A Longitudinal, Qualitative Exploration of Perceived HIV Risk, Healthcare Experiences, & Social Support as Facilitators & Barriers to PrEP Adoption among Black Women

Abstract

Black women contract HIV at much higher rates than White or Hispanic women. Pre-exposure prophylaxis (PrEP) is an underutilized prevention tool among this population. We sought to determine participants’ interest in PrEP and facilitators and barriers to PrEP adoption. This longitudinal, qualitative study included 30 Black women (M_age = 32.2) interviewed 4 times over 6 months. Most participants had never heard of PrEP and a majority expressed initial interest. Barriers to PrEP initiation included low perceived HIV risk, medical mistrust, provider experiences and knowledge, negative reactions from family and friends, low perceived efficacy to adherence, and transportation. This study demonstrated actual, rather than hypothetical, PrEP interest and attitudes among Black women, and the barriers that arose over time during the study. PrEP awareness needs to be promoted among Black women and medical providers. Future research should address individual risk perception, medical mistrust, increasing social support, and decreasing transportation barriers.

INTRODUCTION

While Black Americans comprise only 13.3% of the US population (1), in 2015 they had the highest HIV prevalence rate of 43% (2). Black women also have the highest incidence rate compared to non-Hispanic White (NHW) or Hispanic women, most of which is from heterosexual transmission (86%) (3). In 2017, 59% of new HIV diagnoses were among Black women compared to only 20% among NHW and 16% among Hispanic women (3).

Pre-exposure prophylaxis (PrEP) is a once daily pill that effectively prevents HIV among people who are HIV-negative when taken at least 4 days a week (4). PrEP may be a particularly salient tool for Black women as it is female controlled and clandestine (5), does not require their partner’s cooperation, unlike condoms, and is more discrete than gels or microbicides (6).

In spite of PrEP’s promise as an HIV prevention method for high risk women, less than 10% of people who could benefit from PrEP receive it and women are 5.25 times less likely to take PrEP than men (7). Although several qualitative (8,9) and quantitative (10–16) studies have examined barriers to PrEP adoption among Black women, limited research has explored actual facilitators and barriers of PrEP acceptability or use among Black women over a period of time. Two studies explored whether women in violent relationships were willing to adopt PrEP, without providing opportunities for PrEP adoption, with conflicting results (15,16). A national survey among Black adults found inconsistency between perceived and actual HIV-risk, and medical mistrust was related to decreased willingness to use PrEP (14).

The integrated health services utilization and situated, information, motivation, behavioral skills (sIMB) model was developed to organize multi-level factors that may facilitate or act as barriers to PrEP adoption to inform intervention development (17). The integrated model includes factors such as medical mistrust, social support, awareness, and access.

Medical mistrust, such as discomfort and suspicion toward healthcare personnel (18) and conspiracy beliefs about HIV/AIDS, act as barriers to HIV prevention among Black communities (19) and may be a barrier to PrEP uptake among Black women (18). Black Americans have less access to healthcare services and when receiving services, it is of lower quality (20). One study demonstrated that compared to NHW women, Black women were more likely to report potential PrEP adoption if it was recommended by a healthcare provider (10). Black women also reported that they would be less embarrassed than NHW women to speak with a healthcare provider about their HIV risk behaviors (10). Yet, a more recent study found that Black women were less comfortable than NHW discussing PrEP with a healthcare provider (18). Additionally, Black women who participated in focus groups reported that healthcare providers rarely asked about their sexual risk, short visits hindered trust with providers, and they feared that providers would judge them for their risk behaviors (9). Another study reported that medical mistrust was related to decreased willingness to use PrEP (14). Medical mistrust, such as discomfort and suspicion toward healthcare personnel, is a barrier to HIV prevention (18). Feelings of disrespect and discrimination from both staff and providers, contribute to medical mistrust of the healthcare system (20,21). The long history of medical mistreatment (22,23) and HIV conspiracy theories as ways to kill Black and gay populations (22) also contributes to medical mistrust and avoidance of healthcare and HIV services (22,23). These beliefs act as barriers to HIV prevention among Black communities (19) and may be a barrier to PrEP uptake among Black women (18).

