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PREP STIGMA AS A BARRIER TO UPTAKE - Women - Planned Parenthood Study
 
 
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"PrEP is a promising prevention tool that offers immense benefit to women and others at risk for HIV. However, it is only as promising as it is accessible. Addressing PrEP stigma and other psychosocial hurdles is essential to enabling such access in the years to come."
 
HIV Pre-Exposure Prophylaxis Stigma as a Multidimensional Barrier to Uptake Among Women Who Attend Planned Parenthood
 
JAIDS May 22 2018 - Calabrese, Sarah K., PhD*,1,2,3; Dovidio, John F., PhD2,3,4; Tekeste, Mehrit, BA1; Taggart, Tamara, PhD2,3; Galvao, Rachel W., BA2; Safon, Cara B., MPH2; Willie, Tiara C., MA2,3; Caldwell, Abigail, MSN/APRN5; Kaplan, Clair, MSN/APRN; MHS5; Kershaw, Trace S., PhD2,3
 
Background: PrEP uptake has lagged among US women. PrEP stigma is a recognized barrier to uptake among MSM but remains largely unexplored among women. This study examined the pervasiveness of PrEP stigma among US women and its implications for uptake.
 
Setting/Methods: In a 2017 online survey of Planned Parenthood patients drawn from the three cities with the highest numbers of new HIV infections in Connecticut, 597 heterosexually-active, HIV-negative, PrEP-inexperienced womenreported background characteristics, two dimensions of anticipated PrEP stigma (PrEP-user stereotypes and PrEP disapproval by others), and three indicators of potential PrEP uptake (interest in learning more about PrEP, intention to use PrEP, and comfort discussing PrEP with a provider).
 
Results:
 
Participants commonly perceived PrEP-user stereotypes, with many believing that others would regard them as promiscuous (37%), HIV-positive (32%), bad (14%), or gay (11%) if they used PrEP. Thirty percent would feel ashamed to disclose PrEP use.

 
Many participants expected disapproval by family (36%), sex partners (34%), and friends (25%).
 
In adjusted analyses, perception of PrEP-user stereotypes was uniquely associated with lower comfort discussing PrEP with a provider. Expected PrEP disapproval by others was uniquely associated with less PrEP interest, less intention to use PrEP, and less comfort discussing PrEP with a provider. Exploratory moderation analyses suggested intention to use PrEP was greatest when participants anticipated low levels of both PrEP-user stereotypes and PrEP disapproval by others.
 
Most participants (66%) expressed some level of interest in learning more about PrEP, 32% "probably" or "definitely" would take PrEP if freely available, and 57% were very" or "extremely" comfortable talking to a provider about PrEP.
 
Specifically, stronger perceived PrEP-user stereotypes were reported among participants who used condoms 0% vs. 100% of the time (p = .028).
 
Conclusion: Findings highlight the need for positive messaging targeting potential PrEP users and their social networks to increase PrEP acceptance and uptake.
 
Both PrEP stigma subscales were uniquely associated with comfort discussing PrEP with a provider and accounted for the most variance in this PrEP uptake indicator of all three, suggesting that PrEP messaging could be particularly influential in healthcare settings. Such messaging includes information explicitly communicated by providers as well as indirect messages conveyed, for example, through educational pamphlets and closed-circuit videos presented in waiting areas.
 
PrEP messaging by providers can be cultivated through direct medical training.
 
Patient education about PrEP should be embedded in more comprehensive conversations about HIV prevention and sexual health.
 
The majority (90%) of study participants reported using condoms inconsistently if at all.....However, considerably fewer (21%) perceived any risk of acquiring HIV in their lifetime, indicating potential underestimation of HIV risk.
 
Our sample included women who accessed medical services at Connecticut Planned Parenthood centers, where PrEP is available to patients. It is not representative of all US women, and findings should not be assumed to generalize to women who are not engaged in care or who receive care in settings where PrEP availability is constrained

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INTRODUCTION
 
HIV pre-exposure prophylaxis (PrEP) uptake has lagged among US women: Although about 200,000 are considered strong candidates for PrEP based on their sexual and/or injection practices [1], retail pharmacy records indicate that fewer than 50,000 have initiated PrEP [2,3]. This gap between PrEP candidacy and PrEP uptake is particularly extreme among women of color: Black and Latina women are respectively Black and Latina women are respectively 17 and 4 times more likely than White women to become HIV infected in their lifetime [4] but significantly less likely to initiate PrEP [1,5]. Addressing low PrEP uptake among women requires understanding and overcoming the psychosocial barriers to PrEP access that they experience.
 
