A Qualitative Study of Barriers and Facilitators of PrEP Uptake Among Women in Substance Use Treatment and Syringe Service Programs

Abstract

PrEP is an HIV prevention option that could benefit substance-involved women, a high-risk population with low PrEP uptake. Little is known about their interest in PrEP. This qualitative study used in-depth interviews to examine PrEP willingness, barriers, and facilitators among 16 women in outpatient psychosocial substance use treatment, methadone, and/or harm reduction/syringe programs in NYC. All expressed willingness to use PrEP, but only during periods of perceived risk. Women perceived themselves to be at high risk for HIV when engaging in active substance use and/or transactional sex. They perceived themselves to be at low risk and therefore unmotivated to take PrEP when abstinent from these activities. Paradoxically, a major barrier to using PrEP was anticipated interference from substance use and transactional sex, the very same activities that create a perception of risk. Facilitators of PrEP use included perceptions of it as effortless (as opposed to barrier methods during sex) and effective, safe, and accessible. Other barriers included fear of stigma and doubts about adhering daily. Recommendations for best PrEP implementation practices for substance-involved women included tailored and venue-specific PrEP information and messaging, PrEP discussion with trusted medical providers, and on-site PrEP prescription in substance use treatment and harm reduction programs.

Pre-exposure prophylaxis (PrEP) has demonstrated safety and high efficacy in preventing HIV acquisition in women and men due to sexual exposure and injection drug use (1). Since its approval by the U.S. FDA in 2012, growing evidence indicates PrEP is underutilized among women (2). Although Black and Latinx men who have sex with men (MSM) bear the greatest burden of new infections, women constitute 15-20% of new HIV diagnoses in the U.S. (3) and in New York City (NYC) (4). As women using PrEP have also demonstrated lower adherence compared to men, there is a significant need to identify how to improve uptake and adherence among women (5, 6), including among substance-involved women, who are at substantially heightened risk for HIV (7).

The vast majority (i.e., 85%) of infections among women are due to heterosexual transmission (8), and substance use is often a driver of this transmission (9). Substance use may cause disinhibition, impulsivity, and hypersexuality (10) and may promote transactional sex (11). Substance-involved women are likelier to have an HIV-positive partner who also is a substance user, heightening potential for intoxicated sex, sexual coercion, and violence (12, 13). Substance-involved women may live within communities with high HIV concentration, where poverty and housing insecurity are endemic (14), which increases the likelihood of an HIV-positive partner and vulnerability to transactional sex.

Although PrEP is a promising prevention option, studies of PrEP with substance-involved women are sparse (15). Little is known about their interest in and willingness to use PrEP (16, 17). Moreover, extent research has focused on perceptions of PrEP among women who inject drugs, with no studies to our knowledge investigating PrEP acceptability among other women who use substances who remain at high risk for HIV (12, 13). Gaps remain regarding PrEP acceptability and the barriers and facilitators to PrEP use among substance-involved women (15), among whom there is an urgent need to better address HIV prevention, as they are often disconnected from the healthcare system (18) and are at heightened risk of mortality from HIV due to sporadic adherence to treatment regimens (19). Using in-depth qualitative interviews, this study examined factors related to PrEP awareness, acceptance, and interest among substance-involved women to elicit individuals’ HIV risk and PrEP-related experiences, attitudes, and needs in their own words (20) and aimed to identify implications for tailoring services for women like them. We focused specifically on women in outpatient psychosocial substance use treatment, methadone maintenance, and harm reduction/syringe services programs in NYC because these women constitute a group at elevated risk for HIV infection. Additionally, substance use programs may be ideal venues for offering PrEP services (18), yet effective strategies for implementation for women in treatment for substance use remain unknown.

Methods

Study Sites

Potential study sites were NYC community-based substance use treatment programs providing psychological outpatient treatment, methadone maintenance, or harm reduction/syringe services. Sites were identified from two lists: (a) a local substance use treatment program list from the Greater New York Node of the NIDA Clinical Trials Network in which author (ST) is an investigator; and (b) an NYC Department of Health and Mental Health list of harm reduction programs. Programs needed to be amenable to participate in research overseen solely by the Institutional Review Board (IRB) at the investigators’ institution. This consideration was necessary because the study was funded for one year only, and inclusion of sites needing review by their own IRB was anticipated to extend the time needed to complete the work beyond this one-year period. Sites were purposively sampled to address two considerations: (1) inclusion of a variety of NYC boroughs and (2) inclusion of three major types of outpatient venues for substance use services (i.e., psychological outpatient treatment, methadone treatment, harm reduction/syringe services). Five programs were selected: (1) psychological outpatient treatment programs (n = 2), including one in Brooklyn and one in the Bronx; (2) methadone maintenance programs (n = 2), including one in Queens and one in the Bronx; and (3) a harm reduction/syringe services program in Manhattan (n = 1). All programs selected were willing to participate. IRB approval was received in November 2014.

