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. Author manuscript; available in PMC: 2025 Nov 1.
Published in final edited form as: Sociol Inq. 2023 Dec 17;94(4):890–909. doi: 10.1111/soin.12589

Facilitators and Barriers to Pre-Exposure Prophylaxis Uptake Willingness for Full-Service Sex Workers: A Social–Ecological Approach

Stephen D Ramos 1,2, Steff Du Bois 3
PMCID: PMC11737633  NIHMSID: NIHMS1951086  PMID: 39831188

Abstract

Full-service sex workers (FSSWs) are at heightened risk of contracting HIV due to facing multi-level challenges to sexual health. This study investigated factors associated with willingness to use Pre-Exposure Prophylaxis (PrEP) - a daily HIV preventative medication, among FSSWs. Using social-ecological theory, an online survey was developed with initial guidance from a local sex worker advocacy organization to assess barriers and facilitators to PrEP uptake willingness. The survey was disseminated with the assistance of local and national sex work advocacy organizations. In our sample of FSSWs (n=83), two barriers and two facilitators initially were associated with PrEP uptake. However, in adopting a more conservative analysis, only anticipating stigmatizing disapproval from others for using PrEP and providing others with PrEP knowledge maintained statistical significance. These two variables collectively explained nearly 30% of the variance in PrEP uptake willingness. Implications for both future research and clinical work with FSSWs are discussed.

Keywords: Pre-Exposure Prophylaxis (PrEP), full-service sex work (FSSW), social-ecological model, HIV prevention

Introduction

Full-service sex workers (FSSWs) are individuals who exchange direct sexual services (i.e., receptive and insertive vaginal, anal, and oral sex) for goods, money, or other services (Centers for Disease Control and Prevention 2022). While acknowledging their limited generalizability, the most comprehensive assessments indicate that around 36% of global female sex workers are reported to be living with HIV (World Health Organization 2022), with approximately 17% of female sex workers in the United States impacted by HIV (Paz-Bailey et al. 2016). Factors like stigma, restricted healthcare access, power dynamics, substance use, and reluctance to seek medical attention may relate to relatively high STIs and HIV infection among FSSWs (Centers for Disease Control and Prevention 2022). However, research investigating associations between these variables and HIV risk among FSSWs is limited. Given the above and that HIV is predominantly transmitted through sex (Centers for Disease Control and Prevention 2021a), HIV is a significant threat to wellbeing for FSSWs. Accordingly, further research is needed on HIV prevention strategies in this community.

Approaches to reducing HIV transmission include abstinence, reducing sexual partners or mutual monogamy, and using condoms (Centers for Disease Control and Prevention 2021a). However, these strategies may not be feasible for individuals engaged in full-service sex work (FSSW), which may involve multiple partners and inconsistent condom use (Centers for Disease Control and Prevention 2022). Alternative prevention options are thus needed for HIV-negative individuals engaged in activities that may increase the likelihood of HIV infection. Moreover, emerging research on sexually based violence and stealthing (i.e., the act of non-consensual condom removal mid-intercourse; Latimer et al. 2018) further highlight the need for alternative approaches that provide maximal protection for those at heightened risk.

Pre-exposure prophylaxis (PrEP) stands as a highly effective method in reducing HIV risk, boasting a 99% protection rate for those strictly adhering to the regimen (Centers for Disease Control and Prevention 2021b); however, challenges obstruct the uptake of PrEP, including concerns about medication safety, efficacy, resistance to other drugs, and doubts regarding complete protection against HIV (Golub et al. 2013). Attitudinal barriers such as fear of being associated with HIV, apprehensions about adherence, and anticipation of stigma or lack of support from sexual partners further impede adoption (Amico et al. 2017; Biello et al. 2017). These obstacles are prevalent across various demographics, including cisgender women, heterosexual people of color, transgender men, and sex workers (Bekker et al. 2015; Chapman Lambert et al. 2018; Roth et al. 2019; Rowniak et al. 2017).

Specifically focusing on sex workers, numerous barriers hinder their access to PrEP, creating complexities in its effective utilization. The challenges they face encompass a lack of awareness and knowledge about PrEP from various sources, coupled with medical concerns, individual risk perception, and logistical obstacles (Kislovskiy et al. 2022; Sundelson et al. 2022). Decision-making on PrEP usage within the context of exchange sex also complicates its implementation (Kislovskiy et al. 2022). While healthcare providers play a crucial role in supporting PrEP utilization, some providers’ limited awareness and persistent HIV-related stigma discourage individuals from seeking treatment (Kislovskiy et al. 2022; Mayer, Agwu, and Malebranche 2020). This challenge is exacerbated by biases and distrust experienced by at-risk communities, particularly among marginalized groups such as Black and Latina transgender women (Cooney et al. 2023). Financial assistance options exist but are hindered by poverty and lack of support, underscoring the need for comprehensive public education, healthcare provider training, and systemic changes addressing deep-rooted issues in the healthcare system, such as racial bias (Mayer et al. 2020).

