Background
Methods
City selection
Study sample
Data collection and analysis
Results
Description of the study sample
Interview characteristics | Participants no. (%) |
---|---|
State (N = 44 interviews) | |
Connecticut | 18 (41) |
Massachusetts | 21 (48) |
Rhode Island | 5 (11) |
Interviews per city (N = 38) | |
Bridgeport, CT | 4 (10.5) |
Hartford, CT | 4 (10.5) |
New Haven, CT | 4 (10.5) |
Waterbury, CT | 4 (10.5) |
Lowell, MA | 5 (13) |
New Bedford, MA | 4 (10.5) |
Springfield, MA | 6 (16) |
Worcester, MA | 4 (10.5) |
Providence, RI | 3 (8) |
Organization type (N = 44 interviews)a
| |
State Health Department | 5 (11) |
Local Health Department | 3 (7) |
Ryan White (local and regional) | 4 (1) |
AIDS Service Organization | 36 (82) |
Staff type (N = 49 participants)a
| |
Regional/state program administration | 6 (12) |
Local administrative/supervisory | 31 (63) |
Medical providers (MD/APRN) | 8 (16) |
Case management/EIS/DIS | 6 (12) |
Sex (N = 49 participants) | |
Female | 23 (47) |
Male | 26 (53) |
Successful initiatives to improve the HCC
We don’t see as many intravenous drug users getting infected as we did, obviously, because they have access to syringes. (Participant 13, Male, ASO administrator)
And [the community has] come together to do the [SSP] van and to expand services going—that’s the heart that exists here. There was no turf. It’s like we need, for our folks, we’re going to do what it takes. (Participant 11, Male, Ryan White administrator)
We are not testing nearly as much as we used to at the DoC, and that’s mostly because the number of positives dropped dramatically when the epidemic shifted away from injection drug use. (Participant 39, Male, Medical Provider)
Individual level themes
Coping with HIV diagnosis and comorbidities
Mental health is a big one. “I’m depressed; therefore, I’m not taking it [HIV medications].” (Participant 1, Female, ASO administrator)
A lot of times what we’ve found is it’s people with mental health issues trying to make themselves feel better by using substance. (Participant 9, Male, ASO administrator)
[HIV infection is] a tremendous psychological stress that people carry with them day in, day out, and some people respond well to it and some don’t. (Participant 39, Male, Medical Provider) Some people end up, when they’re actively using drugs, [they] are out there and not taking meds and not keeping their appointments, and just disappear and have a whole other mode of circling and who they’re seeing. And on the other hand we have folks that are actively using heroin and have a pretty stable pattern of life and [are] coming in for their visits and taking all their meds and, and the heroin is not destabilizing. (Participant 31, Male, Medical Provider)
And I think that even those individuals who are in care who are using…I think they do not want to do harm to their families or the women and/or men in their lives. I think they want to make sure that they are protecting them and their selves, and so I think that has all to do with the retention rate. (Participant 15, Female, City Health Department)
With substance abuse, there has to be a desire to actually want to get help. I would let them know where those resources are, but I can’t like physically force them to go. (Participant 5, Female, Case worker)
You want to get in the detox because you’re finally sick of drinking and using drugs, and it’s such a dehumanizing process. You go through this long intake and then they say, “Oh, we don’t take your insurance, try this other place,” or “Okay, we’re going to put you on the waiting list. You’ll have to call us three times a day to find out if we get a bed open.” And it’s days and usually by the time a bed does open, so many people have lost their motivation and just said, “Screw it, I’m going to go out and get another bag of dope.” (Participant 12, Female, ASO administrator)
[Detox is] a band-aid. It doesn’t—it has yet to work once since I’ve been at [this clinic]. (Participant 48, Female, Medical Provider)
Fulfilling basic living needs
Everything just piggybacks each other, housing, transportation, food, income, medication, doctors’ appointments, everything just piggybacks each other. (Participant 47, Female, Case worker)
But it’s very hard to place somebody in housing that doesn’t have a job or somebody who is multiple evictions. Those things are still factors in placing folks in housing. Somebody with significant or severe mental health and substance abuse challenges, those things still are challenges for people accessing stable housing. (Participant 18, Female, Ryan White administrator)
I mean, the care of HIV itself is not the problem. It’s just all of the other social situations surrounding it that make it challenging. So we have one patient that I think I saw last who came in here today who is living in her car. (Participant 24, Female, ASO administrator)
Somebody might let the medicines go while they’re working on the housing. (Participant 31, Male, Medical Provider)
Interpersonal level themes
Stigma
There’s stigma about HIV. There’s stigma about mental illness. There’s stigma about addiction. There’s stigma about a number of things. So it seems sort of multi-layered issues. (Participant 39, Male, Medical provider)
Stigma. They don’t want people to see—in a small city, people know each other…That is big. People will see them going into a clinic. People will see them going into an HIV anything, and they don’t want to be seen doing that. (Participant 29, Female, ASO administrator and clinician)
So I think one of the challenges to testing is stigma, and what happens, and who has access to your information, and what… what if my partner finds out? What if my family finds out? (Participant 30, Female, ASO administrator)
