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Table 2 Barriers to retention in care for people living with HIV

From: Barriers and facilitators to patient retention in HIV care

Barriers Selected patient quotes Total patients Retained Not retained
1. Competing Life Activities “Of course, mother of four. Work 40-hour full-time job, come home to a full-time job, single mom. So yeah, I mean, there are times, like I said, from exhaustion. Sometimes – most times, it’s just sheer exhaustion. I’m tired, you know. Before I know it, I’m asleep somewhere and I’m sleeping so long, it’s the next day. But when I get up, I will take it. It’s far and few between, but it happens. It happens.” -NR Female High High High
2. Feeling Sick “Maybe because it was cold or it was raining and I was sick and I didn’t feel like coming, even though I was sick, because I know like in the past I will be feeling sick as hell, but I couldn’t even have the strength to get up to come to see the doctor.” -R Female High High High
3. Stigma “You don’t want to see nobody you know and all that kind of stuff. I hate the waiting room, I wish I could put on my hood and walk right through there when I leave.” High Medium High
-R Male
4. Depression & Mental Illness “It impacts a lot. It can impact a lot especially depending on I guess my emotional state. Depending on how bad I feel I’m not gonna move at all, I’m just not gonna come out the house, no matter what the reason that may have brought it on, whether it was me, an argument or fight with my husband, the kids driving me crazy today, no matter what brought it on, depending on how bad I feel, I’m just not gonna come because of my depression.” -NR Female High High High
5. Expensive & Unreliable Transportation “Well, what makes it hard sometimes if you don’t have money to get here. If you don’t have a car, that’s one thing. And what makes it easy is when you have transportation to come here. And it’s accessible if you’re on a bus route. It’s right on the [Specific bus route]. It’s easy to get here. And that’s about it. Sometime you can’t come because you don’t have the money. That’s a factor.” -NR Male High Medium High
6. Insufficient Health Insurance “I’d say about the last two years, it’s gotten to a point whereas though things they used to cover they don’t cover no more. And being – having this disease, we need a lot of things done. They don’t send out no letter, no nothing, just saying you can’t have this done no more or it’s going to be an extra charge. They don’t say nothing. I get to the place like the dentist. I have bone loss. And I had an appointment. I went to the appointment, and they’re telling me it’s not covered.” -R Male Medium Low High
7. Forgetfulness “If I’m rushing out of the house and I forget to just grab them and put them in my purse or something. That’s most of the time when I forget.” -R Female Medium Medium Medium
8. Substance Abuse “I forgot a lot of appointments. I was on drugs and I didn’t – I wouldn’t come in for like months, six months, to a year. I’m just getting back on track.” -R Female Medium Medium Medium
9. Negative Experiences with Clinic Spaces & Processes “I still went…He just run in and out of the office, leave me sitting – first of all, you sat an hour just to get triaged. Then they stuck in a room, you sat another half an hour, 45 min. Then he’d come and he’s be on the phone, he’d be in and out, just write you a script and send you on your way. Every once in a while he gave you blood work. Back then it was like an easy gig. But I left him and I found – the Gods called up, no for real man, it was a blessing.” -R Male Medium Medium Medium
10. Challenges with Appointment Scheduling “Then if I come to appointment, I have to schedule back and forth. She say 11:30, but on the paper I got last time, it was 12:30. So I get her 12:00, she say it’s too late, I have to go back and reschedule. And I rescheduled again for the 26th, it took another month.” -NR Female Low Low Medium
11. Difficult Relationships with Clinic Staff Including Providers “The social worker, [Participant’s Social Worker], and I am not a fan of her. I am not a fan of her. She thinks she’s here doing you a favor. She is manipulative, ring the rule, send you up the steps and down and around and about and then all around. I cannot take that social worker behavior. Just get to the point and lead me in the right direction and tell me what the steps to take. I’m not here to ask you for a handout or what you can offer me personally from a clinical standpoint, a professional standpoint, please assist me with this matter. She make it seem as if she is doing you a favor.” -R Female Low Low Medium
12. Inconsistent, Unstable, or Inadequate Housing “I’m going through a situation right now with my living conditions. I haven’t took my medications in about three weeks now. I discussed - because I am going through – I’m living right now in a warehouse with my cousin who was also evicted because of some of the legal bullcrap we had to go through with my niece and other stuff which annoys me. But right now I’m staying with him so I’m going through a lot of stress with that. I guess I could have continued taking it but I just never been down to get the pills or whatnot.” -R Male Low Low Low
  1. Abbreviations: R retained, NR not retained
  2. The frequency for each identified barrier to retention in care was categorized into tertiles: high, medium, low