Abstract
Daily oral pre-exposure prophylaxis (PrEP) offers effective HIV prevention. In South Africa, PrEP is publicly available, but use among young women remains low. We explored young women’s perceptions of PrEP to inform a gender-focused intervention to promote PrEP uptake. Six focus group discussions and eight in-depth interviews exploring perceptions of PrEP were conducted with forty-six women not using PrEP, ages 18–25, from central Durban. Data were thematically analyzed using a team-based consensus approach. The study was conducted among likely PrEP users: women were highly-educated, with 84.8% enrolled in post-secondary education. Qualitative data revealed intersecting social stigmas related to HIV and women’s sexuality. Women feared that daily PrEP pills would be confused with anti-retroviral treatment, creating vulnerability to misplaced HIV stigma. Women also anticipated that taking PrEP could expose them to assumptions of promiscuity from the community. To address these anticipated community-level reactions, women suggested community-facing interventions to reduce the burden on young women considering PrEP. Concerns around PrEP use in this group of urban, educated women reflects layered stigmas that may inhibit future PrEP use. Stigma-reducing strategies, such as media campaigns and educational interventions directed at communities who could benefit from PrEP, should re-frame PrEP as an empowering and responsible choice for young women.
Keywords: PrEP, HIV stigma, sexuality, young women, South Africa
INTRODUCTION
Sub-Saharan Africa (SSA) contains two-thirds of the world’s population living with HIV, and women experience the greatest burden of the epidemic (1). Adolescent girls and young women (AGYW) ages 15–24 make up 10% of the population, but account for 25% of new global HIV infections (1,2). Within SSA, HIV incidence is among the highest in KwaZulu-Natal (KZN), South Africa (7.79 per 100 person-years in women ages 15–19, and 8.63 per 100 person-years in women ages 20–24) (3,4). These rates highlight the urgent need for widespread access to effective HIV prevention. The South African government aims to accelerate HIV prevention, grounding the response in structural drivers, sustainability, and accountability (5). Recent efforts such as the United States Agency for International Development (USAID) DREAMS partnership to reduce HIV/AIDS in AGYW have focused on expanding access to evidence-based interventions including sexual and reproductive health (SRH) services (6,7,8).
Oral pre-exposure prophylaxis (PrEP) with tenofovir disoproxil 300 mg + emtricitabine 200 mg has been demonstrated efficacious against HIV infection with daily use among both women and men. The Southern African HIV Clinicians Society recommends that heterosexual women use oral PrEP during periods of heightened HIV risk (9). In 2015, South Africa issued full approval of daily oral Truvada® for PrEP as part of its national HIV prevention strategy (1), and rollout of PrEP in the public sector began in 2017 (10). In some clinics across the country, oral PrEP is free for key and vulnerable populations, including young women, although PrEP was not widely available until early 2019. Although PrEP is included in the national HIV prevention strategy, rollout has been limited (1,10).
Challenges to real-world uptake and adherence include lack of male partner support (11,12), concerns about PrEP safety and efficacy (13), sexual disinhibition (14), disclosure issues (15,16), and low perceived HIV risk (17). One persistent barrier to PrEP uptake across multiple populations is the fear of PrEP stigma—shame and judgment about the reasons for PrEP use, and thus, about those who use PrEP (18–20). Using PrEP has been associated with negative perceptions of homosexuality, HIV, sex work and promiscuity (21,22), further stigmatizing already marginalized groups. PrEP stigma is well documented among female sex workers in Nigeria (23), men who have sex with men and women who have sex with women in the US (18), and adolescent girls and young women in Malawi (24). HIV stigma in South Africa has engendered fears of discrimination, violence and isolation (19,20,25), and was a factor related to low adherence in an open-label PrEP trial in the region (26). Earlier work in South Africa demonstrated that for young women, being perceived as promiscuous by others in the community is a powerful social harm (22,27,28) and, therefore, might influence women’s willingness to take up PrEP.
This paper reports on an analysis of formative qualitative data collected to develop a gender-focused intervention, Masibambane, to increase young women’s knowledge of PrEP and willingness to consider PrEP uptake. The formative study recruited women from central Durban, many of whom were attending university part- or full-time. While the prevalence of HIV is lower in university-educated women than in the general population of women (29), university students engage in sexual activities that place them at risk for HIV infection (30). Populations such as educated young women, whose basic needs are likely to be met, may have greater ability to adopt biomedical HIV prevention such as PrEP. This formative work, conducted outside of a clinical trial setting, examined young, HIV-negative, educated South African women’s expectations and understandings of PrEP.
Theoretical Framework
We drew on the Socio-Ecological Framework (SEF), a widely used model in HIV prevention research (31), to examine individual, interpersonal, and community-level influences on uptake and use of PrEP. In KZN, the SEF has been used to understand the determinants of sexual risk behaviours in AGYW (32). Drawing on more recent literature on intersectionality and HIV stigma (33,34), we applied an intersectional SEF framework to capture multilevel influences that underlie the complex challenges of South African women who may consider PrEP.