Procedures

Participant Recruitment and Eligibility Screening

Recruitment began in December 2014 and concluded in April 2015. Participants were recruited through treatment site staff, who introduced study staff to potentially eligible clients. If a woman consented, research staff conducted a brief eligibility screening interview. Ineligible women received a round-trip MetroCard (i.e., value of $5.50) for their time. If a woman was eligible and consented, the interview was conducted after informed consent was obtained. Interviewed women received a $50 gift card to a neighborhood convenience store. Study procedures and forms were approved by the New York State Psychiatric Institute.

Eligibility criteria comprised: identifying as a cisgender woman; age 18 years or older; fluency in English; self-reported HIV-seronegative status; enrollment in the program in which they were recruited; and past year recurrent substance use, including either: (a) use of non-prescribed stimulants, benzodiazepines, opioids, or marijuana; or (b) heavy alcohol use (four or more drinks per occasion). Enrollment in the program was defined as being active in the program based on each agency’s definition. We initially included an additional HIV sexual risk behavior eligibility criterion—past-year unprotected vaginal or anal sex with a male partner. However, we dropped this criterion so as not to exclude women at higher HIV risk due to their substance use alone. To characterize the sample, we continued to ascertain number of male sexual partners; sexual partnership type (i.e., main partner, casual partner, paying partner); and frequency of vaginal/anal sex and relative frequency of condom use by partner type.

Thirty women were approached for eligibility screening. One woman initially agreed but did not complete screening. Eleven women were ineligible due to HIV seropositivity (n = 4); past-year abstinence from substance use (n = 2); or past-year absence of sexual risk behavior (before the aforementioned change in eligibility criteria, n = 5). In addition, two eligible, initially interested women did not participate in the interview. Sixteen women consented to participate.

In-Depth Qualitative Interview

In-depth semi-structured qualitative interviews elicited women’s perceptions, experiences, and attitudes in their own words. Interviews were conducted at the site where each woman was recruited, immediately after determining her eligibility and willingness to participate, and lasted between 45 and 60 minutes.

Our inquiry was informed by the social ecological model of health (21, 22), which identifies influences on behavior at multiple levels of social organization, and by the Health Belief Model (23, 24), which directs attention to perceived barriers and facilitators of adopting a health behavior. The interview guide began by asking women if they had ever heard of PrEP or pre-exposure prophylaxis; this was followed by reading a brief scripted description of oral PrEP. Participants were then asked why women might use PrEP, who should be using PrEP, reasons why they might want to try PrEP, what concerns they might have about taking PrEP, their own perception of HIV risk, and whether they would use PrEP if they were in a situation of risk from sex. They were asked if they had ever spoken to a medical provider about PrEP and how comfortable they would feel doing so. Additional specific queries elicited responses about required HIV testing before beginning PrEP, effect of PrEP on condom use, daily adherence to pill-taking, injectable PrEP, and thoughts about disclosure to a main partner.

Coding and Analysis

Interviews were digitally audio-recorded, transcribed, and entered into NVivo-10. The coding team (ST, SH, ET) developed an initial codebook after reading two interviews. The initial codebook was guided by our research-informed perspective that the adoption of HIV prevention is influenced by perceptions of anticipated barriers and facilitators that could be categorized as intra-client, social-interpersonal, and structural-systemic. This deductive approach was followed by inductive content analysis to identify how women characterized the benefits and disadvantages of PrEP and their reasons for being willing or not willing to use it. Text segments were marked for the presence of these codes, and the codebook was refined. Coders established inter-rater reliability of coding through independent coding and consensus discussion to arrive at shared codes for all segments, with documentation of decision trails for resolving discrepancies. The codebook was used to code all interviews and was updated with new codes as needed. All previously coded interviews were recoded using the revised codebook. Inter-rater reliability statistics were not computed. To analyze the data, code reports were produced in NVivo. The coding team created summaries for each code and identified main subthemes, including illustrative quotes.