Numerous facilitating factors contribute to enhancing the adoption of PrEP, providing valuable insights to boost its accessibility and utilization. Facilitating elements include the availability of resources, such as free access to PrEP, alongside support services, HIV testing, sexual healthcare, and counseling (Golub et al. 2013). Furthermore, positive beliefs regarding PrEP efficacy, perceptions of HIV risk, adherence strategies, and robust social support networks significantly encourage PrEP use (Amico et al. 2017). Unfortunately, studies often overlook FSSWs, a group of increased likelihood to experience HIV and who could substantially benefit from PrEP. Synthesizing the existing research points to integrating health services to alleviate patient burden and leveraging long-acting PrEP formulas, potentially bolstering both PrEP uptake and adherence. Legal services are recognized as an integral link to healthcare access, including PrEP access, while the presence of peer navigators is identified as a key factor in promoting PrEP usage (Cooney et al. 2023). Additionally, strategies aimed at facilitating entry into preventive services, such as seeking healthcare in the emergency room for Post-Exposure Prophylaxis (PEP) and integrating preventive and sexual education into emergency department resources, particularly through a strong PEP to PrEP pathway, are highlighted as potential facilitators to PrEP uptake (Kislovskiy et al. 2022). Collectively, these facilitating factors shed light on avenues that may facilitate PrEP uptake and engagement, indicating the potential for a more comprehensive and inclusive approach to PrEP utilization.

Many studies that do examine PrEP use within FSSWs have occurred outside the US (Eakle et al. 2017; Mutua et al. 2012; Poon et al. 2019) and do not necessarily reflect the current sociopolitical climate of the US. Specifically, the US government recently enacted the Stop Enabling Sex Traffickers Act (SESTA)/Allow States and Victims to Fight Online Sex Trafficking Act (FOSTA) into law in 2018. These laws effectively closed many online platforms (e.g., Craigslist.com, Backpage.com) that were utilized by sex workers to screen clients and further establish sexual agency (Blunt and Wolf 2020). Related, a meta-analysis of sex work-related legislature found that more restrictive policies were associated with increased risk towards physical and sexual health (Platt et al. 2018). As SESTA/FOSTA now eliminates online sexual agency for sex workers, these individuals are at increased risk of poorer health, such as increased risk for HIV acquisition and drug use in the more dangerous and isolative environment of street-based sex work (Bozinoff et al. 2019; Centers for Disease Control and Prevention 2022). Additionally, elimination of sexual agency may also impact sexual self-efficacy, a known component of health behaviors (Hevey, Smith, and McGee 1998). Thus, it is likely that multiple factors relate to PrEP uptake willingness among FSSWs.

To nest this work within theoretical foundations, the Social-Ecological Model offers a framework to understand the factors related to various health behaviors. This model proposes five levels of factors that relate to both broad health behaviors and to HIV-related health behaviors specifically – individual (e.g., substance use), interpersonal (e.g., social networks), institutional (e.g., competent providers), community (e.g., peer pressure), and structural (e.g., public policy; Kaufman et al. 2014) and has been extensively used in recent literature to frame HIV risk and resiliency among marginalized communities (Freitas et al. 2023; Hergenrather et al. 2021; Vincent et al. 2020; Williams et al. 2023). Compared to single-leveled theoretical frameworks of HIV risk, this model offers a robust, multi-level mapping of the associations between micro- and macro-level influences to health (Kaufman et al. 2014). In this study, we used the Social-Ecological model to evaluate differential, multi-level associations between putative barriers and facilitators to PrEP uptake willingness among FSSWs.

Methods

This study used data obtained from a larger study of FSSW, health, and PrEP that was funded by the Drs. Rosalee and Raymond Weiss Program and Innovation Grant from the American Psychological Foundation. Funding was awarded in December 2018, IRB approval was obtained May 2019 (IRB 2019–030) through the Illinois Institute of Technology Institutional Review Board, and data collection occurred between October 2019 - January 2020.

Project Development

We consulted a local sex worker community advisory board during initial study development. This board consisted of current and former sex workers, as well as advocacy leaders. Together with the board, we identified gaps in scientific literature and developed the foundation for this parent study. The board’s input guided the areas of interest for this study, associated publications (Du Bois, Kannout, and Ramos 2021; Ramos et al. 2023; Ramos, Guerra, and Du Bois 2022), and other inquiries. Applying social-ecological theory, we collected variables mentioned in existing literature, as well as those identified as relevant by the community. Our aim was to ensure that each level of the social-ecological model was represented by at least two variables.

