Demographic characteristics of the study sample are provided in Table 1. The average age was 30.9 years (SD= 6.8) and 9.7% identified as Latina. Most women were unemployed (71%) and reported stable housing (94%). In terms of sexual activity, 55% reported sex with men and 25.8% reported sex with men and women. While 71% of the sample reported being aware of PrEP, knowledge regarding its use, efficacy, and availability was limited. No participants reported past or current PrEP use. In terms of HIV, hepatitis C, and sexually transmitted infection care, virtually all women reported lifetime testing experiences. More than two-thirds of women reported a diagnosis of hepatitis C and more than one-third reported at least one bacterial sexually transmitted infection diagnosis in her lifetime (Table 2).
Three themes emerged from the qualitative interviews. First, women reported various opinions on personal HIV risk perception in present-day terms and also in the hypothetical future. Second, participants shared perceived barriers and facilitators to personal PrEP uptake related to potential side effects, pill-taking behaviors, and risk scenarios that would motivate or impede their interest in PrEP use. Third, women communicated assessments of partner PrEP utilization as a possible indication of infidelity or partner engagement in high-risk substance use or sexual behaviors with often ambivalent reactions.
Theme 1: HIV Risk Perceptions
Overall, women reported low perceived risk for HIV transmission related to perceived mutual monogamy, discontinuation of sex work, general sexual inactivity, elimination of situations that would raise risk of sexual assault, or discontinuation of substance use. This perception had an inherent temporal ordering where women would describe their previous behaviors that increased their risk of HIV acquisition including sex work, sexual assault, multiple partners, condomless sex, sex while using drugs, and needle-sharing behaviors.
The majority of participants indicated that they are currently in a mutually monogamous relationship or not sexually active. Consequently, HIV risk perception was relatively low for most women at the time of the interview. As one participant shared, “Right now I'm not sexually active. I haven’t been sexually active in over a year. So, I don’t really pay [HIV] no mind.” (Participant 22, 45 years old). This represents a sentiment echoed by other women regarding their goal of sobriety coupled with being in a committed partnership: “[I’m not at risk for HIV] because I’m not using. And like I said, if I did use, I always used a new needle and I’ve been with the same person for a long time now.” (Participant 33, 28 years old).
While many participants self-assessed their HIV risk as low, others described scenarios that could change risk calculations. These conversations often focused on mistrust and dishonesty between sexual and needle-sharing partners that may elevate or reduce HIV risk perception based on their interpersonal encounters and social environments. As one woman describes:
Just that, I don’t know, risk versus reward. There’s no reward getting HIV. The risk is really high, so it’s just not worth it, and people lie all the time. You can’t count on someone to go and get tested and bring in the test results. (Participant 29, 30 years old).
Women described the idea of HIV-risk considerations being rooted in an informal, spur-of-the moment feeling that estimates a partner as potentially infected with HIV or not. In this case, women may erroneously judge a sexual or needle-sharing partner as low risk or rationalize a behavior in her mind. As one woman explains:
It’s not the safest lifestyle, but I know people who will share a needle with anybody and may not think twice about it. Okay, people lie all the time. Why would you trust somebody with something like that? But I would consider somebody like that a higher risk, but I know on paper, I would be considered in the high-risk category. (Participant 32, 29 years old).
Risk calculations in hindsight feel very different from those when women decide to engage in behaviors that may elevate their HIV risk. For example, one participant describes the idea of a partner’s HIV status not being blatantly obvious:
Even though I’m not using needles, it doesn’t mean that I won’t [share needles] because I do have slipups with them and even with sexual partners. You can’t look at somebody and tell that they have it and it could be somebody that you’d least expect. (Participant 25, 35 years old).
Theme 2: Barriers and Facilitators to PrEP Initiation
While the majority of participants were aware of PrEP prior to study involvement (71% according to baseline surveys), direct knowledge was low. Specifically, most women could not accurately describe the purpose of PrEP or express how it works. Some indicated a vague recollection of the concept; however, knowledge of its use for HIV-uninfected individuals was rare. Some participants believed it was synonymous with post-exposure prophylaxis. Others expressed disbelief and surprise that such a medication existed. As one participant stated:
I have no idea about a medicine that you can take to prevent HIV. I’ve heard of it, like here and there. People will tell me ‘I’m taking a medicine to prevent HIV’. I say, you’re crazy. Is that really a thing? (Participant 41, 29 years old).
