Abstract
Purpose of Review
Black women’s sexual well-being is predicated upon having the autonomy, resources, and access to define, explore, and safely enjoy their sexuality and intimacy. Black cisgender and transgender women have been placed at disproportional risk for HIV due to structural and health specific inequities. Pre-exposure prophylaxis (PrEP), an effective biomedical intervention, reduces HIV transmission from sex or injection drug use by 99%, however the uptake of PrEP remains low among Black cisgender and transgender women. Using the PRISMA technique, we conducted a review of literature on Black women, cisgender and transgender, and PrEP. We used Google Scholar and PubMed to conduct the search.
Recent Findings
Our initial search garnered 2,221 sources across the two databases. However, n = 197 articles were included in this review based on the screening process and our inclusion criteria. Socio-cultural factors, provider factors, low HIV risk awareness, limited PrEP awareness and knowledge, communication, motivation, concerns about PrEP, barriers, and sexual agency, power, and pleasure may impact utilization of PrEP among Black transgender and cisgender women. However, facilitators were highlighted as well as interventions, though limited.
Summary
To adequately meet the needs of Black women and increase PrEP uptake, there is a need to address these factors that may impact utilization and develop effective interventions for Black women surrounding PrEP.
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Introduction
Sexual well-being overlaps with and necessitates emotional, physical, mental, and social well-being in relation to sexuality—sexual attractions, thoughts, feelings, and behavior. [1] For marginalized communities such as Black women, sexuality has been defined, controlled, and impacted by the guise of patriarchy, sexism, and racism, which negatively impacts sexual well-being. [2] As such the availability and access to resources and tools that support autonomy, safety, and sexual pleasure is imperative for Black women’s sexual well-being. [3, 4] While sexual well-being is not defined by the absence of a health condition, modern tools for the prevention of HIV present key opportunities, though unreached, to support the sexual well-being of Black women.
While the overall rates of Human Immunodeficiency Virus (HIV) are steadily declining—for example, compared to 2021 annual new HIV transmissions were 12% lower than transmission rates in 2017- [5] disproportionate rates are still seen among Black cisgender and transgender women due to structural issues like racism, sexism, and transphobia/cis-genderism. [6,7,8,9] This disproportionality is not isolated to the United States, but similar research findings are seen worldwide. [10, 11] Prevention is one pillar of the Ending the HIV Epidemic in the US initiative, aiming to prevent new HIV transmissions through preventative avenues like Pre-Exposure Prophylaxis (PrEP). [12] PrEP was approved for use by the FDA in 2012 and is designed to reduce the chances of HIV transmission from sex or injection drug use. [13] PrEP can be taken daily or via injectable shots, and when taken as prescribed, PrEP can lower HIV transmission risk from sex and injection drug use by 99% and 74%, respectively. [14]
Despite the effectiveness of PrEP in reducing HIV transmission, uptake of PrEP is startlingly low in eligible Black cis and trans women. [15, 16] Less than 2% of Black cis women indicated for PrEP in the U.S. received a prescription. [17] In a study conducted in Baltimore and Washington D.C., in a sample of 201 Black and Latina trans women, 87% had heard of PrEP but of that 87%, only 18% had taken PrEP. [18] While these studies were conducted in the U.S., research conducted internationally yield similar results. Another study explored PrEP awareness, uptake and willingness in 213 trans women in South Africa and found that 45% of HIV-negative participants knew about PrEP but only 11% were taking PrEP. [19]
The disparities seen in HIV prevalence have been linked to socio-cultural factors including discrimination, racism, transphobia and housing instability. [6, 20, 21] Similar trends have been seen in PrEP uptake and utilization, with experiences of discrimination and racism negatively impacting PrEP use among Black individuals. [22, 23] In their systematic review, Ghadimi and colleagues reported that Black patients were less likely to have discussions about PrEP, receive a PrEP prescription, and less likely to be retained in PrEP care when compared to their white counterparts. [24] Cahill and colleagues also found poverty to be a significant factor impacting PrEP use among trans women. [25]
While systematic reviews have been conducted previously on PrEP, [26,27,28,29,30,31] none have focused on PrEP among Black cisgender and transgender women in the United States and internationally. Understanding the factors impacting Black women’s use of PrEP is crucial to developing interventions to improve uptake of PrEP among Black women and support their sexual well-being. This systematic review searches, evaluates, and synthesizes articles published on Black women, both cisgender and transgender, and PrEP (Tables 1 and 2).
