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. Author manuscript; available in PMC: 2025 May 1.
Published in final edited form as: AIDS Care. 2024 Jan 4;36(5):672–681. doi: 10.1080/09540121.2023.2299338

Social and Structural Factors Associated with Interest in HIV Preexposure Prophylaxis among Black Women in the United States

Whitney C Irie 1,2, Sarah K Calabrese 3,4, Kenneth H Mayer 2,5, Elvin H Geng 6, Oni Blackstock 7, Julia L Marcus 2,8
PMCID: PMC10994725  NIHMSID: NIHMS1956514  PMID: 38176016

Abstract

In a nationwide sample of cisgender Black women in the US, we assessed the associations between social and structural factors and interest in using HIV preexposure prophylaxis (PrEP). Among 315 respondents, 62.2% were interested in PrEP if it were provided for free. Positive social norms surrounding PrEP, including injunctive norms (perceived social acceptability of PrEP use) and descriptive norms (perceived commonality of PrEP use), were positively associated with interest in using PrEP. Concerns about HIV infection, recently visiting a health care provider, and comfort discussing PrEP with a provider were also positively associated with interest in using PrEP. Anticipating PrEP disapproval from others was negatively associated with interest in PrEP. Although PrEP can promote autonomy and personal discretion, Black women’s PrEP-related decisions occur in a complex social environment. Black women may benefit from interventions to promote positive norms and attitudes surrounding PrEP at the community level and empower them in discussions with their providers about PrEP.

Keywords: Black women, HIV prevention, Preexposure prophylaxis (PrEP), Social norms, Stigma, SDG 3: Good health and well-being, SDG 10: Reduced inequalities

INTRODUCTION

Antiretroviral preexposure prophylaxis (PrEP) is a safe and highly effective HIV prevention option, yet uptake among Black women in the US has been slow (Bush et al., 2016; CDC Centers for Disease Control and Prevention, 2014; Huang et al., 2018; Raifman et al., 2019; Seidman et al., 2016; Siegler et al., 2018). Women comprise 20% of newly diagnosed persons in the U.S., but only 7% of women are prescribed PrEP(Core Indicators for Monitoring the Ending the HIV Epidemic Initiative: HIV Diagnoses and Linkage to HIV Medical Care, 2019 (Preliminary Data, Reported through December 2019); Pre-Exposure Prophylaxis (PrEP)—2018, Updated, 2021). Among PrEP-using women with available race and ethnicity data, 26% are non-Hispanic Black (Huang et al., 2018), despite Black women accounting for 57% of new HIV diagnoses among women (CDC Centers for Disease Control and Prevention, 2021). Existing literature has identified several barriers to PrEP use among Black women, including misperceptions about PrEP eligibility, low perceived risk of HIV infection, medical mistrust, and stigma (Auerbach et al., 2015; Bogart et al., 2019; Calabrese et al., 2018; Flash et al., 2014; Goparaju et al., 2017; Hirschhorn et al., 2020; Koren et al., 2018; Lambert et al., 2018; Ojikutu et al., 2018). However, there is a limited understanding of the full scope of social and structural factors affecting Black women’s interest in using PrEP, including the relative impact of social norms and health care access.

The role of social norms in PrEP uptake among Black women remains understudied. Social norms are beliefs about the social environment and include perceptions of 1) what others think about a given behavior (injunctive norms) and 2) to what extent I think others are engaging in that behavior (descriptive norms; Cialdini et al., 1991; Cialdini & Goldstein, 2004). Studies with Black women have identified social norms as determinants of other forms of HIV prevention, such as HIV testing and condom use, these studies did not distinguish between the two types of subjective norms as described (Davey-Rothwell & Latkin, 2008; Paxton et al., 2013). However, most studies examining associations between social norms and PrEP among women have been conducted in predominantly White samples (Adimora & Schoenbach, 2005; Calabrese et al., 2018; Ludema et al., 2015; Willie et al., 2018; Wingood et al., 2013). One study that included both Black and White women, found Black women were more likely than White women to report intended and actual PrEP uptake if they perceived that their peers would also use PrEP (Wingood et al., 2013). Thus, social norms about PrEP may be especially influential for Black women.