PrEP stigma is one such barrier that has received increasing attention among men who have sex with men (MSM) [6-15] but remains understudied among women.
 
PrEP stigma is a social harm involving the association of negative meaning with PrEP and corresponding devaluation of PrEP users [16]. As described by MSM, PrEP users are commonly stereotyped as promiscuous and/or secretly HIV-positive (concealing their HIV medication as PrEP) [6-9,12,15]. PrEP stigma has consistently been linked to reduced PrEP interest and uptake among MSM [7-10, 14].
 
Less is known about the scope and impact of PrEP stigma among women. In one community sample, nearly half of women endorsed the belief that PrEP users probably engage in "too much sex" or "sex with the wrong kind of people" [17]. Additionally, early qualitative research suggests that women's concern about other people reacting negatively or making assumptions about their HIV status [18-22] operates as a barrier to PrEP use. Further research is needed to better understand the nature and implications of PrEP stigma among women, including both cultural stereotypes associated with people who use PrEP (e.g., promiscuity) and anticipated reactions to PrEP use (e.g., partner disapproval).
 
PrEP stigma is a particularly relevant issue for women already engaged in healthcare because, in the absence of challenges surrounding healthcare access, it may operate as one of few significant barriers to PrEP uptake. Women who are already engaged in healthcare can be readily contacted about PrEP services, have experience navigating the medical system (e.g., scheduling appointments, acquiring prescriptions), and may have experience using preventive medications such as contraception- particularly those receiving care in reproductive health settings such as Planned Parenthood. Planned Parenthood is an international nonprofit organization with nearly 650 sexual and reproductive healthcare centers across the US, which annually serve over two million women [23]. Many Planned Parenthood patients are members of sociodemographic groups disproportionately affected by HIV [23, 24]. Women have reported Planned Parenthood to be among the most trusted places to obtain PrEP services [21].
 
The present cross-sectional survey study explored PrEP stigma and its implications for uptake among HIV-negative, sexually active adult women recently engaged in care at Connecticut Planned Parenthood centers. We approached the study with two aims: First, we sought to describe the pervasiveness of PrEP stigma- including perceived PrEP-user stereotypes and expected disapproval of PrEP use by others. Second, we sought to examine how these dimensions of stigma affected three indicators of potential PrEP uptake: women's interest in learning more about PrEP, intention to use PrEP, and comfort discussing PrEP with a provider. Theoretical "cascade" models characterizing the stepwise progression from initial PrEP awareness to sustained PrEP use have indicated PrEP interest, intention, and discussion with a provider are key precursors to PrEP use [25, 26]. We hypothesized that participants expressing stronger perceived PrEP-user stereotypes and greater expected PrEP disapproval by others would report less interest in learning about PrEP, less intention to use PrEP, and less comfort discussing PrEP with a provider.
 
RESULTS
 
Descriptive Characteristics

 
The survey recruitment email was distributed to 11,238 Planned Parenthood patients. The survey was closed to new participants when 973 had enrolled and initiated the survey. The survey was closed prior to reaching our enrollment maximum of 1,000 participants to avoid exceeding this maximum. (Additional patients had initiated the preliminary screening portion of the survey and we were uncertain whether they would proceed to enrollment). All data were collected within 100 hours of distributing the recruitment email. A total of 597 patients met criteria for the present analyses. Sociodemographic characteristics of the sample are reported in Table 1.Twenty-nine percent of participants, all of whom were sexually active, reported sex with multiple male partners in the past 6 months. Ninety percent reported "never" or "sometimes" (vs. "always") using condoms. Over half (59%) reported being in a monogamous relationship with a recently-tested HIV-negative partner, and 21% perceived themselves to be at any level of risk for acquiring HIV in their lifetime. Less than a quarter (23%) had heard of PrEP before the survey.
 
Figure 1 displays frequency distributions of PrEP stigma items. Stereotypes about PrEP users were perceived by a substantial minority of participants, with the most commonly endorsed belief being that people would assume they slept around (37% "agreed" or "strongly agreed"). Many participants expected disapproval by their family (36% "disagreed" or "strongly disagreed" that their family would approve), as well as from their sexual partner(s) (34%) and friends (25%).
 
Most participants (66%) expressed some level of interest in learning more about PrEP, 32% "probably" or "definitely" would take PrEP if freely available, and 57% were very" or "extremely" comfortable talking to a provider about PrEP.
 
Associations Between Background Characteristics and PrEP Measures
 
Only a single background characteristic-condom use consistency-was associated with either PrEP stigma subscale score. Specifically, stronger perceived PrEP-user stereotypes were reported among participants who used condoms 0% vs. 100% of the time (p = .028).
 
