers length of time before disclosure, with whom the participant shared diagnosis, reactions of those told, factors considered in the decision to disclose | “I feel like when you’re being authentically yourself and you’re being honest with people about it, and you let go of that mentality of feeling like you’re a stigma … Knowing that, for me, is that I’m always aware that if these people are as open-minded as I think they are or expect them to be, then they’re going to take what I’m saying at face value, and they’re gonna take my truth, and they’re going to absorb it and respect that and respect me.. That’s it.” (Participant 13, age 30s, diagnosed 2000s) |
Social support | Includes degree of comfort with HIV in social or family networks, nature of interpersonal relationships and emotional ties | “I don’t know adult life without HIV because it happened at 21 … I still struggle sometimes with the stigma because it’s coming back. It used to be really bad in the beginning and then when I moved to New York, people … were so open about it that it actually liberated me as far as the stigma was concerned.” (Participant 2, age 50s, diagnosed 1980s) | |
Self-motivation/Personal growth | Describes action taken to learn more about HIV, via research or speaking with friends or providers. The additional information created an empowered mindset to view HIV differently from at the time of diagnosis. | “Before I was diagnosed honestly I believe my HIV is my karma because they say you never wish anything on somebody else that’s wrong with yourself. When I was younger I talked about people with AIDS and I honestly thought it was a death sentence. You did this. I thought I would never catch it. Like, I could never catch this. Once catching it, I read up on the information about it, the disease, this, that … I said okay it’s not a death sentence cuz medicine is not where it was … It’s totally different now. It’s manageable now. You can’t be ignorant to being HIV positive. It’s not a death sentence. If you’re taking care of yourself, it can be managed.” (Participant 15, age 30s, diagnosed 2000s) “Just a few years ago it was a death sentence. In 10 years, you’re gonna die. In five, you’re gonna die and so you gotta take this. You’re gonna lose weight. You’re gonna get skinny … Now people are living with it for 20 years” (Participant 11, age 50s, diagnosed 2010s) “My therapist was good because she let me know that it’s not a death sentence what I had, so I felt like it wasn’t the end of the world for me … I have a more positive outlook on life itself, being HIV positive is not a death sentence, you know.” (Participant 5, age 40s, diagnosed 2010s) |
Diagnosis trauma
Direct trauma
“I remember thinking, ‘Oh my God this is now going to be my life, this is what I have to look forward to? It took a little time to grieve, I felt sad but I immediately got plugged into different groups...I was living at home, ashamed, I come from a family where we talk but not really – I didn’t want to be judged, I didn’t want to worry my mother. The movie Philadelphia just came out and there was a part where Denzel picks up his daughter and I remember my niece was just born and I thought “Oh my God, I’m never going to see her grow up.” (Participant 8, age 50s, diagnosed 1990s)
“I was told I had six months to live so I was devastated and angry, confused, unsure, you know in disbelief, started acting out sexually, drinking more and doing recreational drugs, became a little more reckless because I felt like what did I have to lose … I had planned to get married. I had planned to have children. I had planned to go to Japan, to have these beautiful bi-racial children and when they told me that, all my plans ended. You’re getting ready to die. Don’t make plans, just take it day by day. Do whatever you wanna do. When they told me, it was a death sentence. I was there right at the beginning. There were no options … I still wanted to dream … I decided my life was over. I was still waiting to die. Six months had passed, but I was still waiting. Any moment it’s gonna happen.” (Participant 2, age 50s, diagnosed 1980s)
“I felt alone. I felt like someone slapped me in the face, physically, without the pain. Yes, I felt cold. I did feel alone. I felt as if I did something wrong. I felt also maybe my life is going spiraling down … I did drink more significantly than I ever have. I used (marijuana). I did not say much to others. I became angry … at first I saw it as a death sentence. Only reason being is research was not significant enough to make me feel comfortable there was a possibility of there being a cure … I thought maybe yes, there’s a possibility of a life-threatening (diagnosis).” (Participant 16, age 40s, diagnosed 2010s)
“When he points and I see it says that I’m HIV positive, I’m—I’m just stuck for a minute because I’m—I couldn’t believe this was my reality at that moment, and I didn’t say anything for maybe—it was probably maybe three minutes, but it felt like eternity, and I just didn’t say anything, and he kept—he was calling me … All these things started flashing before me, like wow—like all the things that I wanted to do—me pursuing my passion to sing and to dance and act, and I was just, ‘Am I ever gonna be able to do any of this stuff?’” (Participant 13, age 30s, diagnosed 2000s)
“First thing that came out of my mouth was ‘Oh my God I’m not gonna be able to have children’ … I kind of knew it in a way, it was like a ticking time bomb until it happened, [then] it felt like ‘Okay the pressure’s gone, things are a little bit more mellow.’” (Participant 11, age 50s, diagnosed 2010s)
Vicarious trauma