Although positive social norms can facilitate PrEP uptake among women, other social and structural factors such as stigma and medical mistrust may counteract the favorable influence of social norms by discouraging PrEP use among Black women considering taking PrEP (Paxton et al., 2013). Black women experience more HIV-related medical mistrust than White women (Ojikutu et al., 2020; Teitelman et al., 2021), and this mistrust has been identified by PrEP-eligible Black women as a barrier to discussing PrEP with health care providers (Teitelman et al., 2021) and using PrEP (Auerbach et al., 2015). PrEP care is primarily delivered through traditional health care settings; therefore, it is critical to examine how medical mistrust, health care engagement, and access (e.g., provider visits, insurance, costs), are collectively associated with interest in PrEP use among Black women.

To improve PrEP uptake among Black women, we need to understand the unique social and structural context in which they make decisions about PrEP. Social norms, stigma, medical mistrust, and healthcare engagement are salient social and structural determinants of HIV prevention behaviors in Black women. Using survey data from a national sample of Black women, the present study sought to advance our understanding of PrEP engagement above and beyond individual-level factors.

Methods

We conducted a cross-sectional survey using the Qualtrics online platform (Qualtrics, Provo, UT). Respondents were recruited through the Qualtrics panel research service to obtain a non-representative, nationwide sample of adult Black women. The Qualtrics research panel consists of individuals recruited from various social media platforms who have agreed to respond to Qualtrics online surveys in exchange for compensation. Panel aggregation is increasingly recognized as an acceptable online data source for HIV research (Beymer et al., 2018) and has been successfully used for HIV and PrEP-related studies among Black Americans (Bogart et al., 2019; Ojikutu et al., 2018, 2019; Ransome et al., 2018, 2020).

Adults who met the following eligibility criteria were invited to participate: 1) self-identified as a cisgender woman, 2) self-identified as Black/African American, 3) aged 18 to 44, 4) could complete a survey in English, 5) no prior HIV diagnosis, and 6) engaged in sexual intercourse with a male partner in the 12 months prior to survey administration. Upon providing electronic informed consent, respondents were asked to complete the online survey. Surveys were self-administered and anonymous, and the average time to survey completion was 17 minutes. IP addresses were not collected and cookies were not used, thereby protecting the respondent’s privacy and preventing further data collection mechanisms. Respondents who completed the survey received a $16 online gift card. Only completed surveys were included in the final study sample. The Institutional Review Board at Washington University in St. Louis approved this study.

Survey Development and Distribution

Before finalizing and administering the survey, we sought input from an established community advisory board comprising adult Black women who resided in St. Louis, Missouri. We requested open-ended feedback on the survey, including question comprehension, cultural applicability, and potential response bias due to sensitive questions, and then modified the survey content and format accordingly. The survey was distributed during April and May 2019.

Measures

The survey included self-reported sociodemographic information, including age, relationship status, education level, household income, and employment status. Sexual history was assessed by asking respondents about the number of sexual partners and frequency of condom use in the past 6 months; if they had ever exchanged sex for money, drugs, housing, or any other commodity; if they had received an HIV test in the last 12 months; and if they had ever been treated for a sexually transmitted infection (STI) in their lifetime [yes/no for all]. A single item assessed worry about acquiring HIV infection: “Do you ever worry that you could get HIV?” [yes/no].

PrEP stigma was assessed using the PrEP anticipated stigma scale, which has been validated with HIV-negative, PrEP-inexperienced, heterosexually active women.(Calabrese et al., 2018) The scale includes two subscales: PrEP-user stereotypes subscale (5 items), which measures perceived cultural associations with PrEP (e.g. “People would assume I slept around if they knew I took PrEP”), and the PrEP disapproval by others subscale (3 items), which measures expected judgments from others for using PrEP (e.g. “My sexual partner(s) would approve of me taking PrEP”). Participants responded using 4-point scales ranging from strongly disagree to strongly agree. Items were reverse-coded as needed so that higher values indicated higher stigma. We treated them as separate subscales to measure two distinct dimensions of stigma for this study, PrEP disapproval (Cronbach’s alpha = 0.85) and PrEP stereotypes (Cronbach’s alpha = 0.81).