Social support and peer influence may also play a role in receiving healthcare services among Black women (10,23). Black women reported that peer influence (10) and family/friends assuming that taking PrEP indicated an individual was HIV-positive would influence PrEP adoption (9). Pullen and colleagues (23) reported that Black women were less likely to access preventive services if they had strong familial social support, yet were more likely to access preventive services if they had strong social support from friends. Because of the strong HIV stigma within the Black community (2) and possible generational influences or conservative views among older family members, strong family support may prevent Black women from receiving HIV preventive services (23) and affect PrEP interest and adoption.

It is also possible that there are low PrEP adoption rates because of lack of PrEP awareness. While studies reported that very few women eligible for had previous knowledge of PrEP (8,11,24,25), Black women reported high interest in potential PrEP adoption (8–13) compared to NHW women (18). Additionally, studies reported that Black women with medium to high perceived HIV risk were more interested in PrEP adoption (11,13) and those with low perceived HIV risk (and high actual risk) believed that women who should protect themselves from HIV were different from themselves (26). Yet, a survey among Black adults found inconsistency between perceived and actual HIV risk (14). Women who were deemed at high risk for HIV based on risk factors and considered eligible for PrEP based on CDC guidelines engaged in recent unprotected sex (11), had multiple sex partners (10), their partner had concurrent sex partners, or their partner was recently incarcerated (13). Alarmingly, studies reported that among Black women who tested positive for a sexually transmitted disease (STD), approximately 20% did not report any behavioral risk factors (12,13).

A recent review on improving PrEP initiation among US women stated that women who have unprotected sex, have had a recent STD, engage in transactional sex, have a partner with an STD, experience intimate partner violence (IPV), or engage in problematic substance use including alcohol would benefit from PrEP (27). While several studies evaluated women’s interest in PrEP adoption (8–13), they did not offer women the opportunity to take PrEP, particularly over a period of time, to discover actual rather than hypothetical barriers to PrEP initiation.

Present Study

Given the limited research regarding barriers to PrEP adoption among Black women, this study sought to qualitatively determine high-risk Black women’s interest in PrEP and provided them with the opportunity to take PrEP in Milwaukee, WI. While Milwaukee is not considered to have high HIV/AIDS prevalence, it is one of the most racially segregated cities in the U.S. Consequently, Black communities in Milwaukee face abundant social and economic disparities (28). Racial segregation and disparities increase Black women’s risk for HIV. In 2017, Black individuals in Milwaukee accounted for almost two-thirds of new HIV diagnoses (29). In the present study, we observed facilitators and barriers to adopting PrEP over six months including medical mistrust, healthcare-related barriers, social support, and perceived risk. Understanding barriers and facilitators to PrEP uptake is essential to promote its use among Black women at high risk for HIV.

METHODS

Participants

Semi-structured interviews were conducted with 30 Black women (age M = 32.2, range 18–57) four times over six months between July 2016 and April 2017. One participant did not complete her final interview. Participants were eligible if they were 18 years or older, identified as Black or African American, had unprotected vaginal or anal sex with a man in the prior 30 days, and spoke fluent English. To ensure HIV risk, participants had to have at least one of the following risk factors, although most had more than one: experienced physical, sexual, or psychological IPV in the past 3 months (adapted from the Conflict Tactics Scale-2) (30), engaged in sex exchange in the past 3 months (31), or engaged in problematic substance use in the past 30 days. Problematic substance use was defined as any illicit substance use (except for marijuana), more than 8 drinks of alcohol/week or 4 or more drinks on one occasion (32), or marijuana use 14 days or more/month (33).

Procedures

The Medical College of Wisconsin Institutional Review Board approved all study procedures. Recruitment took place in Milwaukee, WI via community events, a clinic, and snowball sampling. LAN and a research assistant sat at a table at community events and informed women about the study. Initial eligibility screening was conducted privately, and women interested in participating provided their names and phone numbers to be contacted to set up an interview. Flyers were sent to clinics along with scripts for nurses to read to inform women about the study. Women who were interested were provided with the study’s contact information. Participants who were interested in referring individuals in their network were given cards to hand out to people they knew with the study’s information, basic eligibility criteria, and the study phone number. They were able to participate whether or not they chose to refer anyone, and no compensation was given to participants who referred peers. Women interested in the study called the study phone number; the research team never contacted anyone directly unless the participant was screened for eligibility and consented to be contacted for an interview (i.e., at community events).

