A Qualitative Study Exploring How the Perspectives and Experiences of Cisgender Black Women Inform Their Readiness to Consider Pre-Exposure Prophylaxis for HIV Prevention
Abstract
1. Introduction
2. Materials and Methods
2.1. Study Design
2.2. Community Advisory Board
- Meeting 1: Introductory session encompassing study overview, CAB expectations, and a question-and-answer period;
- Meeting 2: CAB provided feedback regarding the focus group guide and recruitment protocol, ensuring the relevance and appropriateness of inquiry, along with facilitating outreach for recruitment through their established community networks;
- Meeting 3: CAB members engaged in discussions about the initial qualitative findings;
- Meeting 4: CAB members provided additional feedback on preliminary qualitative findings, including emerging themes and their implications;
- Meeting 5: CAB presented the final study results. Meeting focused on discussion of the final results and their meaning and outlining subsequent steps.
2.3. Recruitment and Enrollment Procedures
2.4. Theoretical Framework
2.5. Focus Group Guide
2.6. Enrolled Study Sample
2.7. Data Analysis
3. Results
3.1. Facilitators of PrEP Readiness
3.1.1. High Perceived Vulnerability
People do things and you don’t expect them to do those things. So, I just like to be as careful as I can be on my end.(Focus Group 2, Austin, TX, USA)
I wouldn’t put it past my partners to be at risk of having HIV because I believe if you’re sexually active, you’re always at a risk of contracting HIV.(Focus Group 3, Austin, TX, USA)
So, creating that relationship and creating that comfort level does not eliminate the fact that there is always a possibility of others making different choices or like the prior participant said, unknowingly exposing you to something based on their sexual history, things of that nature.(Focus Group 3, Austin, TX, USA)
I do believe I have a reason to be concerned [about contracting HIV]. Well, for one, the statistics that you stated and me being a Black woman, I have a higher chance it seems like, of contracting it. So, I am concerned about it. I’m also concerned about it because I’m sexually active. I only have one partner, but I think that I should… Sorry, I’m trying to think. I think that I should be proactive in my healthcare.(Focus Group 3, Houston, TX, USA)
I think we definitely have a reason to be concerned. I was really shocked at hearing those statistics, going to different conferences over the years and going to different health conferences at church and what have you when they give you information about HIV and other STDs [sexually transmitted diseases]. Hearing it now again, it’s very shocking. So, I think that’s definitely a concern as far as contracting the disease, whether we take heed to it or not. Definitely.(Focus Group 2, Houston, TX, USA)
I was going to say I agree. I feel like if you’re sexually active in any way, you should have some concerns in contracting it. And I think we as Black women should be a little more proactive when it comes to the preventative medicine, so I think the statistics that you just said were shocking, as well, so I agree.(Focus Group 2, Houston, TX, USA)
But I do my part in getting tested regularly…(Focus Group 3, Austin, TX, USA)
I do make sure that I get tested as regularly as possible.(Focus Group 3, Austin, TX, USA)
So, I literally just did my annual last week and my doctor was like, ‘Oh, well, STI screening comes with this if you want it.’ So, my doctor did just let me know that I could get it done. And then I also am proactive. So, I will schedule my own appointments and now that I actually know the timeframe of when to go, I go in and I schedule it accordingly.(Focus Group 2, Austin, TX, USA)
3.1.2. Preferences to Ensure Continuity of PrEP Care