Results

Participant Characteristics

The 16 women, ranging in age from 21-56 (M = 37), participated in methadone maintenance (n = 6), psychosocial outpatient treatment (n = 5), and syringe services (n = 5). They represented diverse ethnic and racial identities and identified a variety of mostly poly-substance use as the problem for which they sought services. Table 1 details participants’ substance use and sexual risk behavior.

Table 1.

Characteristics of N = 16 women recruited from community-based substance use services sites.

Characteristic	M, Range
Age in years	37 (21-56)
Ethnicity	N
African American	8
White	5
Latina	1
Biracial or multiracial	2
Substance Use	N
Using crack	3
Heroin snorting	1
Heroin injection	8
Heroin injection only	3
Plus heroin snorting and/or skin popping	2
Plus heroin snorting and using crack	1
Plus using crack	1
Plus using marijuana	1
Heroin and cocaine injection	2
Plus heroin and cocaine snorting and using crack	1
Plus heroin and cocaine snorting, using crack, alcohol, sedative, and opiate pills	1
Alcohol and cocaine	2
Alcohol and crack	1
Alcohol and snorting cocaine and using marijuana	1
Sexual partners, past year	N
No male partners	2
Main partner only	2
Main and casual partners	3
Paying partners only	2
Main and paying partners	2
Casual and paying partners	3
Main, casual, and paying partners	2
Condom use	N
With main partners (n = 9)
Never	7
Rarely	2
With casual and/or paying partners (n = 12)
Never	2
Rarely	5
Mostly	4
Always	1

Barriers and Facilitators of PrEP Use

Participants’ responses expressed a wide range of perceived barriers to and facilitators of PrEP use, and adherence clustered under three major domains: (a) intra-client factors; (b) social-interpersonal factors; and (c) structural-systemic factors. The effects of some factors (i.e., perceived personal HIV risk, perceived PrEP risk versus benefit, perceived PrEP injection ease versus burden) were complicated – and sometimes functioned as barriers and sometimes as facilitators. Thus, these factors are discussed as mixed influences. Participants provided a range of recommendations for PrEP promotion in their communities.

Barriers to PrEP Use

Intra-Client Factors

Lack of Knowledge of PrEP.

It was common for women to have little knowledge of PrEP, have never heard of PrEP, and to report that their peers might not know about PrEP. Most reported PrEP had never been discussed by their healthcare providers, who would have been an essential source of information. Among several who knew about PrEP, there was conflation between PrEP and post-exposure prophylaxis (PEP), with the belief that PrEP worked retroactively after an exposure. Two women described it as a medication to prevent the spread of HIV, or as an “anti-HIV regime for high-risk people.”

Active Substance Use.

Most women cited active substance use as the main barrier to PrEP use and adherence. They noted the overwhelming dominance of substances in their daily life and the apathy and passivity afforded to other activities as a result, particularly self-care. One woman observed: “…You don’t wanna do nothing… medical or listen to anything if it have nothing to do with what they doing, which is either smoking or shooting or using.” One woman stated: “They gonna go doin’ drugs and leave that pill right there.” One woman expressed this in terms of giving little thought to HIV or other potential negative health consequences of substance use, stating: “Because, um, right now… my life choices aren’t that great, and… I don’t really think about the seriousness of what could happen, … like, getting HIV is not really in my mind at those moments, it’s just… I don’t care, you know?” The intersection of PrEP and substance use occurs by diminishing women’s motivation to engage in health promoting behaviors, paradoxically at the moment when health promotion is most needed. Women’s focus on acquiring drugs directly interferes with their willingness to prioritize adherence to PrEP.

Social-Interpersonal Factors

Stigma.

Several women expressed concern about experiencing stigma because of using PrEP. Some anticipated being stigmatized as promiscuous. As one woman stated: “People judge. If I was taking the pill, I would think that somebody might think that I am doing risky things. And, you know, ‘What are you doing that you have to take this pill?’” Others anticipated being stigmatized for being HIV-positive. As another woman stated: “It would go around that I’m HIV-positive. That would definitely affect the things that I do.” Stigma was a concern that gave women pause about initiating PrEP. Women were concerned about being viewed disparagingly by peers and romantic partners due to stigma surrounding HIV. Some women anticipated being stigmatized by doctors or insurance companies and were reluctant to speak to their doctors about PrEP. One woman, anticipating negative judgment from her doctor for being a sex worker, reported reluctance to seek HIV testing, which she otherwise would have sought. However, there was no indication that the health care provider initiated a discussion about PrEP with her.