Participants were first consented and then an individual audio-recorded structured interview determined eligibility. Ineligible participants were paid $10 for their time. Eligible participants continued with the remainder of the interview and completed an audio-recorded in-depth interview. They were interviewed again one, three, and six months after baseline. We partnered with a local PrEP clinic and after the baseline interview, each participant was asked if they wanted to set up an appointment with the PrEP clinic. Those who expressed interest had the option of signing a HIPAA waiver so the clinic could share their medical records with the research staff only for the duration of the participants’ engagement with the study. Participants remained in the study regardless of whether they signed the HIPAA waiver. Clinic visits were paid for by participants’ insurance or clinic staff could assist participants with applying for PrEP assistance programs in order to sustain healthcare after the study ended. Participants were contacted every two weeks between interviews for a check-in to increase retention and initiation of PrEP. Participants were paid increasing incentives of $25, $30, $35, and $45 for their interviews. Those who traveled for interviews were reimbursed $5 and reimbursed $15 if they needed childcare during interviews. All interviews were conducted in English and LAN conducted over 90% of the interviews. The remaining interviews were conducted by a research assistant who had prior experience conducting qualitative interviews and was trained by LAN. Interviews lasted between 30 minutes and 2 hours and were conducted mostly in the participants’ homes (~75%) or in an interview room at LAN’s office.

All four interview guides explored PrEP interest, attitudes, and adoption, and hypothetical and actual facilitators and barriers to PrEP adoption. The follow-up interviews asked the same questions and inquired about changes. (See Appendix for interview guides.) At the end of each interview, participants were given a comprehensive resource list including mental health services, substance use treatment services, housing and shelters, crisis intervention, family violence, food pantries, OB/GYN services, STD/HIV testing sites, and LGBT services.

Data Analysis

Previous literature informed the coding including barriers and facilitators to PrEP interest and adoption. All interviews were transcribed verbatim and coded and analyzed in MAXQDA. LAN and JDG developed a preliminary codebook based on research questions, the interview guide, and reading initial transcripts. All three authors utilized deductive and inductive coding to identify family and sub-codes. Transcripts were analyzed using thematic content analysis to identify primary themes. Thematic content analysis was utilized to deductively and inductively explore the facilitators and barriers to PrEP adoption suggested by previous studies. Based on previous studies, all three authors/coders identified codes among participants. Examples of deductive family codes were perceived HIV risk and barriers to PrEP adoption. An example of inductive coding was community violence (see 34). These themes were developed into a preliminary codebook that was further refined using team coding over four iterations. The codebook was finalized once no new themes emerged and consensus was achieved among all three authors. Discrepancies among coding led to discussion among all three authors until consensus was met. Data were analyzed to explore the feasibility and acceptability of adopting PrEP among participants. We explored how perceived HIV risk, historical trauma (i.e., medical mistrust), healthcare experiences, and social support acted as facilitators or barriers to PrEP adoption among Black women. Pseudonyms are presented to protect confidentiality of the participants.

RESULTS

All participants identified as Black, cisgender women (age M = 32.2, range 18–57; see Table 1 for demographics). Milwaukee, WI is not considered an HIV hotspot and as such, participants may have had less awareness of PrEP, which may have affected PrEP interest, and low perceived HIV risk.

Table 1.

Demographic Characteristics

Variables		M	SD
Age		32.20	10.00
Race/Ethnicity
	Black/African-American (n, %)	25	83.33
	Black/African-American & Other (n, %)	5	16.67
Children (Under 18)
	Frequency	2.35	8.01
	Age	8.01	5.13
Children (Over 18)
	Frequency	3.29	1.89
	Age	24.78	5.83
Grandchildren		3.67	2.73

PrEP Interest

Most participants had never heard of PrEP. Two participants had heard of PrEP but did not know exactly what it was and one participant heard about PrEP at a recruitment site when informed of the study. At baseline, a majority of participants expressed interest in scheduling appointments at the clinic to learn about PrEP, be screened for PrEP, and potentially receive a prescription. While many participants continued to express interest in PrEP throughout the study, only three attended appointments at the clinic and four attended appointments at other doctors’ offices. Below we discuss factors that influenced participants’ ability to initiate PrEP in spite of their initial expressed interest.