Yeah, for sure. Because like I said, I get the birth control shot every three months, so it’s just one month behind, and it’d be easier. Even going to the OB-GYN, you could always--Let’s say you need a checkup, you can get your shot right there and then. I feel like that method is easier and you won’t have to worry about if I missed it or if I forget it.(Focus Group 1, Houston, TX, USA)
3.1.3. Preferred Modality
I get the birth control shot every three months, so it’s just one month behind, and it’d be easier. Even going to the OB-GYN, you could always--Let’s say you need a checkup, you can get your shot right there and then. I feel like that method is easier and you won’t have to worry about if I missed it or if I forget it.(Interview 1, Houston, TX, USA)
The injection for me as well. I switched from the birth control pill to the shot for the convenience of it. So, the injection once, twice a month. I mean, no, once every two months. That would just be way more convenient than trying to take a pill everyday.(Focus Group 2, Houston, TX, USA)
I say the injection because it’s kind of hard keeping up with taking pills, the same way as with birth control.(Focus Group 5, Houston, TX, USA)
I would say injection because, I know for me, even with my birth control pills, sometimes I forget to take them. So, I’d rather just have a shot every two months versus having to remember to take a pill every day.(Focus Group 2, Houston, TX, USA)
The women in my family, if they are already taking a medication, it’d probably be easier for them to remember to take that or if they don’t like needles, so they probably want to do the pill.(Focus Group 1, Austin, TX, USA)
I would say the pill just because I don’t like shots. I’m not a shot type of person and my schedule is crazy and hectic, so I don’t want to go to the doctor. So, the pill would be best.(Focus Group 2, Houston, TX, USA)
3.1.4. PrEP as Self-Care
I guess taking PrEP and doing all these other things would be a form of self-love to your person, to yourself, or whatnot. And even for others too, because you’re taking these steps to make sure that you’re good and other people, the people that you’re dealing with around you are good.(Focus Group 3, Austin, TX, USA)
I would say as far as making decisions to take PrEP could be a form of self-care. Just to step in a good direction if you feel like it is something that you do need. It allows you to provide also grace for yourself because if being sexually active is something that you want to do for yourself, you’re allowed to and also have those precautions as mentioned earlier.(Focus Group 1, Austin, TX, USA)
Well, it’s just freedom from the stigma. You know, don’t have to have that stigma on you. You don’t have to worry about catching something that you can’t get rid of and you know, you can love yourself more. Just knowing that you taking care of yourself and you doing what you prepping. You know what I’m saying? You doing what you need to do. So just take care of yourself and the others around you.(Interview 3, Houston, TX, USA)
3.1.5. Exposure to PrEP-Related Health Communication
But if they actually included us [Black women] within it [ads], then I think we would be more inclined to be like, ‘Hmm, well what’s that? And let me learn a little more about that.’(Focus Group 2, Austin, TX, USA)
3.1.6. Preferences for Engagement in PrEP
I mean, if it [PrEP] can prevent you from getting HIV, it’s a… It is just one of those things. Like I said before today, I never heard of it. Like I said, if I spoke with my doctor and there was something that she told me that I needed to do or something like that, I probably would be more prone to do it regardless of what the side effects are. Because those side effects that you named are basic side effects, like you said, that we can get from anything. So, I would be more prone to do it coming from a specialist.(Focus Group 5, Houston, TX, USA)
3.2. Barriers to PrEP Readiness
3.2.1. Concerns with Modality
Because I know my friends who do take the birth control like the NuvaRing. I never thought of that as an option for me because I don’t know, I feel uncomfortable doing it.(Focus Group 3, Austin, TX, USA)