PrEP subjective norms were assessed via two subscales: PrEP descriptive norms (2 items), which measures perception of the behaviors of others (e.g. “If made aware of PrEP for HIV prevention… most people who are important to me would use PrEP”), and PrEP injunctive norms (2 items), which measures the perception of what others think one should do or value, (e.g. “If made aware of PrEP for HIV prevention… most people who are important to me will think PrEP is important”). These subscales were adapted from the AIDS preventative behavior subjective norms scales to focus specifically on PrEP.(Fisher & Fisher, 1995) Participants responded using 4-point scales ranging from strongly disagree to strongly agree. We treated them as separate subscales to measure two distinct dimensions of subjective norms for this study, PrEP descriptive norms (Cronbach’s alpha = 0.85) and PrEP injunctive norms (Cronbach’s alpha = 0.77).

Health care engagement was assessed by asking respondents if they had health insurance if they visited a doctor/health care provider in the past 12 months, and if they did not receive health care in the past 12 months due to cost. Medical mistrust was assessed using the group-based medical mistrust scale, a 12-item scale that measures one’s mistrust in medical services provided by health care systems and health care providers based on one’s racial or ethnic group (e.g., “People of my racial group cannot trust doctors and health care workers”). Participants responded using 5-point scales ranging from strongly disagree to strongly agree. Items were reverse-coded as needed so that higher values indicated higher levels of medical mistrust. Internal consistency in the current study was high (Cronbach’s alpha = 0.86).

The survey provided education about PrEP, including a brief statement defining PrEP and an infographic describing the FDA approval and efficacy of oral PrEP. Studies have shown that the perceived cost of PrEP is a determinant of Black women’s willingness to use PrEP; to learn from Black women about their interest in PrEP if cost were not a barrier, we assessed interest in PrEP by asking, “If provided for free, would you be interested in taking PrEP for HIV prevention?” [yes/no]. In addition, we asked women, “Would you feel comfortable discussing PrEP with your health care provider/doctor?” [yes/no].

Statistical Analyses

We used descriptive statistics to describe sample characteristics. We conducted independent-sample t-tests to evaluate differences in the mean scores of the included scales between Black women who were interested in PrEP and those not interested in PrEP. To identify factors associated with interest in PrEP, we used modified Poisson regression models with robust variance to estimate adjusted prevalence ratios (PR) and 95% confidence intervals. We evaluated multiple models based on theory, specifically the modified socioecological model delineating the distal and proximal influence of factors at the individual, social, and structural levels on HIV-related behaviors or outcomes. The theory-driven nature of the framework distinguishes it from stepwise regression, which involves the automated entry of covariates to assess the best model fit. In the first model, we included individual-level factors, specifically demographic variables, and measures of individual HIV risk, including perceived risk (worry about HIV) and sexual behaviors (inconsistent condom use and multiple sexual partners). The second model additionally included social factors, specifically PrEP stigma, and subjective norms subscales. The third model additionally included structural factors, specifically health care-related variables (insurance status, provider visits, comfort discussing PrEP with provider) and the group-based medical mistrust scale. In each model, PRs were adjusted for all other covariates in the model. In addition, Pearson correlations were conducted for study variables (see supplementary materials). Statistical significance was defined as p<.05. Analyses were conducted using SPSS version 27.

RESULTS

The study invitation was received by 1,249 Black women who met the eligibility criteria. Of the initial 523 respondents, 23.7% did not complete the survey (n = 124) and 16.1% (n = 84) were excluded because they did not provide valid data on key variables, leaving a final sample of 315 Black women. There were no significant sociodemographic differences between those who did not complete the survey and those who completed the survey (data not shown).

Descriptive characteristics are presented in Table 1. The mean age was 29 years (range, 22–36 years). The geographic distribution of respondents was similar to the distribution of Black Americans across the US; most respondents (55.2%) resided in the South at the time of survey administration. Most respondents had at least some college education (50.5%), were employed (78.1%), and had health insurance (88.6%), and 34.6% had an annual household income of $40,000 or higher. In the past 12 months, 88.3% had visited a health care provider and 26.3% did not receive health care because of concerns about cost. More than half of respondents (52.7%) were in a relationship. In the past 6 months, most (66.7%) reported inconsistent or no condom use, 22.2% had 2 or more sexual partners, and 12.4% reported both inconsistent or no condom use and multiple sexual partnerships. Overall, more than half of respondents (57.8%) reported being worried about acquiring HIV infection; of those who reported both inconsistent or no condom use and multiple sexual partners in the past 6 months, 15.4% reported being worried about acquiring HIV infection.