Perceived HIV Risk

Low perceived HIV risk played a role in lack of PrEP adoption among several participants. A couple of participants stated that they would be interested in PrEP if their risk behaviors changed, such as having multiple sex partners. However, two of these participants suspected that their sex partners had other sex partners and one participant had multiple sex partners during part of the study. Although not recognizing their risk, they viewed PrEP positively for other women whom they viewed at risk for HIV. For example, Destini had unprotected sex with concurrent partners in the beginning of the study, yet when asked about her interest in PrEP she stated during her first interview that “…it would be something I would have to think about.” In her second interview she stated, “I’m walking towards the fence, I’m not there yet…it’s like, am I gonna be promiscuous, or am I gonna be settling down?” While engaging in high risk behaviors, she did not see them as risky. Yet throughout the study she spoke to friends about PrEP whom she thought engaged in high-risk sex and in her fourth interview stated “I wasn’t being mean but I was telling her as a friend ‘you probably need to get that [PrEP].’” Participants felt that people they knew were at risk for HIV and should take PrEP but did not place themselves in that category.

Similarly, Aliyah, 26, discussed PrEP and encouraged her friend to take it because Aliyah believed her friend was at high risk, and stated in her fourth interview, “HIV is out here...This is Milwaukee, its walking diseases all down here.” While many participants were concerned about friends or people they knew who engaged in HIV risk behaviors, there was an inconsistency between how they perceived HIV risk in Milwaukee, others’ behaviors, and their own sexual risk. It was only until two participants discovered that their main sex partners had an STD that they perceived their own risk as high, as happened with Hannah, 32:

Interview 4: Part of me was bull crapping back then, but shit. Like this right here… this is like a warning sign. I think I really need to get it [PrEP]. Well, I was interested, but it was just like I couldn’t find the right time…It just seemed like I was just jumbled up in business, just doing, doing, doing. But now I realize the importance of it now. Because stuff like this can happen to anybody. I don’t want to be a victim of like, shit, death of HIV or anything like that.

Several participants’ interest in PrEP ebbed and flowed throughout the series of interviews depending on their perceived risk for HIV. One participant did not feel she needed PrEP at interview 3 because she had one sex partner with whom she sometimes used a condom, yet she thought he had other partners. However, her interest increased by interview 4 because she was having unprotected sex with multiple partners, which increased her perceived HIV risk.

Other participants stated that they were interested throughout the entire study, indicating they perceived themselves at high risk for HIV, yet never attended an appointment. As Yevette, 36, admitted in her fourth interview:

Can I tell you truly? Just ain’t thinkin’, and forgettin’. And then I keep losing the number. But, I’m gonna do it, I’m gonna do it, I’m gonna do it. I keep tellin’ you this. And I’m gonna do it. I just gotta get the strength to get my butt up and go try it out. I don’t drive [car broke down]. I don’t like the buses, I don’t like the walk.

Another participant, Norshelle, 19, in her fourth interview stated, “I think I just was lazy and didn’t go.” Although barriers such as medical mistrust, support from others, and transportation issues, discussed below, certainly interfered with some women following through on their expressed intentions to start PrEP, the quotes above also indicate that perceived high risk for becoming infected with HIV was necessary but not sufficient to get women to initiate PrEP.

Healthcare-Related Barriers

Medical mistrust and experiences with healthcare providers were mentioned by several participants as barriers to PrEP adoption.

Medical mistrust

Several participants were unsure about PrEP throughout the study. At first, one participant expressed medical mistrust, concerns about effectiveness, and side effects:

Gabrielle, 34, Interview 1: I think if I knew more about the side effects and how many cases, how effective it is. If I knew a little bit more. ‘Cause I don’t wanna take something and then I end up having HIV. I don’t wanna be a guinea pig, and then, it’s sort of scary because I’ve never heard anything about it… I don’t wanna catch HIV by taking a pill, because I’ve heard back in the days how the syphilis shot… that sorta worries me.