METHODS
Study Setting
This study took place in metropolitan Durban, South Africa, the coastal urban center of KZN (35), where data were collected by research staff at the South African Medical Research Council. Durban has a young and diverse population—38% is under the age of 19, 51% is Black, 25% is Indian or Asian, 15% is White, and 9% is Coloured (mixed-race) (35). Historical socioeconomic, racial, and gender discrimination have negatively impacted the health of South Africans (36), who face concurrent communicable and non-communicable epidemics (37). HIV/AIDS accounts for 31% of South Africa’s disability-adjusted life years (36). KwaZulu-Natal, where 29% of 15–24-year-old women live with HIV (38), has the highest female HIV prevalence in the world. While HIV treatment is well-integrated into the primary care system (38), HIV incidence remains steady in young South Africans, signifying a need for stronger HIV prevention efforts.
Study Design and Sample Selection
The qualitative component of the study involved six focus group discussions (FGDs) with 18- to 25-year-old women, and eight in-depth interviews (IDIs) with women who participated in the FGDs. Using a criterion-based and snowball sampling technique, participants were purposefully selected to fill pre-set recruitment targets for four community-based and two family planning clinic-based FGDs. Two recruitment locations were chosen to increase diversity in the participant population. FGDs were further divided according to age to create peer groups with similar life experiences: three groups for women aged 18–21 and three groups for women aged 22–25 years. FGD guides were the same between the two age groups and between the community-and clinic-recruited groups. Women who participated in FGDs were invited to indicate if they would be willing to participate in an IDI. Of those who were willing, eight participants were randomly selected to complete an interview. IDIs were included to expand upon and triangulate information from the FGDs. Participant eligibility criteria included being [1] 18 to 25 years, [2] self-reported HIV-negative or of unknown HIV status, [3] heterosexual vaginal or anal intercourse in the past 6 months, [4] conversant in English or isiZulu, and [5] willing to be audio-recorded. Prior knowledge of PrEP was not required for study recruitment.
Data Collection
Women’s FGDs and IDIs lasted approximately 60 to 90 minutes and took place in a private setting at a public clinic (two FGDs) and community setting (student residences) (four FGDs). Both used a semi-structured agenda with exemplar key questions as “intent statements”, focusing on the following six content areas: [1] women’s knowledge of PrEP; [2] factors that would influence PrEP use; [3] individual barriers to using PrEP; [4] messages that would encourage PrEP use; [5] community barriers and facilitators; and [6] community perceptions of HIV. IDIs explored topics highlighted in FGDS at an individual level, discussing knowledge of, beliefs about, motivators for, and concerns about PrEP in the context of gender, relationships, and PrEP stigma.
Each participant received a small compensation of R50 (~$3.85) for completing the screening, as well as R150 (~$11.55) for participation. IDIs and FGDs were mostly conducted in isiZulu, the primary language of the young women, and some were conducted using a mixture of English and isiZulu for bilingual participants. IDIs and FGDs were facilitated by one interviewer and one research assistant, both female, multi-lingual community members. Sessions were audiotaped, transcribed, and translated into English. All personally identifiable information was removed from transcripts, which were stored on password-protected computers. Ethical approval was obtained from the South Africa Medical Research Council Human Research Ethics Committee and the IRB of the New York State Psychiatric Institute at Columbia University Irving Medical Center.
Data Analysis
Following translation and transcription, data were coded using NVivo 12. The research team iteratively developed a codebook based on the major topics of investigation after discussing the preliminary findings [Table I]. Every IDI and FGD was coded once by a South African team member and once by an American team member. After discussion, coding differences were resolved between team members. The data manager then merged all NVivo files to create one Master File. Each code in the Master File was then summarized and thematically analyzed to create Theme Summaries. The analysis for this paper included the data related to three Theme Summaries: ‘HIV stigma’, ‘Stigma related to sex and sexuality’, and ‘Messages and slogans to use for PrEP messaging’.
Table I:
Codebook Used for Data Analysis of the Women’s IDIs and FGDs
1. Perceptions and Knowledge about PrEP |
1.1. Knowledge of PrEP and other prevention methods |
1.2. Stigma and PrEP |
1.2.1. Stigma related to HIV |
1.2.2. Stigma related to sex and sexuality |
1.3. Notions about PrEP impact |
1.4 Notions about who should take PrEP |
2. Motivations, Uptake, and Access to PrEP |
2.1 Things that might motivate young women to take PrEP |
2.2 Things that might discourage young women from taking PrEP |
2.3 Role of HIV-testing and PrEP |
2.4 Dual Protection and Condom Use |
2.5 Current access to PREP |
3. Young Women’s Lives |
3.1 SRHR Issues that are important to young women |
3.2 Safety of young women (violence and being safe) |
3.3 Roles of young women and community perceptions |
4. Women, Sexuality, and Partnerships |
4.1 Notions about young women’s sexuality not related to PrEP use |
4.2 Notions about male partners perception of PrEP |
4.3 Disclosing to partners |
4.4 Disclosing to Peers and Families |
5. Intervention Pointers |
5.1 Messages and slogans to use for PrEP messaging |
5.2 What young women need to uptake PrEP |
5.3 Community engagement strategies |
5.4 Safe spaces to meet for FGD, intervention groups and access PrEP |
5.5 Ways to administer, store and adhere to PrEP |
5.6 Where should PrEP be administered |
6. Additional Themes |
6.1 Personal Experiences of PrEP |
6.2 Ways for Men to Accept Partner’s PrEP Use |
6.3 Notions about contraceptives |
6.4 Perception of HIV in the Community |
RESULTS
Participant demographics are described in Table II. Participants (n=46) ranged in age from 18 to 25 years. Most women (84.8%) were current students, with all of them having completed secondary education or higher. All women self-reported being HIV-negative, with 91.3% having had an HIV test in the past year. Nearly all (89.1%) participants reported having a current male partner. All women were sexually active, with 15.2% reporting two or more sex partners in the last three months. Over three-quarters of participants (76.1%) had no children, while one quarter (24.9%) had 1 or 2 children. Most participants said they had never used PrEP before, and many had not known about PrEP before the study began. Discussions were framed around perceived barriers and facilitators to their potential uptake of PrEP.