Methods
This systematic review was conducted using the PRISMA technique (see Fig. 1) to search for studies that investigated Black women’s sexual well-being in the age of PrEP. The databases Google Scholar and PubMed were used to conduct the search. Authors performed a Boolean search of the following terms given their knowledge of research on HIV and Black women: (1) “Black” AND “women” AND “PrEP” and (2) “Black” AND “transgender” AND “women” AND “PrEP”.
Inclusion and Exclusion Criteria
To be eligible for inclusion in this systematic review, studies had to be (1) original research articles, (2) available in English (3) focused on Black cisgender and/or transgender women, and (4) published in or after 2018. We excluded books, theses, and dissertations, articles that were not available in English, articles that did not focus on Black cisgender or transgender women, and articles whose sample were exclusively individuals younger than 18. To be considered “focused”, study samples had to include more than 50% Black cisgender women for studies on cisgender women. However, given that the Black transgender women community is smaller, we included all articles whose sample included Black trans women to ensure that the literature is covered.
Study Selection and Data Extraction
Databases were searched and articles were selected by the two authors. Google Scholar and PubMed populated 2,221 sources, n = 505 were duplicate sources, hence removed, n = 451 were excluded as they were either books, theses or dissertations and n = 6 were excluded for other reasons. These excluded sources left 1,259 to be screened for eligibility. We then excluded n = 1,029 articles whose title and abstract were unrelated to Black women and PrEP, leaving n = 230 eligible for full-text review. Figure 1 displays the selection process for this systematic review.
Study Characteristics
One hundred and ninety-seven studies were included in this systematic review. Ninety of the studies were qualitative, sixty-three were quantitative, twelve were experimental and thirty-two used a mixed methods approach. Of the 197 studies, 154 were conducted in the United States, thirteen in South Africa, eight in Brazil, five in Kenya, four in Uganda, three in the UK, two in Belgium and one in Jamaica, Eswatini and Zimbabwe. A few studies were conducted from sites in multiple countries. For example, two studies took place in Kenya and Uganda, and one study took place in Brazil, Peru and Mexico while another took place in Kenya and South Africa.
Results
Overall, we reviewed 1,259 sources in our initial screening. One hundred and ninety-seven studies focused on Black women in the age of PrEP, examining a multitude of PrEP variables, including PrEP awareness, knowledge, and uptake. Sixty-two studies included Black transgender women in their sample, while the remaining studies included Black cisgender women. The majority of studies did not mention sexual well-being in relation to PrEP, however a few studies examined sexual agency, power, and pleasure. For most studies, there was an overlap in PrEP variables examined, which is evidenced by the themes below.
PrEP Awareness
Fifty-eight studies examined PrEP awareness in Black women. [16, 19, 32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59,60,61,62,63,64,65,66,67,68,69,70,71,72,73,74,75,76,77,78,79,80,81,82,83,84,85,86,87] Forty-nine of these studies were conducted in the U.S., two in South Africa [19, 83] and one study was conducted in Australia, Eswatini, Jamaica, Brazil, Uganda, the United Kingdom and Zimbabwe, respectively [40, 51, 67, 71, 72, 80, 87]. Fourteen of the fifty-eight studies included Black trans women in their sample. [49, 52, 53, 60, 61, 65,66,67, 72, 74, 80, 81, 88, 89] More studies (n = 34) found that participants demonstrated low PrEP awareness [19, 32, 37,38,39,40, 42, 43, 45, 49, 50, 54, 56,57,58,59,60, 63, 64, 67,68,69, 71,72,73, 77, 79, 80, 82,83,84,85, 87, 90] while 24 studies found that Black women, cis and trans, were aware of PrEP. [16, 33, 35, 36, 41, 44, 46,47,48, 51,52,53, 61, 62, 65, 66, 74,75,76, 78, 81, 88, 89] Two studies found that providers also lacked of awareness of PrEP. [40, 48]
PrEP Knowledge
Twenty-seven studies examined PrEP knowledge. Twenty-one of these studies were conducted in the United States and one was conducted each in the UK, South Africa, Australia and Eswatini. Six studies included Black trans women, [49, 61, 91,92,93] while the remaining 21 studies were focused on Black cisgender women. Thirty-six of the 38 studies found that Black cis and trans women had limited or incorrect information about PrEP. [16, 32, 33, 36, 38, 39, 42, 43, 47, 49, 91,92,93,94,95,96,97,98,99,100,101,102,103] Two studies also found that providers lacked education on PrEP. [40, 104] However, two studies (one in U.S. and one in Eswatini) found that women were knowledgeable about the safety and effectiveness of PrEP. [51, 61]
