Table 3.

Themes from INSTACARE interviews on clinical care for Black patients living with HIV, including example quotes from participating patients (Pt.) and providers/clinic personnel (Cl) collected from March 2021 to January 2022.

Barriers

“I’ve never been shown how to monitor my viral load. I don’t even know what that means. How could I know how to do that? Ain’t nobody ever told me that.” (Pt.-Interview) “Sometimes there’s not a good mechanism for the client to be notified if they’re there have no more prescriptions” – “it wasn’t processed correctly or something. And then they couldn’t get the medication. So I think systems sometimes really can be a barrier.” (Cl-Interview) “Housing is a big one. And […] if there’s a family disruption, if someone is sick or someone dies or there’s a divorce or someone gets kicked out of a house, then that can send everything into disarray.” (Cl-Interview) “The clinic and the idea of being there and being seen and people, you know, kind of knowing or the perception that people will know why you’re there” (Cl-Interview) “I had to go and purchase another insurance plan […] because with Ryan White, just nobody seems to want to give me the time of day. […] My doctor even said to me, ‘Well, we’re doing this for free’ or something like that, you know, just a little off [re]marks” (Pt.-Interview)

Facilitators

“So I think that part of it, it’s a community like they used to be, sometimes there’s limited resource…like for rent assistance. […] They don’t have all the funds all the time and for people that really need that, sometimes it’s not enough.” (Cl-Interview) “Even if you have the Ryan White and you go to the emergency hospital, they’re going to charge you because it’s not covered... have to pay out of your own pocket or they send you a bill.” (Cl-Interview)

Perspectives on CHW Support

“Just be there for us. And that makes me us feel good. Somebody care[s]. You’re not treating us like a corpse because we’re not dead.” (Pt.-Interview) “Empathy, you know, just knowing not to be so quick to judge” (Cl-Interview) “Community health workers can really help […] us recognize individual goals of care in terms of what the priorities are for those patients, because sometimes we don’t communicate that well… Our priorities for patients sometimes are not matching the patient priorities. And sometimes the patients may not feel that they can advocate for themselves.” (Cl-Interview)