. 2023 May 27;14:21501319231175362. doi: 10.1177/21501319231175362

Table 3.

Experiences of Stigma Among Exit Interview Participants in HPTN 078.

Discussion of stigma	Example quotes
Provider/healthcare-level stigma	*HIV stigma.* [My clinic has made me uncomfortable by the way they]. . .um, like treating somebody with HIV like they can catch it by just touching them on the hand or something. . .[but rather than complain,] I’m just thinking about changing my clinic. . . I’m very observant so, just how they’re, I’ve observed their body language while treating the patients. – (Male/Pansexual/African American/23 years old/6 years in HIV care) It just embarrassed me [seeking care for HIV]. Like you know no one wants to really go sit in a room full of people that’s coming to get checked or are newly diagnosed, or they’re coming to see – or they’re coming for an STD check so to me even to this day, it’s kind of embarrassing but like I said, it’s part of me. It’s part of who I am now so I have to deal with it, and whoever I see in there, whatever. – (Male/Gay/African American/33 years old/2 years in HIV care) What makes it hard? Um, well for one, my clinic it’s very annoying, the community, with the kind of clinic it is, so they put the stigma of this in the community. . .when I first started going, that was the hardest thing about going to the appointment there because it was the stigma of the community, because everybody knew what the building was for. So. – (Male/Bisexual/African American/39 years old/11 years in HIV care) *Sexual stigma.* “There was this one uh nurse, I think she was a nurse. . .and I’m not sure if um, you know if she’s in harmony with, you know with the disease itself or, you know, my sexuality, that type of thing. Like I said uh previously, you know some people they just work to work and make a living, but I’m not sure if they are always comfortable or you know, with the mission basically. You know, and ideally when people, different sexualities, you know, being a gay person or bi-sexual person, that type of thing. . .I did have some misgivings about her presence. I don’t know, it might be my own personal imagining, but I just felt a certain vibe from this person and you know, I wasn’t too comfortable with it. I was actually going to introduce that but, I don’t know. . . – (Male/Gay/African American/58 years old/25 years in HIV care) Um, and I didn’t – I didn’t – I didn’t know what it was [my symptoms I was having due to having HIV], and I was so afraid to go to the doctor’s office about it because I didn’t want anyone to know I was having sex with men at the time. . .And so, it took me years to even go get that treated. . .I mean, almost, like, seven or 8 years [before I sought medical care and got my HIV diagnosis]. – (Male/Gay/African American/36 years old/4 years in HIV care)
Interpersonal/social-level stigma	*HIV stigma* . . . .I got my first master’s [and my HIV status was] found out by [my school and they] put a whole billboard and sent it to every student and faculty member, “[name] is in the hospital dying of AIDS.”. . .how do y’all know? [so I’ll] spend the rest of my life getting people together for running their mouth. . .But then, when you come to me [about my HIV illness], I won’t know if you’re here to help or hurt, I really don’t. – (Male/Gay/African American/33 years old/6 years in HIV care) Um, but it’s so fearful to have to tell other people that you have it who don’t, because of how you think they’re going to look at you, or if they’re going to want to deal with you or anything like that.. . .when I found out I had it, me and my ex were together, so, of course, I’m not going to – you know, he’s already – he has it, I have it, there’s no care in the world. But when we separated, I was in fear for the rest of my life. . . – (Male/Gay/African American/52 years old/13 years in care) [I had a friend with HIV and]. . .he didn’t take any medication. He knew he had HIV, but he was one of those people who made fun of people for HIV, for having HIV. Like. . .he was with a group of friends who swore for now that they were HIV negative. So, they’re, “Oh, yeah. I’m HIV negative, you know,” and they’re all saying, “You know, I’m not sick. You know, I’m protected and people who are HIV positive are hoes and sluts,” and everything in the book. And that’s what their perception was and he knew he had it. – (Male/Gay/African American/35 years old/5 years in HIV care) *Sexual stigma.* . . .Like right now the shelter where I’m at I’m having problems with discrimination. There’s a Jamaican guy that’s always calling me all these things and telling me all these things. [My case manager]. . .told me. . .what this guy is doing is called a hate crime. . .[so] I feel safe coming to see this guy [for HIV care]. You know, besides being a case manager, he’s about to graduate from law school. And he knows exactly what he’s doing [and it helps me manage this]. – (Male/Gay/ White/Hispanic/53 years old) . . .[A] lot of people won’t face that spectrum [of being LGBT+ and at higher risk of HIV]. Sometimes it’s [a] shame, some things are better unknown or unsaid, I guess [about sexuality and HIV]. . .a lot of young men of color, you know there may be a so-called “down low” and they’re not getting tested, and that’s the thing. It’s you get tested, and get a diagnosis, and you get on meds right away, therefore your numbers are a lot better, you know. . . – (Male/Gay/African American/58 years old/25 years in HIV care)