Low Risk Awareness
Eighteen of the studies examined HIV risk awareness in their samples. [16, 40, 42, 43, 46, 47, 50, 58, 73, 74, 77, 94, 97, 101, 105,106,107,108] Sixteen studies were conducted in the United States, while one was conducted in Australia and the UK each. [40, 94] Only three studies included Black trans women, [74, 106, 108] but all studies found low HIV risk awareness, which impacts Black women’s interest and uptake of PrEP. [47, 77]
Concerns About PrEP
Twenty-seven studies examined PrEP concerns. [16, 19, 32, 33, 36, 43, 46, 49, 80, 90, 97, 101, 103, 106,107,108,109,110,111,112,113,114,115,116,117,118,119] Twenty-three studies were conducted in the United States, while one study each was conducted in South Africa, [19] Zimbabwe, [80] Belgium, [103] and Kenya. [117] Twenty-one studies included Black cisgender women and six studies included Black transgender women. [49, 80, 106, 108, 116, 19] Twenty-four studies found that the side effects of PrEP are a common concern for Black women, [16, 32, 33, 36, 43, 46, 49, 80, 90, 97, 101, 103, 106, 19, 107,108,109,110,111,112,113, 116, 117, 119] including the impact of PrEP use in pregnant women [111] and the possible interaction of PrEP with other drugs. [32, 43, 46] Results of nine studies found that the cost of PrEP was also a concern for Black cis and trans women [16, 32, 36, 49, 97, 110, 19, 112, 113] and three studies reported that the safety and efficacy of PrEP was a concern voiced. [32, 115, 118] Three studies found that women were concerned about the adherence required for PrEP usage in the daily pill form. [19, 112, 114] Overall, the most major concern for Black cis and trans women were side effects, while the cost of PrEP was a common concern.
PrEP Communication
Thirty studies have examined Black women’s communication with others surrounding PrEP. [7, 32, 37, 38, 46,47,48, 50, 97,98,99, 104, 106, 111, 112, 120,121,122,123,124,125,126,127,128,129,130,131,132,133] Twenty-five studies were conducted in the United States, two in South Africa [126, 127] and Brazil, [129, 130] respectively, and one was conducted in the UK. [98] Eight studies included Black trans women in their sample, [7, 106, 120, 123, 125, 129,130,131] three had samples inclusive of cis and trans Black women [124, 128, 132] while the remainder focused on Black cis women. Six studies showed that there is a lack of communication about PrEP from providers to Black women, [32, 38, 47, 48, 99] although women are willing to engage in discussions about PrEP with their provider, as shown in four studies. [37, 46, 111, 121] Two studies found that providers have a low comfort level and low cultural competency when discussing PrEP with Black women. [104, 111] Three studies found that Black cis and trans women had prior discussions with their provider about PrEP [7, 84, 112] and one study found that Black women had a desire for more communication about PrEP from their providers. [122] Despite their readiness to speak about PrEP with their providers, providers seldom communicated with Black women about PrEP.
Five studies found that Black women were confident in their ability to engage with their partner about PrEP [37, 120, 123, 130, 134] and three studies that included Black trans women found that current PrEP users reported frequently discussing methods to prevent HIV transmission among their networks. [106, 120, 123] Dale found that women spread the word about PrEP to members of their social network, including their friends and children [133] and D’Avanzo and colleagues found that the least community-connected participants had more negative beliefs about PrEP. [125] In their sample, which was inclusive of Black trans women, Phillips and colleagues found that participants who reported usage of PrEP also had high levels of social support. [131] Similarly, Daniels and colleagues found that participants with greater PrEP adherence also had larger social support networks. [126]
Sexual Agency, Power, and Pleasure
Ten studies reported how one’s sexual agency, power and sexual pleasure impacted PrEP interest, initiation and use. [7, 48, 52, 100, 101, 120, 135,136,137] Eight of these studies were conducted in the United States, [7, 48, 52, 101, 120, 136, 138, 139] while two took place in South Africa. [100, 135] Six of these studies included samples with Black cis women, [48, 100, 101, 135, 136, 138] two included samples of trans women, [7, 120] and one included both trans and cis women. [52] Of the ten studies, seven looked at sexual agency in relation to PrEP, women’s right to protect themselves and their ability to make decisions in relation to PrEP. [7, 52, 100, 101, 120, 135, 139] Two studies reported that sexual agency facilitated usage of PrEP, [101, 120] while one study reported that their participants exhibited a strong sense of agency regarding their overall sexual wellbeing. [100] Sharing PrEP information in a provider-patient relationship, and the implementation of interventions empowered women to practice agency related to their sexual health. [7, 52, 135] Three studies examined sexual power, women’s ability to influence or control their sexual health. [48, 136, 139] While one study reported that sexual power was not correlated with participants’ willingness to initiate PrEP, [136] two studies reported that relationship power dynamics can shape women’s access to PrEP and lead to a lack of control over their bodies. [48, 139] One study embraced pleasure as an important aspect of HIV prevention in their campaign’s messaging, by emphasizing that sex can be both pleasurable and safe. [4]
