African American Women’s Current Knowledge, Perceptions, and Willingness of PrEP Use for HIV Prevention in the South

Abstract

African American women accounted for approximately 60% of new HIV diagnoses among women in the United States, with the greatest burden occurring in the South. Past efforts to prevent HIV focused on behavioral interventions aimed at reducing sexual risk behavior. More recent HIV prevention methods have included oral pre-exposure prophylaxis (PrEP) with antiretroviral drugs. Although PrEP has been designated as an effective HIV prevention method since 2012, awareness and uptake of PrEP remains low among African American women. Our study explored African American women’s knowledge, perceptions, and willingness of PrEP use. Four focus groups were held in April 2019, consisting of 27 women, who identified as African American and resided in South Carolina. Focus group topics focused on participants’ awareness, perceptions, and potential use of PrEP. The majority of women had heard of PrEP; however, over half of the participants were in the HIV or health field. Overall, participants believed that the “lay woman” would be unaware of PrEP. Participants’ perceptions of PrEP included stigma of PrEP use, benefits to non-monogamous couples, and experiences with PrEP clients. The majority of women were willing to use PrEP, but major concerns around short and long-term side effects were expressed. Participants provided recommendations to improve PrEP uptake among African American women that included targeted campaigns and spokespersons.

African American women are interested and supportive of PrEP use for HIV prevention in the South, where HIV rates remain highest. Past PrEP implementation efforts have not been relatable to African American women; therefore, awareness and uptake rates remain low. Future efforts to increase PrEP awareness and uptake among African American women should be relevant, and should provide comprehensive information on potential side effects, purpose of use, and eligibility criteria.

Introduction

Within the United States, there are over 1.1 million people living with HIV and an average of 40,000 new HIV diagnoses annually (Centers for Disease Control and Prevention [CDC], 2019). Women represent 19% of new HIV diagnoses in the United States, with African American women accounting for 60% of new cases (CDC, 2018). HIV/AIDS related illnesses continue to be among the top-leading causes of death among African American women between the ages of 20–54 years (CDC, 2015). The distribution of HIV in the United States varies geographically, with the South accounting for nearly 52% of people living with HIV (CDC, 2018). Of the new HIV diagnoses among women, 54% of diagnoses were among women residing in the Southern United States (CDC, 2017). In the South, the rate of new HIV diagnoses among African American women per 100,000 (26.8) was 11 times the rate of non-Hispanic white women (5.8) and 5 times the rate of Hispanic women (2.4) (CDC, 2017).

Unknown HIV status, sexual risk behaviors (i.e., unprotected sex and multiple sexual partners), previous sexually transmitted infections (STIs), sexual assault, and alcohol and other drug use are influential factors that increase HIV risk among African American women (Aral et al., 2008). In addition, the high prevalence of HIV within their sexual networks increases their risk of HIV, regardless of their relationship status (Aral et al., 2008). Sexual partner sharing and difficulty with condom negotiation with their primary partner creates additional HIV risk for African American women. Therefore, actual risk can vary across reported risk behaviors and perceived risk, and thus HIV prevention efforts should be measured and considered across all risk groups (no-, low-, medium-, and high-risk) among African American women.

Current efforts to reduce HIV risk and transmission among African American women include tailored behavioral interventions that aim to increase safer sexual behaviors and practices (i.e., routine HIV and other STI testing, condom use, and reduced number of sexual partners), reduce HIV-related stigma, and improve treatment services and retention rates among HIV-positive individuals (CDC, 2017). Due to reported barriers to HIV testing and condom access, and continued high rates of HIV among African American women, further HIV prevention efforts are needed.

Pre-exposure prophylaxis (PrEP) has been shown to be highly effective (92%–99%) at preventing HIV when taken consistently and as prescribed (CDC, 2019). PrEP has been recommended for men who have sex with men (MSM), transgender individuals, injection drug users (IDU), and heterosexual men and women who report one or more of the following risk factors: inconsistent condom use, having multiple sexual partners, having an HIV-positive sex partner, having a recent STI, having an HIV-positive IDU partner, sharing of injection equipment, involvement in commercial sex work, and use of post-exposure prophylaxis (PEP) for HIV prevention in the past 12 months (CDC, 2019).