Table 1.

Characteristics of respondents. (N=315)

Age, M (SD) 29.1 (7.46)
Age groups, n (%)
Younger than 30 years 174 (55.2)
Relationship status, n (%)
Single 149 (47.3)
Education, n (%)
Less than high school degree 6 (1.9)
High school/GED 150 (47.6)
Technical/associate degree 70 (22.2)
Bachelor’s degree or higher 89 (28.3)
Employment, n (%)
Unemployed 69 (21.9)
Student 31 (9.8)
Part-time employment 68 (21.6)
Full-time employment 147 (46.7)
Household income, USD, n (%)
Less than 20,000 104 (33.0)
20,000–40,000 102 (32.4)
40,001–60,000 74 (23.5)
60,001–80,000 35 (11.1)
Geographic region, n (%)
Midwest 72 (22.8)
Northeast 42 (13.3)
South 174 (55.2)
West 27 (8.7)
Health insurance status, n (%)
Uninsured 36 (11.4)
Private health plan 112 (35.6)
Medicaid 122 (38.7)
Other government plan 35 (11.1)
Other 10 (3.2)
Visited a health care provider, past 12 months, n (%) 278 (88.3)
Did not receive healthcare due to cost, past 12 months, n (%) 83 (26.3)
Inconsistent or no condom use and multiple partners, past 6 months, n (%) 39 (12.4)
Worry about HIV infection, n (%) 182 (57.8)
Would use PrEP if provided for free, n (%) 196 (62.2)
Comfortable speaking to healthcare provider about PrEP, n (%) 249 (79.0)
Medical mistrust scale score, M (SD) 37.30 (9.70)
PrEP subjective norms score, M (SD) 11.42 (3.00)
PrEP injunctive norms score, M (SD) 5.98 (1.60)
PrEP descriptive norms score, M (SD) 5.53 (1.66)
PrEP disapproval by others subscale score, M (SD) 6.40 (2.33)
PrEP-user stereotypes subscale score, M (SD) 10.9 (3.66)
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PrEP, preexposure prophylaxis; HIV, human immunodeficiency virus; STI, sexually transmitted infection. Group medical mistrust scale scores range from 12 to 60, with higher scores indicating greater medical mistrust. PrEP subjective norms scale scores range from 4 to 16, with higher scores indicating more favorable norms. PrEP injunctive and descriptive norms subscale scores range from 2–8, with higher scores indicating more favorable norms. PrEP disapproval by others subscale scores range from 3 to 12, with higher scores indicating greater anticipated disapproval. PrEP-user stereotypes subscale scores range from 5 to 20, with higher scores indicating greater anticipated stereotyping.

Most respondents (67.9%) were unaware of PrEP prior to the survey. When made aware of oral PrEP, almost two-thirds (62.2%) were interested in using PrEP if it were provided for free. Most respondents (79.0%) felt comfortable speaking with their health care provider about PrEP, and most felt their friends (76.5%), family (74.3%), and sexual partners (67.9%) would approve of their using PrEP. A significant minority of respondents anticipated feeling ashamed to tell other people that they were taking PrEP (38.4%) or believing that if other people knew they took PrEP, those people would assume that they slept around (48.2%), were HIV-positive (42.5%), were a bad person (24.5%), or were gay (23.5%).

Mean differences between respondents who were and were not interested in using PrEP on continuous measures are shown in Table 2. Compared with Black women not interested in using PrEP, those who were interested in using PrEP perceived more favorable injunctive norms and descriptive norms related to PrEP. Black women interested in using PrEP had lower anticipated PrEP disapproval by others compared with Black women not interested in PrEP. There were no significant differences in medical mistrust or PrEP user stereotypes between Black women interested and not interested in using PrEP.

Table 2.