Motivating and Facilitating Factors for PrEP
The literature covers both motivating factors for PrEP pointing to individual factors that stimulate Black women’s interest or use of PrEP, as well as facilitating factors such as support and resources made available that encourage PrEP interest, access, or use. Twenty-three studies examined Black women’s motivators to use PrEP. [16, 37, 39, 41, 48, 68, 84, 85, 88, 90, 105, 109, 113, 118, 130, 132, 133, 136, 140,141,142,143] Twenty-one studies were conducted in the US, while one was conducted in both Kenya [143] and Brazil. [130] Most studies [20] included Black cisgender women in their sample, two studies included transgender women, [88, 130] and one study included cis and transgender women. [132] Eight studies found that women viewing PrEP as a tool of empowerment motivated their PrEP interest or uptake. [16, 48, 50, 90, 109, 113, 133, 141] Three studies found that being in serodiscordant relationships motivated Black women to use PrEP [113, 133, 141] while Ichite and colleagues found that interpersonal relationships can serve as either motivators or barriers to PrEP initiation. [140] Eight studies found that higher HIV risk, perceived or actual, was also a motivator for Black women’s PrEP usage, intent or interest. [68, 90, 105, 109, 113, 118, 142, 143] Free PrEP access, contraceptive use, recent HIV testing, and knowledge of the effectiveness of PrEP were also found to be motivators to use PrEP among Black women. [37, 41, 68, 85, 90, 130] Across studies, women’s motivation to use PrEP was influenced by relationship factors, ideas about PrEP, and risk factors for HIV.
Seventeen studies examined the facilitators to women’s PrEP engagement. [16, 36, 37, 40, 46, 68, 82, 88, 96,97,98, 110, 113, 119, 133, 144,145,146] Fifteen studies were conducted in the U.S., while one was conducted in the U.K. [98] and one study was done in Australia. [40] Fifteen studies had samples including Black cis women, while two included Black trans women. [88, 146] Seven studies found that tailoring PrEP education to Black women and providing this education and promoting PrEP at frequented locations that are deemed safe are facilitators to PrEP engagement. [16, 40, 68, 82, 97, 133] HIV risk perception, perceived benefit of PrEP, high HIV knowledge and PrEP willingness and acceptability were all seen as facilitators to PrEP. [40, 46, 66, 96, 110, 145, 147] A few studies also found that trust in science, having a relationship with providers along the PrEP care continuum and confidence about adherence also serve as facilitators to PrEP among Black women. [82, 96, 97, 113, 144, 147] Free PrEP access, including insurance coverage of PrEP, and gender affirmation for trans women, are facilitators, according to six studies. [34, 36, 37, 96, 113, 148, 149] Adapting PrEP services to fit the needs of Black women were the most common facilitating factors for PrEP use, while resources that work to address structural issues also facilitated PrEP use among Black women.
PrEP Barriers
Thirty-four studies examined barriers to PrEP among Black women. [7, 33, 34, 36, 38, 40, 42, 43, 46, 47, 69, 82, 90, 96, 98, 99, 101, 106, 108,109,110,111,112,113, 117, 128, 140, 145, 147, 150,151,152] Four studies highlighted barriers to PrEP among trans women. [7, 34, 108, 151] Thirty-two studies took place in the United States and one took place in Australia [40] and Kenya. [117] Eighteen of the thirty-four studies found that perceived and actual PrEP and HIV stigma serves as a barrier to PrEP among women. [33, 34, 36, 43, 47, 69, 96,97,98, 101, 109, 110, 113, 117, 128, 144, 150, 151] Fourteen studies reported that limited PrEP awareness and knowledge were also barriers to PrEP. [33, 36, 38, 40, 47, 82, 96, 97, 101, 109,110,111, 128, 151] Eleven studies found that low HIV risk awareness hinders PrEP uptake for Black women [33, 40, 42, 43, 46, 47, 96, 97, 99, 101, 106, 110] while twelve found that medical mistrust serves as a barrier to Black women’s interest, access and utilization of PrEP. [7, 33, 34, 36, 42, 43, 46, 90, 101, 109, 111, 113, 119] While not as common, a few studies found that lack of targeted marketing of PrEP, the PrEP regimen, low acceptability, insurance issues, shame about sexual practices, barriers to legal documents and/or substance use all serve as barriers to PrEP for Black women. [32, 34, 47, 96, 97]