Structural-Systemic Factors

Competing Demands of Daily Life Stressors.

Competing demands from daily life stressors were cited as a barrier by one woman. Speaking of her peers, she observed: “They have other things on their mind. They’re dealing with a hectic life, work, different things, different stuff, like kids, family issues… lotta stuff.” Other tasks of daily living described as stressors for women included securing safe and stable housing, adequate nutrition, employment, income, and personal safety. Adherence to a PrEP regimen was viewed as difficult given competing demands.

Limited Access.

Limited access to PrEP was cited as a barrier by one woman. Despite being prescribed PrEP, she experienced ongoing obstacles to acquiring the medication. She described going “back and forth” to obtain insurance approval, and she eventually gave up.

Facilitators of PrEP Use

Intra-Client Factors

Willingness to Use PrEP.

Perceiving the benefits of PrEP, every participant expressed some level of willingness to use it. For some, this was an abstract sense of interest, whereas for others, this was a sense of immediate resolve to action. One-third of women stated that having learned about PrEP, they were planning to act to get a prescription. One woman stated: “I’m gonna go see him [doctor] on the 17th for my physical and stuff and ask him about PrEP.” Another woman stated: “I would give it to my daughter in a heartbeat.” However, as discussed below, this willingness was conditional for women who stated they would use it only if (or when) they felt at risk for HIV.

Oral Contraception and PrEP as Similar Adherence Experiences.

Most women expressed confidence about being able to adhere to daily oral PrEP based on their experiences with oral contraception. One woman asserted it would be easy to use PrEP daily “because it’s like taking a vitamin or your birth control.”

Trust in Science.

Even with (below described) concerns that unforeseen side effects of PrEP might emerge years later, a few women cited their trust in science and research as the basis for willingness to use PrEP. This view of PrEP as a life-saving innovation was highlighted by women who had lived in communities severely affected by HIV. They compared PrEP to the development of effective antiretroviral therapy. One woman stated: “God bless science. We really advanced because I remember back in the day—because I’m 46—so when HIV and AIDS first came out, it was like a death sentence, but now things have improved so much… I respect research. I know research is very necessary, so I don’t feel like a guinea pig. I feel like I’m, you know, helping science, so that’s, like, that’s very cool to me.”

Social-Interpersonal Factors

Personal Relationships with People Living with HIV/AIDS.

Personal relationships with people living with HIV/AIDS were a potent reason for two women’s interest in PrEP. One woman recounted her Narcotics Anonymous sponsor’s emotional appeal: “I have to tell you that I have a sponsor in recovery… And she’s HIV-positive… She kind of really encouraged and motivated me. And the motivation I received was, ‘You don’t want to go through what I go through when you fall in love with somebody and want to have sex with them for the first time, and you have to tell them that you’re HIV positive.’”

Trust in One’s Doctor.

For two women, respect for their physician’s knowledge, opinion, and authority was instrumental in fostering interest in PrEP. One woman emphasized her longstanding relationship and trust of her physician, stating, “‘I love [my] doctor. I’ve known him a long time… If my doctor said that I could—that I should take it, or that it would be all right, I—I would take it, yeah.”

Structural-Systemic Factors

Access to PrEP.

Most women stated it would be convenient to be prescribed PrEP either from their primary healthcare provider or their substance use treatment program. Especially because of New York State policy providing coverage for the cost of PrEP to those with Medicaid, cost was not cited as a barrier in this sample. Two women explicitly stated that their health insurance would cover it.

Intra-Client Factors Functioning Both as Barriers and Facilitators

Three factors (i.e., perceived personal HIV risk, perceived PrEP risk versus benefit, perceived PrEP injection ease versus burden) were complicated—and sometimes functioned as barriers and sometimes as facilitators.

Perceived Personal HIV Risk

Women’s perceived personal HIV risk was fluid, particularly dependent on whether or not they were engaged in substance use and/or transactional sex they perceived as risky. Further, willingness to take PrEP was also nuanced, heightened by a sense of high HIV risk and dampened by a sense of low HIV risk.

High Perceived HIV Risk.