Table II:
Demographic characteristics of 46 women recruited for focus group discussions on PrEP, Durban, South Africa, 2019
Characteristics | N (%) or mean (range) |
---|---|
Age | 21.2 (18–25) |
Student Status | |
Student | 39 (84.8%) |
Not Student | 7 (15.2%) |
Employment Status | |
Employed | 3 (6.5%) |
Unemployed | 43 (93.5%) |
Education | |
Matriculated | 19 (41.3%) |
Post-Secondary | 27 (58.7%) |
Relationship Status | |
Has a Partner | 41 (89.1%) |
Does Not Have a Partner | 4 (8.7%) |
Refused to Answer | 1 (2.2%) |
Number of Children | |
None | 35 (76.1%) |
One or More | 11 (23.9%) |
HIV Testing Status | |
Tested Within the Past Year | 42 (91.3%) |
Tested More than One Year Ago | 3 (6.5%) |
Never Tested | 1 (2.2%) |
# of Sex Partners, Last 3 Months | |
1 or None | 28 (60.9%) |
2 or More | 7 (15.2%) |
Refused to Answer | 11 (23.9%) |
Recruitment Location | |
Community | 30 (65.2%) |
Clinic | 16 (34.8%) |
Three main themes emerged from analysis of the FGD and IDI data regarding women’s perceptions of stigma in relation to oral PrEP. The first theme focuses on fear of community-level HIV stigma as a barrier to PrEP uptake. The second theme relates to worry about community members’ associations between PrEP use and women’s sexuality as a barrier to PrEP uptake. The third theme provides participant suggestions for overcoming community-level stigma and facilitating young women’s PrEP uptake.
HIV Stigma related to PrEP Uptake
In both IDIs and FGDs, women explained that a lack of knowledge in the community about the purpose of PrEP, a relatively new and lesser-known prevention method, could lead community members to falsely assume that women using PrEP are HIV-positive. Respondents suggested the need for community education to reduce misconceptions about PrEP, which could help women overcome their concerns about being viewed as HIV positive and be more willing to initiate PrEP.
Participants expressed concerns that both HIV stigma and a lack of knowledge about PrEP would cause community members to conflate HIV prevention (PrEP) and treatment (ART).
Participants explained that a dearth of knowledge about PrEP in the community meant people would assume PrEP is the same as antiretroviral treatment (ART) for individuals living with HIV. Because PrEP is not well known in these communities, women expressed concern that mention of ART could be interpreted as indicating that a person is living with HIV. When exploring why people would assume that PrEP and ART are the same, young women hypothesized about their similarities: that they both come in pill form and are taken at the same time every day.
You might say you are taking a daily pill to people, and automatically, most people think that a daily pill would be ARVs, because that is the only pill that is taken daily.
(Community FGD Participant, Post-Secondary Student, 22 years)
In an IDI, another participant elaborated on this concern. While she commended the idea of PrEP, when asked about the possibility of her own personal uptake, she feared that HIV stigma “will be a challenge”. (IDI Participant, Post-Secondary, Looking for Work, 23 years)
In some cases, there was confusion between post-exposure prophylaxis (PEP) following sexual assault, PrEP, and HIV itself. This similarity could be due to the side effects associated with both regimens.
I remember when I was taking PEP and I was staying with six people where I was renting. It’s all starts like this by vomiting, being sleepy and nauseous. They will say you are dying because of the virus [HIV].
(Clinic FGD Participant, Post-Secondary Student, 20 years)
Many young women feared the societal label of being HIV-positive or exposed would be enough to prevent them from initiating PrEP.
Women feared that false beliefs about PrEP in the community could lead to the spread of gossip about their HIV status
Many feared that one person’s observation of pill-taking or observing certain symptoms from side effects could eventually become an entire community’s incorrect perception of positive HIV status, damaging the reputation of a PrEP user. This FGD respondent explained that one source of gossip came from mothers, especially in more rural communities.