Past research studies around PrEP have focused on MSM, injection drugs users, and high-risk international and heterosexual men and women (Brooks et al., 2011; Eisingerich et al., 2012; Flash et al., 2014; Galea et al., 2011; Guest et al., 2010; Heffron et al., 2012; Khawcharoenporn et al., 2012; Krakower et al., 2012; Smith et al., 2012; Towe et al., 2020; Walters et al., 2020). One study found PrEP awareness to be lowest among heterosexual persons (7%), compared to MSM (85%) and injection drug users (26%) (Jones et al., 2021). Understanding knowledge, attitudes, perceptions, and interest in PrEP use among populations who continue to experience high rates of HIV is essential, however there are limited studies that examine African American women’s knowledge, perceptions, and willingness of PrEP use in the United States. A recent qualitative study consisting of Black women found the majority of women to be interested in PrEP, despite having never heard of PrEP, and reported numerous structural berries (e.g., poor access to transportation, childcare and social services) and systematic barriers (e.g., intimate partner violence, substance use, and community violence) that prevented PrEP adoption (Nydegger et al., 2021; Nydegger et al., 2020). However, most PrEP studies involving African American women in the United States have taken place in predominantly urban cities, have included mixed-race and mixed-gender participants, included women who experienced substance use and violence, and were single method studies (Auerbach et al., 2012; Auerbach et al., 2015; Bond & Gunn, 2016; Flash et al., 2014; Khawcharoenporn et al., 2012; Kwakwa et al., 2016; Nydegger et al., 2021; Nydegger et al., 2020; Smith et al., 2012; Whiteside et al., 2011; Wingood et al., 2013). Given the consistently high rates of HIV experienced in the Southern United States, specifically among African American women, continued research focusing on HIV prevention in the South is needed. Our study aimed to fill these gaps, using qualitative research, by exploring the awareness, knowledge, perceptions, and willingness of PrEP use among African American women in the South.

Methods

The data for our study was derived from a mixed-methods study focusing on sexual behaviors and PrEP awareness, perceptions, and potential use among African American women. Focus group participants were recruited from the quantitative survey sample (N=413). A total of 27 women participated in the focus groups. The study will only report findings from the qualitative data collected.

Procedures

Surveys were collected between May 2018 and March 2019. Multiple channels were used to invite participants to take the online survey. This included emails and social media advertisements, as well as face-to-face recruitment. Emails and social media posts provided the link to the survey and eligibility requirements. Face-to-face recruitment for the online survey involved handing out cards with the survey link and information about the survey and eligibility criteria. In addition to the online survey, participants were also given the chance to take the survey in-person at a local non-profit organization and various community events, which included The Black Women’s Expo, community health fairs, and targeted testing events in Columbia, South Carolina.

Eligibility criteria for survey participation included women who (1) self-identify as African American or Black, (2) are18 years of age or older, (3) self-report as HIV-negative, and (4) reside in the Southeastern United States (South Carolina, North Carolina, Georgia, Alabama, or Florida). A total of 413 participants completed a quantitative survey that assessed their demographic information, sexual risk behaviors, perceived HIV risk, dynamics of their sexual relationships, and basic PrEP knowledge and perceptions.

Participants who completed the survey were entered into a drawing for the chance to win one of two $50 VISA gift cards. At the completion of the survey, participants were asked if they would be interested in participating in a focus group to discuss the survey topics further, sometime at a later date. If interested, participants were asked to provide their email and/or phone number so that they could be contacted at a later date to invite them to a focus group. Only women who completed the survey were eligible for focus group participation.

Participants who were interested in the focus group were contacted between February 2019 and March 2019 to invite them to the upcoming focus groups. A total of four focus groups were conducted in April 2019. A total of 27 women participated in the focus groups. All participants received a $25 VISA gift card upon completion of the focus group session.

A topical guide was developed to guide focus group discussions and to ensure all focus groups covered the same overall topics. The moderator and note taker used the topical guide to lead the focus group and to ensure the focus group stayed within the intended time frame. Each focus group lasted approximately 90 minutes. At the beginning of each focus group, participants signed an informed consent form, where they were provided information about potential risks or harms of participating in this study, and completed a demographic questionnaire. Participants were asked questions about 1) knowledge, awareness and understanding of PrEP; 2) attitudes about PrEP usage for themselves and others; 3) perceptions of PrEP’s impact on future sexual behaviors (i.e., condom use); 4) stigma related to PrEP use; 5) willingness to use PrEP; 6) likelihood of recommending PrEP to their sexual partners; 7) likelihood of PrEP uptake and adherence, given the behavioral requirements and financial obligations; 8) current relationship with their provider, focusing on patient-provider discussions around sexual history and behaviors, and provider recommendations of PrEP use; 9) past and recent sexual activity behaviors; and 10) experiences and composition of sexual relationships. All procedures for this study were approved by the Institutional Review Board at the University of South Carolina.

