The results are organized into four major sections. First, descriptive analyses document how HIV/AIDS has affected their lives (e.g., death of loved ones, changes in behavior, changes in relationships) and the contexts of their encounters with HIV. Second, we examine research participants’ knowledge of facts about HIV and prevention methods. Third, we examine how research participants assess their current risk for contracting HIV and what they are doing to protect themselves. Finally, we investigate how participants respond to barriers they encounter in HIV prevention.
Experience with HIV/AIDS
More than two-thirds of the sample (29/41) reported an interaction with someone believed to have HIV, most commonly with a friend or family member (25/41). About one-third of the sample reported knowing two or more people who had contracted HIV (n = 13). Although the protocol did not inquire about HIV status, two participants reported that they were HIV positive.
Personal Encounters with HIV
Participants described their encounters with HIV as occurring in three different kinds of settings: (a) long-standing social networks of friends or family (n = 25), (b) “the streets” during periods of homelessness (n = 8), and (c) institutional settings such as a hospital or jail (n = 15). While contact with someone believed to have HIV was prevalent in this sample, the intimacy of these contacts varied. Three levels of intimacy were identified in the analyses: (a) witnessing the effects of AIDS, (b) encounters with HIV risk, and (c) depersonalized reports about persons affected by HIV/AIDS.
Participants who had long-standing relationships with a person who had contracted HIV often described their interactions in terms that made them a witness to the effects of AIDS. That is, the character of their descriptions took the form of a testimony to a person’s suffering:
When I saw all the medicines he had to take, it was just overwhelming. … And I went through him having the thrush and the night sweats and things like that … And just his fears of no one being there for him. INTERVIEW 23 (59–82)
Nearly 40% of research participants (n = 16) described being present for instances of suffering and human vulnerability. Not surprisingly, research participants presented these interactions typically as having a profound effect on them. In a few cases, people described the interaction in the manner of a tribute to the individual and how that person coped:
One of my friends, his name was JD, he passed away. He was very frank and open about having AIDS. You know, he could have prevented it, you know … I happened to be in the hospital with him the day he died. … He tried to advocate other people about it before he passed. You know, he went out of his way to do that. He was like, “Don’t make the same mistakes I made. Don’t do this. Don’t do that.” … I was really, really proud of him. INTERVIEW 14 (70–99)
Not all instances of witnessing were based in longstanding relationships. Several participants witnessed suffering as a result of meeting individuals in institutional circumstances (e.g., jail, treatment setting).
I remember the first time I ran across somebody that had full-blown AIDS and I was still naïve ‘cause I didn’t know none of the things that I know now about it. I was locked up in jail and this guy was my cellmate. He was in my cell for like three months. And I remember all the signs. The ashiness of the skin, the brittleness of the hair, the stomach is pot bellied, his legs were like pencils. I remember seeing little, little like eruptions on the skin all over himself. … I remember the look in his eyes—like he was terrified, like he was scared. I never forget that look. And I ran across his nephew and I asked his nephew how was his uncle doing … and he told me “Man, don’t you know, he died. He got AIDS.” And then I thought, “Damn he could’ve at least told me.” INTERVIEW 17 (14–103)
After this account, the participant related three additional stories about encountering other people who had died of AIDS. Clearly, HIV and AIDS have had a “face” and emotional impact on the lives of a significant portion of this sample.
Encounters with HIV Risk
In a second group (n = 9), participants also described emotionally involving experiences, but at a lower level of intimacy. These experiences range from confronting one’s own vulnerability for contracting HIV through conversations with persons who had developed AIDS symptoms. These accounts typically focused on a desire to get more information to protect oneself from HIV infection:
I found out (my roommate) was HIV positive. She told me herself which was good. And she told me what to do and what not to do. She was very cautious and everything. I always asked her questions and she told me she got it from sharing a needle and it got worse because her former fiance was diagnosed with ′ it and he had it worse than she did. So they were still having unprotected sex so she would get even worse. … Well I was kinda scared because she would always tell me the precautions and I was always thinking we’re female and we’re still in the stage of still having our period but I don’t know if you can get it if she takes a bath first and then doesn’t wash the tub and I might have a cut under my foot. INTERVIEW 10 (73–117)
Accounts grouped into this category typically were accompanied by a confession of the fear participants experienced in coming “close” to HIV/AIDS.
