Risk for HIV acquisition among US cisgender women is not distributed equally, with women of color disproportionally bearing the burden of new infections . However, when examined against the abundant literature among MSM, there is a relative lack of understanding in research of the needs and experiences of cisgender women with regards to using PrEP for HIV prophylaxis. Thus, identifying factors that influence PrEP uptake and adherence among racially and ethnically diverse cisgender women is central to curbing the US epidemic, improving PrEP utilization, and to designing effective interventions among this under-represented subpopulation of individuals at risk for HIV acquisition.
Focus groups, predominantly comprised of cisgender women at-risk for HIV infection, were carried out to understand PrEP awareness and to identify potential supports for PrEP uptake and adherence. In findings similar to those of previous qualitative studies among women, knowledge about PrEP was limited; however, women expressed high rates of interest in taking PrEP . This continued mismatch between women’s awareness of and interest in PrEP may contribute to the continued low rates of PrEP utilization among cisgender women.
Women described anticipated benefits of using PrEP, including freedom from worry about HIV, the ability to engage in serodiscordant relationships, holding greater control over their sexual health, and broadened choices with regards to methods of HIV prevention. They also described a number of facilitators of PrEP initiation and adherence, including using reminder systems that are effective for other medications or behaviors and receiving social support from partners, family, friends, and medical providers. They also emphasized that connecting with other women taking PrEP and hearing from WLHIV would be support of their PrEP use.
However, discussion of the potential benefits of PrEP and of methods of improving using PrEP use were measured against concerns, such as potential increases in condomless sex, medication side effects, lack of protection against other STIs, and the absence of long-term follow-up studies on potential adverse events and toxicities of PrEP. Many of the barriers to PrEP uptake and adherence expressed by women echoed those reported in other studies among women and among MSM. For instance, women identified structural (e.g., limited accessibility of services, cost), cognitive (e.g., perceiving oneself to be at low HIV risk), and social barriers (e.g., lack of support from partners, concern about being misidentified as living with HIV) as impediments to initiating and adhering to PrEP [15, 22, 23]. Medical mistrust also tempered enthusiasm for PrEP, particularly among Black and Latina participants. Medical mistrust and HIV conspiracy beliefs have previously been reported as barriers to ART adherence, particularly among racial/ethnic minorities [13, 24]. As a result of a legacy of institutional racism within research and the medical system, there remains uncertainty, misinformation and mistrust about various aspects of HIV, particularly among Black and Latinx communities, which could ultimately affect widespread PrEP acceptability among the communities most vulnerable to HIV [25–28]. Thus, PrEP uptake and adherence may similarly be influenced by these factors .
Cisgender women were also uniquely concerned about whether PrEP could be taken during pregnancy and remarked on the perceived inadequacy of studies investigating the potential for reproductive harm. Although other qualitative work has reported expressed curiosity among women with regards to the safety of PrEP use during pregnancy, reproductive concerns were not previously prominently cited as barriers to PrEP use . Other studies have highlighted reductions the ability to conceive healthy children when a male partner is living with HIV as a reproductive benefit of PrEP . Lastly, underscoring the centrality of social and relational identities among women, participants also anticipated that pressure to fulfill social and occupational roles would interfere with their ability to prioritize their sexual health needs and hinder their ability to take PrEP consistently.
A number of recommendations emerged from the focus group discussions. In particular, women suggested methods of increasing PrEP awareness among members of the general public by using diverse modes of advertising (e.g., social media or online forums as well as television commercials and billboard advertisements). They also advised more targeted PrEP messaging, tied to their perceptions of who is at greatest risk of acquiring HIV, either by their behavioral characteristics (e.g., multiple sex partners, sex workers, IDU), belongingness to vulnerable demographic strata (e.g., youth and young women in particular, ethnic/racial minorities) or dyadic characteristics (e.g., women in serodiscordant relationships or those in relationships with doubt about their sexual partners’ faithfulness). Women suggested increased advertising about PrEP in spaces frequented by those at risk for HIV such as schools and prisons as well as places where women seek reproductive care including Planned Parenthood and at gynecologists’ offices. Similar to suggestions to support women who are on PrEP, participants advocated for hearing from other women, particularly those living with HIV, to further foster interest in taking PrEP. Thus, increasing PrEP messaging and varying its modes of delivery, while also emphasizing the benefits of using PrEP articulated by women, may drive PrEP uptake among cisgender women.
An interesting finding that emerged from the first focus group with women of mixed serostatus was that WLHIV would have been interested in taking a prevention pill had one existed when they were younger. This finding is in contrast to results from a previously-published qualitative study which reported that WLHIV were reluctant to recommend PrEP to HIV-uninfected women, citing reasons including access, cost, potential side effects and the ability to simply use condoms instead . These disparate results could reflect the diversity in geographic settings or participants’ differing experiences with HIV medications; however, they could also be related to the structure of the focus groups, with our study having WLHIV and women without HIV infection together as opposed to segregated by serostatus, as in the previous study.
In summary, this study corroborates and extends prior work examining PrEP attitudes and knowledge and also identifies strategies to potentially improve PrEP uptake and adherence among women. Our findings suggest a need to emphasize that cisgender women can be at increased risk for HIV, as they remain relatively unaware of PrEP, and suggests ways of altering current messaging about HIV prevention for cisgender women. Concerns raised by women in our focus groups suggest that, to engage racially and ethnically diverse female audiences, PrEP information will need to directly address reproductive safety, include representation by women other women can relate and attend to, and be widely disseminated in places where at-risk women will notice. Efforts to provide PrEP education must also address HIV knowledge, medical mistrust, and HIV stigma. The varied strategies suggested by women to improve PrEP awareness may be important for disseminating PrEP knowledge, given the difficulty in having cisgender women self-identify as at-risk and of having health care providers identify cisgender women who are at increased risk for HIV acquisition.
Our study findings should be considered considering its limitations. First, our participant sample was small, limiting the generalizability of our findings and potentially limiting the ability to reach saturation of themes. Second, as we only utilized focus groups, we may not have been able to achieve the same degree of insight as with a combination of in-depth key informant interviews and focus groups. Future work should consider utilizing a larger sample and multimethod qualitative approaches.