Multiple bivariate associations between background characteristics and PrEP uptake indicators were identified. Greater interest in learning about PrEP was associated with having less than a bachelor's degree, having multiple sexual partners, not being in a monogamous relationship with a recently-tested HIV-negative partner, perceiving HIV risk, being Black or another race (vs. White), and having an annual household income less than $10,000 (vs. over $70,000). Greater intention to use PrEP was associated with younger age, having less than a bachelor's degree, having multiple sexual partners, not being in a monogamous relationship with a recently-tested HIV-negative partner, perceiving HIV risk, being another race (vs. White), and having an annual household income less than $50,000 (vs. over $70,000). Greater comfort discussing PrEP with a provider was associated with being non-Latina and being nonheterosexual (p < .050).
 
Associations Between PrEP Stigma and PrEP Uptake Indicators
 
As shown in Table 2, stronger perception of PrEP-user stereotypes was correlated with less PrEP interest and less comfort discussing PrEP with a provider (p < .050) and marginally correlated with less intention to use PrEP (p = .052). Greater expected PrEP disapproval by others was correlated with less PrEP interest, less PrEP intention, and less comfort discussing PrEP with a provider (p < .050).
 
Table 3 presents partial, conditional, and interaction effects of PrEP-user stereotypes and PrEP disapproval by others on the three outcomes. With respect to our first outcome, interest in learning more about PrEP, the two PrEP stigma sub scales added in Model 2 accounted for an additional 3% of the variance beyond the 10% captured by background characteristics in Model 1. Greater expected PrEP disapproval by others was uniquely associated with less PrEP interest. In Model 3, no interaction effect was detected.
 
With respect to our second outcome, intention to use PrEP, the two PrEP stigma subscales added in Model 2 accounted for an additional 3% of the variance beyond the 7% captured by background characteristics in Model 1. Greater expected PrEP disapproval by others was uniquely associated with less intention to use PrEP. In Model 3, a significant interaction was detected (p = .029; see Figure 2). Probing the interaction, we found that perception of PrEP-user stereotypes was not associated with intention to use PrEP among participants who expected moderate or higher levels of PrEP disapproval by others (≥1.97 mean score on 1-4 response scale; reported by 79% of the sample); however, among participants who reported lower levels of perceived PrEP disapproval by others (i.e., reported perceiving higher levels of PrEP approval by others), stronger perception of PrEP-user stereotypes was associated with less intention to use PrEP. Intention to use PrEP was greatest when participants anticipated low levels of both PrEP-user stereotypes and PrEP disapproval by others.
 
With respect to our third outcome, comfort discussing PrEP with a provider, the two PrEP stigma subscales added in Model 2 accounted for an additional 11% of the variance beyond the 2% captured by background characteristics in Model 1. Stronger perception of PrEP-user stereotypes and greater expected PrEP disapproval by others were both uniquely associated with less comfort discussing PrEP with a provider. In Model 3, no interaction effect was detected.
 
DISCUSSION
 
Our results demonstrate that perceived PrEP-user stereotypes and expected PrEP disapproval by others could deter women's PrEP uptake. When considered concurrently, the two dimensions of PrEP stigma were additively associated with less comfort discussing PrEP with a provider. PrEP disapproval by others was also uniquely associated with less PrEP interest and less intention to use PrEP. Exploratory analyses indicated that the two stigma dimensions may interactively affect intention to use PrEP, underscoring the value of addressing both.
 
Beyond stigma, our study also revealed widespread unawareness about PrEP: Only 23% of participants reported having heard of PrEP prior to the survey. This low level of PrEP familiarity is notable because our data were collected in 2017, five years after US federal approval of PrEP, and our sample consisted of women who recently visited Planned Parenthood. Furthermore, the health centers from which participants were recruited were located in Connecticut cities in which the state health department had previously launched PrEP public awareness campaigns, including advertisements targeting women [32]. Thus, even fewer women may be aware of PrEP in neighboring regions.
 
PrEP Messaging Considerations
 
Collectively, our findings suggest a need to broaden the reach of PrEP messaging to women and include message content that counters PrEP stigma. Some participants who were newly introduced to PrEP during the survey anticipated PrEP stigma even though they were provided with only basic factual information about PrEP prior to viewing the stigma items, perhaps due to heightened suggestibility in the absence of pre-existing knowledge. However, unlike previous research with MSM associating greater PrEP awareness with lower PrEP stigma [11], both dimensions of PrEP stigma were just as high among women with prior awareness of PrEP. Message framing strategies that effectively address PrEP stigma among women with varying levels of PrEP knowledge are needed.
 