I tell my clients right off the bat, because I live in [this city] and I’m in the area and I see a lot of you, when I’m with my family to keep your information confidential and so that your information isn’t breached. When I’m with my family I don’t speak to my clients. (Participant 45, Female, Case worker)
I have patients here who say they feel stigmatized every time they’re interacting with their medical provider, their ID specialists. They’re being treated like an addict. (Participant 6, Male, ASO administrator)
Our offices are separate from the adult medicine offices, so even some members of the community, when they come up here, they know if you look to the left, this is where people living with HIV go, and [to the right] is where people who are not living with HIV go. One of our goals is to change that, because, I mean I personally think that it drives stigma. Just the idea that you’re living with HIV, you can’t receive your medical care where everybody else is receiving their medical care. (Participant 42, Male, ASO administrator)
Instead of calling it the HIV department or the infectious disease department, Cardenio (sic) means caring and loving in Spanish…and the thought behind it was the caring, and loving, and compassion that somebody can receive. When we moved to this building, we really had a hard time identifying how do we designate our area, how do people know that they can come to this floor without feeling stigmatized and so it’s our attempt for somebody to be able to come in and say, “I’m here to see the Cardenio (sic) department” versus “I’m here for HIV services.” (Participant 37, Female, ASO administrator)
And in that same vein, to reduce the stigma, we don’t want to be just an HIV testing van, hep C testing van. Our signs are we do blood pressure, glucose screening, so you can all come in. You can get a vaccination. (Participant 28, Female, Medical Provider)
Staff cultural competence and treatment attitudes
We’re culturally competent here and when we hire staff, we try to get a good array of people that come from different cultures and speak the languages [spoken in this region]. (Participant 2, Female, ASO administrator)
For me, the surface of culturally competent care is care delivered in the language that the person feels most comfortable speaking and understanding. And maybe even the person speaking that language coming from a similar background to the person that’s receiving the education or [care]…So it’s our effort to make sure that we can, at the very least, provide language services…My philosophy, and when I talk to our staff is [that] it’s more about just withholding judgment. I mean, part of being culturally competent is knowing that you can’t be completely culturally competent because if you were, then you’re just basing that competency on norms which don’t apply to everybody. So when people are coming in and talking about certain attitudes and certain beliefs and understandings about the care that they’re coming into access, for me, it’s more about just greeting that understanding with an open mind and trying to understand where it’s coming from and trying to do what you can to address those issues without being, I guess, condescending or without the appearance of being rude or without making the person feel like they are stupid. Which can be complicated because if somebody holds a belief really firmly, and you’re trying to have a discussion with them that sort of is contradicting that belief, then that can be a difficult conversation. (Participant 42, Male, ASO administrator)
It just doesn’t make sense to prescribe somebody antiretrovirals and they don’t have a place to live, ya know, or they…they’re actively using drugs and they have uncontrolled schizophrenia, really? It doesn’t make sense, so I really feel strongly you got to address those things first. (Participant 3, Male, Medical Provider)
I have people using crack who have non-detectable viral loads, so it makes me think that they [ART and crack use] can happen at the same time. (Participant 48, Female, Medical Provider)
I’ve known this for years, you got to give them access and availability to a pill, no matter what. (Participant 32, Male, State Health Department)
Health care systems level themes
Service organization environment and resources
[Directly observed therapy] can get done at either place [van or storefront], but usually we like to see them on the van and then we can address any other issues, medical or social, and then we link them either back up to [their case worker] or back up to their primary doctor. And I also can do some primary care with them as well, so they don’t have to try to get an appointment to see their primary medical doctor if I can see them in five minutes—the van is like an urgent care center and it’s kind of, it’s very quick, very fast. (Participant 28, Female, Medical Provider)
And even if I see somebody who might want to have me as a source of their HIV care, I will refer them to the health center, because they’ve got a whole other bucket of needs that I can’t really fulfill, so sort of one-stop shopping. (Participant 43, Male, Medical Provider)
It all depends when the doctor calls you and said, “I haven’t seen this patient in a while,” and then I go look for them and then go try to find them. Usually I can find them maybe in a couple hours. Maybe it’ll take me a day—because I already have [an] idea. See, there’s a lot of clients that we see on the van that we already know their routines, so it’s like I walk down the street, like I’ll go from here to downtown, might see ten people living with HIV that I know, so the first thing I ask them, “When was the last time you seen your doctor?” So they said, “Well, I haven’t seen the doctor in six months, I’m having a drinking problem.” I grab the phone, make an appointment…we link them right there. (Participant 33, Male, Case worker)