“It’s like receiving a cancer diagnosis … when things are terminal people tend to whisper about them or especially with HIV or AIDS. You were a leper. You didn’t want to be stigmatized, you didn’t wanna be discriminated against. When I was diagnosed, what we saw as Black gay men was one week Peter was here, the next week Peter wasn’t here. What happened to Peter? He went home. That was a very common phrase in the 80s and 90s … usually meant he went home to die.” (Participant 2, age 50s, diagnosed 1980s)
“I come from a mixed household, my mom’s southern black American and my dad’s Jamaican … On my mom’s side it’s a lot more brutal, I don’t want them to know at all. Cuz I had an aunt who died of AIDS and when she died, it was just a lot of gossip about who she was sleeping with, how she was living her life. I was nine … it was a lot of horrible talk about gay people, even though the man she was dating didn’t identify as gay. Because she died of AIDS, it was this assumption that he was gay or doing drugs … I’m from the South, from Florida. The South can be very homophobic. Me growing up hearing about HIV and AIDS, it was always coined with gay men. We actually had a person in our family who died from full-blown AIDS. The only reason why she died is because she didn’t tell anybody.” (Participant 7, age 20s, diagnosed 2010s)
HIV-related and intersectional stigma
“When I was younger it didn’t mean that much to me but to know what it means to be black and Latino and to be a minority, it means a lot now … Both my grandmothers, they got scared … I feel like they equate gay to HIV and then death. That’s how it works … My father’s side of the family is old-school Dominican … for them, it was like, it is a death sentence. (Participant 11, age 50s, diagnosed 2010s)
“I was upset because I had joined to do medicine and they were just so fearful back then that you would contaminate or infect other people they just took me out of direct patient care. I was going through my emotions … being told that I had six months to live and then having my career snatched from me, I was going through a lot. I was 21. There were no medications. There were no protocols for drawing labs or there was no viral load. There was none of that … so we didn’t have any follow-up. I had a discharge physical … I felt that he [the physician] was frustrated because he didn’t have anything to offer me … He couldn’t provide me with hope or say next month this new medication is coming out. There was none of that.” (Participant 2, age 50s, diagnosed 1980s)
“While I was pretty much astonished, I was, ‘Oh okay’ because I’ve had sexual relationships before and nothing happened so that’s why I felt that it couldn’t happen to me. I started trying to figure out different places I could get some help … I wasn’t super duper blown up or anything like that.” (Participant 5, age 40s, diagnosed 2010s)
“I actually had no response, and the doctor looked at me and said, ‘I just told you you’re HIV-positive.’ I had no response because I have a melancholy attitude, so I was like, okay all I have to do is make myself better and trying to make myself healthy … I was in Syracuse. I remember when she said, ‘You have HIV.’ I said, ‘Okay,’ saying to myself I have to deal with it. I’ve been dealing with it all these years, and it’s been something that I have to do to keep alive, that’s what I do. Take my medications. I just try to keep healthy.” (Participant 12, age 50s, diagnosed 1980s)
Lack of patient-centeredness at time of diagnosis
Healthcare system environment
“I went to the Health department and I took the test and it came back inconclusive … I was in denial the whole time. I was 20 years old … I got locked up, I went to prison. When you go to prison, they give you the whole screen down of everything. They’re gonna give you every kinda test they can on you. When I got there, they said, ‘You’re HIV positive.’ I was like—I already knew, but they kept telling me that my bloodwork was fine, that I didn’t have to worry about meds. My viral load was high, but my CD4 was still high, so I just didn’t worry about it … In prison the doctors they honestly want to … force a pill down your throat, and let that be the end of it. You be their Guinea pig. I wasn’t with that. I said as long as my CD4 was high I should be good … I really just kept to myself in prison.” (Participant 15, age 30s, diagnosed 2000s)
“I went to the clinic. They retested me. They retested me twice. I got emotional. When I was emotional, they were very surly about it, and dismissive about it. I didn’t like that. I didn’t know what to do, so I was just stuck in this place. I didn’t know anywhere else I could go … they didn’t make me feel comfortable at all. There was a protocol there but it just seemed like there was this route of HIV negative and HIV positive. As soon as I found out I was positive, there was this rabbit hole they were just trying to force me down, instead of just trying to reaffirm that everything was gonna be okay … it just felt very aggressive is what I would say … When I went to [another New York hospital] it didn’t feel inviting at all. They were more so worried about we need insurance. We can’t see you without insurance. They were more so worried about the political stuff versus me just coming here for care.” (Participant 7, age 20s, diagnosed 2010s)
Medical provider
“I was taking the physical, the insurance company Omaha Insurance for their life insurance policy. They draw blood and all that stuff, come to your home … fill out some paperwork. They contacted me, I’d say about a week-and-a-half later and told me that I should see my PCP cuz some results or whatever were abnormal. Then when I actually talked to the nurse who actually came to the house, she said that my blood results came up positive for HIV … I got a confirmatory test done. Of course, they denied me my insurance. Going to the doctor, after finding out what was going on and stuff, he explained a few things … with him I always felt a little bit uncomfortable talking to him about that. He didn’t seem … gay-friendly. He probably was, but I didn’t get it … He’s probably the reason why I chose not to get on medication.” (Participant 6, age 40s, diagnosed 2000s)