I think in communities that we come from, there is this pressure from mothers who gather and always discuss more about others. So, as a woman, if I take this thing, tomorrow they will be drinking tea with my name [gossiping].
(Community FGD Participant, Matriculated Student, 20 years)
For one interviewee, false information surrounding her health status— “I think that I might be more affected by the stereotypes”—rivalled physiological side effects of the drug as the main barrier to PrEP uptake. (IDI Participant, Post-Secondary, Looking for Work, 23 years)
Another FGD respondent cited a general sense of lack of confidentiality in clinics as a potential source of false information spread in the community. The system used by the clinic to identify patients seeking HIV-related care, she explained, can be exposing and stigmatizing in itself. She anticipated there being a similar lack of confidentiality when seeking PrEP.
When you go to the clinic, there is a room that is well-known that it is for HIV-positive people. Even the cards that you carry have a particular color. When you go and sit there, you are then known to be HIV-positive.
(Community FGD Participant, Matriculated Student, 18 years)
Overall, the combination of three forces—similarities between ARVs and PrEP, lack of community knowledge of PrEP, and deeply-rooted stigma around HIV—were described by women as having the potential to cause false assumptions of HIV-positive status leading to stigmatizing beliefs about PrEP users that could rapidly spread through tightly-knit communities.
Community Norms and Attitudes Related to Female Sexuality
In addition to expressing concerns about mistakenly being perceived as HIV-positive, participants discussed societal disapproval of young women being sexually active. In a community where premarital sex is widespread but not widely accepted, participants worried that fear of societal judgment and disapproval would challenge PrEP uptake.
Participants expressed concerns that using PrEP would label them as ‘promiscuous’
Participants discussed negative stereotypes in the community about young women being sexually active or having multiple sex partners. Participants were concerned that if they chose to take PrEP, community members might make assumptions about their sexual behavior and hold negative views about them. Participants believed that the location of PrEP at healthcare clinics put them at risk for negative attitudes from clinic staff and providers.
The way you have to get PrEP, if you are to come to the clinic and report that you have come for PrEP, they would have that mind-set of saying, “Hah, she is here for PrEP, then it means that she is sexually active”. There is going to be that issue of, how am I going to get it without anyone knowing about it and without being exposed that I am using PrEP.
(Community FGD Participant, Post-Secondary Student, 19 years)
In another FGD, a young woman feared her PrEP use would be tied to the assumption that she is putting herself in high-risk situations.
Others won’t understand why you are using that (PrEP), they will start judging you and making assumptions that you didn’t conduct yourself well, you’re going around sleeping with everyone.
(Clinic FGD Participant, Post-Secondary Student, Working, 20 years)
Participants reflected on the challenges they faced as young women who might benefit from using PrEP but were worried about how judgments from community members would impact them. One woman described engrained cultural and religious attitudes in their communities as powerful influences on perceptions of young women’s sexuality.
I think, maybe some cultural beliefs, or church at large thinks that you should not have sex before marriage. So, the fact that you want to take this pill, you are considering starting to be sexually active.
(Community FGD Participant, Post-Secondary Student, 18 years)
In another FGD, participants noted the divide between the values of many communities and contemporary norms of young South African women.
People think that as young women, we will always remain virgins. Hence, we do not become transparent that we are no longer virgins and we have partners that are in our lives. We like to be discreet.
(Community FGD Participant, Post-Secondary Student, Working, 20 years)
Young women described that many of these cultural and community beliefs are held and enforced by caregivers such as parents. According to one university student, if her parents found out she was taking PrEP, it would reveal part of her personal life that she would not otherwise share with them.
I am a student and I live at home, I think my parents would, if they were to know that I am taking PrEP, automatically know that I am sexually active (which I don’t think they do), which would raise a lot of questions for them. I am sexually active now, why am I doing this. I’m also an African person and we don’t discuss our sexual activities with our parents so it would get me into trouble.
(IDI Participant, Post-Secondary Student, 23 years)
Participants’ perceptions about community judgments regarding HIV and female sexuality present a tangible barrier to young women’s acquisition of PrEP. In both IDIs and FGDs, young women expressed concern over societal, cultural and familial values of female abstinence. Combined with HIV stigma tied to PrEP use, stigma of female sexuality poses yet another challenge to PrEP uptake.
Participants suggested interventions that could decrease PrEP stigma
Participants had specific recommendations for interventions to disseminate PrEP while overcoming the stigmas related to PrEP. Most participants agreed that “simply having enough knowledge” (Community FGD Participant, Post-Secondary Student, 22 Years) is the first step to decreasing PrEP stigma in their neighbourhoods. Many discussed community education interventions targeted towards “not only just women, but everyone” (Community FGD Participant, Matriculated Student, 18 Years).
A common suggestion for widespread education was mass media: “radio stations that talk about sex, like adverts on TV for Durex, can also discuss PrEP” (Clinic FGD Participant, Post-Secondary Student, 23 Years). It was important to women that educators give “living testimonies” (Clinic FGD Participant, Post-Secondary Student, 19 Years)—meaning that have taken PrEP and can speak about it from first-hand experience. But many FGD participants discussed how knowledge alone is not sufficient in increasing uptake of PREP.