PrEP messaging should target not only potential PrEP users, but their social networks as well. Both PrEP stigma subscales in this study measured anticipated PrEP stigma, assessing perceived stereotype endorsement and expected disapproval by others. Therefore, results suggest that other people's beliefs about PrEP can play a key role in an individual's personal decision to pursue PrEP. Promoting community visibility and public discourse may help to foster norms of acceptance and decrease the likelihood of PrEP candidates anticipating negative reactions from others.
 
PrEP Messaging and Education in Healthcare Settings
 
Both PrEP stigma subscales were uniquely associated with comfort discussing PrEP with a provider and accounted for the most variance in this PrEP uptake indicator of all three, suggesting that PrEP messaging could be particularly influential in healthcare settings. Such messaging includes information explicitly communicated by providers as well as indirect messages conveyed, for example, through educational pamphlets and closed-circuit videos presented in waiting areas.
 
PrEP messaging by providers can be cultivated through direct medical training. Such training should encourage providers to conceptualize PrEP as a tool that empowers patients to take control of their sexual health [33]. Framing it as an intervention for patients "at very high risk" stigmatizes PrEP and potential PrEP users [33]. Training should instruct providers to ask open-ended questions about patients' sexual health concerns and goals rather than relying on traditional risk assessment tools, which can alienate patients and fail to identify prospective PrEP candidates [33,34].
 
The regularity with which PrEP is discussed and offered to patients in healthcare settings can also convey meaning and affect stigma. Integrating conversations about PrEP into routine preventive healthcare would help to raise awareness among patients and their social networks and normalize PrEP discussion and use [34]. Most survey participants expressed some interest in learning about PrEP, and about a third intended to use PrEP if it were made freely available-supporting a broad-based approach to PrEP education.
 
Patient education about PrEP should be embedded in more comprehensive conversations about HIV prevention and sexual health. The majority (90%) of study participants reported using condoms inconsistently if at all. Federal clinical guidance [35] lists "history of inconsistent or no condom use" among the indicators of substantial sexual risk for HIV acquisition (p. 13), suggesting at least 90% of our sample could be considered as candidates for PrEP, and likely more given other risk indicators (e.g., high number of sex partners). However, considerably fewer (21%) perceived any risk of acquiring HIV in their lifetime, indicating potential underestimation of HIV risk.
 
Incongruence between risk behavior and risk perception has been reported among female reproductive healthcare patients elsewhere and underscores the need for further sexual health education with this population [36].
 
Limitations and Other Considerations
 
Our sample included women who accessed medical services at Connecticut Planned Parenthood centers, where PrEP is available to patients. It is not representative of all US women, and findings should not be assumed to generalize to women who are not engaged in care or who receive care in settings where PrEP availability is constrained.
 
Our use of a quantitative design-though advantageous in capturing the attitudes of a large sample and allowing for broader inference-limited the range of PrEP-user stereotypes we explored to a pre-defined list with close-ended response options.
 
Because these items were developed from PrEP stigma literature primarily involving men, anticipated stereotypes of particular salience to women may not have been captured. For example, women have reported anticipating their male partners would associate their PrEP use with infidelity and mistrust [22]. Qualitative research could help to uncover additional nuances in women's impressions of PrEP users and concerns surrounding the impressions of others. Qualitative methods may be more sensitive to unique manifestations of stigma among subgroups of women who are disproportionately affected by HIV, such as women of color. Whereas our measure did not detect racial or ethnic differences in anticipated PrEP stigma, several studies have reported race-based differences in PrEP stigma among MSM [6,11], inviting a more in-depth analysis with women.
 
We also limited our study of PrEP stigma to anticipated PrEP stigma (i.e., expected stereotyping and disapproval by others) and identified two dimensions. We acknowledge, however, that there are other dimensions of PrEP stigma that could play a systematic role in PrEP uptake [16,37]. Personal endorsement of PrEP-user stereotypes, for example, was not captured, but it could be assessed in the future with other PrEP stigma instruments (e.g., PrEP Stigma and Positive Attitudes scale [11]). We encourage exploration of multiple stigma dimensions and their combined effects on PrEP attitudinal and behavioral outcomes in future research.
 
Conclusion
 
PrEP is a promising prevention tool that offers immense benefit to women and others at risk for HIV. However, it is only as promising as it is accessible. Addressing PrEP stigma and other psychosocial hurdles is essential to enabling such access in the years to come.

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