Some women cited high perceived HIV risk as a facilitator of PrEP use. Three major behaviors were identified as risk sources: transactional or commercial sex, sex (consensual and non-consensual) while intoxicated, and sex with partners who have concurrent partners and/or whose HIV status is unknown. Regarding transactional or commercial sex, one woman explained, “I think PrEP is good for me because… I’m out there doing what I got to make my money… Sometimes there’s no condoms, and I don’t care. I do it because I just want to use.” For sex while under the influence, one woman described PrEP as important “in case they get sloppy at a bar, drink too much, or they get too high, or unfortunately, in the case of, uh, drug-related rapes, or, you know, date rapes and stuff like that.” Another woman viewed PrEP as useful to protect against the risk of sex with partners who have multiple partners and/or whose HIV status is unknown: “Because I’m sleeping with men, and I don’t really know much about… They could be seeing everybody… I don’t know who they’re seeing besides me.” One woman stated, “With the medications they have out today, it’s not like, I guess, how it was years ago, where you could actually tell that somebody is HIV-positive. As where today the medication they have, it seems to be helping more, so it’s very hard to tell if somebody does have it.”

Low Perceived HIV Risk.

However, several women considered themselves as having no or low risk for contracting HIV. This dampened their motivation to take PrEP. A few women attributed their low risk to being abstinent from substances, to using needle exchange programs for unused needles, or to having low sexual risk. Many perceived other women might have low sexual risk for HIV: …“Cause she’s probably using protection. And she don’t have to be scared about it.” Paradoxically, it is during these times that women are most often engaged in health care and were motivated to practice self-care, like taking PrEP.

Perceptions of PrEP Risk Versus Benefit

Concerns about potential (especially long-term) side-effects from PrEP were commingled with perception of the benefits of PrEP. This mix of perceived risk and benefit was a source of both willingness and reluctance toward PrEP.

Perceptions of Risk from Side Effects.

All women noted concerns about side effects. One woman stated: “There’s always side effects, one to a million.” Participants were concerned about short-term side effects such as nausea, fatigue, decreased appetite, and impact on sex drive. Women also expressed concerns about potential longer-term side effects of PrEP that may not yet be apparent. One woman worried her long-term health could be compromised by using PrEP: “I don’t know how long this has been studied on. You know… I don’t want to like, in 20 years find out that there’s something… Sometimes you see on these commercials… “If you were taking this and you had this.” The lack of familiarity with PrEP allowed for speculation about safety issues.

Several women asked questions about possible interactions between PrEP and medications they were currently taking or, in one case, with a substance of abuse. Here, the intersection of PrEP with other substances and medication is evident in the form of uncertainty around safety. Some women expressed concerns about the effect of PrEP on pregnancy and sought more information about potential effects on the developing fetus. Participants emphatically stated they would only use PrEP if there were no negative effects for a fetus. One woman stated that she would not use PrEP if she were pregnant. Two women expressed concerns about potential side effects for partners; one questioned whether it would “affect ejaculation?”

At the same time, a few women highlighted the irony they perceived in feeling concerned about the safety of PrEP when they had readily ingested a substance of abuse, the dangers of which are known. As one woman stated: “Well, I wasn’t concerned about smoking crack, and that got side effects! So, you know… This side effects is not… can’t be nothing compared to the side effects I got with smoking drugs.” However, as mentioned above, active substance use presented a barrier to PrEP, therefore overshadowing any potential safety concerns.

Perceived HIV Protective Benefit.

Despite concerns about possible side effects, most women also perceived the benefit of PrEP to prevent HIV. This was described as effortless protection from HIV during sex, along with (or instead of) condom use. One woman stated: “This pill would be good for me because I know that I’m pre-protected—if anything happens. Like the medication is already in my system. So, if a condom accidentally busts, or we don’t use a condom…” Especially among women from communities with high prevalence of HIV, PrEP was perceived as a means of “ensuring safety” and “peace of mind.”

Perceived PrEP Injection Burden Versus Ease

Administration of long-acting PrEP by injection also prompted both willingness and reluctance toward taking PrEP. On the one hand, injectable PrEP was perceived as a quick, low-demand method of taking PrEP that eliminated the responsibility of daily use. On the other hand, injectable PrEP triggered discomfort and mistrust about injection, especially in the context of difficult injection histories of some women.

When asked how they might feel if PrEP became available in injectable form, nearly a third of participants stated they would not be willing to use it. Explanations for this ranged from a dislike of needles to a belief that “Anytime you inject something, there’s always more side effects.” This may represent the intersection between substance use and PrEP; whereas PrEP is unfamiliar, experiences with injecting substances to “get high” are a salient memory. Injectable PrEP may be “triggering” as a route of administration that mirrors substance use.