Recounting Reports From a Distance
The last group of experiences with HIV can be described as interactions with low levels of intimacy. This group includes observations of acquaintances purported to have HIV (n = 4) and those that received brief reports about a person who died of AIDS (n = 7). The nature of these descriptions is typically restricted to accounts of “facts” about who had HIV, when someone was seen, or how they looked:
I went into the hospital one day to get some medication for myself. He was in his wheel chair now and the only way I recognized him was his braid. … And he seen me. … I said, “How you doing, man?” … He said, “Man, you can see man. Look at me.” And I didn’t have to ask him anything. I knew right then and there what was … even the pharmacist looked at me and shook his head like this, you know what I’m saying. And that was right before Thanksgiving. And he died right after Thanksgiving, he did. INTERVIEW 12 (62–105)
These reports keep an emotional and physical distance from persons who have HIV. These reports describe mundane details of how someone contracted HIV or how one’s appearance had changed. Personal reactions by research participants were minimal, if present at all. Each of these types of experiences have their own implications for intervention, which is discussed below.
Knowledge About HIV
Sources of HIV Information
Given the amount of experience with HIV reported in this sample, perhaps it is not surprising that exposure to HIV information was widespread. Every participant described encountering some type of HIV information in their daily lives. This included advertising in magazines and billboards, television shows, one-time speakers at treatment settings, and a few didactic courses. Participants appear to have absorbed these messages as evidenced by the widespread use of public health prevention language in describing their personal practices (e.g., “use clean needles,” “use protection” for sex). However, the nature of research participants’ participation in formal HIV prevention education was limited. Slightly more than half of the sample reported receiving HIV-related education as part of their health care or housing program. Furthermore, the majority of these sessions appeared to be brief, one-time, overviews about HIV and AIDS that did not provide a framework to support changes in practices.
Knowledge About Etiology and Course of HIV
All research participants had basic knowledge about how HIV is contracted: unprotected sex, “dirty” needles, and other contact with blood or semen. Although we did not test them on their knowledge, most offered a correct description of AIDS symptoms when we asked “What is AIDS?.” However, research participants had many questions about the details of HIV transmission and whether particular practices were risky (e.g., sharing a toothbrush). Nearly three-quarters of the participants (n = 30) indicated interest in learning more about how they can protect themselves. Contrary to stereotypes of persons with SMI, people in this sample had both a substantial interest and a basic knowledge that may be helpful for implementing new prevention programs.
Knowledge of HIV Prevention
Given the broad exposure to HIV/AIDS reported in this sample, the next analyses investigate the depth and detail of participants’ knowledge of HIV prevention methods. First, we present how mainstream prevention messages had been absorbed. Second, we examine whether knowledge of prevention methods reflected methods endorsed by public health policy. Third, we consider how research participants report applying their knowledge of prevention.
Knowledge of HIV Prevention Methods
All participants were able to present examples of HIV prevention that were consistent with public health standards. For instance, when asked, “How can people protect themselves from exposure to HIV?,” every participant spontaneously identified barrier methods: male and female condoms, dental dams, and protected/safe sex. We are struck by the ubiquity of the condom response, which was offered by 38 of the 41 research participants; the three who did not spontaneously mention condoms specifically cited “protected” or “safe” sex as a means of prevention. Clearly, they had been exposed to messages about the necessity of barrier methods of HIV prevention.
An awareness of the need for HIV prevention related to drug use behaviors was also widespread, cited by over two-thirds of our sample (n = 29). For example, 12 identified having and using one’s own needles as a means of prevention, 10 advised using clean needles as a means to prevent the spread of HIV, and six stated that avoiding IV drug use altogether was an effective way to prevent infection. Furthermore, a considerable number of participants also indicated that any drug or alcohol use, not just IV injection, can have a disinhibiting effect, which could lead to reckless behavior when it comes to HIV transmission:
Interviewer: How do you feel about using condoms?
Research Participant: I think its okay. … But a lot of times I’m not protected because (of) what I’m doing at that time. I’m usually on crack and I’m out there and if there is not a condom there I just go ahead and you know do it. It’s being very at risk, you know. INTERVIEW 8(59–64)
The third most frequent category of preventive strategies identified in interviews was sexual partner relationships. For example, two out of five participants indicated that abstinence from sexual activity prevents the spread of HIV, while about a third stated that monogamy is a means to prevent transmission. Knowledge of one’s partner was seen as a key to the negotiation of HIV risk:
It also makes me think more about who I wanna have sex with. I don’t just do it with just anybody anymore. I mean, I used to like doing it a lot, but I used to get used a lot and now this way, you know, it’s nice to think about it for a minute and say, no, I’d rather not have sex with this person because it’s just too much trouble. INTERVIEW 11(470–475)
While knowledge of one’s partner or limiting the number of partners is not enough to prevent the spread of HIV, these data suggest an awareness of harm reduction principles among a substantial portion of the sample that might help introduce other interventions.