It is also its availability. When it is available in many places, people will see that there is something that is being used.
(Community FGD Participant, Matriculated Student, 18 Years)
Some suggested that PrEP and education about PrEP must be publicly available in a non-medical setting, and “that education should be found at schools and in community halls” (Community FGD Participant, Post-Secondary Student, 22 years). On the contrary, others suggested linking HIV testing and PrEP dissemination with other medical care, such as reproductive health or emergency medicine.
When someone goes to the clinic, to the nurses that you go to, when you are going for injectables (contraception), to prevent pregnancy, they could also tell that person that there is a pill [PrEP].
(Community FGD Participant, Matriculated Student, 18 years)
If a person is in the ward, maybe they caught the flu, they would ask have you tested for HIV, and they could also tell us that there is PrEP here at the clinic.
(IDI Participant, Matriculated Student, 18 years)
One participant who lived in a more rural part of the region urged that PrEP and HIV education be brought to her neighbourhood.
Since I am coming from rural areas, I think it is important that you come and teach us about PrEP. It is important that you touch on all aspects through which we can get HIV.
(Community FGD Participant, Post-Secondary Student, 19 years)
Finally, one participant envisioned a world in which PrEP became the norm and was disseminated from parent to child, eliminating the need to explain PrEP to parents.
I really think that educating parents will be more effective because we also have young sisters who are still growing, who still needs this (PrEP) and they will no longer require to explain to parents. It will be easy for them because by the time those children grow up, and since parents are able to tell when the child is reached a certain stage, she would then introduce her (child) to PrEP and it will not take long for her (child) to get it.
(Community FGD Participant, Post-Secondary Student, Working, 20 years)
Overall, participants suggested diverse strategies to overcome PrEP stigma. Their intervention ideas call for widespread community education and availability outside of clinics to increase the feasibility of PrEP uptake for women in their communities.
DISCUSSION
In this study, young women expressed concern that if they used oral PrEP, they would experience stigma from community members related to being perceived as HIV-positive and engaging in sexual activity. Previous qualitative studies on HIV prevention have separately examined HIV stigma (19,20,25) and sexuality stigma (22,28,40). More recently, studies have highlighted how these two forms of social stigma are historically reinforced and intersectional (12,21), creating barriers for young women who are considering initiating PrEP. The findings from this study reaffirm these ideas, reflecting women’s concerns about community and interpersonal reactions to young women’s PrEP use in KwaZulu-Natal, South Africa, where some of the world’s highest rates of HIV occur for this population. Even among a more highly educated group of urban women, we found that these intersectional social realities are likely to pose challenges for future PrEP uptake.
While the use of PrEP is an individual decision, complex social factors influence potential initiation of the medication (42). Programs to distribute PrEP in South Africa, like DREAMS, have focused on improving education and access to PrEP in adolescent girls and young women (7,8). However, our findings show that even when women know that PrEP is safe and effective, community-level factors often serve as barriers to uptake. In order to address these stigmas related to PrEP, our results demonstrate the need for community-level interventions to address both HIV and sexuality-related stigma (42), such as social marketing campaigns (43), living testimonies from PrEP users (44), and education of service providers, guardians, policy-makers and male partners (45,46). Offering PrEP as part of routine health services was also suggested as an approach to reduce stigma.
One avenue for addressing the HIV stigma surrounding PrEP due to continued public confusion over ARTs and PrEP is to ensure that educational messages clearly distinguish that PrEP is a drug meant for HIV prevention, not treatment. PrEP promotional materials can reduce stigma by emphasizing that PrEP can benefit many sexually active people rather than focusing on ‘individuals at elevated risk’ (9). In addition, given recent clinical trial results and pending full regulatory approval, PrEP will soon be available as a long-acting injectable (47,48). This new route of administration has the potential to reduce both HIV- and sexuality-related stigma because it does not entail daily pill-taking, which can easily be observed by others (49). The availability of different options for PrEP, similar to contraceptive methods, can enhance women’s agency to choose the form that best fits their preferences. In whatever form PrEP is available, women in our study reaffirm that interventions should make it accessible in everyday locations (50,51,52), garner support from peers, partners, and families (26,53), and recognize the reality of sociocultural gender norms (54–57).
Sociocultural norms that stigmatize women’s sexuality are challenging to address because they are often internalized by women. Even among women in this current study, who were educated (58) and health-seeking, this study reveals that anticipated stigma serves as an important potential barrier to PrEP uptake. Also notable was the relative lack of prior knowledge of PrEP, even among this group of educated urban women. To address this, media health literacy campaigns and peer education interventions (44) must include messages to counter these prevailing stereotypes: PrEP should be marketed nationwide as an empowering, effective, and safe HIV prevention mechanism (26,59). In order to support more young women to choose PrEP, there is need for greater understanding about PrEP on behalf of the community members whom young women currently perceive as sources of stigma.