Provider Factors
Thirty-three articles reported provider factors that influenced Black women’s uptake of PrEP. Twenty-seven of these studies were carried out in the U.S. while two were conducted in Kenya. [117, 153] One study each was conducted in Belgium, [154] Australia [40] and South Africa. [127] One study was conducted in Kenya and South Africa. [155] Three studies highlighted provider factors among Black trans women [6, 120, 145]. Four studies found that comfort and trust with providers positively impacted PrEP interest and uptake among Black women [37, 46, 106, 121] and two studies reported providers being comfortable discussing PrEP with their clients [127, 147]. Studies also found that specific PrEP recommendations by providers, having a provider with lived experience (e.g. trans identity) and having previous discussions on PrEP all positively impacted Black cis and trans women along the PrEP continuum. [7, 38, 50] Also, hair stylists created safe spaces for Black women, and they were willing to discuss PrEP with their clients. [156]
Five studies found a lack of PrEP knowledge and awareness among providers. [38, 40, 42, 48, 104] One study found that providers were not recognizing women’s risk [40] and another study found that adherence expectations significantly impacted provider’s willingness to discuss and prescribe PrEP. [157] This study also found that lower willingness to discuss and prescribe PrEP to Black women was associated with higher modern racism scores among providers. [157] Lastly, two studies found that providers had discomfort discussing PrEP [104] and managing PrEP patients. [110] Related to this, one study found that Black women had shame discussing sexual behaviors with providers and anticipated judgement when discussing PrEP. [38] Experiencing transphobia, racism and homophobia in healthcare settings was linked to loss of care, according to one study. [7] Lastly, difficulty finding a PrEP provider also negatively impacted Black women’s PrEP engagement. [47]
Socio-Cultural Factors Impacting PrEP Use
Seventy-six studies included in this review highlighted socio-cultural factors impacting PrEP use among Black women. [7, 16, 19, 22, 32,33,34, 36, 37, 42, 43, 46, 47, 50, 51, 53, 56, 62, 67, 69, 71, 72, 82, 87, 88, 90, 94, 96, 97, 101, 103, 105, 106, 108, 113, 114, 117, 120, 121, 123, 127, 128, 135, 138, 144, 146, 147, 149,150,151, 153, 158,159,160,161,162,163,164,165,166,167,168,169,170,171,172,173,174,175,176,177,178,179] Fifty-nine of these studies were conducted in the US, five in South Africa, [19, 127, 135, 158, 159] four in Brazil, [67, 160,161,162] three in Kenya, [117, 153, 163] two in the U.K. [87, 94] and one each in Eswatini, [51] Jamaica, [72] and Belgium. [103] Twenty-five studies highlighted socio-cultural factors impacting PrEP use for Black trans women [7, 22, 67, 108, 19, 120, 123, 146, 149, 151, 160,161,162, 164, 166,167,168,169, 171, 172, 174,175,176, 179] and two studies reported results from cis and trans women. [72, 170] PrEP stigma impacted Black women’s utilization of PrEP, as reported by twelve studies. [7, 36, 47, 69, 101, 106, 114, 117, 127, 151, 170, 176] Medical mistrust negatively impacted PrEP engagement among Black cis and trans women as indicated in ten studies. [7, 32, 33, 36, 42, 94, 101, 147, 170, 173] Six studies reported that discrimination, perceived or actual, negatively impacted women’s utilization of healthcare services, including PrEP. [22, 46, 103, 165, 169, 172] Four studies found that women had shame and worry about what others would think if they engaged in PrEP. [7, 37, 46, 51] Also, being racially minoritized may play a role for Black cis and trans women along the PrEP care continuum according to four studies. [7, 67, 103, 176] For example, Jalil and colleagues found that being Black was borderline associated with low PrEP adherence. [67] Comparably, Mustanski and colleagues found significant geospatial hotspots of PrEP stigma in predominately minority communities. [176] Two studies found that stereotypes surrounding PrEP use affected women’s uptake, [87, 150] while one study found that previous experiences of transphobia and homophobia in healthcare settings negatively impacted trans women’s utilization of healthcare. [7] Lack of or complicated insurance and lack of transportation were also factors negatively impacting PrEP use. [22, 33, 34, 42, 43, 47, 97, 108, 177] Three studies also found that competing daily demands made it difficult to seek PrEP-related services. [38, 96, 97]
