Participants
Between February 2019 and June 2019, six focus groups were conducted with 37 Black women in Jackson, Mississippi (n = 6–7 per focus group). Women were eligible for the focus group if they: (1) self-identified as a Black or African American cisgender female; (2) self-reported HIV-negative status, (3) had at least one substantial risk factor for HIV infection according to the 2017 CDC PrEP Eligibility Guidelines for heterosexual women (i.e., Sexual partner living with HIV or status unknown, diagnosed bacterial STI, 2+ sex partners, inconsistent or no condom use, sex work), (4) ≥18 years, and (5) had never taken PrEP.
Procedures
Recruitment flyers were posted throughout the community and on social media. Interested participants calling the study line were provided details regarding the study by a research team member. If interested, they completed the eligibility screener and, if eligible, were then scheduled for a focus group. Verbal consent was obtained from the participants prior to attending the focus groups. During the focus groups, participants were asked questions regarding 1) knowledge of, attitudes towards, interest in PrEP and 2) barriers and facilitators to PrEP uptake. Notes were taken during the focus groups by a research team member. The facilitator and notetaker debriefed after the end of each focus group and developed analytical memos. Focus groups were audio-recorded and transcribed verbatim by a HIPAA-compliant transcription company and lasted on average 80 minutes. Participants were remunerated $50. The facilitators and notetakers for all focus groups were trained, Black female qualitative researchers. Focus groups were completed in person in a private room at a local community setting focused on women’s health. The Brown University and Johns Hopkins Bloomberg School of Public Health IRB approved all study procedures.
Data analysis
To analyze the focus group data, the coding team used a general inductive approach. With a general inductive approach, data from the focus groups were coded and analyzed into themes based on the existing research objectives [30]. Initially, two focus group discussions were coded by an interdisciplinary team of three coders (i.e., public health, anthropology, and psychology). After independent parallel coding sessions, codes were discussed at team meetings to develop a codebook. This iterative process continued until a codebook was refined and finalized. After a final codebook was developed, the remaining focus group transcripts were coded by two coders. Throughout this process, the coders met regularly to discuss code application; confirm and disconfirm cases; and engage in reflexive discussion regarding assumptions and experiences. To increase the credibility of the study, community stakeholders were engaged to review data interpretation. The research team debriefed with community stakeholders regarding the discussions after each focus group session. Community stakeholders also consulted on the codebook application and theme development. Dedoose Version 4.5 [31] was used to analyze the data.
Researcher reflexivity
The first author is a Black cisgender woman from the U.S. South who facilitated the focus groups, was one of the notetakers, and led the coding team. A co-author is a Black cisgender woman from Mississippi who facilitated focus groups, was the point of contact with the recruitment site and assisted with data interpretation. The two main coders are also Black cisgender women from the U.S. South. Information regarding the identities of the facilitators and notetakers was shared with participants during the recruitment phase.
Findings
A total of 37 Black cisgender women participated in the focus groups. The average age of the participants was 32 years. More than half of the sample (53.8%) had an annual household income of $30,000 or less. The majority of the women were employed (80.8%), 80.8% identified as heterosexual, and 90% had received healthcare services in the past 12 months.
Across the six focus groups, Black women engaged in informative discussions regarding sociostructural and healthcare system factors shaping their deliberation and consideration of PrEP as an HIV prevention strategy. Findings from this study were informed by intersectionality [24,25,26] to draw attention to the sociostructural power relations that can constrain Black women’s choice to use HIV prevention.
Concerns during PrEP deliberation
Limited PrEP awareness and knowledge
Consistently throughout the focus group discussions, women talked about their limited knowledge and awareness of PrEP. For example, when asked why few Black women were using PrEP, the majority of participants noted limited PrEP awareness:
Participant 1:
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“They just don’t know about the pill.”
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Several Participants in unison,:
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“Yes.” [Focus group 6]
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Some women also explained that they recognized PrEP from media commercials but were still unclear about who was eligible for PrEP:
Participant 1:
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“I don’t know much about it [PrEP].”
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Participant 2:
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“Well, I’ve heard of it [PrEP]. I’ve seen commercials, TV commercials, but like I didn’t know if it was targeted towards certain people. Like how do I know that is a preventative? Or is it free for all? Because I want it.” [Focus group 1]
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Several women also expressed that very few members within their social network such as family and friends, were talking about PrEP or using PrEP. In particular, when asked if they heard of anyone being on PrEP, women stated:
Several Participants in unison:
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“No.” [Focus group 3]
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Some participants commented that they felt comfortable discussing PrEP with their healthcare providers, however, they felt that patient-provider conversations should be centered around gaining more information about PrEP:
Participant 1:
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“I feel okay about talking to him about it so I can get a clear understanding about it too. Like, how long do you have to take it? What’s the percentage of it actually working to prevent you from having HIV. The cost of it.” [Focus group 2]
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Low perceived HIV risk and PrEP candidacy
Women’s perceptions of their risk for HIV acquisition were an important factor during PrEP deliberation. In particular, some women perceived their risk for HIV infection to be low due to their marital status, and thus were disinterested in PrEP and did not perceive themselves to be appropriate candidates for it. For example:
Participant 1:
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“Personally, I think I don’t need it. I mean I don’t consider myself being high risk.”