Data Analysis

Focus groups were recorded, transcribed, and analyzed using NVivo 12 Pro. A codebook was developed to guide data analysis and to further analyze identified themes. The transcripts were reviewed, coded, and discussed by three researchers. All four transcripts were double coded. Researchers met post coding to discuss and compare similarities and differences between themes from each focus group. Analysis indicated consistency of themes across all four focus groups.

Results

A total of 27 women participated in the focus groups. All participants resided in South Carolina. The average age was 39.15 years among participants, with participants’ age ranging from 20–67 years. Among the 27 participants, 59.3% reported they were interested in PrEP prior to the focus group through the sexual behavior survey. Table 1 includes the demographic data for the participants.

Table 1.

Participants’ Demographic Characteristics, PrEP Focus Group Study

	n	%
Education
9th–12th grade	2	7.4
Some college or university	9	33.3
Bachelor’s degree	5	18.5
Higher education	11	40.7
Employment
Employed	26	96.3
Disabled	1	3.7
Income
Less than $5,000	4	14.8
$5,000–$20,000	4	14.8
$21,000–$40,000	9	33.3
$41,000–$60,000	7	25.9
$61,000	3	11.1
Health Insurance
Yes	22	81.5
No	5	18.5
Relationship Status
Single	16	59.3
Married	4	14.8
Partner	2	7.4
Divorced	4	14.8
Widowed	1	3.7
Sexual Orientation
Heterosexual	25	92.6
Bisexual	2	7.4
Profession
HIV field	10	37.0
Health field	6	22.2
Other	8	29.6
Student	3	11.1

Focus group discussions were categorized under the following themes: PrEP knowledge and awareness, perceptions of PrEP, willingness to use PrEP, concerns about PrEP, and recommendation to increase PrEP uptake among African American women. Major findings from each emergent theme are presented below.

PrEP Knowledge and Awareness

The majority of participants had heard of PrEP prior to the focus group. Participants reported hearing of PrEP through various channels such as commercials on television, television shows, magazines, and at their place of employment. The majority of participants reported working in the health care field and contributed their awareness of PrEP to their occupation. One woman stated, “If I wasn’t working here, I know I probably would never have heard of PrEP. When I worked at [health insurance company], I knew HIV, but I didn’t know HIV.” Several women said they had heard of PrEP from relevant television shows featuring a predominantly African American cast. One participant had heard of PrEP through a family member who was a MSM and had started taking PrEP.

PrEP Not Targeting African American Women

All groups expressed that although they had heard of PrEP, the advertisements and promotions for PrEP targeted mainly MSMs, and were therefore not relatable to African American women. Several women believed this was a reason why many African American women are still unaware of PrEP. One participant commented, “PrEP should be marketed to anyone who is having sex.” Some participants mentioned that more recent advertisements for PrEP have started to include women and African American women, but they only make a small appearance, so the advertisements still do not feel targeted towards African American women. One participant said, “There has been more focus on getting PrEP and PrEP information into the MSM community. The same has not been on women and African American women who are at high risk for HIV.”

Providers Not Promoting PrEP

No participants had heard of PrEP through their provider. Some participants felt that their provider was only concerned about birth control and preventing pregnancy. Several women mentioned that they would have been interested in PrEP if their provider would have recommended it. One participant shared, “If I would have known, and my provider would have shared this information, I probably would have known about PrEP, and probably would have at least used it before to know what it’s like. But guess that’s why I’m here.” Some women also felt that providers target their PrEP recommendations to MSM and fail to consider women and others who may be eligible for PrEP. One woman hesitantly said, “And it seems like providers mainly, and this is, I mean it’s bad, but mainly they’re told to talk about PrEP with MSM. They don’t really talk about promoting it with other like heterosexuals.”

Poor Marketing

All participants agreed that the African American community had very little awareness or knowledge of PrEP. One participant argued that PrEP hasn’t infiltrated the “urban market” strong enough yet to know that there is a product than can help those who are HIV negative. Another participant commented, “I think it should be marketed more to African Americans because we are the highest risk of people becoming newly infected with HIV. So I think it’s a great thing, but we are unaware of it. A lot of people don’t know a lot about it.”