…the vaginal ring, I personally would not want that just because I’ll be thinking, ‘Oh, well what if it slipped out or something like that.’ And I wouldn’t want that concern.(Focus Group 3, Austin, TX, USA)
I wouldn’t want anything [PrEP vaginal ring] foreign in my body that does not have to be there, I guess. I know it’s a preventative method, but I wouldn’t want to do it.(Focus Group 5, Houston, TX, USA)
Or with the injection, maybe pain in the injection area.(Focus Group 3, Austin, TX, USA)
But with the injection, I just thought about the injection site. I don’t know where exactly it’s being injected at. So I don’t know, that could be a concern to me.(Focus Group 3, Austin, TX, USA)
With the injections, for me, it’s all about cost. What if I didn’t have health insurance or anything like that? If I needed to get it every two months, can it be covered consistently and the cost about that.(Focus Group 3, Austin, TX, USA)
And then with the shot, I also have concerns with that because first of all, me administering a shot to myself without being trained and whatnot, I feel like there’s just so many things that could go wrong, and it could break and get stuck in my skin, this and that. There’s just so many factors.(Focus Group 3, Austin, TX, USA)
The self-injection, I feel like I personally can take needles well, but I wouldn’t want to have that responsibility. Even though it’s on myself, for myself, I would want a healthcare professional who has had the experience to inject that in me.(Focus Group 3, Austin, TX, USA)
3.2.2. Concerns Regarding Continuity of PrEP Care
Not knowing the side effects of it, how long has this been an option, what are the side effects long term? Because I’m older.(Focus Group 5, Houston, TX, USA)
I mean, of course I would not want to be sick. I would not want to have weight gain, I wouldn’t want something that’s going to cause other issues going on with me, because I’m taking this. Those would be major things, especially the being sick part. I feel like sometimes, any kind of thing you put in your body can change your body, because it’s not natural.(Interview, Houston, TX, USA)
3.2.3. Low Perceived HIV Vulnerability
Yeah [I think my chances are very low for getting HIV].(Interview, Houston, TX, USA)
Or they just feel like they’re the exception to the rule on some type of sense, which we all know that’s not the case, but maybe there’s some women that really feel like it really doesn’t apply to me, so it’s not something I would want to take.(Focus Group 4, Houston, TX, USA)
I just personally wouldn’t [take PrEP], too.(Focus Group 2, Houston, TX, USA)
But I don’t think I would take PrEP at all because it’s just like I don’t think I would try to put myself in… I would ask your status or something.(Focus Group 2, Houston, TX, USA)
3.2.4. PrEP Stigma
I mean, I feel like people are just… They can be just judgy by nature, so I feel like you may still get some looks or what are you really doing? I feel like that’s just going to come.(Focus Group 2, Houston, TX, USA)
I think they might probably judge a little bit, but I think they would just assume, you know what I’m saying? Because when I first heard it, I just made an assumption, but I think some people might make an assumption like, oh you have it already. But no, that’s just to prevent it.(Interview, Houston, TX, USA)
I think that would be negative in a way, just based off of, like I said earlier, the presumption that you may have something, and that’s just because people don’t know or people don’t understand. And no matter how much you try to explain something to somebody, they probably just don’t get that. ‘Well, why would you still take that if you don’t have it?’ That’s the mindset.(Interview, Houston, TX, USA)