Limitations
One-time focus groups limit the ability to explore themes over time. While the role of the IDIs was to probe further into previously discussed issues, longitudinal group dynamics may provide the capacity for more in-depth thematic exploration. Further, the discussion about PrEP in this study centered around oral PrEP; therefore, these findings do not include attitudes about the other forms of injectable PrEP or the vaginal ring. Future qualitative research will be able to specifically examine women’s attitudes around their potential uptake of PrEP given these new routes of administration.
Conclusion
Our study provides evidence that supports a growing body of literature calling for interventions to identify and minimize multifaceted PrEP stigma as one strategy to promote PrEP among women (18,21,22,60), thereby addressing an important barrier to this effective prevention method. Given the continued severity of South Africa’s HIV epidemic, providing community-level interventions to increase PrEP use by young women and other vulnerable populations is an urgent health care and policy priority.
Acknowledgements
The authors would like to thank the South African research team for their commitment to comprehensive qualitative research, made especially challenging during the pandemic. We especially would like to thank the young women who participated in our interviews and focus groups for deeply and honestly sharing important topics to take into consideration during the next phase of intervention development. Finally, the first author thanks the Brown University School of Public Health and The Fulbright Program for supporting the writing of this manuscript for submission as her Master’s thesis.
Funding:
This study is funded by the National Institute of Mental Health (NIMH) through R34MH11578. Author LM was funded by the National Institute of Allergy and Infectious Diseases of the National Institutes of Health under Award Number T32AI114398. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Footnotes
Competing Interests: The authors have no conflicts of interest to disclose.
Ethical Approval: Ethical approval was obtained from the South Africa Medical Research Council Human Research Ethics Committee and the IRB of the New York State Psychiatric Institute at Columbia University Irving Medical Center.
Consent to Participate: All participants provided written informed consent. All consent forms were read to the participants in their chosen language, and copies were provided. Informed consent was given after they read the information sheet and asked questions.
Data Transparency: Qualitative data are available upon request.
Code Availability: Qualitative node and theme summaries are available upon request.
REFERENCES
- 1.UNAIDS. Global Report on the Global AIDS Epidemic. UNAIDS; 2016. [Google Scholar]
- 2.Abdool Karim SS, Baxter C. HIV incidence rates in adolescent girls and young women in sub-Saharan Africa. The Lancet Global Health. 2019;7(11):e1470–e1471. doi: 10.1016/S2214-109X(19)30404-8 [DOI] [PubMed] [Google Scholar]
- 3.Wand H, Ramjee G. Targeting the hotspots: investigating spatial and demographic variations in HIV infection in small communities in South Africa. J Int AIDS Soc. 2010;13:41. doi: 10.1186/1758-2652-13-41 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Birdthistle I, Tanton C, Tomita A, et al. Recent levels and trends in HIV incidence rates among adolescent girls and young women in ten high-prevalence African countries: a systematic review and meta-analysis. The Lancet Global Health. 2019;7(11):e1521–e1540. doi: 10.1016/S2214-109X(19)30410-3 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5.Shisana O, Rehle T, Simbayi LC, et al. Let Our Actions Count: South Africa’s National Strategic Plan for HIV, TB and STIs 2017–2022. Published 2014. Accessed October 15, 2020. https://www.gov.za/sites/default/files/gcis_document/201705/nsp-hiv-tb-stia.pdf
- 6.Warren CE, Mayhew SH, Hopkins J. The current status of research on the integration of sexual and reproductive health and HIV services. Stud Fam Plann. 2017;48(2):91–105. doi: 10.1111/sifp.12024 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.George G, Cawood C, Puren A, et al. Evaluating DREAMS HIV prevention interventions targeting adolescent girls and young women in high HIV prevalence districts in South Africa: protocol for a cross-sectional study. BMC Women’s Health. Published online 2020. Accessed February 2, 2021. https://bmcwomenshealth.biomedcentral.com/articles/10.1186/s12905-019-0875-2 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8.Chimbindi N, Birdthistle I, Floyd S, et al. Directed and targeted focused multi‐sectoral adolescent HIV prevention: Insights from implementation of the ‘DREAMS Partnership’ in rural South Africa. J Int AIDS Soc. 2020;23(Suppl 5). doi: 10.1002/jia2.25575 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.Bekker L-G, Rebe K, Venter F, et al. Southern African guidelines on the safe use of pre-exposure prophylaxis in persons at risk of acquiring HIV-1 infection. South Afr J HIV Med. 2016;17(1). doi: 10.4102/sajhivmed.v17i1.455 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.South Africa – PrEPWatch. (2022). Retrieved 31 January 2022, from https://www.prepwatch.org/country/south-africa/