Overall, general knowledge of PrEP was high among participants — however, the majority of participants worked in the HIV or health field. For the participants who did not work in the field and still had heard of PrEP, they still did not know about the side effects, the timeframe for the drug to go into effect, and the guidelines and criteria for taking PrEP (e.g., routine HIV screenings, routine STI screenings, and routine provider visits to assess kidney function). Several participants questioned how long the drug had to be taken to be effective and to continue preventing HIV. The majority of participants working in the field felt that most African American women do not know about PrEP, but are aware of the HIV risk and epidemic in the African American community.

Outside of women working in this field, and not all of them working in this field because every agency is not as thorough as ours [HIV/AIDS service organization], I don’t know anybody I could walk up to now, if I’m just going to go do outreach, and I asked any woman, any black woman, how many days it takes before PrEP is it effective in your body? Nobody is gonna tell me twenty-one days. That’s how inadequate the education, the rollout, and exposure of PrEP is in our community.

Perceptions of PrEP

Stigma

The majority of participants believed there was a stigma associated with PrEP. Many participants felt that taking PrEP was associated with “unfaithfulness” and “cheating.” Some participants believed that research and clinical trials do not accurately represent what would happen in real life situations with couples who try to take PrEP; emphasizing that the majority of couples would have an issue with their partner taking PrEP.

Participant: What comes out of research and clinical trials is not what happens in real life. The first thing that African American says is ‘you must not only be fucking me.’

Participant: That’s right. Yeah. It’s that stigma.

Several participants mentioned that they would doubt or question their partner if they started to take PrEP; however, if their partner was taking PrEP before they started dating then they would be more accepting of them taking PrEP. One woman commented:

I would be a little bit, um, I think I would be a little bit offended because I know myself and it probably would make me start to wonder ‘okay, so are you doing something that I need to know about?’ It would probably bring that into my mind a little bit, but if it were a scenario where we just met and the person was on it, I think it would be fine.

Several participants believed that people who take PrEP are more promiscuous and tend to have more sexual partners. One participant responded, “Yeah, they love to have sex with everybody.”

Sex Practices on PrEP

The majority of participants believed that their sex practices on PrEP would either remain the same or become riskier than their current sex practices; reporting that they most likely would not use a condom on PrEP. One participant compared PrEP to the birth control pill, saying that it would give them more of a reason not to use a condom and that the combination of birth control and PrEP together may result in people feeling “invincible.” A minority of participants said they would “try” to use a condom still if they were on PrEP, particularly if they doubted the monogamy of their relationship. One woman stated:

I would say, if I could like absolutely, 100% trust somebody, that I probably, to be honest, probably would engage in just not using a condom. Because I’m trusting that we’re in a monogamous relationship and we’re not going to step out on each other. But I guess just being realistic, at least from my situation… I’d probably stay strapped up [use a condom] and use PrEP too.

Several participants questioned how PrEP was better or any different from using a condom, given that they still should use a condom consistently when on PrEP.

Participant: And so one of my issues, my personal issue with PrEP, is that they say use PrEP in conjunction with the condom. So what is the PrEP doing that the condom is not doing?

Participant: STDs.

Participant: No, the condom is going to prevent that [STDs] and HIV as well. That’s what I’m saying. The condom works. The condom works.

Some participants felt that PrEP could help promote regular testing among couples who decided to take PrEP either together or singularly. One participant, that routinely received HIV screenings with her partner, felt that it would make the conversation around getting tested every three months easier so that she wouldn’t have to ask her partner every three months. She stated, “If I said ‘hey there’s a pill out, let’s start taking it because we get tested every few months anyways’...I think that it can help me get him to get tested without the every 3-month discussion that we have to have about it.”

Beneficial for Women in Non-Monogamous Relationships

All participants felt PrEP would be an effective HIV prevention strategy for African American women who are in relationships with a partner that has other sexual partners. Several participants mentioned that PrEP is for any woman who feels like they may be at risk, with one woman commenting, “Even if you’re not high risk, you still want her to take it [PrEP] because you may be monogamous, but your partner may not be; because you got a lot of men that like to do that…undercover.” The majority of participants expressed that they believe most relationships are no longer monogamous and PrEP could be used to “protect” women who may have “concerns” about their partner, or who may be aware of their partner’s additional sexual partners —especially when they decide to stay with this partner. One woman said:

Some women know they partners cheating, but they still want that person. So they go along with it when they should be using PrEP or using condoms, but they want to keep that person and they know that they’re not sleeping with just them. Maybe they’re a good provider, so they gonna over look.”