Women with lower income and education levels had higher PrEP interest and initiation among Black women. [105, 180] However, cost was a factor that influenced Black women’s use of PrEP in seven studies. [33, 37, 47, 96, 97, 108, 113] Six studies also reported on the negative impacts substance use can have on PrEP outcomes among Black cis and trans women. [34, 47, 56, 96, 148, 160] Among Black trans women, barriers to legal documents was a hindrance to PrEP use, [34] but gender affirmation and taking hormone treatments positively impacted PrEP awareness and usage. [146, 169, 175] Similarly, Quinn and colleagues found community connectedness to be a factor positively impacting PrEP use among Black women. [22]
Six studies looked at the relationship between PrEP and COVID-19 [22, 123, 166,167,168, 181] on PrEP use and a few found that participants had similar or easier access to PrEP since stay-at-home orders became effective, and participants used PrEP about the same or more post- stay at home orders. [166, 167] One study, however, found that participants recruited after the COVID shutdowns were less likely to use PrEP. [22]
PrEP Interventions
Forty-eight studies discussed the findings of interventions around PrEP among Black women. Three studies were conducted in South Africa, [182,183,184] two in both Kenya [143, 185] and Brazil. [129, 186] Two studies took place in Kenya and Uganda [187, 188] and another multi-site study was conducted in Mexico, Brazil and Peru. [189] One study was conducted in the U.K. [98] and the remaining studies were conducted in the U.S. Eleven interventions were geared to trans women, [75, 129, 131, 148, 184, 189,190,191,192,193,194] one was geared towards cis and trans women [195] and the remaining were geared to cis women. Twenty-five interventions were launched with the goal of increasing PrEP awareness, knowledge, and/or uptake. [4, 39, 45, 54, 57, 75, 98, 105, 129, 131, 133, 152, 180, 182, 188, 190, 196,197,198,199,200,201,202,203] Three studies aimed to increase PrEP interest. [54, 105, 138] Ten studies focused on the acceptability, feasibility or fidelity of their interventions, [57, 98, 129, 133, 148, 152, 184, 195, 200, 201] and all but one study reported that their intervention was well-received. [57, 129, 133, 148, 152, 184, 195, 200, 201] Seventeen studies found significant differences pre- and post-intervention, indicating some evidence of success. [4, 39, 45, 75, 133, 134, 138, 180, 187, 192, 194, 199, 204, 205]
Discussion
PrEP is a promising biomedical prevention tool to support the sexual well-being of Black cisgender and transgender women who are placed at disproportional risk for HIV in the U.S. and internationally. The current systematic review of original research studies published between 2018 and December 2023 and focused on Black women and PrEP highlights key information, facilitators, barriers, interventions, and gaps in the existing research and literature. Across studies content/factors covered included: PrEP awareness, PrEP knowledge, risk awareness, concerns about PrEP, PrEP communication, motivating and facilitating factors, sexual agency, power, and pleasure, barriers, provider factors, socio-cultural factors impacting PrEP use, and interventions.
PrEP awareness and knowledge are necessary steps in moving the needle on PrEP uptake, however the literature showed divergent findings. While a moderate amount of studies indicated that Black cis and trans women were aware of PrEP, [16, 33, 35, 36, 41, 44, 46,47,48, 51,52,53, 61, 62, 65, 66, 74,75,76, 78, 81, 88, 89] the remaining studies indicated that the majority of women were unaware. [19, 32, 37,38,39,40, 42, 43, 45, 49, 50, 54, 56,57,58,59,60, 63, 64, 67,68,69, 71,72,73, 77, 79, 80, 82,83,84,85, 87, 90] In addition, providers were also noted as lacking awareness in a small portion of studies. [40, 48] Similarly, in regards to knowledge a sizeable number of studies noted that Black women had either incorrect or limited information about PrEP. [16, 32, 33, 36, 38, 39, 42, 43, 47, 49, 91,92,93,94,95,96,97,98,99,100,101,102,103] However, only a limited number of studies showed that women were knowledgeable about PrEP. [51, 61] Two studies also found that providers lacked education about PrEP. [40, 104] These findings indicate that there is still a need to increase awareness and accurate knowledge for Black women and providers.
PrEP awareness works in concert with HIV risk awareness among Black women. Most studies that covered HIV risk awareness were conducted among Black cisgender women, while a handful included Black trans women, and all indicated that women perceived low HIV risk awareness and that impacted their interest and uptake of PrEP. [16, 40, 42, 43, 46, 47, 50, 58, 73, 74, 77, 94, 97, 101, 105,106,107,108] If Black women are not perceiving their risk for HIV then they may not see the value in PrEP for their sexual health. Both campaigns (e.g. advertisement, social media) using cultural congruent communication strategies and messages as well as interventions are needed to fill the discrepancy between Black women’s perceived risk and actual risk for HIV.