- 11.Holmes LE, Kaufman MR, Casella A, et al. Qualitative characterizations of relationships among South African adolescent girls and young women and male partners: implications for engagement across HIV self-testing and pre-exposure prophylaxis prevention cascades. J Int AIDS Soc. 2020;23 Suppl 3:e25521. doi: 10.1002/jia2.25521 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Jani N, Mathur S, Kahabuka C, Makyao N, Pilgrim N. Relationship dynamics and anticipated stigma: Key considerations for PrEP use among Tanzanian adolescent girls and young women and male partners. PLOS ONE. 2021;16(2):e0246717. doi: 10.1371/journal.pone.0246717 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Rubincam C, Newman PA, Atujuna M, Bekker L-G. “Why would you promote something that is less percent safer than a condom?”: Perspectives on partially effective HIV prevention technologies among key populations in South Africa. SAHARA J. 2018;15(1):179–186. doi: 10.1080/17290376.2018.1536561 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14.Giovenco D, Kuo C, Underhill K, Hoare J, Operario D. “The time has arrived”: perceptions of behavioral adjustments in the context of pre-exposure prophylaxis availability among adolescents in South Africa. AIDS Educ Prev. 2018;30(6):463–473. doi: 10.1521/aeap.2018.30.6.463 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15.Scorgie F, Khoza N, Baron D, et al. Disclosure of PrEP use by young women in South Africa and Tanzania: qualitative findings from a demonstration project. Cult Health Sex. 2021;23(2):257–272. doi: 10.1080/13691058.2019.1703041 [DOI] [PubMed] [Google Scholar]
- 16.Giovenco D, Gill K, Fynn L, et al. Experiences of oral pre-exposure prophylaxis (PrEP) use disclosure among South African adolescent girls and young women and its perceived impact on adherence. PLOS ONE. 2021;16(3):e0248307. doi: 10.1371/journal.pone.0248307 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17.Beesham I, Heffron R, Evans S, et al. Exploring the use of oral pre-exposure prophylaxis (PrEP) among women from durban, south africa as part of the hiv prevention package in a clinical trial. AIDS Behav. 2021;25(4):1112–1119. doi: 10.1007/s10461-020-03072-0 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18.Calabrese SK, Underhill K. How stigma surrounding the use of HIV pre-exposure prophylaxis undermines prevention and pleasure: A call to destigmatize “Truvada Whores.” Am J Public Health. 2015;105(10):1960–1964. doi: 10.2105/AJPH.2015.302816 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19.Armstrong-Mensah E, Hernandez P, Huka M, et al. HIV stigma among women and adolescent girls in South Africa: removing barriers to facilitate prevention. MJA. 2019;3(1):69–74. doi: 10.18689/mja-1000112 [DOI] [Google Scholar]
- 20.Golub SA. PrEP stigma: implicit and explicit drivers of disparity. Curr HIV/AIDS Rep. 2018;15(2):190–197. doi: 10.1007/s11904-018-0385-0 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21.Calabrese SK, Dovidio JF, Tekeste M, et al. HIV pre-exposure prophylaxis stigma as a multidimensional barrier to uptake among women who attend Planned Parenthood. J Acquir Immune Defic Syndr. 2018;79(1):46–53. doi: 10.1097/QAI.0000000000001762 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 22.Haire BG. Preexposure prophylaxis-related stigma: strategies to improve uptake and adherence – a narrative review. HIV AIDS (Auckl). 2015;7:241–249. doi: 10.2147/HIV.S72419 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 23.Emmanuel G, Folayan M, Undelikwe G, et al. Community perspectives on barriers and challenges to HIV pre-exposure prophylaxis access by men who have sex with men and female sex workers access in Nigeria. BMC Public Health. 2020;20(1):69. doi: 10.1186/s12889-020-8195-x [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24.Maseko B, Hill LM, Phanga T, et al. Perceptions of and interest in HIV pre-exposure prophylaxis use among adolescent girls and young women in Lilongwe, Malawi. PLOS ONE. 2020;15(1):e0226062. doi: 10.1371/journal.pone.0226062 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 25.Pantelic M, Casale M, Cluver L, Toska E, Moshabela M. Multiple forms of discrimination and internalized stigma compromise retention in HIV care among adolescents: findings from a South African cohort. Journal of the International AIDS Society. 2020;23(5):e25488. doi: 10.1002/jia2.25488 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 26.Velloza J, Khoza N, Scorgie F, et al. The influence of HIV-related stigma on PrEP disclosure and adherence among adolescent girls and young women in HPTN 082: a qualitative study. J Int AIDS Soc. 2020;23(3):e25463. doi: 10.1002/jia2.25463 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 27.Harrison A. Hidden Love: Sexual ideologies and relationship ideals among rural South African adolescents in the context of HIV/AIDS. Culture, Health and Sexuality 2008; 10(2): 175–89. https://www-tandfonline-com.revproxy.brown.edu/doi/full/10.1080/13691050701775068 [DOI] [PubMed] [Google Scholar]
- 28.Jewkes R, Morrell R. Gender and sexuality: emerging perspectives from the heterosexual epidemic in South Africa and implications for HIV risk and prevention. J Int AIDS Soc. 2010;13:6. doi: 10.1186/1758-2652-13-6 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 29.HEAIDS, 2010. HIV prevalence and related factors – higher education sector study, South Africa, 2008–2009. Pretoria: Higher Education South Africa [Google Scholar]