Several participants acknowledged the physical benefit PrEP could provide to women who are experiencing a partner who is sexually active with others, but participants also mentioned the potential emotional and psychological impact PrEP may have on these women. Participants discussed how PrEP could provide a positive sense of empowerment and protection to women. One woman shared, “I would see it like, as me like, taking my power back. Like you going to sleep with such-and-such, well I’m going to take this pill, and I’m not going to tell you I’m taking it, but I know that I’m protecting myself.” Some participants mentioned the potential negative effects PrEP may have by serving as a daily reminder that their partner is “unfaithful” and were concerned about the toll it may take on them mentally; however, participants agreed that the benefits outweighed the potential negative effect. One participant explained:

I think physically it’s great for her for the obvious reason. I just think that there’s an emotional or psychological component that comes with that. Like, every day that she puts that pill in her mouth, she’s kind of being reminded of why she’s doing it. Because I think, for any of us that have had that suspicion or concern, it can kind of nag at you. And just to put that pill in your mouth every day because of that concern, I think that would be something different. Especially if it wasn’t something that I communicated to my partner, like ‘oh I’m going to start taking this just because I want to protect myself;’ but if I’m doing it and not having that conversation because I know or I think you’re doing something…it would eat me up.

All participants agreed that PrEP gives women who may be in an abusive relationship or forced to have sex with their partner who is “stepping out” a chance to be “proactive” and to protect themselves. One woman said, “You gotta protect yourself. If you’re not worried about the other person, at least be worried about yourself.” These participants also felt that PrEP was a good option for women who are at high risk of HIV or in a relationship with someone who is HIV positive. One participant commented, “If I was dating somebody or having sex with somebody that I know is HIV positive, then I’d want to protect myself of course with condoms; but if PrEP is going to help, I’d remember to take that pill everyday then.”

Disclosure of PrEP Use

The majority of participants felt that PrEP would protect their sexual health and would allow them to take their health into their “own hands,” given the epidemic in the area. The majority of participants reported that they wouldn’t let their partner know that they are taking PrEP because it might make their partner think that they are trying to cheat or might make their partner think they can go engage in riskier behaviors. Participants felt that the decision to take PrEP, was a personal choice and strategy to take care of themselves, and also could be taken discreetly without their husband or partner knowing. Two of the participants commented:

Participant: And that’s like personal health. That’s not…well it is sexual related, but it’s not like pregnancy where if you know you’re expecting to have a child and then you withdrew from birth control, or you added yourself on birth control, and you didn’t talk to your husband about it… maybe that could be an issue. But this is, I think it’s more of like, just personal for you. It’s strictly just taking care of yourself.

Participant: Yeah, a choice you’re making.

Participant: It’s like a vitamin for HIV prevention.

Participant: Mmhmm, that’s right. I agree with that. Nine out of ten, if he already in another relationship, he’s not paying that much attention to what you taking anyway. Like you said, it can be a vitamin. That’s right.

However, several participants reported that they would feel comfortable bringing up PrEP to their partners, with several participants saying that they were comfortable telling their partner that they need to get tested before they have sex, so bringing up PrEP would not be an issue.

Experiences with PrEP Clients

Several participants actively counsel and test individuals who are currently taking PrEP. Their experiences with PrEP clients have been mixed; however, most mentioned negative experiences and perceptions of the PrEP clients. Several participants believed that clients on PrEP are not provided with a thorough education of PrEP prior to being prescribed the medication. These participants also reported that the majority of PrEP clients do not follow-up every three months for their required testing. Moreover, participants reported that many PrEP clients continue to come back in testing positive for other STIs. Participants believed that their PrEP clients were getting a false since of protection against more than HIV, or they were no longer worried about getting other STIs because they were curable, unlike HIV. One participant shared “Some people that come in, and they on PrEP, we tell them make sure they use the condoms. And one guy told me ‘Well, I’m young.’ I said, ‘But you leaving here with syphilis.’ You know, he say ‘Well I don’t have HIV. I’m taking my PrEP,’ I’m like, ‘but you still got syphilis.’” Several participants commented:

Participant: But I think PrEP messes up people really bad, because I have a lot of clients that take PrEP, but they still coming in having gonorrhea, chlamydia, and syphilis.