Black cisgender women’s concerns about PrEP were also evident in the existing literature, but only a few studies highlighted the concerns of trans women. [49, 80, 106, 108, 116, 19] Cis women were concerned about side effects and it’s use for pregnant women, [111] but both cis and trans women were concerned about the cost of PrEP. [16, 32, 36, 49, 97, 110, 112, 19, 113] This poses a real barrier to PrEP uptake among women with limited financial resources and health insurance. In addition, in states such as Florida where Medicaid expansion remains a distal hope, there may be even fewer resources to offset the cost of PrEP. Policies and funding are needed from the government and pharmaceutical companies to make PrEP affordable and accessible to Black women. [206, 207]
Overall the literature highlighted that Black cis and trans women are willing to engage in discussions about PrEP with partners, family, social networks, and providers, [37, 46, 106, 111, 120, 121, 123, 130, 131] but providers lacked communication with Black women about PrEP which may be linked to limited comfort and cultural competency. [32, 38, 47, 48, 99] Taken together this echoes that Black women are having conversations about PrEP, but key players in healthcare such as providers need to be trained to adequately communicate with Black women about PrEP. One approach is providing training to providers in innovative ways such as using the ProvideHER initiative, a new peer-to-peer model to help medical professionals better provide culturally competent care to Black women. [208] Further, these literature findings supports the need for a representative and culturally competent workforce. Thus investing financial and institutional resources into recruiting, paying, and supporting staff that have shared identities and lived expertise in communicating with Black women may allow for more effective PrEP patient-provider communication. [98]
Studies also assessed motivating and facilitating factors for PrEP use among Black women, although the vast majority of the studies focused on cis women and only a few focused on trans women. [88, 130, 132] Viewing PrEP as a tool of sexual empowerment, being in HIV serodiscordant relationships, higher perceived HIV risk, free access to PrEP, recent HIV testing, positive relationships with providers, and knowledge of the effectiveness of PrEP were noted as motivating and facilitating factors. This further echoes the points above regarding ensuring that women can access PrEP without financial barriers as well as the need to provide accurate information about PrEP’s utility in general and at the time of HIV testing. [57, 113] Additionally, studies indicated that tailoring PrEP education to Black women, gender affirming care for trans women, and providing education/promotion of PrEP at places Black women frequent were also facilitating factors. [16, 34, 40, 68, 82, 97, 133, 146] Ironically, only very few articles covered sexual agency, power, and pleasure, but indicated that agency and pleasure are important facilitators for PrEP use, while the lack of power within sexual relationships may be a barrier. [7, 48, 52, 100, 101, 120, 135,136,137] In sum, there is a clear need for messaging, strategies, and interventions that are sex-positive, affirming, and aim to reach and empower Black women around their sexual desires and behaviors [209].
Across a good portion of studies, many of the barriers to PrEP for Black women (e.g., low PrEP awareness/knowledge, low HIV risk perception, costs/insurance, lack of tailored marketing) that were highlighted juxtaposition the motivating and facilitating factors mentioned above. [82, 91, 99, 175] Only a minor portion of these studies report barriers to trans women. [7, 34, 108, 151]Additional barriers were PrEP and HIV stigma and shame about sexual practices. [33, 34, 36, 43, 47, 69, 96,97,98, 101, 109, 110, 113, 117, 128, 144, 150, 151] Stigma remains one of the biggest barriers in the fight to end the HIV epidemic so it is unsurprising that it serves as a barrier to PrEP. [210] However, this echoes the need for anti-stigma, sex positive, and affirming approaches to improving PrEP uptake among Black women.
Medical providers play an important role in facilitating Black women’s journey to PrEP use, however the literature, though limited for Black trans women [6, 120, 145] highlights numerous ways that providers serve as barriers. For instance, among providers, lack of PrEP awareness/knowledge, nonrecognition of women’s risk, adherence expectations, and racism impacted provider’s willingness to discuss and prescribe PrEP to Black women. [38, 40, 157] Additionally, transphobia, racism and homophobia in healthcare settings was linked to loss of engagement in care. Some providers may also have discomfort managing PrEP clients. [110] However, the literature also supported the positive approaches by providers that may be beneficial. Providers who made specific PrEP recommendations to clients and had lived expertise (e.g., of trans identity) were beneficial to cis and trans Black women. [7] Taken together this indicates that interventions with providers are necessary to address the barriers they impose as well as to equip them with tools to adequately serve Black women and their sexual health.