Comparison of medical mistrust, PrEP-related subjective norms, PrEP disapproval, and PrEP user stereotypes between Black women interested in taking PrEP and those not interested in taking PrEP (N=315)

Interested in PrEP (N=196) Not interested in PrEP (N=119) P
Individual scale items, M (SD)
Group-based medical mistrust scale, 37.30 (9.70) 36.87 (10.06) 38.04 (9.23) 0.303
Injunctive norms subscale score, 5.89 (1.60) 6.47 (1.25) 4.92 (1.64) <.001
Descriptive norms subscale score, 5.53 (1.66) 6.16 (1.29) 4.50 (1.68) <.001
PrEP disapproval by others subscale score, 6.40 (2.33) 5.58 (1.86) 7.75 (2.40) <.001
PrEP-user stereotypes subscale score, 10.90 (3.66) 10.92 (3.66) 11.02 (3.68) 0.827
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PrEP, preexposure prophylaxis; HIV, human immunodeficiency virus. Group-based medical mistrust scale scores range from 12 to 60, with higher scores indicating greater medical mistrust. PrEP subjective norms scale scores range from 4 to 16, with higher scores indicating more favorable norms. PrEP injunctive and descriptive norms subscale scores range from 2–8, with higher scores indicating more favorable norms. PrEP disapproval by others subscale scores range from 3 to 12, with higher scores indicating greater anticipated disapproval. PrEP-user stereotypes subscale scores range from 5 to 20, with higher scores indicating greater anticipated stereotyping. P-values were obtained from independent samples t-tests.

Table 3 displays the results of the three multivariable regression models of the relationships between individual, social, and structural factors, and interest in using PrEP. In the first model, which included only individual-level factors, being employed (PR=1.12; 95% CI: 1.03–1.23; p=0.010) and worry about HIV infection (PR=1.10; 95% CI: 1.03–1.18; p=0.006) were significantly associated with interest in using PrEP. In this first model, age, relationship status, and sexual behavior were not significantly associated with interest in using PrEP.

Table 3.

Associations between individual-level, social, and structural factors and interest in PrEP among Black women (N=315)

Model 1: Individual-level Factors: Sociodemographic Characteristics and Sexual Behaviors Adjusted PR 95% CI P
Lower Upper
Age >=30 years (ref= <30 years) 1.05 0.98 1.12 0.167
Employed (ref= Not employed) 1.12 1.03 1.23 0.010
Annual income $40,000+ (ref= < $40,000) 1.03 0.96 1.10 0.491
In a relationship (ref= Not in a relationship) 0.96 0.90 1.03 0.274
Ever worry about HIV (ref= Never worry about HIV) 1.10 1.03 1.18 0.006
Inconsistent or no condom use and multiple partners, past 6 months (ref= Consistent condom use or 0–1 partners) 1.03 0.94 1.13 0.503
Model 2: Add Social Factors: Stigma and Norms Adjusted PR 95% CI P
Lower Upper
Age >=30 years (ref= <30 years) 1.01 0.96 1.07 0.717
Employed (ref= Not employed) 1.07 1.00 1.15 0.061
Annual income $40,000+ (ref= < $40,000) 1.06 1.00 1.13 0.043
In a relationship (ref= Not in a relationship) 0.97 0.91 1.02 0.248
Ever worry about HIV (ref= Never worry about HIV) 1.07 1.00 1.14 0.037
Inconsistent or no condom use and multiple partners, past 6 months (ref= Consistent condom use or 0–1 partners) 1.00 0.92 1.08 0.899
PrEP disapproval by others subscale 0.97 0.96 0.99 0.002
PrEP user stereotypes subscale 1.01 1.00 1.02 0.128
PrEP injunctive norms subscale 1.05 1.02 1.08 <.001
PrEP descriptive norms subscale 1.04 1.01 1.07 0.010
Model 3: Add Structural Factors: Healthcare Access/Engagement Adjusted PR 95% CI P
Lower Upper
Age >=30 years (ref= <30 years) 0.99 0.94 1.05 0.839
Employed (ref= Not employed) 1.06 0.98 1.13 0.130
Annual income $40,000+ (ref= < $40,000) 1.07 1.01 1.13 0.035
In a relationship (ref= Not in a relationship) 0.96 0.91 1.01 0.131
Ever worry about HIV (ref: Never worry about HIV) 1.07 1.01 1.14 0.019
Inconsistent or no condom use and multiple partners, past 6 months (ref= Consistent condom use or 0–1 partners) 1.01 0.93 1.09 0.842
PrEP disapproval by others subscale 0.98 0.96 0.99 0.006
PrEP user stereotypes subscale 1.01 1.00 1.02 0.053
PrEP injunctive norms subscale 1.04 1.01 1.06 0.011
PrEP descriptive norms subscale 1.04 1.01 1.07 0.004
Insured (ref= Uninsured) 0.90 0.83 0.98 0.012
Visited a healthcare provider in the past 12 months (ref= No visits) 1.11 1.00 1.22 0.041
Did not receive healthcare due to cost in past 12 months
(ref= No cost barrier)		 1.04 0.98 1.11 0.173
Comfortable discussing PrEP with provider (ref= Not comfortable) 1.19 1.09 1.30 <.001
Group based medical mistrust scale 1.00 1.00 1.00 0.801
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PrEP, preexposure prophylaxis; HIV, human immunodeficiency virus; STI, sexually transmitted infection; PR, prevalence ratio; CI, confidence interval. PRs were obtained from Poisson regression models with robust variance, with adjustment for all other covariates included in a given model.

