Background
The local context
Methods
Recruitment
Procedures
Analysis
Results
Participant characteristics
Mean (SD) or % | |
---|---|
Socio-demographic characteristics
| |
Age in years | 48.69 (9.37) |
Male sex | 59.46 |
If male, gay, bisexual, non-heterosexual identity | 59.10 |
African-American/Black, Not Hispanic | 78.38 |
Latino/Hispanic | 21.62 |
Low socioeconomic status | 97.30 |
Other background characteristics
| |
Ran out of funds for basic necessities in past year | 78.48 |
Ever homeless | 64.92 |
Current housing instability | 18.91 |
High-school degree or higher | 56.81 |
Health indicators
| |
Health self-rating “good” or better | 72.97 |
Receives Medicaid (public health insurance for low-income populations) | 62.23 |
Years since HIV diagnosis | 13.88 (8.12) |
Health care provider recommended ART (lifetime) | 100.00 |
Has taken ART in the past | 54.05 |
Number of times started/stopped ART | 5.17 (5.44) |
Had an established HIV care provider over the past year (from the Medical Record) | 83.78 |
Receives care in hospital-based HIV clinic | 77.78 |
Average CD4 in the year before Baseline (Medical Record) | 291.88 (144.15) |
Average log10 viral load in the year before Baseline (Medical Record) | 3.08 (1.36) |
Depression screener at a clinically significant level | 50.00 |
Overview of results
The experience of “institutionalized” healthcare settings
It really was more about the (medical) setting. I didn’t really feel comfortable by it. I think that the setting made me feel uncomfortable. Felt like the furniture and, you know, I felt like reception and people that worked there were just like paper pushers, and I didn’t really feel comfortable.... I felt like just something invisible was speaking to me. Just that the furniture was run down, the receptionist just seems caught up in a sense like people needing a vacation…I felt that the space wasn’t comfortable enough for me to want to sit there, and register. Just even if I was interested in going there, which I wasn’t, the atmosphere had made me not want to.
I live in Brooklyn, and it’s funny because when you go the clinic or if you go even to, let’s say, the SSI office, (the) hospital, any of those major hospitals that have major clinics in them, you tend to be treated like a number and not a person. And some would say, oh, it’s discriminative, but it’s a little bit deeper than that. It’s the politics of the demographic of where you live, basically. This is what goes on in this neighborhood, so you get characterized as this and put in a box. Which isn’t always cool…I think basically it really has a big deal to do with where you live at. And then [health care providers] have all these other assumptions of the drugs, the crime. All these different things, and it’s just a different form to me of racial profiling…Depending on what street you live on makes a big difference between how you’re going to be treated. Soon as [they] find out your address-it changes a lot of things.
I think mostly it’s pains that mostly people of color go through. You know it’s a lot of pains. It’s a lot of rejection. Not understanding the person’s, you know, history or what that person’s been through, and trying to find someone that really cares to listen to that person. You don’t get much of that because they tell you, “I don’t have time because I have 50 other thousand people that have worse situations than you,” and so you walk out bitter. … So a lot of people—okay, a lot of African Americans —they are on that pre-judgment.
The structural correlates of medical distrust
I believe that they do have a cure out there but it’s gonna be for those that are very rich. Like, I’m gonna tell you, I believe the government made this. And they made it for the less desirables. And they didn’t expect their own kids to wind up (getting) it. And it spreaded. I’m not trying to be prejudiced or anything but they made it for the Blacks, the Puerto Ricans and they made it for the Whites that they didn’t want there.
So what they basically doing is experimenting. They don’t have it correct yet. That’s why they’ve made so many different types. Sometime it make me feel that it’s not really worth taking.
They like to experiment and say, okay, I heard of, what you call them, clinical trial, that’s what clinical trials is, one big guinea pig. That’s for all those guinea pigs. I know I’m a guinea pig, everybody’s a guinea pig.
I would say my population of people are against medicines because they hear the old AZT, you know, you get fat belly. And you get more sicker. That was my idea at first too you know. Yes, a lot of current information isn’t being put out there so they’re still living on the old regimen medicines, AZT and all these other medicines that really, really got you really sick because they was just, I guess, learning. So a lot of my peers that don’t wanna take the medicines, [it’s] because they don’t want the added side effects of it.