Idiosyncratic Views of HIV Prevention
While these results are encouraging for planning HIV preventive interventions, not all of participants’ responses conform to HIV prevention standards. We characterize these responses as idiosyncratic because they appear to deviate from prevention norms in a personal manner.
Nearly a third of research participants (n = 13) include idiosyncratic methods of HIV prevention in response to interview questions. However, these idiosyncratic responses constituted only 13% of the total number of examples generated by the sample (23/177). Idiosyncratic prevention strategies included avoiding thin female partners whose lack of body mass may indicate disease progression, adopting a lesbian sexual orientation, only having sexual contact with individuals who are more educated, engaging in positive or religious-oriented thinking, and avoiding any contact with body fluids of other people:
I don’t drink from anybody’s cup. It might be my daughters or my grandbaby’s. Not my grandbaby. My grandbaby spits in his cup. So I wouldn’t drink from his cup …. Not even my daughter’s. ‘Cause she’s young and she doesn’t protect herself. INTERVIEW 10 (287–291)
While these prevention methods are not those promoted in public health policy, we note that most were not particularly bizarre in that they each touch on culturally- and/or historically-endorsed means to protect oneself (e.g., avoiding colds by not sharing cups).
Further analyses of idiosyncratic beliefs about HIV revealed a greater number of participants who report idiosyncratic views of HIV transmission (n = 20) than HIV prevention methods (n = 13). This distinction suggests that participants think differently about HIV risks and the methods they use to protect themselves. They appear to include additional information in their evaluation of transmission risks. Two major patterns emerged from our analyses: (a) emotion-based responses and (b) history-based responses.
Emotion-Based Idiosyncratic Responses
Several participants were quite direct about connecting their fear of AIDS with fear of its transmission, and thus overgeneralizing the possibility of transmission. These responses were full of feeling, if vague in specifics:
AIDS is catchy. If you get next to a person who [has] AIDS and you don’t know about it, it can happen. INTERVIEW 5 (79, 80)
That’s a highly deadly disease out and I don’t want to discuss it. I don’t want to hear it. Because there are a lot of people out there dying from that. And it’s sad. So you know I just try to avoid it. I just hope they find a cure for it one day. INTERVIEW 9 (157–161)
A few cited sensational cases where motivations of revenge were a key to HIV transmission:
People that have AIDS, they just have this fixation that they wanna share it with everyone else … I’m from New York and we lived upstate for a while, my wife and I and kids and we had one guy up there who was just passing it around to everyone that he could. I thought he really should have been convicted of murder because several people died from that. … In his mind it was like, well, I have it. Okay. I think everybody else should experience it also. INTERVIEW 14 (106–116)
It appears that in these interviews, morally objectionable behavior became conflated with the gravity of the disease itself, and was seen to be much more prevalent in the minds of the interviewees. This might be indicative of a more general phenomenon in which focusing on high-profile but statistically rare sources of transmission obscures more realistic approaches to assessing risk and protecting oneself.
While these responses may appear to be the product of a delusional mindset, they can also (and perhaps more parsimoniously) be attributed to the fear of AIDS and its consequences. One woman articulated this tension between fear and rationality:
Interviewer: What do you want to know?
Research Participant: I guess how to keep myself protected. I can’t say I really don’t fear being around people with AIDS. But being that I was incarcerated too, there were a lot of women in there that were infected and used to have nosebleeds and things like that. … so just how to protect myself but not be in hysteria. INTERVIEW 23 (49–55)
History-Based Idiosyncratic Responses
These responses wove information that was once valid into current perceptions of risk that are not. For example, while gay communities in the U.S. were most affected by HIV at the outset of the epidemic, it has since spread far beyond this group. However, several of the interviewees continue to see those with alternative sexual orientations as embodying a particularly salient risk (n = 7). It is interesting to note that in this case gay individuals have been grouped with lesbians since lesbians have never been identified as a high-risk group. This may be an example where cultural factors (e.g., homophobia) have an impact on HIV-related attitudes.
Responses offered by four African American participants highlight the issue of distrust in scientific and governmental agencies in some minority communities. Mild examples acknowledge flaws in the public health system:
I know [blood transfusions] are a lot safer than they used to be, but I know because you know the need for blood is so great sometimes that they can’t wait as long as they need to test again. INTERVIEW 23 (235–238)
More extreme examples of distrust of “the system” came from two interviewees who said that AIDS was created by the government. One believed that the government was waiting for more “undesirables” to be killed before making a cure available.