Participant: Because it’s just stopping that [other STDs].

Participant: It’s only preventing HIV. It’s not preventing the other STDs.

Participant: So you still gotta use condoms. I mean, you gotta be smart.

Participant: But they don’t worry about that because you can get treated for chlamydia. You can get treated for gonorrhea. You can get treated for syphilis. So they don’t worry about it. They like, ‘I’m good.’

Participant: They’re just worried about HIV.

Willingness to Use PrEP

Willing to Use PrEP

Participant’s willingness to use PrEP had mixed responses. Roughly 59% of the participants said they would be interested in using PrEP. Several of these participants said that they would consider using PrEP if it were recommended to them by a provider. One woman said, “I think if I was in a high risk situation, you know, if my doctor would talk to me about PrEP, maybe I would consider it more; but I do worry about the long term effects of everything”. Those who were interested in taking PrEP thought it was a good method to prevent HIV, as long as they used a condom and were not “promiscuous.” Most women said they would start PrEP immediately if it was available and covered by insurance. One participant said, “I’m gonna call my doctor and tell him give me this shit [PrEP]. Gimme my PrEP.”

Willing participants also said that they would want to know more about the research that has been conducted on PrEP before they start taking it. Participants were interested in knowing who the research participants included, the number of participants that contracted HIV while on PrEP, and the percentage of participants that were taking the medication correctly. One participant commented, “I feel like I learned something. I think that it’s very useful because I hadn’t heard about it before, um, and I do want to tell more people about it. And I’m hesitant, but I’m willing and I’m open, you know? So I will be looking more into it when I get home.”

Among the participants willing to use PrEP, there were still concerns around the potential long-term side effects and about how long they would have to take PrEP. One woman commented:

My worry would just be the consistent part. Like when can I stop? Like I shouldn’t have to take this for the rest of my life; I’m even considering like being married, and still having to protect myself. I still have to take PrEP? I don’t want to have to do that. I’d still have to take PrEP, so I’m literally going to have to take PrEP until I die. That’s just my opinion.

Not Willing to Use PrEP

Of the participants that were not willing to use PrEP, several mentioned that they would not take PrEP because they felt it was associated with distrust in the relationship. Some participants were still hesitant to take PrEP because of the “newness” of the drug, the potential side effects, and risk to their kidneys. All of the non-interested participants said that they would still recommend PrEP to women who may be high-risk or eligible, but believed that women in relationships may not be receptive to PrEP.

Participants that considered themselves not very sexually active said they would not be interested in PrEP at the moment, but they would promote PrEP to other women. However, these women stated that if they became more sexually active in the future then they would be very interested in starting PrEP.

Concerns about PrEP

Several concerns about PrEP were discussed among participants. Potential health issues and side effects caused by PrEP were two main concerns among participants. Many participants were concerned about the harshness of the medicine and the potential long-term effects. One participant commented, “We know how harsh HIV medications are. Why take this medication, that has to go through my kidneys, and may potentially affect me 15 to 20 years down the road, versus using the damn condom?” Some participants were particularly concerned with the potential effects PrEP could have on their reproductive system; especially, if they wanted to have children in the future.

The mistrust of the health care system that still exists in the African American community was also a concern. Some participants discussed how one “bad” incident that someone may experience on PrEP in the Black community may cause complete distrust of the medicine. One woman commented, “It only has to happen to one Black person and all Black people will start saying that PrEP caused kidney disease.” Participants also stated that it is difficult for the African American community to trust new innovations due to the substandard health care they received for over 100 years. One participant mentioned how most African Americans do not participate, “as a rule,” in clinical trials and so new medications were “not made to work on us from the beginning.” Another woman agreed and responded saying, “So new innovations are always harder too. We are not, in public health terms, ‘early adapters’. We’re more laggards. It takes us a little longer.”

Additional concerns about PrEP included potential effects on women’s sex drive, being able to meet the criteria to stay on PrEP, worries that the medication may show up on a drug test for work, and affordability and access among African American women. One woman said, “You can’t pay for the medicine or the doctor. So if you want to start and pick a target population, start where people have jobs, with insurance, that can afford PrEP, without a barrier — or just make PrEP affordable.”