Gabrielle’s medical mistrust stemmed from hearing about the Tuskegee Syphilis Study where Black men in Tuskegee, Alabama who had syphilis were told they were being treated for “bad blood” when in actuality, they were not being treated so that scientists could research the long-term effects of syphilis. This went on for 40 years, well after penicillin was invented and could have cured most men (35). The Tuskegee Syphilis Study has led to many in the Black community to distrust doctors and researchers, as expressed by Gabrielle. After discussing PrEP more, Gabrielle did decide to attend an appointment at the clinic to learn more about PrEP from a provider and potentially receive a prescription. However, she had a very unsettling appointment and decided not to return for her second appointment to receive PrEP:

Gabrielle, 34, Interview 3: It was sort of like very brief and short like…not very comforting, like if I was someone really interested in getting PrEP, it didn’t make you feel comfortable or appealing to you. It made you feel like, are YOU even sure about it? Or do they even have anyone HERE that takes it, or you know, how much knowledge do they really have on it? Or how many people…? It didn’t feel very comforting or appealing.

As this participant already had concerns with medical mistrust and was unsure about taking PrEP, this appointment solidified her feelings at the time. It appeared that Gabrielle also felt that the nurse was not very knowledgeable about or prescribing PrEP. Gabrielle felt that the clinic staff should have had better bedside manner and called her with her test results. It is also possible that the staff were not interested in providing PrEP to this participant or were unsure that she was an appropriate candidate for PrEP. However, that was not conveyed to Gabrielle.

Not knowing anyone who was using PrEP also contributed to the apprehension felt by participants. Previously, Gabrielle mentioned that one of her concerns regarding PrEP was having no awareness prior to the study. By her fourth interview Gabrielle thought about going back to the clinic to get the prescription for PrEP:

Gabrielle, 34, Interview 4: I’ve been actually thinking about that lately too because with my situation, like I said it makes me worry and as far as I don’t want to have sex at all but I was thinking like birth control and PrEP. I’ve been thinking about all that lately. I’m just getting older and I don’t want any more situations…Well I actually heard something recently, I just can’t remember where I read or heard either one. When I hear more people using it is something that makes me feel more comfortable. The first time I was hearing about it was through you. So it made me sort of skeptical because I don’t want to be a guinea pig. Yeah, so, I don’t know. I think I might go back and maybe reconsider you know, talk to someone again.

As Gabrielle heard about PrEP from more sources and Gabrielle’s perceived HIV risk increased, her initial experience with medical providers was no longer a barrier to returning to the clinic.

Other participants were unsure or uninterested in PrEP because of concerns about its effectiveness. For example, Cearra, 20, mentioned in her fourth interview, “Right but I remember you saying it wasn’t 100%...That’s why I didn’t take it. Because you can still catch it while you take the pill, right? That’s why I wasn’t interested in it.” When discussing her reasoning further, she explained that taking the pill was the same as not because you could get HIV anyway.

One participant, Beckie, 37, thought taking PrEP would make her more prone to HIV as she stated in her first interview, “I don’t like taking meds that prevent stuff, for some reason it seems like it brings it to you…If you start taking that, then you’ll be more prone.” She equated this to getting the flu vaccine because older family members would frequently get the flu after receiving the flu vaccine. She also expressed skepticism in her second interview that PrEP existed yet there was still no cure for HIV, “I mean, that’s good that they came up with something like that, but if they can come up with something like that, they coulda come up with a cure.” Throughout the rest of the study Beckie’s opinions about PrEP remained the same.

Limited provider knowledge of PrEP

Not only was there a lack of general knowledge regarding PrEP among participants, but three of the four participants who saw physicians outside the clinic we partnered with said their providers had not heard of PrEP. Laila, 30, had an unsettling appointment with her OB/GYN:

Interview 3: Yeah, I was kind of shocked when I told her. She went “Hum. I’ll have to look into that.” You know, so I don’t think she kind of knows a whole lot about it.

By her fourth interview Laila decided she wanted to speak to a doctor at our partnered clinic who did know about PrEP to get more of her questions answered so she could share the information. Another participant had a similar experience with a doctor:

Ladona, 57, Interview 4: So I asked her about PrEP. Now for a minute I don’t think she knew what it was… But she said she gonna look up in the medical book… but I’m gonna ask my doctor.

Ladona wanted to speak to her primary care physician about PrEP the next time and assumed he would be more informed.