In the second model, which incorporated social factors (norms and stigma) in addition to individual-level factors, having an annual income greater than $40,000 (PR=1.06; 95% CI: 1.00–1.13; p=0.043), worry about HIV (PR=1.07; 95% CI: 1.00–1.14; p=0.037), and both PrEP injunctive norms (PR=1.05; 95% CI: 1.02–1.08; p<.001) and descriptive norms (PR=1.04; 95% CI: 1.01–1.07; p=0.010) were positively associated with interest in using PrEP. Anticipated PrEP disapproval by others was negatively associated with interest in using PrEP (PR=0.97, 95% CI: 0.96–0.99; p=0.002). There remained no association between age, relationship status, or sexual behavior with interest in using PrEP, and the association with employment was no longer statistically significant. PrEP user stereotypes, which was newly added to the model, was not associated with interest in using PrEP.

In the third model, which additionally incorporated health care access and engagement factors and the medical mistrust scale, having an annual income greater than $40,000, worry about HIV, and both PrEP injunctive norms and descriptive norms remained positively associated with interest in using PrEP, while anticipated PrEP disapproval by others remained negatively associated with interest in using PrEP. Visiting a health care provider in the past 12 months (PR=1.11; 95% CI: 1.00–1.22; p=0.041) and comfort discussing PrEP with health care providers (PR=1.19; 95% CI: 1.09–1.30; p<.001) were positively associated with interest in using PrEP, while having health insurance (PR=0.90; 95% CI: 0.83–0.98; p=0.012) was negatively associated with interest in using PrEP. There remained no association between age, employment, relationship status, or sexual behavior and interest in using PrEP, and the newly added variables of not receiving health care due to costs and medical mistrust were also not associated with interest in using PrEP.

DISCUSSION

Black women are disproportionately impacted by HIV compared with other groups of women in the US. In our national sample of adult Black women, 47.3% had multiple sexual partners, and 12.4% had both multiple sex partners and inconsistent condom use, indicating an increased risk of HIV infection. What was particularly concerning about our sample was that the majority of Black women were not previously aware of PrEP. Once made aware, we identified several factors, including not only individual-level factors but also multiple social and structural factors, that were associated with Black women’s interest in using PrEP. Worrying about HIV infection, being employed, having a higher income, endorsing positive social norms around PrEP, engaging in health care, and being comfortable discussing PrEP with providers were positively associated with interest in using PrEP, while anticipating PrEP disapproval by others and being insured were negatively associated with interest in using PrEP. Our findings speak to the relevance of social and structural factors to PrEP engagement among Black women and suggest a need for multilevel interventions to facilitate PrEP uptake among Black women in the US.

We found that perceived positive social norms related to PrEP were associated with interest in using PrEP after adjusting for individual-level factors, suggesting that Black women’s individual-level decisions about PrEP use are influenced by social and cultural context. Our findings corroborate other studies linking social norms to PrEP use. To our knowledge, our study is the first to focus exclusively on Black women and concurrently examine individual, social, and structural factors. Given the potential influence of social norms on PrEP use for Black women, interventionists and public health professionals must ensure that PrEP programs and messages are responsive to the social dynamics and landscape that Black women navigate in their decisions to use PrEP or engage in other HIV prevention behaviors.