Recommendations to Increase PrEP Uptake among African American Women

Participants were asked for their suggestions and recommendations to improve PrEP awareness and use among African American women in the South. Several key strategies were proposed and discussed, which included targeted campaigns, use of a relatable PrEP spokesperson, increasing support from the African American community, and targeting younger generations. Regardless of what tactic was used to promote and advertise PrEP moving forward, all participants agreed that they need to come together within the African American community to show a concerted effort and support for PrEP.

Targeted Campaigns and PrEP Spokesperson(s)

All participants mentioned and agreed that campaigns moving forward need to target African American women, and not only MSM and transsexuals. Future commercials and marketing tactics should have advertisements that only focus on African American women to ensure women feel relatable to the situation and to increase their interest in PrEP. Participants believed that any campaign moving forward should recruit or hire on a “PrEP spokesperson” that is both relatable and inspirational to African American women. Several women recommended a celebrity that is open about taking PrEP and promotes taking PrEP, to be used as a spokesperson. Through these updated and targeted campaign strategies, participants believed that PrEP could become “normalized” in the African American community.

I also think that part of the rollout, and the uptake of PrEP, is going to have to be to come up with some type of massive campaign that normalizes it. Like they did with birth control; the birth control pill eventually became normal. It became that you didn’t hide that round thing in everybody’s pocketbook. They be having lunch and pop it out. And you know you would no longer hide your pills and don’t want nobody to know. And until we get there with PrEP, then we’re still gonna have an uphill roll. We’re not there yet. You know, in the African American community, with African American women across age groups, we have not gotten there yet. And so that’s part of the rollout, the normalization of PrEP, a spokesperson, a face — recognizable, famous, what have you.

Frequented and Targeted Areas

Participants discussed target areas in the South where advertisements and campaigns for PrEP need to targeted such as clubs, churches, and doctor’s offices in the African American community. One participant commented, “I mean in the South, what do people do most of the time? They either go to the club or they go to church. And so, if it’s being discussed in either of those places, they may be more receptive to it.” Another participant mentioned that future efforts may have difficulty getting into churches to promote PrEP given the sensitivity of the topic, and would have to be strategic about who the information comes from in the church. This participant compared her story of trying to teach safe sex practices in the church by sharing:

It depends on the connection within the church, I think. Because for my church, if you, for example went to my pastor’s wife and she received it well, then everyone would really get on board with it. Um, if you asked me, like they were upset that I was promoting safe sex to the youth, so like it just depends on who it’s coming from. When it was me it was wrong, but when she said it, it was okay. So I think for you to do that, you would have to be very strategic about who you went to and how you presented it.

Promote PrEP Earlier

The majority of participants felt that future tactics needed to start promoting PrEP sooner among younger generations and sooner in the relationship cycle. Participants highly recommended using social media platforms to promote PrEP to the youth using sponsored advertisements. One participant commented, “They’re always on social media, for everything.” Participants also recommended that PrEP be promoted and targeted at high schools, universities and colleges, in order to reach the younger generations. Most participants mentioned how sexual activity comes sooner than it used to in relationships; now people are having sex before they “really get to know one another or before courting one another.” One participant shared:

You had to sit in that living room, you had to talk to them, and now we are using the sex and intimacy to decide whether or not you go court and get to know each other. The sex comes first to decide if you’re going to court. So the risk now comes first. So now PrEP has to come first before as a health issue and not as a sexual issue. Because now, getting to know somebody is judged on whether you go out with him again. So because of the shift, we will have to shift our messages about protection, prevention, and PrEP, and things of that nature. We’re gonna have to start sooner.

Discussion

The participants expressed and emphasized their concerns about the “newness” of PrEP and possible side effects. Although they were informed of the drug’s 2012 release date and supportive research demonstrating no-low side effects, women were questionable of the short timeframe and accuracy of the research findings. Evidence of PrEP safeness and effectiveness were not relatable due to the lack of research targeting specifically African American women and PrEP. Continued research involving African American women and PrEP should focus on the clinical outcomes of PrEP for this population to improve acceptance and uptake of PrEP among African American women.

Findings related to PrEP awareness and knowledge were similar to previous studies, (Bradley et al., 2019) demonstrating there is still a lack of information and promotion targeting potential PrEP user groups, specifically African American women. Although overall knowledge and awareness was high among participants, the majority of African American women are still unaware of PrEP as a method of HIV prevention. Additionally, PrEP promotion and advertisement efforts have focused mainly on targeting MSM, which has made PrEP advertisements not relatable to African American women, resulting in no-to-low interest in PrEP use.