Social Support Influences

Other participants had positive opinions about PrEP until they spoke to family or friends who had medical mistrust regarding PrEP. For example, in Verniqua’s first interview, she stated that she would be interested in PrEP if she were not already taking so much medication for a serious medical condition. However, prior to her second interview she had spoken to some of her family members about it who suggested, like Beckie, that taking PrEP could give you HIV:

Verniqua, 36, Interview 2: I spoke to my auntie about it, to my cousins. I asked them, “Would y’all take some pills or injections, for anything to stop y’all from gettin’ HIV?” And they told me, “Oh hell, fucking no.” Because they said “you gonna get it anyway,” … She said “I’m gonna put it like this: Girl, it’s just like the flu shot. When you get the flu shot what happens? You get the flu.”

There is a clear sense of medical mistrust, particularly for preventive medicine. A few participants reported poor experiences with healthcare providers or have had limited access, particularly to proper preventive measures. All these factors can increase medical mistrust among the Black community. After having this conversation with her family and for the remainder of the study, Verniqua was extremely opposed to PrEP.

One participant stated that she was considering PrEP throughout most of the study. However, while she was staying in a shelter, she spoke to some of the women also staying there who brought up some medical mistrust concerns and made the participant reconsider:

Laila, 30, Interview 4: I did talk to a couple girls about it. A lot of them were looking at me like I was crazy… “What if they gave you AIDS in the pill?” You know like “They’re just making you sick.” Then I thought about it maybe like I shouldn’t take it, maybe I shouldn’t because I didn’t think about it like that.

Statements and support regarding PrEP among family and friends played a major role in several participants’ decisions to consider PrEP.

On the other hand, several participants had supportive family or friends, several of whom were going to go to an appointment together. For example, Jayla, 23, explained in her fourth interview why she had not attended an appointment yet:

I definitely was interested… I didn’t want to go by myself. I want to go where I went with my cousin and we have our feedback on it and get all the information that we needed and have a girl’s talk about it or do a lunch date.

Others discussed it with friends and family who at first did not believe such a pill existed and then were very interested in taking PrEP themselves, as well as supporting the participant in taking PrEP such as Tiana, 47, in her third interview, “My sisters, I was telling them about it and they real gung-ho about it.” Participants received both positive and negative reactions from family and friends; some chose to ignore the negative responses whereas others were influenced by their family and friends. Overall, most participants had a positive opinion of PrEP even though very few attended appointments, and none initiated PrEP during the study.

Medication adherence

Adherence to a daily pill was mentioned as a barrier by six participants. Three mentioned they do not like taking medication at all and several others knew they would not remember to take a pill. While some participants stated that they would try the daily pill, even though they never did during the study, some participants stated that they would not consider PrEP unless it were available in another form. For example, Ronelle, 26, stated that she would be interested, “If I don’t have to take it every day, and I can take it like I take Depo.” Otherwise, she was not interested in taking PrEP, which was also indicated her low perceived HIV risk. Several participants asked that they be contacted once PrEP were available in a form other than the pill.

Transportation

Transportation was a significant barrier for many participants. A few participants had cars in the beginning of the study but many broke down later. For both Jaynie and Yevette, transportation was a barrier to getting to appointments. Another participant, Tamila, 27, stated in her third interview, “But I don’t have no way around. I don’t have a vehicle… ” Other participants mentioned their insurance provided transportation, but they had to schedule several days in advance, and this was difficult with their schedules, children, and unexpected crises.

DISCUSSION

Findings from this study corroborate existing literature in that while there is limited knowledge of PrEP (8,11), once participants learned about PrEP, they expressed great initial interest. Results support previous studies in which participants expressed interest in potential PrEP adoption (8–13). This study sheds light on significant barriers to PrEP also found in previous literature including low perceived individual HIV risk (14,26), medical mistrust (9,14,18) often reinforced by family and friends’ attitudes (9,10,23), provider experiences and knowledge (18–21), low perceived efficacy to adherence (36,37), and transportation (38). The longitudinal design also aided in tracking changes in PrEP interest and attitudes, and capturing the barriers that arose over time. While PrEP provides potential for HIV prevention among Black women, particularly in situations where condom use is not an option, strategies must be employed to overcome the numerous barriers to ensure women interested in PrEP have the same opportunities as others.