We found that anticipated PrEP disapproval by others was negatively associated with interest in using PrEP among Black women, highlighting the importance of stigma-reduction strategies for not only Black women but also their broader communities. Our finding is consistent with a study among PrEP-eligible women attending Planned Parenthood, which found that anticipated disapproval by others was associated with reduced interest in learning about PrEP and lower intention to use PrEP (Calabrese et al., 2018). In addition, Teitelman et al. found that anticipated HIV stigma was a barrier to not only potential PrEP use but also HIV testing among PrEP-eligible cisgender women (2021). PrEP-related stigma may also influence Black women’s preferences about PrEP products; we previously found that Black women in our sample who anticipated PrEP stigma were more likely to be interested in injectable than oral PrEP (Irie et al., 2022). In addition, we have found that PrEP disapproval and stigma resulted in lower odds of Black women’s confidence in their ability to engage sexual partners about PrEP as well as lower odds of being comfortable speaking with their healthcare provider about PrEP (Irie et al., 2023a; Irie et al., 2023b). Taken together, these findings suggest that PrEP-related stigma must be considered when developing interventions to facilitate PrEP uptake among Black women, such as awareness campaigns, community-level PrEP interventions, and PrEP education and decision support tools for providers. HIV- and PrEP-related stigma are interrelated and are both socially and culturally produced and perpetuated. Therefore, addressing HIV- and PrEP-related stigma requires ongoing, adaptable, relevant, and culturally sensitive education and awareness efforts that are implemented at the community level. These efforts have the potential to remold social acceptance, knowledge, and norms surrounding PrEP and HIV in Black women’s communities.

In our sample, there were no associations between sexual behavior and interest in PrEP. This finding is particularly salient because it suggests there are Black women who have indications for PrEP but are unaware of their increased risk of HIV infection. Coupled with this observation, the majority of Black women had not heard about PrEP, indicating an ongoing need for expanded, culturally tailored PrEP education focused on Black women. Furthermore, worry about HIV infection was positively associated with interest in using PrEP independent of sexual behaviors, suggesting that awareness of HIV risk may be a motivating factor for PrEP uptake and needs to be supported through educational interventions among Black women. Our finding is consistent with recent studies that have shown that greater perceived HIV risk is associated with interest in PrEP among women (Park et al., 2019; Sales & Sheth, 2019; Sewell et al., 2020). Nevertheless, it is important to acknowledge that self-perception of HIV risk is often inaccurate (Maughan-Brown & Venkataramani, 2017) and not a reliable determinant of HIV prevention behaviors among Black women (Kowalewski et al., 1997). Therefore, many women who are at significant risk for HIV may not perceive themselves to be so, and risk-focused messaging would be unlikely to resonate with them. Empowering and educating Black women to engage in sexual health promotion and protective behaviors for reasons beyond worry about risk of HIV infection may encourage greater PrEP uptake, including among women who underestimate their HIV risk (Positive Action for Women with HIV). A collective of Black women, in collaboration with consumers, health care providers, and a PrEP manufacturer, has promoted an initiative to shift the framing of HIV prevention for Black women from “risk for HIV infection” to “reasons for HIV prevention”(Positive Action for Women with HIV). This strategy endorses a strengths-based model of care and engagement that moves beyond risk assessments and worry to self-affirming and self-driven acts of self-care to increase self-efficacy and comfort with sexual health. This reframing and program development has the potential to reduce stigma, promote positive norms around sexual health, and increase the quantity and quality of HIV prevention interventions and implementation strategies for diverse groups of Black women throughout the US.