For those women who had expressed prior awareness of PrEP, most described learning about it from either television commercials or print media at a local HIV service agency that offers a syringe exchange program and HIV testing services.
Women described multiple scenarios that would facilitate PrEP initiation including condomless sex with new or multiple partners, relapse or return to injection drug use, and reengagement in sex work. They spoke of sexual assault in past terms only. In terms of sexual risk, women often reflected on the past and used hindsight to consider whether PrEP would have been appropriate for them. They did not express insight regarding the frequent course of substance use disorder including relapse and remission. As explained by one participant:
I probably should have taken [PrEP] when I was using, when I was actively prostituting. I would have been huge to take it because ultimately the idea is to not expose yourself at all, but I was putting myself in high-risk situations and not having any backup. Ideally I should have just been on it altogether, but when I started using again it wasn’t necessarily my intention was to go back to doing that. (Participant 38, 25 years old).
For other woman looking prospectively, they acknowledge the role that PrEP may play in their future sexual risk behaviors, as described by one woman who shared:
I still do associate with people within a certain circle and you never know. I’m not going to say that I’m still not going to turn a trick here and there in order to get money. Why not protect myself? (Participant 35, 30 years old).
Some women described PrEP as a representation of self-respect and self-care, especially in light of the potential for concomitant exposure to HIV via sexual and IDU behaviors. As one participant shared:
I hope I don’t, but let’s say just a few years down the road if I ever do relapse or something does happen. Or even if I don’t relapse and meet someone and something happens, I kind of want to be a little extra prepared… (Participant 19, 22 years old).
Other women could foresee a situation warranting PrEP use given a change in sexual partnerships. Many women did not envision themselves to need PrEP at this point in their lives, often related to their overall recovery process. They did not reflect upon the fact that one sexual encounter or shared needle could result in HIV acquisition. However, they often expressed a “what if” scenario where they could visualize a future in which PrEP played a role in their HIV prevention efforts, most often related to transactional sex. For example, one woman described her interest in PrEP with a hypothetical future:
I’m not perfect. Sometimes I do forget to wear protection. I’m human so I fall short, but I’m doing everything I can to prevent that from happening. Like PrEP–I don’t feel like I need it at this point. If I were to start up prostituting really bad or whatever it would definitely be something that I would want. (Participant 5, 28 years old).
This sentiment is echoed by another woman who relates her current versus future interest in PrEP utilization by stating:
Realistically, right now, if I don’t ever go back to using stuff, I wouldn’t need it, right? If I went back to using I know I would definitely need it, because I know I’m going to start prostituting again. It just–my pockets aren’t that deep. It just goes hand in hand. (Participant 7, 30 years old).
Commonly cited barriers to PrEP initiation included side effects, concerns about daily pill adherence, and overall impediments to use of the medication. For example, one woman describes her hesitation to initiate PrEP as, “I’d be concerned too about the side effects of it and personally I try not to take anything that I don’t need to. I know a lot of those things have side effects, so I’d wonder about that.” (Participant 21, 40 years old).
When prompted about what would make them want to take or not take PrEP, women often responded with apprehension about the need to take another daily medication. The regimen was considered too burdensome, as explained by one woman who states:
I’m on a medicine that I take every day. So, I’m not really a person that would want to take something every day. Either I’d forget it, or it’s just not… Like I’m not on psych meds for the same reason. I don’t believe in being on something for the rest of your life. I want to be off methadone as soon as I can, because I don’t want to take something every day. (Participant 14, 29 years old).
Another participant speaks paradoxically about potential PrEP use in the context of her recovery process by sharing:
I think if I were to take [PrEP], I would be using… But when I’m using, I’m not going to care about that [taking PrEP]. So that would probably be the only time I would take that because it’s a daily thing. That’s like taking birth control. It’s just a lot to have to do something every day. Like with Suboxone it’s different because I know I need it. It’s the only thing I’m getting right now to satisfy my brain. That is in the back of my head thinking, well, is that the only thing? Even if I have it next to the Suboxone do I really want to take that? But then, I don’t know… (Participant 20, 28 years old).