“At first I didn’t believe it … the guy said, ‘The good news is you don’t need PrEP because you’re already positive.’ I was just like—I was like no, you’re not talking to me like that. I didn’t believe it, cuz I was like I just got tested, and I tested negative … it was the lack of care and concern. Like who the fuck would say something like that? The good news is you don’t need PrEP because you’re positive. That’s good news? Oh. Where?... When I was treated with that, I was just completely like this is not your bedside manner. This is not how you present somebody with information like that. Yeah, I went through all the emotions, all the feels immediately. You have to be wrong, test me again. Rejection, and then anger of the delivery, and how he said it. Then, frustration, and then immediately sadness.” (Participant 14, age 20s, diagnosed 2010s)
Acceptance of HIV diagnosis over time
Disclosure
“We were actually talking in reference to one of [my mom’s] former coworkers—they retired now—her son passed away from complications. I was trying to explain to her, at this day and age, people who pass with complications from HIV and AIDS and stuff like that is almost unheard of. More than likely, they hadn’t been taking care of themselves. Me, personally, I haven’t heard of anybody actually passing away from HIV and AIDS or whatever, since ‘99 or 2000 or something like that.” (Participant 6, age 40s, diagnosed 2000s)
It was a different world back then, people were dying, there was a lot of stigma, there was a lot of fear, a lot of judgment. I didn’t tell anybody for a long, long time … there’s still a lot of stigma, a lot of judgment, but the fact is people aren’t dying as much as they were back then. It’s manageable now. It’s no longer this thing that could possibly kill me. It’s a part of who I am now. Yes, it’s a discussion that I now have to have with partners forever, but the chances are that people will not reject me because of it.” (Participant 8, age 50s, diagnosed 1990s)
Social support
“In the beginning we all have that thing, that whole death sentence thing. I remember one of the nurses or somebody sayin’ HIV’s very different from what it used to be years ago. Like I said, that stigma. My thought of HIV, now I understand people see it as a chronic illness, I don’t see it like that. It’s not even a stressor in my life … Once I found out, met new people who were HIV positive, I learned from them and I was able to realize it isn’t a death sentence as long as you make sure to take my medications every night and be very honest with my doctors.” (Participant 11, age 50s, diagnosed 2010s)
“It doesn’t really affect my social life and my livelihood anymore. It’s not so bad as when I first started … I honestly compare with diabetes sometimes … [The doctor] just gave me a lot of information. I asked him, ‘I went on the CDC page and they say people only live up to 22 years.’ He was like ‘Don’t listen to that.’ He referred me to some men that he has known that’s been HIV positive for decades. Once he reassured me that it’s not a death sentence, I’m going to live past 22 years, I don’t know, I just felt more comfortable.” (Participant 7, age 20s, diagnosed 2010s)
Personal growth (self-motivation)
“I am not ashamed of it anymore. In fact, I see it almost as a blessing in a sense. It was this horrible thing that happened and I could have succumbed to it. I could have let it drag me under but I chose to become empowered.” (Participant 8, age 50s, diagnosed 1990s)
“I made my appointments … a lot of my friends in the gay society have died of HIV, just cuz they didn’t wanna take care of themselves, didn’t wanna commit themselves to lifelong regimen of meds. I say I’m not gonna be another stereotype. I’m gonna take care of myself … I do believe that people are living longer with the virus due to all the medications and resources they have out there now. I really don’t look at it as a death sentence. You have to take care of yourself initially, do the right things, and you can live longer.” (Participant 4, age 50s, diagnosed 2000s)
“It’s so comfortable being positive. Yeah, I definitely think there is enough resources for me to stay undetectable at the moment. I’m really content with that. My health has been great. I think my health has been better, now that I’m positive than I was when I was negative. It’s because I actually pay attention to it. I would before, I would get tested every three and six months and blah, blah, blah. Really, actually, I would only go and get tested at clinics, and I wouldn’t go to checkups. I ended up in the hospital a lot more when I was negative and using [drugs], than I do now when I’m positive and sober … HIV is almost as important to me now as being a Black man, because it’s a thing that makes up who I am.” (Participant 14, age 20s, diagnosed 2010s)
“I struggle with (being positive) every single day … I just think because the correlation of the way that it is transmitted – going back to the “dirty little whore” theory – is that a lot of people still have that distinction. I think this is helpful but at the same time you can’t convince everyone that it’s like diabetes because you don’t get diabetes from sharing needles.” (Participant 1, age 30s, diagnosed 2000s)
“I’m not gonna say I don’t think about [getting sick], since I took care of a friend, I watched him go through that. I saw him at his worst and I’m like – think about that a lot like ‘This could be me or is that gonna be me or is it just a matter of time?’ All of this has been in the back of my mind, like eventually that day gonna come.’ I ain’t gonna say I don’t think about stuff like that. I do. It crossed my mind, but I don’t let it get me down.” (Participant 3, age 30s, diagnosed 2010s)