I would say that people would know that we were sexually active. If we vocalize that like, ‘Oh, yeah. We use PrEP, and da, da, da, da.’ It would make people aware that we’re sexually active. And if we said that we use PrEP, it would also… Maybe the first thing that comes to somebody’s mind is that you’re not only sexually active, but with multiple people that’s why you feel the need to have HIV PrEP.(Focus Group 3, Austin, TX, USA)
I feel like for, I guess my family, or probably, if I told my sister, I guess she would believe or she would think like, ‘Oh, are you sleeping with somebody who’s already infected with HIV?’ Because I feel like that’s one of the options when you are engaging with somebody who is HIV-positive.(Focus Group 3, Austin, TX, USA)
3.2.5. Aversion to Taking Manufactured Medication
Well, there’s not really any information out there at least that’s geared toward women about what the side effects are or the potential ramifications of taking it. You don’t know if you have to be screened for allergies. You don’t know if you can’t have the PrEP shot or the oral if you have certain preexisting health conditions. There’s just not a lot of information. So it’s taking a shot in the dark really.(Focus Group 2, Austin, TX, USA)
I agree as far as I’m quick to say no [to taking PrEP] also because it’s hard for me to trust things or programs or systems automatically without just seeing what comes out of it myself or not myself, but through other experiences or testimonies themselves.(Focus Group 1, Austin, TX, USA)
Yeah, it’s a no for me. It’s not just PrEP. It would be a no for me with a lot of medication. That’s just me.(Focus Group 1, Houston, TX, USA)
3.2.6. Lack of PrEP Knowledge as a Barrier
I wish there was just more information or just the same way… Because I have a friend who is a gay man and he gets those conversations had with him, but when I go to the doctor, I don’t get those conversations. So, it’s being not equal, but just basically if you’re going to tell one person, you need to tell all people about their options because again, it’s marketed as if women aren’t allowed to take it. So, it’s very misleading. So, it’s also making sure doctors are knowledgeable in sharing that information so that everyone can be protected and careful and things like that, because people are going to do what they’re going to do. So just knowing what your options are and how you can help yourself is really important.(Focus Group 2, Austin, TX, USA)
4. Discussion
4.1. Perceptions of Personal HIV Vulnerability
4.2. PrEP Messaging
4.3. PrEP Modality
4.4. Medical Mistrust
4.5. PrEP-Related Stigma
4.6. Policy Implications
4.7. Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Appendix A
Descriptive Variables | Subcategories | All Respondents a (N = 216) | Study Participants (N = 20) | ||
---|---|---|---|---|---|
Sex assigned at birth | N = 214 | % | N = 20 | % | |
Female | 209 | 98.12% | 20 | 100.0% | |
Male | 4 | 1.88% | |||
Missing | 3 | ||||
Age | N = 205 | ||||
<18 years | 3 | 1.46% | 0 | 0.0% | |
18–29 years | 146 | 71.22% | 16 | 80.0% | |
30–39 years | 44 | 21.46% | 3 | 15.0% | |
40–49 years | 7 | 3.41% | 1 | 5.0% | |
>49 years | 5 | 2.44% | 0 | 0.0% | |
Race | N = 202 | ||||
Black/African American | 202 | 100.0% | 20 | 100.0% | |
Eligible county of residence | N = 198 | ||||
Harris/Travis County | 189 | 95.45% | 20 | 100.0% | |
Other County | 9 | 4.55% | 0 | ||
County | N = 191 | ||||
Harris County | 107 | 56.02% | 10 | 50.0% | |
Travis County | 84 | 43.98% | 10 | 50.0% | |
Had condomless sex with a male partner within last 12 months | N = 189 | ||||
Yes | 147 | 77.78% | 20 | 100.0% | |
No | 42 | 22.22% | |||
Taken PrEP within last 12 months | N = 147 | ||||
Yes | 32 | 21.77% | |||
No | 115 | 78.23% | 20 | 100.0% | |
Prescribed PrEP within the last 12 months | N = 114 | ||||
Yes | 10 | 8.77% | |||
No | 104 | 91.23% | 20 | 100.0% | |
Known HIV-positive status | N = 104 | ||||
Yes | 4 | 3.85% | |||
No | 100 | 96.15% | 20 | 100.0% |
- Note.
- a All respondents represents all individuals who clicked the study link and started the eligibility screener.