Contrary to some expectations for persons with SMI, these fear-based or history-based transmission perceptions are remarkably similar to those of general populations (Kalichman, 2003
; Ostrow, 1999
). Although beyond the scope of this analysis, the more idiosyncratic responses cannot simply be attributed to individual paranoia or delusions.
Negotiating Self-Assessed Risk for Contracting HIV
In addition to documenting basic prevention knowledge and experiences with HIV/AIDS, we designed the study to investigate how persons with SMI apply their knowledge of HIV prevention in their own personal practices. We asked those who had not already contracted HIV (n = 39) to rate their own risk for HIV infection on a scale from 1 to 10; this provided a metric that was culturally familiar and useful for comparing research participants’ perceptions. Respondents’ self-risk-assessments were placed in two categories: (a) “lower perceived risk” (4 and below a scale of 1–10) and (b) “higher perceived risk” (5 or above on a scale of 1–10). Second, we classified each participant’s reported behavior as “lower” or “higher risk” according to public health standards. Finally, the participants’ reported behavior risk categories were compared with their perceived risk for contracting HIV infection to create four categories of risk negotiation: (a) lower risk behavior/low perceived risk; (b) lower risk behavior/high perceived risk; (c) higher risk behavior/low perceived risk; (d) higher risk behavior/high perceived risk.
Lower Risk Behavior/Low Perceived Risk
A third of the sample’s self-assessment of low-risk matched their low-risk prevention behavior (n = 13). This group of respondents had accurate prevention knowledge and reported implementing this knowledge into consistent practice (i.e., condom use or abstinence). These included consistent condom use, using a strategy of sexual abstinence, and abstinence from drugs, particularly IV drug use. These participants were generally adamant about the importance of consistent use whether their partner wanted to use them or not:
Well, [condoms don’t] bother me. So, if the guy really cares for me, he has to use it. No glove, no love, like they say. INTERVIEW 10 (302, 303)
Some respondents reported wearing condoms in the context of monogamous relationships, particularly when their partners were engaging in risky behaviors. A woman married for 11 years reported:
“[I tell him] if you want it, you have to wear a condom …. I like to use a condom because I want to be protected with him and his drugs ….” INTERVIEW 21 (374, 454, 455)
Regardless of the reason for decreased risk, these respondents appeared to be aware of which behaviors and situations placed them at risk and reported implementing practices to decrease their risk for HIV infection.
Lower Risk Behavior/High Perceived Risk
About a quarter of the sample considered themselves to be at higher risk than their reported behavior suggested (n = 11). This group expressed higher levels of anxiety and concern about HIV than the rest of the sample and appeared to base their risk assessment on concern about the seriousness of HIV, rather than on their prevention practices. For example,
I’d say [I have a risk of] a 10 [out of 10], because I don’t want to lose my health. It’s really important. Especially at my age, I’m gonna be 49. I’ve been lucky so far. So I don’t want to take any risks. INTERVIEW 29 (120–123)
This group had a greater level of fear about their past and about what could happen in the future. Overall, members of this group appear to need reassurance that their prevention practice is sound, information on how to know if you have HIV, and skills to help them negotiate safely entering into sexual relationships when they decide they are ready.
A majority of participants from these two “lower risk behavior” groupings (15 of 24) reported using sexual abstinence to protect themselves from HIV. Many appeared to view abstinence as part of a harm reduction strategy. For example, one man stated:
“Usually I try to stay abstinent. When I do have sex, I use a condom every time.” INTERVIEW 11 (303, 304)
Abstinence appears to be a strategy that many had learned from substance abuse treatment and now apply to other areas of life:
… being abstinent from drugs changed my whole life around. I don’t frequent the same people … I don’t have to indulge the things that go along with drug use. Getting high, arguing with people, having [unprotected] sex, you know. INTERVIEW 17 (521–528)
The vast majority of participants in the “lower risk” categories (20/24) reported that they had not used IV drugs in the recent past, if at all.
