Table 3.

Sample quotes from YBGBM participants and HIV service providers

Theme	Sample quotes
Learning about HIV after a new diagnosis is overwhelming, and available online resources do not meet the needs of YBGBM	I think that's pretty much what people are looking for [online], looking for hope in a sense, along with information. – YBGBM, Huntsville I think some of the information out there is printed in such medical terms, it's not in layman's terms. You get overwhelmed trying to understand what the language even means. – YBGBM, San Francisco A lot of them [YBGBM clients] use WebMD, which is terrible because they diagnose themselves with several other things after they get the HIV diagnosis. And then we get the calls the next day. – Los Angeles, Prevention youth programs training specialist
Participants expressed a desire for video-based content and programs	I watched a lot of videos on YouTube about it [HIV] because I was diagnosed this year… Just people going through it. I felt alone, so I just wanted to hear other people’s stories and how they found out and how they got through it, the medication, insurance… I just did a lot of research. – YBGBM, Huntsville I like the videos, not having to read. I'm not a big reader, but that's just me personally. – YBGBM, Huntsville The more I see people that are going through the same thing, the more I'm going to be able to face the fact that, I'm not by myself, because I feel like that right now, but no matter what, I’ve got to keep on remembering that I'm not by myself in a situation like this.– YBGBM, Los Angeles Giving them a packet and saying, “Hey, read this. This is going to tell you what you need to know about HIV, adherence, and all this,” I don’t think will be very effective now, in 2019. Videos will very much be effective, because that’s the world that these young MSMs live in. Videos, and phone, and technology, and social media. – Dallas, Case manager
YBGBM need more support related to disclosure and stigma, which can impact their HIV care outcomes	I disclosed to my best friend first and she completely just went silent. That deterred me from actually even telling anyone. … I ended up telling my uncles. The reaction I was expecting was not what happened. They were super supportive and understanding, and super comforting, and they immediately went to help me out with making my appointments and getting everything done. – YBGBM, Los Angeles My grandma had me eating off of paper plates, plastic spoons and forks for a whole year. … Cousins bleaching the shower down after I get out of the shower. – YBGBM, Los Angeles Stigma keeps them from going to the doctor. Stigma keeps them from going to get treated….Or some people are like, “I don’t like to take my medicine on me because someone’s going to see it.” – Dallas, Case manager A lot of them, I’ve noticed that once they get the diagnosis, they kind of shy away from services, because they’re terrified or scared because of the stigma that is still out there. They don’t want their friends to find out. They don’t want family members to find out. They don’t want their partner to find out, because they fear being left or abandoned. – Los Angeles, Associate director of HIV prevention services Internalized homo-negativity and homophobia are rampant, and it’s a very sensitive topic for some people. … I think that [disclosure] presents an extra challenge in addition to misinformation around HIV, and stigma around that makes it difficult for them to interact and disclose this type of information to others around them, which most likely impacts their accessing and engagement in services. – New Orleans, Director of recruitment, engagement, and retention
YBGBM would benefit from opportunities to learn and get support from others living with HIV	[On a website for people living with HIV] I would include an anonymous way to talk to other people in the same situations. The reason why people get on Jack’d and get on Grindr is because, I mean it's really one of the only logical ways to meet other people in the same situation as you. Other homosexual men. … They don't have some anonymous way for people with HIV to talk with each other. – YBGBM, Huntsville Finding other people who are dealing with the same thing you're dealing with… that’s hope. It makes you want to fight even harder. Like, you know, I can do this, it’s not the end of the world. I can still have a family, I can still have someone, I can still be as healthy as the next person. Not let this be the end of me. – YBGBM, Huntsville What I would like to hear is basically that reassurance from other people living with it, that there is… it's not a death sentence. There is help, that everything's going to be okay. I think that was my biggest worry, was like okay, I definitely… what to do, I'd feel totally lost. I think that would be really good. – YBGBM, San Francisco It would be nice if they had… extra support from other people around their age groups so that they can share and compare and build each other up in that regard. I think it allows them to see the importance of people who are taking their meds, who are keeping up with their appointments. It gives them that motivation, it gives them someone to look to as, “Okay, if they can do this, I can do this, too.” – Huntsville, Case manager
A holistic approach would be most useful for people living with HIV and for service organizations	When it comes to young Black men, programs need to be designed to really treat the whole person, as opposed to just focus on getting them into care. … Once you’ve looked at the whole person, then use that as a way to get them into care, and to keep them in care. – Los Angeles, Director of HIV prevention services I think the holistic approach [is really usable]…So knowing that I’m clicking a website or an app that’s going to tell me how to live my best life, despite just getting diagnosed with HIV, I feel like a lot of people will gravitate to that. Once they see the uplifting message of, “Here’s how to thrive, by so and so and so,” it’ll be great. I think that that will be really effective. – Los Angeles, Prevention youth programs training specialist I think it would be a good resource because we don’t have a lot of stuff to refer clients to, like when they’re not within our arms’ reach, and I think that it would be a good addition to let them know that there is something out there that is concerned about their holistic self when we’re not around. – Los Angeles, Associate director of HIV prevention services
YBGBM want an HIV program that is not exclusively focused on them	It [the app/website] shouldn’t single out one race or gender, because then it makes it seem like we [Black gay/bisexual men] are the only ones with this issue [HIV]. – YBGBM, Huntsville I personally would not use anything like that, that was not open to everybody. If it was only for a specific race, I wouldn’t use it. – YBGBM, Huntsville It [the app/website] should be for Black people, but it should encompass all of those folks [other race/ethnicities]. – YBGBM, Oakland Having faces of different colors, I think that’s more beneficial. – Los Angeles, Prevention youth programs training specialist
Digital programs can help HIV providers and their organizations reach HIV care continuum outcome goals	I think an app like this would help… with our newly diagnosed HIV positives that need help guiding through this new way of life… “Hey, you’re newly diagnosed; let me show you something real cool.” – Dallas, Case manager [Having videos of organization staff] would be awesome. Anything to help [clients] feel like they are connected to us I think is important. – Huntsville, Case manager You risk losing them after that [first visit after diagnosis], so I think that that constant reminder of, “Once you leave here, you’re still going to have questions. You just got diagnosed, you’re still going to have questions, this app is going to be your best friend.” – Los Angeles, Prevention youth programs training specialist I think this is a tool that we would definitely be able to use with our clients. As you talked about, the medication reminder, the appointment reminder, the resources that are readily available, the option, once they are ready to tell their experience, strengthen the hope, I think is very important. … I see it as a complement to the work that we’re already doing. – Dallas, Program manager