Although some participants viewed themselves at risk for HIV, there was an inconsistency between how participants viewed HIV risk among others and themselves. Participants would describe others’ behaviors and suggest that they should take PrEP without recognizing that they were engaging in HIV risk behaviors. Other studies have found similar reactions by Black women who felt that they were not at risk for HIV (39) but their community was at high risk (40). It is imperative to increase perceived HIV risk among Black women as studies demonstrated that mid to high perceived HIV risk is associated with PrEP interest (11,13). Studies that increase perceived risk include motivational interviewing (41) and social network interventions (42) to promote PrEP to ensure that women who are more skeptical have time to see others take PrEP and feel more comfortable with its implementation. Observing influential leaders within social groups who are more likely to adopt PrEP, increases the likelihood that others within the social groups will adopt the PrEP.

Many barriers were discussed that prevented participants from adopting PrEP such as medical mistrust, lack of medical provider knowledge of PrEP, and lack of general awareness of PrEP. Some participants, and their family and friends, were skeptical about PrEP and were concerned that it would give them HIV. Results are similar to other studies in which medical mistrust was related to decreased willingness to use PrEP (14,18). Social support and peer influence decreased PrEP interest among several participants. Their family or friends expressed concerns reflecting medical mistrust, which often influenced participants’ perceptions. Yet, one study reported that peer influenced affected PrEP interest (10). This was demonstrated in the current study where participants were more likely to attend or planned to attend a PrEP appointment when a family member (e.g., sister, cousin) did or would attend.

Four participants who were interested in PrEP spoke to medical providers who were not affiliated with the clinic in which we partnered, and three of those four providers were unaware of PrEP, which was unsettling for the participants. One study found that only 37% of primary healthcare providers were somewhat or very familiar with PrEP (43) and another study found that only 28% felt familiar with prescribing PrEP (44). Another study identified that participants were hesitant about PrEP adoption because their providers rarely asked about their sexual risk, short visits hindered the development of a trusting relationship, and fear of judgment of sexual risk behaviors by providers (9). There is a clear need for healthcare providers to be trained to offer PrEP in a culturally competent way to Black women at high risk for HIV.

While PrEP has been promoted among and primarily taken by men who have sex with men, many Black women are also at high risk and less than one-fifth of women who are eligible take PrEP (7). Milwaukee is not considered a high prevalence city for HIV/AIDS and therefore Black women may not be as high risk for HIV as they are in other cities. However, in 2017 Black men and women made up 64% of new diagnoses in Milwaukee (29). Although the updated PrEP clinical guidelines do take HIV prevalence area into account, HIV prevalence network is also part of the guidelines (45). With the HIV infection rate the highest among the Black community in Milwaukee (29), medical providers may want to consider prescribing PrEP to Black women who engage in unprotected sex, have multiple sex partners, their partner has concurrent partners, or their partner was incarcerated (10,11,13).

Limited PrEP adoption among Black women is an opportunity to apply the integrated health services utilization and sIMB to address multi-level factors regarding PrEP adoption to (17). This framework can contextualize the environmental and social factors within sIMB to increase PrEP adoption. Low awareness and high initial acceptability (11) indicate the need to decrease the knowledge gap (information) among Black women, which can be accomplished through individual-level and marketing interventions (8). The present results and other findings indicate the importance of peer/family influence on PrEP adoption (10) and increase self-efficacy regarding medication adherence. In addition, environmental factors such as increasing provider awareness of PrEP, culturally competent training on evaluating patients for PrEP, and building trust with patients are essential. Bus or cab vouchers, or partnering with a ride-share company for low-income women to attend appointments could increase appointment attendance and should be considered for future studies.

Limitations

This study contributes to the literature by following women’s decisions to initiate PrEP over time, yet it is not without its limitations. The findings are not generalizable due to the small sample size and it took place in Milwaukee among Black women. Milwaukee may not be a high-risk city for HIV compared to other cities. Future research should consider experiences among women in other cities. Participants knew the study was about PrEP and may have overstated their interest in PrEP to please the interviewer. Clinic staff were not interviewed; they were provided reports throughout and after the study. Future studies should consider interviewing women and clinic staff to consider both perspectives.

CONCLUSIONS

The present study demonstrated multiple barriers Black women faced regarding PrEP adoption. Multi-level interventions should address barriers at individual levels, such as HIV risk perception and medical mistrust, increasing social support among family and friends, decreasing medical mistrust by increasing provider knowledge and cultural competency, and decreasing transportation barriers are essential. To combat HIV among Black women, we need to address multiple, interacting components.