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Participant 2:
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“My partner doesn’t have it, so I don’t think I need it.”
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Participant 3:
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“Yeah.”
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Participant 4:
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“I’m the same way too.”
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Participant 2:
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“I don’t think I need it.”
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Participant 2:
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“Like we’ve said, they’re married, and I only have one partner. And we get tested once a year. And so, neither one of us is positive.” [Focus group 4]
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Black women also discussed that their HIV risk perception fluctuated with their age and marital status. For example, there was discussion around PrEP being an optimal prevention strategy when women were younger and single:
Participant 1:
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“I mean I probably was at risk more, but didn’t know because being younger, I wasn’t—you know, I really didn’t know. I mean I heard about HIV, but, you know, it was always like that couldn’t happen to me.”
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Participant 2:
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“Yeah.”
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Participant 1:
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“So probably was at risk when I was younger, but never thought I was. As I got older now and I’m older, I mean I don’t think I’m at risk ‘cause, of course, like I said, I’m married, but probably was at risk when I was in my younger teenage days, early 20s.”
[Focus group 4]
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Women also shared that some Black women were not ready to admit their need for PrEP. Specifically, women may minimize their risk for HIV and thus avoid discussing or considering PrEP:
Multiple Participants in unison:
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“Denial.”
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Participant 1:
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“Yeah. No one believe it. Don’t wanna believe it.”
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Participant 2:
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“Yeah.”
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Participant 1:
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“You don’t wanna admit to yourself.”
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Participant 2:
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“Yeah.”
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Participant 1:
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“Yeah. You don’t wanna see yourself taking this medication so you won’t get something because you know that you can get it.”
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Multiple Participants in unison,:
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“Yes.” [Focus group 6]
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Side effects
The impact of the potential side effects on women’s current health conditions was a barrier to PrEP initiation among Black cisgender women. It was clear that Black cisgender women needed more information regarding the side effects of PrEP in order to adequately consider the risks and benefits of using PrEP for HIV prevention. In the focus group discussions, participants noted that the limited education about the potential side effects of PrEP was an important contributor to the low rates of PrEP utilization:
Participant 1:
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“Now I’m kinda taking into consideration what it is I’m putting into my body and seeing what the side effects are.”
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Participant 1:
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“Mm-hmm, mm-hmm.”
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Participant 2:
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“It’s like she said, that’s why a lotta people don’t wanna take the drug.”
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Several Participants in unison,:
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“Yeah.” [Focus group 5]
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Even among a group of participants who were knowledgeable of the potential PrEP side effects, there was some concerns about using PrEP. In particular, this group of participants expressed their concerns about how the potential PrEP side effects may negatively interact with their ongoing health conditions:
Participant 1:
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“I mean, all them side effects. I don’t know, they was just scaring me. I don’t know. It’s a whole list. I don’t know. Yeah, all that. My bones already poppin’ out on me.” [Focus group 3]
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Costs related to PrEP
Focus group participants also discussed how the cost of PrEP and its associated fees (e.g., laboratory costs) may negatively impact women’s access to PrEP. In particular, women stated the cost of PrEP as an important barrier to PrEP initiation: “The cost” (Participant 1) and several particpants agreed in unison from Focus Group 6.
One participant also shared that the cost of PrEP was not a significant barrier to access PrEP, but most participants wanted to know about the different mechanisms to pay the fees related to PrEP initiation and persistence:
Participant 1:
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“Yes.”
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Participant 2:
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“Cost ain’t a reason.”
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Participant 1:
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“Oh, yes, it is. Hold up.”
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[Laughter from Several Participants]
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Participant 1:
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“Hold up. I do wanna know how much this thing costs.”
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Several Participants in unison:
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“Yeah.”
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Participant 2:
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“They [accept] Medicaid?”
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Participant 3:
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“Yeah.”
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Participant 2:
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“See we got [Insurance company]. You gonna pay for half of that, baby. They’re [Insurance company] is a little stingy.” [Focus group 3]
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The challenges associated with PrEP affordability and cost were complicated by the broader sociostructural factors such as racialized gender pay inequity that participants face. This sociostructural context can constrain Black women’s ability to afford PrEP.
Limited PrEP Marketing for Black Women
The erasure of Black women from PrEP marketing creates more difficulties for this priority population to access biomedical HIV prevention. In general, participants discussed the lack of PrEP-related health communication strategies that are inclusive of Black women. In some focus group discussions, Black women stated they did not see themselves and their community in PrEP commercials and advertisements. So when asked about seeing themselves in commericals, participants tended to respond as:
Several Participants in unison:
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“No.” [Focus group 1]
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Altogether, gendered racism fuels the invisibility of Black women from PrEP marketing as a sociostructural barrier with the potential to delay PrEP initiation. In multiple focus groups, participants described their perceptions of the marketing strategies for PrEP advertisements and how this limited marketing could fail to persuade Black women that they were PrEP candidates.