Participants were supportive of PrEP when sexual partner sharing and lack of monogamy were of concern. Similar to other studies, women believed PrEP to provide a sense of protection and empowerment (Bond & Gunn, 2016; Smith et al., 2012). Our participants highlighted this advantage by conveying that PrEP provided an opportunity to “take their sexual health into their own hands” and to “take back control.” Other than the female condom, PrEP is the only female-controlled HIV prevention method. For women who may experience concurrent sexual partnerships or abusive situations where they are forced to have sex without consent, PrEP may serve as a practical and discrete option for HIV prevention.

There were no significant differences among focus group participants in regards to awareness, concerns, and recommendations of PrEP. There were several differences around willingness to use PrEP and perceptions of PrEP among participants. Eleven participants were not willing to start using PrEP for HIV prevention; however, the remaining 16 participants were willing to use PrEP, with many stating that they were eager to start taking PrEP immediately if it was available and covered by insurance. Participants who described themselves as low-risk individuals and reported low-risk behavior, had a high willingness to use PrEP. The high willingness to use PrEP could be reflective of their need to engage in continued safer sexual practices (e.g., consistent condom use) or engaging in very little sexual activity. However, not reflective of their current approach to sexual activity, these participants, along with the other participants reported they would be less likely to use a condom if on PrEP — demonstrating that even women who practice safe and responsible sex can feel a sense of invincibility on PrEP. It is imperative that potential PrEP users receive a proper and thorough education of PrEP and how it works most effectively with condom use prior to uptake.

Our study was unique in that several participants provided testimonies about experiences they have had with their PrEP clients. The majority of these participants only provided negative experiences involving their PrEP clients. For example, many of their PrEP clients do not follow the drug criteria for regular testing and follow-up visits, and many test positive for STIs and become “repeat offenders.” It was believed that PrEP created a false since of protection against more than HIV and concern about other STIs was lessened given their curable nature. Continuing to witness PrEP clients incorrectly using and abusing the medication could negatively impact both health care professionals’ and African American women’s perception of and promotion of PrEP. Providers must work to improve knowledge of PrEP, requirements for PrEP, and enforcement of PrEP requirements for those who are interested and begin taking PrEP. However, research has found that providers do not envision themselves to be primarily responsible for prescribing PrEP (Krakower et al., 2014). Future efforts to increase PrEP uptake may focus on PrEP promotion, counseling, and prescription recommendations mainly through counselors and other health care workers.

Recommendations to improve PrEP awareness and use among African American women in the South were provided. Similar to previous research, participants identified venues such as doctor’s offices, billboards, social media, schools and peers (Auerbach et al., 2015). Other areas recommended included places that participants considered to be most frequented and prominent in the African American community in the South, which included churches and clubs. Participants felt strongly that future PrEP efforts should involve a targeted campaign for African American women and should include a PrEP spokesperson who is both relatable and a user of PrEP. Comparably, a recent review recommended conducting gain-based stigma-reduction campaigns as an approach to address complex challenges to PrEP implementation in the South (Sullivan et al., 2019). Future PrEP efforts should focus on reaching the youth population and should take into account that sexual activity is occurring sooner in the relationship cycle compared to older generations. These efforts will aid in the normalization of PrEP awareness and use among African American women, and within the African American community.

To our knowledge, our study was one of the first to conduct qualitative focus groups to explore knowledge, perceptions, and willingness of PrEP use among African American women in the rural South. However, there were several limitations to our study. First, the sample size of 27 focus group participants was small and took place in a single community in Columbia, South Carolina. Second, the sample may have been biased due to the majority of participants being health care professionals or directly working in the field of HIV. Conversely, this also allowed us to gather unique insight related to health care workers’ perceptions, support, and potential willingness of PrEP use, that were not specifically medical providers’ opinions as examined in previous research.

Conclusion

Our study provides findings that are encouraging of potential PrEP interest and use for HIV prevention among African American women in the South. Future PrEP research focused on African American women should examine 1) determinants that influence actual PrEP use and adherence, 2) sexual risk behaviors and STI incidence while using PrEP, 3) outcomes of PrEP use disclosure, 4) stigma and/or acceptability of PrEP use, and 5) short-term and long-term side effects of PrEP use. The findings from our study provide targeted avenues for future research and PrEP implementation efforts for African American women in the South. Data from our study can inform the development of targeted campaigns aimed to increase PrEP awareness, knowledge, and uptake among African American women residing in areas experiencing the greatest burden of HIV.