PrEP interventions among Black women, both cis and trans, remain limited. However, the interventions discussed in the literature are making aims to increase PrEP awareness, knowledge, uptake, and/or adherence. [4, 39, 45, 54, 57, 75, 98, 105, 129, 131, 133, 152, 180, 182, 188, 190, 196,197,198,199,200,201,202,203] Some interventions have found evidence of acceptability, feasibility, and/or efficacy. [4, 39, 45, 75, 133, 134, 138, 180, 187, 192, 194, 199, 204, 205] For example, Johnson and colleagues reported that their intervention was successful in increasing PrEP knowledge and was well received by participants. [39] Similarly, Dale found high satisfaction ratings among Black women, increases in PrEP uptake, knowledge, and motivation to use, and decreases in PrEP barriers and medical mistrust. [133] Given the importance of increased PrEP uptake among Black women, monetary support from funding institutes and organizations is needed for researchers invested in developing meaningful and effective interventions to increase PrEP uptake among Black cis and trans women.
The most highlighted factor across the literature were socio-structural factors impacting PrEP use among Black women. Further, a moderate amount of these articles included trans women. Black women of low income and education had higher PrEP interest and initiation than women of higher income/education. [105, 180] However, problematic sociostructural factors included stigma, discrimination, transphobia, homophobia, racism, lack of transportation, uninsurance and cost of PrEP, and barriers of legal documents for trans women. [34, 64, 103, 108, 176, 177] Relatedly medical mistrust (often linked to histories of oppression), violence, and psychological distress negatively impacted PrEP use among Black women. [135, 147, 164] Major public health events such as the COVID-19 pandemic may have also had an impact on PrEP use though in either direction (more use and less use). [22, 123, 166,167,168, 181] Multi-level and structural policies, laws, and interventions will be imperative to address these socio-structural factors negatively impacting PrEP uptake and use among Black women. Only then may we actualize and see the full potential of PrEP in curbing the HIV epidemic’s impact on Black cisgender and transgender women.
Our systematic review of the recent research literature on Black women and PrEP provides an overview of important factors to inform ongoing research and interventions. However, there are a few limitations to note. One, our search excluded articles published prior to 2018 and as a result may miss applicable findings. Two, our search was inclusive of literature for both cisgender and transgender women, but the results for trans women were fewer and as a result important factors for trans women in regard to PrEP may not be fully captured. Third, while our search included results across the globe the literature was dominated by research conducted in the U.S. and as a result issues highlighted may emphasize issues for Black women in the U.S. more. Fourth, only articles available in English were included which thereby excludes appropriate literature unavailable in English. Lastly, only original research articles were included therefore recent findings in other form such as conference abstracts, dissertations, and book chapters were excluded.
Conclusion
PrEP as a sexual health tool will only be as powerful as its scientific effectiveness when it is known about and used by those placed at highest risk for HIV such as Black cisgender and transgender women. Our systematic review of the literature ranging between 2018 and December 2023, highlighted important factors playing a role in the uptake and utilization of PrEP among Black cisgender and transgender women. Multilevel interventions are needed that address factors impeding PrEP uptake and promote strategies/approaches to increase uptake. In addition, funding institutes need to prioritize the funding for community-based organizations and academic researchers invested in working to meet the PrEP and sexual health needs of Black women.
Data Availability
No datasets were generated during the current systematic review. Readers are encouraged to access the original/cited articles.
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Acknowledgements
Dr. Sannisha Dale and Peyton Willie were funded by R01MH121194 (PI Dale) and R01MH134269 (PI Dale) from the National Institute of Mental Health. The content of this publication is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health (NIMH).
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S.K.D., senior author, provided guidelines, oversight, and mentorship for P.W. as she carried out various tasks for this systematic review. P.W., first author, conducted the search and followed the steps for excluding and including articles based on criteria provided by S.K.D. P.W. read all included articles and summarized findings with insights from S.K.D. P.W. drafted the introduction, methods, and results section. S.K.D. wrote the discussion section and provided iterative feedback and edits on all drafted sections.
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Unrelated to data in this manuscript, Dr. Dale is a co-investigator on a Merck & Co. funded project on "A Qualitative Study to Explore Biomedical HIV Prevention Preferences, Challenges and Facilitators among Diverse At-Risk Women Living in the United States" and has served as a workgroup consultant on engaging people living with HIV for Gilead Sciences, Inc. All other authors declare that they do not have competing interests.
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Willie, P.R., Dale, S.K. Black Women’s Sexual Well-being in the Age of Pre-Exposure Prophylaxis (PrEP): a Systematic Review of the Literature. Curr Sex Health Rep 16, 138–176 (2024). https://doi.org/10.1007/s11930-024-00388-z
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DOI: https://doi.org/10.1007/s11930-024-00388-z