We found that engagement in health care in the past 12 months was positively associated with interest in using PrEP among Black women, independent of individual-level and social factors. Black women who are engaged in health care may have greater access to care, which is a determinant of PrEP initiation and persistence (Sewell, Powell, et al., 2021), and may feel more comfortable exploring and initiating prevention strategies such as PrEP. In addition to access to health care, having a positive relationship and rapport with providers is an established determinant of PrEP initiation (Sewell, Powell, et al., 2021). While our study did not demonstrate an association between medical mistrust and interest in PrEP, we found that comfort in discussing PrEP with a health care provider was associated with interest in using PrEP. This finding highlights the importance of providers starting conversations about PrEP and utilizing patient-centered decision-making strategies to support Black women in making the PrEP-related decisions that are best for their current HIV prevention needs (Sewell, Solleveld, et al., 2021). To that end, there is a need for interventions to increase patient- and provider-initiated PrEP discussions in diverse health care settings, including family planning clinics, public health clinics, and community health centers. For example, Calabrese et al. evaluated a web-based PrEP intervention for US women and found that it increased women’s contemplation of PrEP and comfort discussing PrEP with their family planning provider (Calabrese et al., 2021), and clinical decision support tools are being evaluated as a strategy to promote PrEP discussions and prescribing in safety-net clinics (Humphries et al., Accepted; Marcus, Julia L., n.d.). There remains a need for additional patient and provider interaction research and interventions that are tailored to Black women. In addition, there is a need for interventions to generate PrEP awareness and interest among Black women who are not currently engaged in health care or are less comfortable discussing PrEP or sexual health with providers, such as PrEP services delivered in community-based settings, PrEP information disseminated by trusted community members, and peer outreach specialists/navigators.

Our finding of greater PrEP interest among those who were uninsured (vs. insured) should be interpreted in the context of our inquiry about interest in taking PrEP “if available for free.” Previous research has demonstrated that insured individuals are more likely to use PrEP services compared with those who are uninsured (Patel et al., 2017). It is possible that eliminating cost and insurance coverage as potential barriers prompted consideration of PrEP among uninsured participants who would otherwise have assumed it to be financially out of reach. It is also possible that insured participants recognized potential cost-related barriers to PrEP use because of the nuances of underinsurance (Kay & Pinto, 2020). However, neither explanation accounts for the greater (rather than similar) interest level expressed by uninsured (vs. insured) participants or higher (vs. lower) income participants. Nevertheless, future research and policy efforts need to address cost-related barriers to PrEP use among both uninsured and insured Black women.

Our findings are limited by the validity and potential bias of self-reported data, which we minimized through anonymous survey administration and limiting the collection of identifying information. Our study used a cross-sectional design, and we were therefore unable to infer causality. Interest in PrEP may not necessarily translate into actual PrEP use; however, interest in PrEP remains an indicator of attitudes towards potential PrEP use in the future. In our study, we asked Black women if they would use PrEP if available for free; while there are assistance programs to mitigate out-of-pocket costs for users, there may be remaining costs (actual or perceived) associated with PrEP care that could be a critical barrier for Black women. Finally, our sample was recruited using convenience sampling and is limited in its generalizability to the broader population of Black women in the US.

Conclusion

This study contributes to a growing body of literature in its examination of social and structural factors associated with interest in PrEP use among Black women in the US. Our findings indicate that a multi-level approach to PrEP implementation for Black women in the US would be responsive to the realities Black women navigate in their decisions to engage in PrEP and other HIV prevention behaviors. As HIV disparities continue to persist and disproportionately impact Black women, we must implement evidence-based interventions that center the lived and desired experiences of Black women and reduce the constraints of social determinants such as stigma, norms, and health care inequity. Tailored interventions must utilize a strengths-based approach that both acknowledges Black women’s ability to make decisions that are best for their HIV prevention needs and considers the oppressive social and structural factors that may complicate those decisions.

Supplementary Material

Supp 1

Funding:

This publication was made possible by Grant Number T32 AI007433 to Whitney Irie at Harvard University from the National Institute of Allergy and Infectious Diseases. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the NIH.

Footnotes

Conflicts of interest: No potential conflict of interest was reported by the author(s).

Ethics approval: All procedures performed in this study were in accordance with the ethical standards of the Institutional Review Board at Washington University in St. Louis. (IRB201902109) and with the 1964 Helsinki declaration and its later amendments.

Consent to participate: Informed consent was obtained from all individual participants included in the study.

Consent for publication: Not applicable

Code availability: Not applicable

Availability of data and material:

The data that support the findings of this study are available from the corresponding author, Whitney Irie, upon request.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

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NIHMS1956514-supplement-Supp_1.docx (19.2KB, docx)

Data Availability Statement

The data that support the findings of this study are available from the corresponding author, Whitney Irie, upon request.

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