# | Theme | Codes | Frequency of Codes |
---|---|---|---|
Facilitators of PrEP uptake | |||
1 | High perceived vulnerability | 10 codes | 204 |
| 58 ** | ||
| 39 * | ||
| 31 * | ||
| 29 * | ||
| 15 | ||
| 8 | ||
| 7 | ||
| 7 | ||
| 6 | ||
| 4 | ||
2 | Current engagement in HIV prevention practices | 4 codes | 52 |
| 32 * | ||
| 11 | ||
| 6 | ||
| 3 | ||
3 | Communal concern about Black women’s vulnerability to HIV | 2 codes | 22 |
| 15 | ||
| 7 | ||
4 | Exposure to PrEP-related health communication | 5 codes | 99 |
| 67 ** | ||
| 13 | ||
| 8 | ||
| 8 | ||
| 3 | ||
5 | Desire for access to humane treatment | 3 codes | 40 |
| 22 | ||
| 14 | ||
| 4 | ||
6 | Prioritizing PrEP as self-care | 6 codes | 155 |
| 107 *** | ||
| 21 | ||
| 13 | ||
| 6 | ||
| 6 | ||
| 2 | ||
7 | Preferences to ensure continuity of PrEP care | 3 codes | 182 |
| 164 *** | ||
| 11 | ||
| 7 | ||
8 | Preferred modality | 9 codes | 176 |
| 82 ** | ||
| 30 * | ||
| 14 | ||
| 13 | ||
| 13 | ||
| 10 | ||
| 6 | ||
| 4 | ||
| 4 | ||
9 | Preferences for engagement in PrEP | 6 codes | 84 |
| 38 * | ||
| 14 | ||
| 12 | ||
| 12 | ||
| 5 | ||
| 3 | ||
10 | Positive experience with the healthcare system | 2 codes | 30 |
| 16 | ||
| 14 | ||
11 | PrEP offers positive impacts on relationships | 2 codes | 17 |
| 14 | ||
| 3 |
- Note.
- *** frequency of codes ≥ 100; ** frequency of codes ≥ 50; * frequency of codes ≥ 25.
# | Themes | Codes | Frequency of Codes |
---|---|---|---|
Barriers to PrEP uptake | |||
1 | Low perceived HIV vulnerability | 7 codes | 117 |
| 50 ** | ||
| 28 * | ||
| 23 | ||
| 6 | ||
| 4 | ||
| 3 | ||
| 3 | ||
2 | Negative experiences with healthcare system | 4 codes | 16 |
| 6 | ||
| 4 | ||
| 3 | ||
| 3 | ||
3 | Medical mistrust | 8 codes | 64 |
| 32 * | ||
| 8 | ||
| 6 | ||
| 6 | ||
| 5 | ||
| 3 | ||
| 3 | ||
| 1 | ||
4 | Lack of exposure to PrEP-related messaging for cis-hetero Black women | 6 codes | 78 |
| 39 * | ||
| 17 | ||
| 9 | ||
| 4 | ||
| 4 | ||
| 5 | ||
5 | Concerns with continuity of PrEP care | 10 codes | 118 |
| 35 * | ||
| 22 | ||
| 18 | ||
| 17 | ||
| 9 | ||
| 4 | ||
| 4 | ||
| 3 | ||
| 3 | ||
| 3 | ||
6 | Concerns with modality | 10 codes | 210 |
| 57 ** | ||
| 31 * | ||
| 29 * | ||
| 27 * | ||
| 22 | ||
| 17 | ||
| 14 | ||
| 5 | ||
| 4 | ||
| 4 | ||
7 | PrEP stigma | 6 codes | 97 |
| 49 * | ||
| 27 * | ||
| 11 | ||
| 6 | ||
| 2 | ||
| 2 | ||
8 | Aversion to taking manufactured medication | 6 codes | 97 |
| 35 * | ||
| 28 * | ||
| 22 | ||
| 7 | ||
| 3 | ||
| 2 | ||
9 | Lack of PrEP knowledge as a barrier | 3 codes | 73 |
| 60 ** | ||
| 9 | ||
| 4 | ||
10 | Concern that PrEP does not protect from other STDs | 1 code | 2 |
| 2 |
- Note.
- ** frequency of codes ≥ 50; * frequency of codes ≥ 25.