Discussion of stigma

Example quotes

Provider/healthcare-level stigma

HIV stigma. [My clinic has made me uncomfortable by the way they]. . .um, like treating somebody with HIV like they can catch it by just touching them on the hand or something. . .[but rather than complain,] I’m just thinking about changing my clinic. . . I’m very observant so, just how they’re, I’ve observed their body language while treating the patients. – (Male/Pansexual/African American/23 years old/6 years in HIV care)
It just embarrassed me [seeking care for HIV]. Like you know no one wants to really go sit in a room full of people that’s coming to get checked or are newly diagnosed, or they’re coming to see – or they’re coming for an STD check so to me even to this day, it’s kind of embarrassing but like I said, it’s part of me. It’s part of who I am now so I have to deal with it, and whoever I see in there, whatever. – (Male/Gay/African American/33 years old/2 years in HIV care)
What makes it hard? Um, well for one, my clinic it’s very annoying, the community, with the kind of clinic it is, so they put the stigma of this in the community. . .when I first started going, that was the hardest thing about going to the appointment there because it was the stigma of the community, because everybody knew what the building was for. So. – (Male/Bisexual/African American/39 years old/11 years in HIV care)
Sexual stigma. “There was this one uh nurse, I think she was a nurse. . .and I’m not sure if um, you know if she’s in harmony with, you know with the disease itself or, you know, my sexuality, that type of thing. Like I said uh previously, you know some people they just work to work and make a living, but I’m not sure if they are always comfortable or you know, with the mission basically. You know, and ideally when people, different sexualities, you know, being a gay person or bi-sexual person, that type of thing. . .I did have some misgivings about her presence. I don’t know, it might be my own personal imagining, but I just felt a certain vibe from this person and you know, I wasn’t too comfortable with it. I was actually going to introduce that but, I don’t know. . . – (Male/Gay/African American/58 years old/25 years in HIV care)
Um, and I didn’t – I didn’t – I didn’t know what it was [my symptoms I was having due to having HIV], and I was so afraid to go to the doctor’s office about it because I didn’t want anyone to know I was having sex with men at the time. . .And so, it took me years to even go get that treated. . .I mean, almost, like, seven or 8 years [before I sought medical care and got my HIV diagnosis]. – (Male/Gay/African American/36 years old/4 years in HIV care)

Interpersonal/social-level stigma

HIV stigma . . . .I got my first master’s [and my HIV status was] found out by [my school and they] put a whole billboard and sent it to every student and faculty member, “[name] is in the hospital dying of AIDS.”. . .how do y’all know? [so I’ll] spend the rest of my life getting people together for running their mouth. . .But then, when you come to me [about my HIV illness], I won’t know if you’re here to help or hurt, I really don’t. – (Male/Gay/African American/33 years old/6 years in HIV care)
Um, but it’s so fearful to have to tell other people that you have it who don’t, because of how you think they’re going to look at you, or if they’re going to want to deal with you or anything like that.. . .when I found out I had it, me and my ex were together, so, of course, I’m not going to – you know, he’s already – he has it, I have it, there’s no care in the world. But when we separated, I was in fear for the rest of my life. . . – (Male/Gay/African American/52 years old/13 years in care)
[I had a friend with HIV and]. . .he didn’t take any medication. He knew he had HIV, but he was one of those people who made fun of people for HIV, for having HIV. Like. . .he was with a group of friends who swore for now that they were HIV negative. So, they’re, “Oh, yeah. I’m HIV negative, you know,” and they’re all saying, “You know, I’m not sick. You know, I’m protected and people who are HIV positive are hoes and sluts,” and everything in the book. And that’s what their perception was and he knew he had it. – (Male/Gay/African American/35 years old/5 years in HIV care)
Sexual stigma. . . .Like right now the shelter where I’m at I’m having problems with discrimination. There’s a Jamaican guy that’s always calling me all these things and telling me all these things. [My case manager]. . .told me. . .what this guy is doing is called a hate crime. . .[so] I feel safe coming to see this guy [for HIV care]. You know, besides being a case manager, he’s about to graduate from law school. And he knows exactly what he’s doing [and it helps me manage this]. – (Male/Gay/ White/Hispanic/53 years old)
. . .[A] lot of people won’t face that spectrum [of being LGBT+ and at higher risk of HIV]. Sometimes it’s [a] shame, some things are better unknown or unsaid, I guess [about sexuality and HIV]. . .a lot of young men of color, you know there may be a so-called “down low” and they’re not getting tested, and that’s the thing. It’s you get tested, and get a diagnosis, and you get on meds right away, therefore your numbers are a lot better, you know. . . – (Male/Gay/African American/58 years old/25 years in HIV care)