However, the majority viewed injectable PrEP as a solution to the possible problem of non-adherence to daily oral PrEP. They anticipated injectable PrEP would mitigate the obstacle of forgetting to take PrEP daily.

Recommendations For Strategies to Promote PrEP Use

Women in our sample suggested strategies for promoting PrEP among substance-involved women. These included structural and concrete strategies for PrEP education, dispensing PrEP, and increasing PrEP adherence.

PrEP Education

Several women stressed the importance of educating people about PrEP, how it works, and how to access a prescription. A variety of street venues frequented by substance-involved women were recommended as sites for PrEP education. One woman suggested providing PrEP education at harm reduction programs. Another woman suggested providing PrEP education on the street: “Get it on the street. Have a van or something available like a syringe program. Have a van that goes to the neighborhoods.” One woman suggested providing PrEP education at sex workers’ work sites: “Go to the places where sex workers meet their clients (“the strolls”) or “where the clubs are and stuff like that.” One woman remembered working in a lap dancing club where someone would “come in every single day that would bring a big bag of condoms for my girls.”

Dispensing PrEP

Several women recommended their substance use treatment programs as ideal sites for dispensing PrEP. They characterized these programs as places where they experienced acceptance of their choice to engage in substance use and/or sex work. They contrasted this with offices or clinics of non-substance use-related health professionals, where they felt more likely to experience stigma. One woman suggested it would be better to “get it through a program like this, where they’re used to having… for lack of a better word, sexual deviants such as myself.” Another woman stated: “I think it would be helpful because a lot of women don’t have health providers on the outside—they don’t just regularly go to their doctors. They don’t regularly seek the gynecologists, they don’t go—you know, when you have a drug habit, those things aren’t on your mind.” Another woman suggested integrating PrEP into substance use treatment programs, which women frequented anyway, to reduce the prospect of being identified and potentially stigmatized for seeking HIV-related health care.

PrEP Adherence

Daily reminders that could easily fit into women’s routines were recommended. These included voicemail or text messages, pill box reminders, setting alarms, and handwritten personal notes. Women suggested incorporating PrEP into other daily routines, like morning coffee or vitamins. Another woman challenged the perceived difficulty of daily PrEP adherence, saying, “Listen, if they can paint their nails and put on lipstick and brush their hair and brush their teeth every day—it takes less time than brushing your teeth, right?”

Discussion

This study recruited women with recent problem substance use engaged in outpatient syringe exchange, psychosocial, or methadone treatment programs. Using in-depth qualitative interviews, we elicited women’s own perceptions of their HIV risk, attitudes about PrEP, and experiences with PrEP. The depth and richness of the data expand upon previous, mostly quantitative research and offer underlying explanations for prior findings (25, 29). Women’s personal narratives highlighted the struggles that substance-involved women face in navigating the impacts of poverty, addiction, stigma, and self-care. The participants shared candid and deeply personal experiences of being sexual assault survivors, being sexually exploited for drugs or money, and feeling judged and marginalized, against the backdrop of a cycle of abstinence and relapse from substance use. These data highlighted the complexity of engaging substance-using women in PrEP and demonstrating, unlike other research, that nearly every barrier could be conceptualized as a facilitator and vice versa. The recommendations offered by women are simple and pragmatic. This study reveals that while advances in pharmacology may provide a solution for HIV, implementation is highly dependent on a confluence of social ecological and behavioral challenges that are dynamic and difficult to overcome. Ultimately, this study offers a nuanced perspective that should be considered when developing interventions. Knowing the specific challenges, needs, values, and feelings of each prospective PrEP user is a requisite for any credible attempt to develop and maintain adherence.

Participants identified an array of barriers and facilitators of PrEP uptake that clustered under intra-client factors (e.g., attitudes toward PrEP), social-interpersonal factors (e.g., relationships, social environment), and structural-systemic factors (e.g., access, insurance). Participants provided specific recommendations for promotion of PrEP use and adherence. Findings have direct implications for PrEP messaging, education, and service delivery for substance-involved women. Salient, overarching themes are discussed below.