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Theme | Codes | Frequency of Codes |
---|---|---|
High perceived vulnerability | 10 codes | 204 |
| 58 ** | |
| 39 * | |
| 31 * | |
| 29 * | |
| 15 | |
| 8 | |
| 7 | |
| 7 | |
| 6 | |
| 4 | |
Preferences to ensure continuity of PrEP care | 3 codes | 182 |
| 164 *** | |
| 11 | |
| 7 | |
Preferred modality | 9 codes | 176 |
| 82 ** | |
| 30 * | |
| 14 | |
| 13 | |
| 13 | |
| 10 | |
| 6 | |
| 4 | |
| 4 | |
Prioritizing PrEP as self-care | 6 codes | 155 |
| 107 *** | |
| 21 | |
| 13 | |
| 6 | |
| 6 | |
| 2 | |
Exposure to PrEP-related health communication | 5 codes | 99 |
| 67 ** | |
| 13 | |
| 8 | |
| 8 | |
| 3 | |
Preferences for engagement in PrEP | 6 codes | 84 |
| 38 * | |
| 14 | |
| 12 | |
| 12 | |
| 5 | |
| 3 |
- Note.
- *** frequency of codes ≥ 100; ** frequency of codes ≥ 50; * frequency of codes ≥ 25.
Themes | Codes | Frequency of Codes |
---|---|---|
Concerns with modality | 10 codes | 210 |
| 57 ** | |
| 31 * | |
| 29 * | |
| 27 * | |
| 22 | |
| 17 | |
| 14 | |
| 5 | |
| 4 | |
| 4 | |
Concerns with continuity of PrEP care | 10 codes | 118 |
| 35 * | |
| 22 | |
| 18 | |
| 17 | |
| 9 | |
| 4 | |
| 4 | |
| 3 | |
| 3 | |
| 3 | |
Low perceived HIV vulnerability | 7 codes | 117 |
| 50 ** | |
| 28 * | |
| 23 | |
| 6 | |
| 4 | |
| 3 | |
| 3 | |
PrEP stigma | 6 codes | 97 |
| 49 * | |
| 27 * | |
| 11 | |
| 6 | |
| 2 | |
| 2 | |
Aversion to taking manufactured medication | 6 codes | 97 |
| 35 * | |
| 28 * | |
| 22 | |
| 7 | |
| 3 | |
| 2 | |
Lack of PrEP knowledge as a barrier | 3 codes | 73 |
| 60 ** | |
| 9 | |
| 4 |
- Note.
- ** frequency of codes ≥ 50; * frequency of codes ≥ 25.
Stakeholders | Recommendations |
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Researchers and Interventionists |
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Healthcare Providers |
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Funders and Industry |
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Hill, M.J.; Sophus, A.I.; Gray, A.; Wright, J.I. A Qualitative Study Exploring How the Perspectives and Experiences of Cisgender Black Women Inform Their Readiness to Consider Pre-Exposure Prophylaxis for HIV Prevention. Int. J. Environ. Res. Public Health 2025, 22, 558. https://doi.org/10.3390/ijerph22040558
Hill MJ, Sophus AI, Gray A, Wright JI. A Qualitative Study Exploring How the Perspectives and Experiences of Cisgender Black Women Inform Their Readiness to Consider Pre-Exposure Prophylaxis for HIV Prevention. International Journal of Environmental Research and Public Health. 2025; 22(4):558. https://doi.org/10.3390/ijerph22040558
Chicago/Turabian StyleHill, Mandy J., Amber I. Sophus, Aaliyah Gray, and Jaylen I. Wright. 2025. "A Qualitative Study Exploring How the Perspectives and Experiences of Cisgender Black Women Inform Their Readiness to Consider Pre-Exposure Prophylaxis for HIV Prevention" International Journal of Environmental Research and Public Health 22, no. 4: 558. https://doi.org/10.3390/ijerph22040558
APA StyleHill, M. J., Sophus, A. I., Gray, A., & Wright, J. I. (2025). A Qualitative Study Exploring How the Perspectives and Experiences of Cisgender Black Women Inform Their Readiness to Consider Pre-Exposure Prophylaxis for HIV Prevention. International Journal of Environmental Research and Public Health, 22(4), 558. https://doi.org/10.3390/ijerph22040558