Participants and Procedures

Participants in this study were FSSWs (i.e., individuals who provided receptive and/or penetrative anal or vaginal intercourse in exchange for goods, money, or services) aged 18 years or older who had engaged in sex work prior to 2018 and were currently engaged in it at the time of recruitment. Individuals living with HIV were excluded from the study, as PrEP is not prescribed for this group. Additionally, participants engaged solely in oral sex work were also excluded, considering the low incidence of HIV infection through oral sex (Centers for Disease Control and Prevention 2021a). Recruitment was conducted through online dissemination (i.e., FSSW listservs and targeted social media) and word of mouth with the assistance of our collaborators. Participants provided informed consent online and completed a standard series of questionnaires via Qualtrics in a singular survey, with appropriate skip logic integrated into the survey design (e.g., automatic skipping option for text-input if initial response did not require additional text). The average survey completion time was approximately 20 minutes. Participants received a $10 Amazon gift card as compensation.

Measures

Sociodemographics

Participants self-reported age, gender, sexual orientation, race/ethnicity, marital status, educational status, employment status, total time performing sex work, frequency of condom use, and income (both relating to FSSW, and non-FSSW), using clear and non-complex questions (i.e., face valid). These variables were assessed for both descriptive statistics and were included as control variables, due to their known associations with PrEP barriers and facilitators in non-FSSW communities (Golub 2018; Mustanski et al. 2018).

PrEP Uptake Willingness

Participants were briefed with a summary of PrEP (See Figure 1) and were provided with four items – each represented a separate situation in which willingness for PrEP uptake was assessed. While no official name or psychometric data exist for this series of questions, this set of questions and adaptations have been utilized in previous studies (Grov et al. 2015; Wang et al. 2017, 2018). Given the known barriers to healthcare utilization for FSSWs (Ma, Chan, and Loke 2017), we focused on PrEP uptake willingness if it were provided for free, using the item, “I am willing to take a once-daily oral pill as PrEP for the next six months if it could be provided for free by public hospitals/clinics.” Response options were measured on a 5-point Likert-type scale ranging from “Definitely not” to “Definitely would.”

Figure 1.

Figure 1

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Summary of PrEP Information.

Select barriers and facilitators towards PrEP uptake were identified from previous research by Golub et al., 2013, where these researchers identified a total of 19 related questions created through extensive literature review and pilot testing with field experts in PrEP. This method of item generation is consistent with other investigations of PrEP, in that similar barriers and facilitators have been identified (Hammack, Cooper, and Lezak 2012; Holloway et al. 2017; Sevelius et al. 2016) and were chosen. Here, 11 items assessed barriers to PrEP uptake, and 8 items assessed facilitators to uptake (Golub et al. 2013). For this study, wording was adapted specifically for sex workers through team input. Each of the domains below were assessed using the question stem “How important are the following topics to you when thinking about using PrEP?”, with a 5-point Likert-type scale 0=Unimportant to 4=Extremely Important. Specific subscales were created using the Social-Ecological Model (See Figure 2; Ma et al. 2017) and included total computed scores for each of the following:

Figure 2.

Figure 2

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Mapping of Study Variables in the Social–Ecological Model.

Adverse Health Concerns

Adverse health concerns were assessed through a four-item subscale developed from variables identified in literature (Golub et al. 2013) and assessed concerns surrounding physical health-related consequences due to PrEP. Internal consistency analysis calculated for current study scores indicated a = .77. A sample item was, “Concerns about the long-term effects of PrEP on my health.”

Adverse Behavioral Concerns

Adverse behavioral concerns were assessed through a three-item subscale developed from variables identified in literature (Golub et al. 2013) and assessed behaviorally-based concerns post-PrEP uptake. Internal consistency analysis calculated from current study scores indicated a = .89. A sample question was, “Concerns that PrEP might make my partner(s) expect me to have anal or vaginal sex without a condom.”

Importance of PrEP and Sexual Resources

Importance of PrEP and sexual resources was assessed through a four-item subscale developed from variables identified in literature (Golub et al. 2013) and assessed degree of value placed on PrEP and sexual resources. Internal consistency analysis from this study indicated a = .83. A sample item was, “How important is it to access to group-based support for PrEP use?”

Importance of Free Care

Importance of free care was assessed through a three-item subscale developed from variables identified in literature (Golub et al. 2013) and assessed degree of importance placed into free PrEP-related care. Internal consistency analysis from this study indicated a = .72. A sample item was, “How important is access to free sexual healthcare/monitoring while on PrEP?”

Privacy Concerns

This two-item subscale was developed from variables identified in literature (Golub et al. 2013) and assessed concerns surrounding privacy risks in taking PrEP. Internal consistency from this study analysis indicated a = .83. A sample question was, “Concerns that people will see me taking medication and will want to know why I am taking it.”