I was able to hire a nurse and a peer specifically to carry about twenty cases of the most difficult patients to retain in care. And that money is running out [at] the end of July on [that] project, but the state just decided to pick it up because here it’s been extremely—extremely successful. (Participant 13, Male, ASO administrator)
Intra- and inter-agency communications and coordination
The patients already signed a consent to let us work with any of their providers and [access their electronic medical record]. (Participant 28, Female, Medical Provider)
Coordination with the Department of Corrections was also crucial to HCC outcomes when PLWH transitioned back to the community, particularly for those with histories of substance use as is the case for many—if not the majority—of those incarcerated.[The ASOs in the region] meet once a month. They will look at quality data. They will look at expenditures. They will look at service utilization data. They will talk about barriers. They will talk every single month about what’s going on in this community and what they can do and even down to expenditures where I can say “You know what, I have emergency financial assistance money in my organization and you know what, we’re going to run out. Does anybody have—?” “Oh, we have plenty. Why don’t you refer your clients over to us and we’ll take care of it for them.” (Participant 11, Male, Ryan White Administrator)
Participants noted that, prior to incarceration, many PLWH may have discontinued their HIV treatment. Incarceration represented an opportunity to resume HIV treatment that would be important to continue after release. Recognizing the high risk of relapse and potential need for post-incarceration substance abuse treatment, participants considered coordination of the responsibilities of parole/probation officers and case managers to be particularly critical to ensuring that the person remained in HIV treatment and did not return to prison due to probation/parole violation (which often involves illicit drug use).What gets you in jail, it’s—I mean there are some folks with violence charges and things like that, domestic and, but it’s mainly addiction that’s behind it, (Participant 31, Male, Medical Provider)
We start working with them at least three months before they are released and then we assess what would be those challenges for them to stay in care once they are out of the jail. (Participant 36, Male, Case Worker)
Less frequently, participants reported that transfer of care was less than ideal in terms of notifying the ASO in a timely way of a prisoner’s release.When they come out of jail, I’ll go to probation and meet with them. I’ll talk to the probation. I have a drug counselor. I have a psychiatrist. I have primary care that we could help them. We maintain the medicines and once I tell them the plans that we got, the probation office is happy with us because we got a good relation with the probation officer because we’ll do their work [perform weekly urine screens, find the person]. (Participant 33, Male, Case worker)
[The case worker] sometimes get notice that morning that so-and-so inmate is being released today, and they have to find a place for this person to go, and sometimes there’s no place for them to go. (Participant 1, Female, ASO administrator)
So we tested him at the jail. He got connected with some kind of service. I don’t believe he got connected with medical care there because he was going to leave and once he was out, he just disappeared until we found him months later. (Participant 40, Female, ASO administrator)
Policy/society level themes
Organizational and community opposition
The [new] director of the emergency room…just does not think this is the place for public health issues in [the] emergency room. That’s his attitude and you shouldn’t be doing [HIV testing] here…I literally just came from a meeting an hour and a half ago and they said “We’re not interested at this hospital in pursuing that right now.”…[the hospital is] in the middle of some legal stuff going on with that right now…the hospital is [also] being bought by another company and we’re getting to the closing and [the hospital is] just not interested in any bad publicity right now, so it’s not a good time for me to be talking about [routine HIV testing] in our emergency room, but it’s still something I’m very excited about. (Participant 3, Male, Medical Provider)
[The city council said,] “And so why would needle exchange help, because it’s not helping that the [HIV] numbers are down. So because the hepatitis C numbers were up is what really got [the city council] to do something different. But otherwise they’d say, “Why do we need it? What do we need testing for? The numbers are down.” (Participant 14, Female, City Health Department)
[The SSP clients] go, “You’re not here,” and we go, “Yeah, we’re really sorry, but we couldn’t get the van out,” or sometimes the van, the van’s a vehicle, like a car, so everyone’s like, “I need another van,” because we need one to [substitute just like] you need two cars in a house to take one to the mechanic, so this thing has to go in and get oil changes, mechanic, go get gasoline, it’s not like it’s a structure that stands. (Participant 33, Male, Case worker)
Activites with unintended consequences
Well, a lot of abandoned buildings have been torn down. They redesigned the bus terminal and there’s policing out there, so there’s not a lot of people just hanging out anymore, same as the train station. So [activities of men who have sex with men have] gone more underground. Same as the drug use. It’s gone more underground. (Participant 30, Female, ASO administrator)