Higher Risk Behavior/Low Perceived Risk
This group (n = 6) had a more troubling mismatch between behavior and perceived risk. This group appears to be at an elevated level of risk for contracting HIV in that they did not acknowledge their HIV risk,
“God created the woman to be the man’s companion … so that’s what we’re supposed to do. … It ain’t gonna hurt you.” INTERVIEW 27 (256–260)
Participants from this group were also at higher risk because they rely on prevention practices that are not considered sound by public health standards:
I don’t use [condoms]. I never use them because I always know my mate very well. … it would be an insult to say you gotta get a test. And they’ll tell somebody what they’ll believe. … So you just go get checked [yourself]. INTERVIEW 16 (431–437)
In sum, interventions for people in this risk category would appear to need to focus on assessment of one’s own risk for contracting HIV and motivation to implement their prevention knowledge.
Higher Risk Behavior/High Perceived Risk
Nearly a quarter of the overall sample (n = 9) assessed their own risk as high and reported similar behavior. Almost all of the participants in the higher risk category reported inconsistent condom use. For the most part, these respondents appeared to have knowledge of sound prevention practices, though they did not implement their prevention knowledge consistently:
Yeah, I’m very worried. I mean, God knows, for one day I might … You know, I see some cute little girl and all my knowledge about [HIV prevention] goes out the window. INTERVIEW 15 (454–456)
Drug use was acknowledged as contributing to higher risk related to HIV. One woman trying to stay off crack reported that she needed to avoid drugs
“so it doesn’t leave me with risky behavior and stupidity, because there is a lot more than HIV out there … crimes. And I could end up dead in the middle of the road.” INTERVIEW 8 (367–369)
Several participants indicated that they did not use condoms with their partners, even when they suspected that the partner was engaging in risky behavior:
I don’t feel he’s as safe as I am … because I know him. If he was cheating I guess I would know it. He’d go out there and find someone else off the street. It’s more of a chance to catch the HIV. INTERVIEW 4 (74–177)
Despite these concerns, this participant also said that she did not use condoms when having sex with him. As noted earlier, these participants expressed concern that their behavior put them at increased risk for contracting HIV and knew of the potential consequences of not protecting themselves. They appear to be blocked in applying their knowledge to changing their behavior.
Barriers to Prevention
In reflecting on their risk negotiation, research participants discussed two primary challenges to use of HIV prevention methods: a dislike of condom use and expected transitions from the structure of supportive housing to more independent living. While men made the majority of the complaints (24/33), and were identified by women as the major source of resistance to condom use, women were a sizable minority of the total responses (9/33) indicating that they, too, felt that condoms were an impediment to sexual encounters.
When asked about surmounting barriers to condom use, two-thirds of research participants indicated that they believed that holding the line against unsafe sexual activity, even in the face of rejection, is the primary way to continue to protect oneself. However, they did not report many alternatives short of outright rejection of sexual partners who propose unsafe sex. One-quarter of the sample (n = 10) suggested negotiating with the partner about condom use. Five participants advocated that individuals have condoms on hand and two suggested strategies to make the use of condoms more sexually provocative.
Even among those who were insistent about condom use, it appears that interpersonal factors can overcome their resolve; these participants reported capitulating under pressure from their condom-refusing partners. These factors include one’s intuition about the partner’s relative risk, their history together, and the attractiveness/persuasiveness of the partner. For this woman, their history and her partner’s persuasiveness undid her resolve:
Well I kept asking him [to use a condom], you know. But I kept having sex with him anyway. And I would keep asking him to wear it on but, he wouldn’t. You know. He said it was like taking a shower with a raincoat. So, he wouldn’t do it. You know. And I really liked him so I didn’t really say anything. But then, um, he broke up with me. INTERVIEW 6 (374–379)
Although none of the interviews identified emotional issues as barriers to condom use, they appear to be involved in all the instances of resolve being undone. These data suggest strongly that interventions addressing barriers need to integrate emotional processing interventions along with skill building.
A sizable portion of the sample reported that the structure and focus of the supportive housing programs have helped them exercise personal care to a greater extent than in their recent past. They explicitly connected their efforts to improve their mental health with overall efforts to improve health. When asked about what they did to protect themselves from HIV prevention, they included it as a part of an overall health strategy. However, over a third of the sample (n = 14) were not certain that they could follow through on these strategies to promote their health and well-being if they left the structure of the programs. Many of them also expressed a desire to live in independently and to live “safer” than before, although they were not sure of their ability to stay clean of drugs and avoid risky situations for HIV and STDs:
I have gone out there a few months ago and went back to old ways and had some unprotected sex, so I’m nervous about it. INTERVIEW 8 (203–206)
For these individuals, the structure of the programs are helpful in fostering attitudes and support for making health behavior changes, such as HIV prevention. However, some residents appear to be challenged in their anticipated transition from the supports of this structure (e.g., peers, staff, predictable environment) to living on their own.