Anticipated Stigma

Anticipated stigma was assessed as an additional barrier to PrEP using the PrEP Anticipated Stigma Scale, an eight-item measure that assesses anticipated social stigma of PrEP use (Calabrese et al. 2018a). Participants were provided with the prompt of “Please rate your level of agreement with the following statements: If I took PrEP and people knew about it, people would assume that…” and “If I were taking PrEP…” The scale demonstrates psychometric validity, and good internal consistency (i.e., comparative fit index, Tucker-Lewis index, and incremental fit index all >.95; root mean square error of approximation <.05) and assesses two individual factors of PrEP anticipated stigma confirmed through factor analysis with Eigenvalues greater than Kaiser’s criterion of one (Calabrese et al. 2018a). These two factors are user stereotypes and disapproval from others (Calabrese et al. 2018a). For this study, wording from the original scale was adjusted with team input to be reflective of the FSSW population by replacing the question of, “People would assume I am gay if they know I took PrEP” to “People would assume I am a sex worker if they know I took PrEP.” Specific subscales were created using the Social-Ecological Model and guided by previous literature (Ma et al. 2017). We computed total scores for each of the two following subscales:

Anticipated PrEP Disapproval by Others.

Disapproval by others was measured with a three-item Likert-type subscale assessing, e.g., anticipated stigma and judgement of using PrEP by others (i.e., friends, family, and sexual partner; Calabrese et al. 2018a). Internal consistency analysis from current study scores indicated a = .70. Likert-type anchors for this item ranged from “Strongly Agree” to “Strongly Disagree.” A sample item was, “If I were taking PrEP, my sexual partner would approve”.

Anticipated PrEP-user Stereotypes.

User stereotypes was measured with a five-item subscale assessing broad perceived cultural associations of PrEP use (Calabrese et al. 2018a). Likert-type anchors for this item included “Strongly Agree” to “Strongly Disagree.” Internal consistency analysis from current study scores indicated a = .65. A sample item was, “People would assume I slept around if they knew I took PrEP.”

PrEP Knowledge Sharing

Sharing of PrEP knowledge was assessed through a pair of internally created questions developed between the researchers and community collaborators. This measure was included because literature of PrEP knowledge tends to focus on self-knowledge as it relates to potential PrEP use, with no true exploration of knowledge sharing behaviors (Auerbach et al. 2015). Additionally, feedback from community collaborators during a meeting between researchers and project investigators included requesting an investigation of knowledge sharing. Here, we created a two-item measure assessing the degree to which FSSWs share PrEP-related knowledge to clients and other sex workers. Internal consistency analysis from current study scores indicated a = .87. Item responses ranged from “Never” to “Always” through a Likert-type five-point assessment. A sample item was, “How often have you provided knowledge about PrEP to…”

Sexual Self-Efficacy

Participants were asked to provide their degree of sexual self-efficacy pre-SESTA/FOSTA and post-SESTA/FOSTA, each on a five-point Likert-type scale. Likert-type anchors ranged from “Not at all” to “Completely.” A sample question was, “How confident are you currently in your sexual decision making since the enactment of SESTA/FOSTA?” This item was internally created through team input, as no known measures relating to SESTA/FOSTA currently exist. With these two variables, we also calculated a change score of perceived sexual self-efficacy from pre- to post SESTA/FOSTA enactment. Both current level of sexual self-efficacy and change score since enactment of SESTA/FOSTA were used for analyses.

Visual Depiction of Variables within the Social-Ecological Model

Data Quality Assurance

A validity checklist was used to assess each potential participant’s data before inclusion into the final analytic sample, and to filter potential bot-based data (Shaver 2005). Participants were informed that their data would be subject to quality assurance and they would not receive compensation if data were deemed unusable due to data quality issues. Checklist items included assessing data for problematic response patterns, unique IP and email addresses, 20-minute approximate survey completion, and conflicting answers within subscales that have reverse-scored items. Participants were also prompted with a statement regarding unanswered questions if applicable, completed two attention checks, and completed two embedded captcha tasks. Participants failing two or more data quality assurance checks were excluded from the study’s master dataset.

Statistical Analyses

Data were analyzed using SPSS v 27 and examined sample characteristics via descriptive statistics. Multiple hierarchical linear regression analyses examined barriers and facilitators to PrEP uptake, with sociodemographic variables included as control variables in the first regression block of each analysis (Marcus et al. 2016). The second regression block consisted of the individual subscale to be tested, resulting in ten separate multiple linear regressions while controlling for select sociodemographic variables. Analyses were conducted at the p < .05 significance level and adjusted posteriori using the Benjamini-Hochberg Procedure (Thissen, Steinberg, and Kuang 2002). Stepwise hierarchical regression was used to identify specific variable groupings that were most predictive of PrEP uptake willingness variability.

Adverse health and behavioral concerns, anticipated PrEP stigmatizing disapproval, and privacy concerns were hypothesized to predict lower willingness to take PrEP, while the importance of free care and sexual resources were hypothesized to increase willingness. Additionally, knowledge sharing behaviors were exploratorily hypothesized to relate to PrEP willingness. Anticipated PrEP-user stereotype stigma, a greater decrease in sexual self-efficacy from pre/post-SESTA/FOSTA, and current low sexual self-efficacy amid SESTA/FOSTA were all hypothesized to predict lower levels of willingness.