Knowledge or awareness of PrEP is a prerequisite for PrEP use. In our study, PrEP knowledge was very limited. Most women had never heard of PrEP. This is consistent with prior research with substance-involved women: A meta-analysis of studies with substance-involved women in the U.S. found that only 20% were aware of PrEP and, of those, only 60% reported willingness to take PrEP (6). Similarly, in a study of women who injected drugs, nearly one-third never heard of PrEP despite reporting transactional sex, condomless sex, and sharing needles (17). Lack of awareness among substance-involved women may stem from the heavy emphasis of PrEP marketing for MSM and transgender women (17, 26). Culturally responsive educational and marketing campaigns targeted toward women may bridge gaps in knowledge and awareness.

Viewing PrEP as beneficial was another important condition. Women in our study viewed PrEP as an effective, easy to use, female-controlled, and inconspicuous method of HIV protection without significant side effects. Only a few expressed concerns about medication interactions with substances or effects on reproductive health. Women tended to express that the benefits of PrEP outweighed potential harms. These findings are consistent with a prior study with women who injected drugs who viewed PrEP as beneficial, particularly if they perceived themselves to be at high risk (16). Educating substance-involved women about benefits of PrEP has may enhance positive perceptions and increase uptake.

Perceived HIV risk can be powerful motivation to use PrEP. Nearly all participants felt they would only be at risk for HIV if they were actively using drugs and/or exchanging sex for drugs or money. They shared that under these conditions, they would readily use PrEP. However, being in treatment, many women in our sample did not currently feel at risk, nor were they ready to initiate PrEP now. These findings align with results of a recent qualitative study conducted with women, all of whom were either engaging in transactional sex or syringe sharing or had an HIV-serodiscordant partner. Women in that study perceived themselves at high risk for HIV, which increased their interest in PrEP initiation (16). Women in recovery from substance use may not perceive themselves to be at high risk and may be less likely to initiate PrEP.

Among women in our study, in the hypothetical situation of perceiving oneself at risk for HIV, anticipatory willingness was widespread—nearly unanimous. However, only a limited subgroup perceived themselves to be at current risk and were willing to use PrEP now (or were using PrEP already). The conditional nature of women’s willingness to use PrEP suggests a distinct need for education about taking PrEP preventatively when risk situations are a potential part of one’s lifestyle.

Prioritizing PrEP was another important condition for using PrEP. This makes periods of active substance use, when perceived risk might be heightened, problematic. When seeking, craving, using, being high, or coming down, these substance-involved experiences become priorities (18). Similarly, women who were overburdened by tasks of daily living (e.g., housing, nutrition, employment, income, safety) were unlikely to express interest in PrEP. Women should be encouraged to begin PrEP during stable periods in their lives to facilitate strong adherence and integration of PrEP into their routine.

Interpersonal relationships and social context were powerful influences on willingness to use PrEP, functioning both as barriers and facilitators. Sense of stigma, a common aspect of women’s lives, was a major barrier. For many, PrEP and its required serial HIV testing carried the possibility of stigma from others as being promiscuous, actively using substances, engaging in sex work, or being HIV positive, as described in other studies (27). This is consistent with observations that HIV stigma compounded the effects of other stigmatized identities, resulted in reluctance towards HIV testing, and fostered convictions of it being “better not to know” among heterosexual women in high-risk, urban areas (28).

Prompted by stigma, mistrust of the medical establishment was another barrier to PrEP use. Women reported negative experiences with providers, which exacerbated mistrust and reluctance. This is consistent with prior accounts of stigma and bias related to substance use and sexual behavior as major barriers to care among substance-involved individuals (29).

Conversely, women identified several facilitators of PrEP use, including relationships with trusted friends, peers, and providers. The experiences of knowing individuals living with HIV or being connected to a healthcare provider who recommended PrEP were described as compelling reasons to initiate PrEP. Women described wanting to receive PrEP information and treatment from substance use program providers with whom they had established strong, supportive relationships. They emphasized that a stigma-free social context for PrEP use would be necessary. These findings build on prior studies that found women in the U.S. to be likelier to use PrEP if it was recommended by a medical provider or a partner (30) and if they could take it in a private, stigma-free place (31).

Convenient access to affordable PrEP was another essential element for PrEP use. Cost was not a barrier for the women in our study, many of whom were eligible for Medicaid or were otherwise insured. In New York State, PrEP is covered by Medicaid and most insurance programs. Similarly, women reported ready access to public transportation to pharmacies and health services. However, there was concern about access and cost for undocumented or uninsured women. As past research has demonstrated how marginalized and under-resourced individuals report difficulty accessing PrEP and may lack access altogether (32), future intervention strategies should address structural barriers (33).