I think it’s [social] class. I think some providers feel, they look down at the person. Not all, not all. I’ve had good providers, bad ones, but I feel like they [think they’re] better than [you], you know. “You come here for services from me? You know, who put you in that situation? You did.” You know what I’m saying? “Now you’re wasting my tax dollar,” you know what I’m saying? I can give you a perfect example. “No, I’m not giving you that med that’s too expensive.” Why not? Medicaid’s (government-provided health insurance for low-income patients) paying for it or whatever…but the doctor feels he don’t want to give him that medicine because they’re in bed with the pharmaceutical companies because the provider also get a little incentive. [The pharmaceutical companies say], “Here’s a vacation doc. Here’s a couple hundred dollars, you know, just promote this.” And I, me with my own eyes seen it, like that, the medicine for the belly. I’m in my clinic with my doctor and here comes the representative of this medicine, coming in trying to push it on me.
The importance of autonomy in medical decision-making
Because [in] the emergency room you get Residents that come [in], so it’s like you’re a guinea pig. And it’s frustrating, especially when you know what’s going on with your body, and you’ve been sick, you know. You’ve been positive or have full-blown AIDS for a certain amount of time. And most people know their bodies. So when they go in, they know what to tell the doctor. But if you’re telling somebody new, they’re going to try something else. And like I said, and if you come from [where] I come from in [my neighborhood], they’re going to give you a hard time. The first thing they want you do is take a [drug test] which a lot of people don’t know. They have to tell you that that’s what they’re doing, and it has to be a reason why they’re doing it. So it’s like I said, you have to learn how to advocate for yourself.
I feel some places just treat people like pushovers …just cause I’m Black. It’s like, ‘you’re Black,’ you know what I’m saying?… it’s like, [I’m] just treated a certain way all the time. I just get to the point where it’s like I don’t have a voice. I have to do this because they say so… I don’t own myself. Just occupying this, you know what I’m saying? Just using time or something for somebody else’s purpose.
All my doctors would beg me to take the medication. They wanted me to do DOT [Directly Observed Therapy], you know, come in, pick up the medication, and I ain't like that at all… I didn't like being told. I wanted my medicine when I wanted to take it, and you know. I want to do what I wanted to do.
Because I didn’t even want to have the conversation of them trying to convince me to do something that I didn’t want to do anyway. Because he was a relatively nice man and I didn’t want to have a conflict with him, because I had to use him for other medical issues as well. So I didn’t want to alienate the process of going to the doctor for my whole body. I might need him to give me some pills for anxiety or for my whatever I am having, my iron pills or may go to in for a colonoscopy and I didn’t want to have the conflict.
Over-emphasis on HIV/ART
And then that’s what [the doctor] just kept…drilling on that same issue. I’m like, does this guy know anything? … He needs to see the bigger picture here. If you want to help someone, like I said, you got to see the whole picture of what’s going on with this person and the reason why they have waited this long [to take ART]. There has got to be some other things that are going on that you’re not asking these questions. You’re focusing on one thing. It’s good but it’s bad at the same time because it’s not really motivating that person to take their medicine or to start taking medicine. I would walk out of here just as empty as I walked in here. I’m sorry.
I had not dealt with [the staph infection] before, and I was trying to cure it at home, you know. Doing my own medical cures, you know. Cause I didn’t wanna really go to the doctors and expose all my records and stuff. But it got worse and worse and worse. So I finally went. [But] they weren’t talking about the thing that I came there for. They were more focused on, oh, you’ve had HIV all along, and you don’t take medication, and you should be on pills, and I was like, …I don’t wanna see you anymore. I need somebody at the top. I’ve been dealing with (HIV) for longer than you’ve known me these past 20 hours, and whatever the occasion may be, I know what’s going on here. I need help with (the staph infection). Any questions about HIV, you need to ask me, I have the answers for you.
Everybody just see the pill. Y’know what I mean? But I’m bigger than the pill. Y’know, the pill is within me, I guess [chuckles]. But the pill is a big thing, y’know what I mean, I don’t know, there’s some kind of way that human got it backwards in their minds, they see the pill as bigger than me.