RESULTS

Missing Data and Normality

All variables had complete data other than sex work-based income (n = 3 missing). To preserve sample sizes across analyses, a linear missing data interpolation was conducted to replace our missing values (Noor et al. 2015; Noor Norazian et al. 2008). Data were assessed for normality using an inspection of skewness and kurtosis absolute z scores, with scores between the recommended (−2, 2) threshold (George 2011) indicating normal distribution. Adjusted z-score inspection based on sample size (Kim 2013) yielded a 3.29 absolute z-value threshold, further indicating normal distribution.

Descriptive Statistics

Participants (n=83) were relatively young, averaging 28.01 (SD = 4.25) years old and had been engaged in FSSW for on average 4.35 (SD = 3.10) years. Participants also largely identified as White and cisgender female, though nearly 23% did identify as Hispanic, Latino, Latina, or Latinx. Approximately 60% of this sample identified as a sexual minority (i.e., lesbian, gay, or bisexual). Over half (55.5%) of participants endorsed being married, in a domestic partnership, or in a relationship. Only 32.5% of the aggregated sample reported using condoms 100% of the time. Full sociodemographic information with univariate statistics is included in Table 1. Data were obtained from a total of 30 geographic states/territories. Additional descriptive geographic information is found in prior publications (Ramos et al. 2022).

Table 1:

Sociodemographic Characteristics of Participants

Sociodemographic Characteristic n/M(SD) %
Race
White 68 81.9%
Black/African American 7 8.4%
Other 5 6.0%
Asian 3 3.6%
Ethnicity
Hispanic, Latino, Latina, Latinx 19 22.9%
Gender
Cisgender Female 55 66.3%
Cisgender Male 11 13.3%
Gender Nonconforming 9 10.8%
Transgender Female 5 6.0%
Transgender Male 2 2.4%
Not Listed/Other 1 1.2%
Education
Less than High School Degree 12 14.5%
High School Degree/GED 22 26.5%
Some College, No Degree 35 42.2%
Associate/Technical Degree 3 3.6%
Bachelor Degree 7 8.4%
Graduate Degree 4 4.8%
Sexual Orientation
Straight 35 42.2%
Gay/Lesbian 9 10.8%
Bisexual 18 21.7%
Queer 18 21.7%
Not Listed 3 3.6%
Partnership Status
Married or Domestic Partnership 13 15.7%
Divorced 1 1.2%
Separated 10 12.0%
Singler, Never Married 26 31.3%
In a Relationship 33 39.8%
Condom Use
100% Condom Use 27 32.5%
<100% Condom Use 56 67.5%
Age
Years 28.01 (4.25) -
Times as Sex Worker
Years 4.35 (3.10) -
Income
Non-Sex Work Income 1.62 (.94) -
Sex Work Income 2.46 (1.24) -
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Inferential Statistics

Hierarchical regressions were used to analyze associations between independent variables in the Social-Ecological model (see Figure 2) and the dependent variable of PrEP uptake willingness. After controlling for condom use, marital status, gender, and sex work-based income, four variables predicted PrEP uptake willingness. Anticipated stigmatizing disapproval from others (b = −.16, t(82) = −3.18, p = .002) and anticipated stigmatizing stereotypes from others (b = .08, t(82) = −2.31, p = .024) were barriers to PrEP uptake willingness, while providing others with PrEP knowledge (b = .19, t(82) = 4.15, p < .001) and importance of free care (b = .09, t(82) = 2.11, p = .038) were facilitators. Other analyses were non-significant (ps > .05). The Benjamini-Hochberg procedure was used to adjust p values, and afterward two variables remained significant: providing others with PrEP knowledge (critical p = .005) and anticipated stigmatizing disapproval (critical p = .01). Refer to Table 2 for Benjamini-Hochberg adjustments.

Table 2.

Benjamini-Hochberg Procedure Results

DV IV(s) Obtained p rank Critical p
PrEP Uptake Willingness - Free PrEP Knowledge Sharing 0.0001 1 0.005 *
PrEP Uptake Willingness - Free Anticipated Stigma - Disapproval 0.002 2 0.01 *
PrEP Uptake Willingness - Free Anticipated Stigma - Stereotype 0.024 3 0.015
PrEP Uptake Willingness - Free Importance of Free Care 0.038 4 0.02
PrEP Uptake Willingness - Free Adverse Health Concerns 0.178 5 0.025
PrEP Uptake Willingness - Free Importance of PrEP and Sexual Resources 0.199 6 0.03
PrEP Uptake Willingness - Free Privacy Concerns 0.227 7 0.035
PrEP Uptake Willingness - Free Adverse Behavioral Concerns 0.348 8 0.04
PrEP Uptake Willingness - Free Change Score Sexual Self Efficacy 0.614 9 0.045
PrEP Uptake Willingness - Free Sexual Self Efficacy Post-SESTA/FOSTA 0.665 10 0.05
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Note:

*

p < critical value, PrEP = Pre-Exposure Prophylaxis, SESTA = Stop Enabling Sex Traffickers Act, FOSTA = Fight Online Sex Trafficking Act

A stepwise hierarchical multiple regression identified the two most significant variables related to PrEP uptake willingness as providing others with PrEP-related knowledge (b = .15, t(82) = 3.25, p = .002) and anticipating stigmatizing disapproval (b = −.10, t(82) = 2.01, p = .048), explaining nearly 30% of the variance in PrEP uptake willingness collectively after controlling for control variables [F(6, 76) = 5.07, p < .001, R2 = .29].

Discussion

This study is among the first known investigations of factors that relate to PrEP uptake willingness if provided for free by hospitals and clinics among FSSWs. We used a Social-Ecological framework to explore multiple levels of factors simultaneously. Despite being at heightened risk for HIV, FSSWs have low rates of PrEP uptake, and current harm reduction approaches (e.g., monogamy), are frequently not well-suited to their needs (Centers for Disease Control and Prevention 2021b, 2021a, 2022). Understanding factors that influence PrEP uptake willingness is crucial for this community, and this study provides new insight into the multiple factors that may relate to PrEP willingness. Our findings partially supported hypotheses (four of 10) regarding the associations of PrEP uptake willingness in FSSWs. Sharing knowledge about PrEP and the importance of free care emerged as facilitators, while anticipating stigmatizing disapproval and anticipated PrEP stereotypes emerged as barriers. However, only sharing knowledge and anticipating stigmatizing disapproval remained significant after a conservative interpretation.

Within the context of PrEP-related knowledge, one’s own increased PrEP knowledge consistently relates to increased PrEP willingness (Ojikutu et al. 2018). The current study contributes to the dearth of research examining how the process of providing PrEP-related information to social networks (i.e., clients and other FSSWs) relates to one’s own PrEP willingness for FSSWs. Our results indicate that frequency of providing social networks with PrEP knowledge is positively associated with PrEP uptake willingness for the individual providing knowledge. This is notable because individual level knowledge of PrEP does not always directly translate to one’s willingness to use PrEP. That is, it is possible that an individual may have poor knowledge of PrEP but demonstrate high willingness to use PrEP (Iniesta et al. 2018). Additionally, higher degree of knowledge surrounding PrEP can also be negatively associated with acceptability of PrEP (Ayala et al. 2013; Yi et al. 2017). As such, the added component of sharing PrEP knowledge with one’s community (i.e., clients and other FSSW peers) may provide a new research focus and intervention target for those continuing to explore PrEP uptake willingness among FSSW.

This interpretation can be nested in Social Exchange Theory, which posits that individuals weigh costs and benefits of social interactions and social relationships with others prior to engaging in a social interaction (Cook et al. 2013). Social Exchange Theory also emphasizes the role of personal comparison levels, fairness, and reciprocity in guiding behavior and decisions within relationships and social exchanges (Cook et al. 2013). Individuals may be willing to use PrEP if navigating current medical systems (e.g., disclosing sex-based work, communicating with non-trusted medical providers) results in a reinforced benefit (i.e., receiving PrEP, increased protection) that outweighs the social cost. The cost of providing clients and other FSSWs with PrEP knowledge may be offset by the prosocial benefit of potential HIV risk reduction for the individual (i.e., when sharing PrEP information with clients) and for the community (i.e., when sharing PrEP information with other sex workers). Related, sharing PrEP-related knowledge with others may engender a personal comparison of the individual sharing the information (in this case, a FSSW) with the person receiving the information (e.g., a client, FSSW community member) – an exercise that may facilitate the FSSW visualizing or cognitively considering themselves taking PrEP. Social Exchange Theory may therefore help explain potential discrepancies in research that has found moderately high levels of PrEP awareness yet low levels of use among some communities (Eaton et al. 2017).

Similar to findings reported in the existing literature (Calabrese et al. 2018a), anticipated stigmatizing disapproval from others surfaced as a significant barrier to PrEP uptake willingness. Notably, anticipated stigmatizing disapproval from others consistently appears to be a barrier to PrEP uptake willingness across several populations, such as gay and bisexual MSM who are incarcerated (Brinkley-Rubinstein et al. 2018), women attending a public health clinic (Calabrese et al. 2018b), and women at elevated HIV risk (Teitelman et al. 2020). Given the pervasiveness of anticipated disapproval from others as a barrier towards PrEP uptake willingness, it is unsurprising that anticipated disapproval from others is among the select variables that maintained significance across analyses in this study. However, given that this is one of, if not the first, study to systematically investigate the several domains of the Social-Ecological model in a FSSW sample regarding PrEP uptake willingness, these findings are an important contribution to the literature.