Implications for PrEP Implementation

Several major recommendations for effective implementation of PrEP with substance-involved women in this study emerged, some of which are novel and others which align with recommendations from prior studies conducted with women who inject drugs (15, 16, 17). Women urged the use of venues for PrEP care where they already felt comfortable accessing services. In line with a recent qualitative study conducted with a predominantly white sample of women who inject drugs (16), the racially and ethnically diverse sample of women in this study emphasized substance use treatment programs as an optimal venue for PrEP referral and treatment. Co-location of PrEP with substance use services may reduce barriers by “meeting women where they are,” an important harm reduction strategy. Because existing qualitative literature on PrEP among substance-using women has focused on women who inject drugs recruited from syringe services programs (16), this study yielded valuable information about PrEP awareness, acceptance, and interest among women who use substances recruited from community-based substance use treatment programs. For these women, treatment programs were viewed as a stable source of psychosocial and instrumental support (i.e., case management, advocacy). They cited strong connections to trusted providers as an optimal context for PrEP discussions. One strategy suggested by women in this study was the use of mobile vans at locations where women using substances may congregate, like syringe-exchange programs. They recommended canvassing popular sex work venues with information about PrEP, such as ongoing outreach efforts to offer condoms, which would leverage social networks of substance-involved women as suggested in prior research with women who inject drugs (17). This study, through identifying viable avenues for PrEP implementation with substance-involved women, has provided insights into when and how PrEP should be packaged and distributed for these women (15).

Women’s relative lack of awareness and information about PrEP underscored the importance of enhancing marketing strategies that speak to women. Advertisements in print, on television, and on social media should be more inclusive and should deliver more culturally relevant messaging tailored to diverse women who have sex with men (16, 17). Education about PrEP must address common misconceptions, dispel myths, and emphasize benefits of PrEP. Educational materials, programming, and didactic methods employed by counselors, peer educators, community health workers, and medical staff should communicate in plain language how PrEP is used. Workshops, support services, and therapy groups should enlist credible messengers, including women living with HIV or women taking PrEP who have been substance-involved to generate interest in PrEP by sharing personal experiences.

Women’s lack of PrEP information and their common experiences of stigma highlight a critical need to enhance health professionals’ training regarding the benefits of PrEP for substance-involved women. Improving training of substance use treatment providers and medical providers may ensure professionals are prepared to offer PrEP to substance-involved women as standard practice. Curriculum must educate about the efficacy, safety, and implementation of PrEP; include models of affirmative, patient-centered care for substance-involved women; address stigma and bias in care; and offer experiential exercises to increase self-awareness. Primary care settings, hospitals, schools of medicine, and nursing programs would be especially useful venues for educational campaigns.

Limitations

Study data, including HIV-serostatus and substance use, were limited to self-report. Questions about PrEP willingness were hypothetical and may only have limited association with actual future behavior. Social desirability may have prompted women to provide answers aligned with what they suspected was the researchers’ perspective. This sample was limited to women in substance use treatment and/or harm reduction programs who were relatively stable and free from active substance use and crisis. This may have restricted the range of responses to more optimistic perceptions about PrEP. The sample of programs was small and limited (i.e., both in terms of program type and in terms of being amenable to participating in research solely overseen by the investigators’ IRB). All these constraints surely limited the prospect for generalizability of results. Additionally, women in this study were living and receiving services in NYC, a large metropolitan area with significantly more healthcare and HIV prevention resources than many other areas of the U.S., particularly compared to rural areas in other states (34). For this reason, findings cannot be generalized to rural samples of substance-involved women. Future research should investigate PrEP implementation with substance-involved women in rural areas given the major differences that may affect prevention and treatment across these populations.

Conclusion

PrEP uptake among substance-involved women is a critical priority to reduce HIV incidence. Women in treatment are ideally situated to engage in PrEP because of their connections to healthcare providers, access to insurance, and willingness to consider ways to reduce their risk during difficult times in their lives. This qualitative study offered rich perspectives from the voices of women who are often unheard, overlooked, and underserved. Findings outlined an intervention research agenda to meet their HIV prevention needs. Future research should examine how promoters of PrEP uptake (e.g., social support, willingness to use PrEP) can be leveraged with other resources to encourage women to initiate and adhere to PrEP.

Availability of data and material:

Data and material can be made available on request as permitted by Institutional Review Board approval.