Women also expressed the reality of the need to take PrEP as a type of wake-up call, reminding them of their risk behaviors and the role that a preventive tool like PrEP can play. This serves for some as a motivating factor, but for other women, this was as a deterrent and reflected the way substance use and self-care do not typically coincide. As one woman states:
If I used a needle, I probably would take [PrEP] every day, but who’s thinking of that one? I mean not wanting to take it, the drug obviously is not going to make you want to take it because you never remember like, why would I take this? That’s why so much HIV is out there. (Participant 36, 27 years old).
Theme 3: Perceptions of PrEP Use by Partners
Women were moderately supportive of PrEP use by their sexual partners. This sentiment was often related to partner PrEP use as a possible indication of infidelity or partner engagement in high-risk substance use and/or sexual behaviors. Many women expressed partner PrEP use as a signal of deceitful behavior, as shared by one woman who stated:
If my partner was doing something like [sharing needles] I’d be pretty upset that he was out there….He’ll go out and just hang out with his friends and there’s a thousand people and if one of you do it, they all do it and they’re sharing a fucking needle and then you never know. Just take [PrEP]. (Participant 36, 27 years old).
For many women in current sexual relationships, there was a common perception of mutual monogamy, but partner PrEP use could be a signal of infidelity. When interview questions probed about partner PrEP utilization, women would often wonder about the motives of their partner, as explained by one woman who shared:
I would question why they were taking it if they were just sexually active with me….If we’re monogamous, there’s no reason for you to take it because if I’m having sex with just you and you’re just having sex with me. Why take it?… However, if they would like to, go ahead. By all means, protect yourself. (Participant 35, 30 years old).
Upon further probing, women who expressed suspicion and mistrust of a partner using PrEP would often follow up with a statement that they would not pass judgement on a partner indicating that it was “his business” to choose to take PrEP:
I think it’s smart, but at the same time, I would hope that you weren’t fooling around on me….If I was with somebody, and they decided they wanted to get that medication, I would be all for it. If that’s something they want to do, I’m not going to stop them because they’re their own person. I let them do whatever they want because at the end of the day, they’re going to make their own decisions. (Participant 31, 24 years old).
Although women were moderately supportive of PrEP use by their sexual partners, they often appeared to have mixed feelings about partner PrEP use. This ambivalence demonstrated their fluctuating thoughts on the understanding of how partner PrEP utilization influenced their own personal HIV risk perceptions. As shared by one woman:
I’d be supportive as opposed to….If he made a mistake or whatever and went out, I can’t blame him. So if he went out and had sex with somebody, of course, it would break my heart. If he went out and didn’t protect himself with a condom or something and was with another girl, and then told me, ‘Oh, now, I’m taking this PrEP stuff then fine’. Of course, I’d rather you be responsible and take something than to hide it and then have me find out six months later that because I gave you a blowjob or something, that all of a sudden, I have HIV. (Participant 9, 36 years old).
The issue of wavering trust was a common sentiment when women explored the idea of partner PrEP use. They expressed a hesitation where, on the one hand, they were guarded about the concept yet, on the other hand, supportive of the notion that a partner would take proactive behaviors to protect oneself. This support was often a reassurance that the partner was seeking out preventive measures to prevent HIV acquisition.
Some participants welcomed partner PrEP use as a potential avenue to expand into concurrent use, whereby both individuals would agree to initiate PrEP. Women expressed the notion that co-use of PrEP could be a bonding experience that might, in fact, strengthen their relationship and prioritize mutual safety. As shared by one participant:
If you feel that’s what you want to do, go ahead. More kudos to you. I mean, I wouldn’t be against it, not at all, because that’s somebody being safe. And maybe if I had a partner that takes PrEP, maybe I would, too. It could be like our daily thing. Let’s take our PrEP. (Participant 14, 29 years old).