Regarding non-significant findings, some research of PrEP-stereotypes does exist that parallels the current study’s findings, showing that holding PrEP-user stereotypes are negatively associated with comfort discussing PrEP with a medical provider for women but are not associated with interest in PrEP (Calabrese et al. 2018a) or intention to use PrEP (Chittamuru et al. 2020). Differential variable operationalization and measurement across studies may explain these results. Given that this study assesses willingness to use PrEP “if provided for free by hospitals and clinics,” this study may only speak to PrEP willingness in this context. This is an important consideration, as it is known that FSSW face significant barriers to accessing and utilizing healthcare broadly (Ma et al. 2017). Additionally, neither concerns surrounding PrEP use introducing adverse health, nor behaviorally-based concerns, emerged as significantly associated to PrEP uptake willingness in the current study. Given that FSSW is a career of sexual behavior, it is possible that our sample of FSSWs possess a sense of sexual mastery surrounding their work, which can be a protective factor towards HIV risk (Buttram, Surratt, and Kurtz 2014) and may relate to reduced importance of health and behaviorally-related concerns of PrEP uptake willingness.

Given that previous research surrounding PrEP uptake willingness and research of FSSW communities largely lacks the incorporation of inferential and regression-based analyses, this study takes an important step in identifying a specific grouping of variables that were most predictive of PrEP uptake willingness for FSSWs. The model showed that anticipating stigmatizing disapproval from others and providing others with PrEP-related knowledge together contribute to explaining a significant proportion of the variance in PrEP uptake willingness. This model establishes the first known comprehensive examination and grouping of variables that explain variance in PrEP uptake willingness in this community.

Research and Clinical Implications

Given that the existing research, particularly within FSSW, is lacking in inferential modeling of variables in relation to PrEP uptake willingness, we recommend future studies of PrEP uptake willingness in FSSW communities further investigate both anticipating stigmatizing disapproval from others and PrEP knowledge sharing with others as potential targets for intervention efforts to improve uptake willingness. We also hope future research wll adopt replication-based aims with current study findings, and will test the generalizability of our findings, particularly within the diverse racial and ethnic populations of FSSWs most affected by HIV. Additionally, future research could explore other areas of the Social-Ecological model and incorporate more advanced statistical approaches to comprehensively test and understand predictors of PrEP uptake willingness in this community. Investigating multi-level combinations of factors that influence PrEP uptake willingness could lead to a better understanding of how various factors interact and promote overall health-based outcomes, as it is likely that such combinations of factors relate to engagement in HIV prevention approaches for specific populations (Skovdal 2019).

Study results have clinical implications as well. Given that our study identified aspects of expected socially based stigma as a significant barrier to PrEP uptake willingness, this information can be used within interventions that directly address PrEP-related stigma. These interventions could focus on improving interpersonal health communication skills and include exercises to engage in meaningful conversations with these individuals. It also may be beneficial for healthcare professionals, both medical and non-medical, to incorporate discussions about stigma and sexual assertiveness in relation to social networks (Alvarado et al. 2020). Additionally, PrEP knowledge sharing with others may be valuable to discuss within intervention settings by researchers and interventionists and within clinical settings by providers. Community-Based Participatory Research studies, particularly, could be useful to learn more about the processes of experiencing PrEP-related stigma and PrEP-related knowledge sharing – both within FSSW and other populations. Considering our two emergent factors together, it is possible that providing others with PrEP knowledge may counter the effects of anticipated stigmatizing disapproval from others; however, this has not been tested in research or intervention settings.

Strengths

This study used community-level FSSW advocacy organizations and national-level FSSW organizations to assist with study design and recruitment, allowing for data collection from a larger pool of potential participants and a novel perspective on the experiences of FSSWs (Genberg et al. 2016; Tembo et al. 2021; Valerio et al. 2016). Although this sample may not be nationally representative, efforts were made to diversify the sample geographically to increase generalizability. However, the limitations of this approach are discussed later. Safeguards in the study design increased confidence in data quality, as online and survey-based research is vulnerable to fraudulent responses (Teitcher et al. 2015). The study took steps to prevent fraudulent responses by using CAPTCHA security tests, multiple attention checks, examination of inter-item level response patterns, and non-questionnaire data tracking (e.g., IP address). This is important for research on sex work, which is often scrutinized despite rigorous scientific methods (Shaver 2005). These precautions are further reinforced by recruitment efforts from FSSW advocacy organizations, which helped prevent potential cyber-based threats to data integrity and community-level hesitation (Teitcher et al. 2015). Lastly, this study took a broader Social-Ecological approach to assess the multi-level influences on PrEP uptake willingness, which differs from the single or dual-level approaches used in most previous studies (Grov et al. 2015).