Participant 1:
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“But then like, you know, we talked about the ads that are out for PrEP. And if I’m not mistaken, one of the people is transgender. And so, I think if there was an actual Black [cis-gender] female in advertisements, and it wasn’t just gay men or transgender people who are in the ads. So, then it would make everybody feel like, okay, so everybody’s, um, you know, able to use it. It’s not just for specific people.”
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Participant 2:
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“All genders.” [Focus group 4]
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In addition to noting the lack of diverse PrEP advertisements, participants offered potential solutions and recommendations to improve these advertisements by focusing on the “Everyday Black Woman.”
Participant 1:
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“There’s no commercial with a regular woman who’s dropping off kids, and who randomly meets somebody in a grocery store. I mean that ain’t what you’re seeing on the commercials.”
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Distrust in healthcare system
Black women had PrEP concerns that also stemmed from misinformation of PrEP efficacy and its overall purpose. In particular, there was discussion on whether or not women believed PrEP could prevent HIV:
Participant 1:
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“If it’s really [effective]. Is it really gonna help? I’m sayin’ they have a lot of stuff out here that say that it’s gonna help you or help you, say it is gonna prevent a lot of things, but is it always 100% accurate or not?”
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Participant 2:
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“So, a lot of people probably just don’t wanna do it because they probably don’t think that it’s really the cure for HIV or to prevent HIV.”
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Several Participants in unison:
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“Yeah.” [Focus group 2]
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Equally important, some women discussed the socio-historical underpinnings of medical research and practices with Black Americans. For example, these prior socio-historical practices may cause additional concerns and red flags for Black women considering PrEP:
Participant 1:
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“Just culturally, when you think about studies and medication, the African American community. The thinking for African Americans, they’re like, “Well, they’re probably tryin’ to kill us all. They’re tryin’ to harm us all. Why are y’all takin’ that medication?”
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Several Participants in unison:
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“Yeah.” [Focus group 1]
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Likewise, women described their experiences of racial- and gender-related discrimination with healthcare providers as a significant barrier to preventative healthcare, including PrEP access.
Participant 1:
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“A lot of these health care providers are very critical and judgmental, and they don’t treat all patients fairly, you know.”
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Participant 2:
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“Yeah.”
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Participant 1:
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“They judge automatically on appearance, look, race, and sexuality.”
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Participant 2:
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“Yeah.”
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Participant 1:
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“And often, at times, they don’t get the best health care because of the health care provider.”
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Participant 2:
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“Yeah.”
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Participant 5:
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“That’s true.” [Focus group 1]
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Facilitators during PrEP deliberation
Increased PrEP education
Facilitators during the PrEP deliberation process that are rooted in Afrocentric principles may repel some of the negative impacts of sociostructural barriers of PrEP intiation. For instance, Black women also shared that increased education and resources on PrEP was another strategy to facilitate PrEP initiation. Increasing PrEP education and resources aligns with the Afrocentric concept of collective responsibility as this facilitator can build the community and help solve the issue of low awareness in the community.
Participant 1:
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“Like I said, education, groups. We need to get it out there.” [Focus group 4]
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Women’s testimonials
Similar to increasing PrEP education, participants also described the importance of patient testimonials as a facilitator of PrEP initiation. Advocating for patient testimonials among PrEP-engaged Black women also aligns with the Afrocentric concept of collective responsibility. In particular, Black women sharing their experience of PrEP initiation with women from their community demonstrates that the larger community is taking care of each other and sharing both positive and negative experiences. For example:
Participant 1:
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“It’s good. I think people should try it.”
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Participant 2:
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“Uh, somebody gotta try it before me.”
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Participant 1:
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“You get my number, and I’ll try it before you. How about that?”
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Participant 2:
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“Okay, yeah. Yeah, if she try it, then I’m gonna catch up with her, and she just let me know how it worked for her.”
[Focus group 3]
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Even more specifically, women shared that patient testimonials of PrEP initiation and adherence without any side effects would be a key determinant.
Participant 1:
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“Yeah. If she good. Her body good and all this happened, so then, you know, I’ll just go ahead and pop my pill.”
[Focus group 3]
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Women’s empowerment and advocacy
Some Black women shared being empowered to communicate and advocate for their healthcare needs to their medical providers. Being empowered to communicate for one’s needs aligns with the Afrocentric concept of self-determination which postulates that Black women can name, define, and govern their own interests. Empowering Black women to make informed, autonomous decisions within their healthcare may help increase PrEP initiation:
Participant 1:
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“When I go to the doctor, I don’t care what doctor it is, they work for me. And I come in with a mindset, you work for me. I have a list of whatever I want to talk to them about. You’re not gonna come in here and see me for 30 seconds or less than a minute. You got to stay. So, usually, like if I go to the doctor, if there’s any questions I have, I would write it down and put it in my phone.”
[Focus group 1]
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