Limitations

The online nature of the study design likely did not reach the most significantly marginalized FSSW, such as im/migrant FSSWs who often face intersecting challenges due to their citizenship status, such as prevention of employment and other financial supports (McBride and Janushev 2021). These individuals are known to be disproportionately impacted by HIV, but statistics highlighting the prevalence of these occurrences within the FSSW community are absent. Along with a smaller sample size relative to larger epidemiological HIV and PrEP-related studies, these limitations may affect the generalizability of the results.

Additionally, it is important to note that despite national-level sex worker associations assisting with the study dissemination, locally based sex worker advocacy groups were hesitant to participate in the study beyond initial study design and development – likely related to a mid-project shift in leadership of a local central sex worker organization that previously served as a primary point of contact for researcher-community integration. Future researchers could, to the extent possible, advocate for developing collaborative efforts that integrate FSSW community members into the research process beyond initial design and dissemination-based approaches.

We postulate several reasons why our attempt to collaboratively work with the community was less than ideal. Communities that have been historically exploited by researchers may have current relational dynamics understandably influenced by this history (Minkler and Wallerstein 2011; Wallerstein et al. 2008; Wallerstein and Duran 2017). Additionally, our initial limited research funding, which we allocated mainly for participant compensation, may have contributed to mistrust and hesitation by community members. The community board was comprised of various sex workers, including individuals who did not conduct FSSW, with differing perspectives and research questions. The more culturally diverse a partnership is, the more complex relational dynamics can be (Minkler and Wallerstein 2011; Wallerstein et al. 2008; Wallerstein and Duran 2017). Because of this, and due to the PrEP-related research focus of the funding source, some suggested research approaches and some questions of interest from the community were not able to be integrated into this study. These challenges likely contributed to difficulties in relational dynamics and perceptions of mistrust, highlighting the importance of integrating local beliefs into health research. Future researchers should evaluate the feasibility of community integration, compensate community members serving in advisory positions, and prioritize approaches that facilitate successful research in the community while navigating inherent challenges.

The study’s reliance on composite variables made up of single-item measures is a limitation due to the lack of validated materials for FSSW-specific research and PrEP-specific phenomenology (Holloway et al. 2017; Zhang et al. 2013). However, this study attempted to address this limitation by using the Social-Ecological model to group related variables and create theoretically and empirically informed composite variables for regression modeling. Additionally, our study measured willingness to use PrEP, but not actual adoption, which may limit the pragmatic application of our findings (Poteat et al. 2019; Rendina et al. 2017). Research shows that willingness does not always translate into actual use of PrEP (Hill et al. 2023; Patel et al. 2019; Poteat et al. 2019; Sullivan et al. 2020; Tomko et al. 2019), and there are structural and other barriers to uptake (Rolle et al. 2016, 2017). Moreover, our measure of PrEP uptake willingness was assessed if provided for free by hospitals and clinics. Given that FSSWs experience barriers to healthcare utilization, we advocate for alternative proxies to measure PrEP uptake willingness (e.g., from community organizations, over the counter, delivery subscription).

Conclusion

FSSWs face numerous challenges and threats to their sexual health, including HIV. Initially, sharing knowledge about PrEP with others, anticipating stigmatizing disapproval from others, anticipating stigmatizing stereotypes for using PrEP, and the importance of free care emerged as significantly associated to PrEP uptake willingness for FSSW. Ultimately, only anticipating stigmatizing disapproval from others and providing others with PrEP knowledge remained significant through a more conservative approach. These two variables emerged as joint predictors of PrEP uptake willingness for this community, and may be important points of focus for future research, clinical work, and policy interventions. Additional and more complex predictive models are needed to fully understand the multi-level challenges facing FSSWs in relation to PrEP uptake.

Funding:

This project was support through 2018 Rosalee G. and Raymond A. Weiss Research and Program Innovation Grant from the American Psychological Foundation. At the time of publication, Stephen Ramos was supported by the National Institute of Drug Abuse (NIH) by grant # T32 DA023356.

Biographies

Dr. Stephen D. Ramos, PhD (he/him), is a postdoctoral research fellow at the University of California, San Diego, and San Diego State University. His research centers on disparities in the HIV prevention-treatment continuum, biomedical HIV prevention, and behavioral health syndemics in marginalized populations.

Dr. Steff Du Bois, PhD (he/they) is a licensed clinical psychologist and Associate Professor of Psychology. They recently published the self-help book, “I’m Not Okay & That’s Okay.”

Footnotes

Code availability: All analyses were conducted using point-and-click functions in IBM SPSS.

Ethics approval: Approved by the Illinois Institute of Technology IRB (IRB-2019–030)

Consent to participate: All participants provided documented consent to participate in the study.

Consent for publication: Individual data and images are not published. All data are presented in aggregate, as per initial consent to participate in the study.

Conflicts of interest/competing interests: The authors deny any conflicts of interest to report.

Availability of data and material:

Due to the sensitive nature of these data, data are not available for public use at this time.

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