- 30.Hoffman S, Levasseur M, Mantell JE, et al. Sexual and reproductive health risk behaviors among South African university students: results from a representative campus-wide survey. Afr J AIDS Res. 2017;16(1):1–10. doi: 10.2989/16085906.2016.1259171 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 31.Baral S, Logie CH, Grosso A, Wirtz AL, Beyrer C. Modified social ecological model: a tool to guide the assessment of the risks and risk contexts of HIV epidemics. BMC Public Health. 2013;13(1):482. doi: 10.1186/1471-2458-13-482 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 32.Khuzwayo N, Taylor M. Exploring the socio-ecological levels for prevention of sexual risk behaviours of the youth in uMgungundlovu District Municipality, KwaZulu-Natal. African Journal of Primary Health Care & Family Medicine. 2018;10(1):1–8. doi: 10.4102/phcfm.v10i1.1590 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 33.Turan JM, Elafros MA, Logie CH, et al. Challenges and opportunities in examining and addressing intersectional stigma and health. BMC Medicine. 2019;17(1):7. doi: 10.1186/s12916-018-1246-9 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 34.Larson E, George A, Morgan R, Poteat T. 10 Best resources on… intersectionality with an emphasis on low- and middle-income countries. Health Policy Plan. 2016. Oct;31(8):964–9. doi: 10.1093/heapol/czw020. Epub 2016 Apr 27. [DOI] [PubMed] [Google Scholar]
- 35.Durban Population 2020 (Demographics, Maps, Graphs). Published 2020. Accessed October 22, 2020. https://worldpopulationreview.com/world-cities/durban-population
- 36.Coovadia H, Jewkes R, Barron P, Sanders D, McIntyre D. The health and health system of South Africa: historical roots of current public health challenges. The Lancet. 2009;374(9692):817–834. doi: 10.1016/S0140-6736(09)60951-X [DOI] [PubMed] [Google Scholar]
- 37.Bradshaw D, Nannan NN, Pillay-van Wyk V, Laubscher R, Groenewald P, Dorrington RE. Burden of disease in South Africa: Protracted transitions driven by social pathologies. South African Medical Journal. 2019;109(11b), 69–76. 10.7196/SAMJ.2019.v109i11b.14273 [DOI] [PubMed] [Google Scholar]
- 38.Kalonji D, Mahomed OH. Health system challenges affecting HIV and tuberculosis integration at primary healthcare clinics in Durban, South Africa. Afr J Prim Health Care Fam Med. 2019;11(1). doi: 10.4102/phcfm.v11i1.1831 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 39.Mbewe L, Govender E. Male partners’ influence on women’s acceptance and use of PrEP products across two high HIV-burdened districts in South Africa. Afr J AIDS Res. 2020;19(2):93–100. doi: 10.2989/16085906.2020.1727932 [DOI] [PubMed] [Google Scholar]
- 40.Scorgie F, Khoza N, Delany-Moretlwe S, et al. Narrative sexual histories and perceptions of HIV risk among young women taking PrEP in southern Africa: Findings from a novel participatory method. Soc Sci Med. 2021;270:113600. doi: 10.1016/j.socscimed.2020.113600 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 41.Govender E, Mansoor L, MacQueen K, Abdool Karim Q. Secrecy, empowerment and protection: positioning PrEP in KwaZulu-Natal, South Africa. Cult Health Sex. 2017;19(11):1268–1285. doi: 10.1080/13691058.2017.1309682 [DOI] [PubMed] [Google Scholar]
- 42.Stangl AL, Lloyd JK, Brady LM, Holland CE, Baral S. A systematic review of interventions to reduce HIV-related stigma and discrimination from 2002 to 2013: how far have we come? J Int AIDS Soc. 2013;16(3Suppl 2):18734. doi: 10.7448/IAS.16.3.18734 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 43.Potts LC, Henderson C. Evaluation of anti-stigma social marketing campaigns in Ghana and Kenya: Time to Change Global. BMC Public Health 21, 886 (2021). 10.1186/s12889-021-10966-8 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 44.Committee on the Science of Changing Behavioral Health Social Norms; Board on Behavioral, Cognitive, and Sensory Sciences; Division of Behavioral and Social Sciences and Education; National Academies of Sciences, Engineering, and Medicine. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington (DC): National Academies Press (US); 2016. Aug 3. 4, Approaches to Reducing Stigma. Available from: https://www.ncbi.nlm.nih.gov/books/NBK384914/ [PubMed] [Google Scholar]
- 45.Potts LC, Henderson C. Evaluation of anti-stigma social marketing campaigns in Ghana and Kenya: Time to Change Global. BMC Public Health 21, 886 (2021). 10.1186/s12889-021-10966-8 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 46.Stangl AL, Earnshaw VA, Logie CH, et al. The Health Stigma and Discrimination Framework: a global, crosscutting framework to inform research, intervention development, and policy on health-related stigmas. BMC Med 17, 31 (2019). 10.1186/s12916-019-1271-3 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 47.World Health Organization. European Medicines Agency (EMA) approval of the dapivirine ring for HIV prevention for women in high HIV burden settings. Published 2020. Accessed February 2, 2021. https://www.who.int/news/item/24-07-2020-european-medicines-agency-(ema)-approval-of-the-dapivirine-ring-for-hiv-prevention-for-women-in-high-hiv-burden-settings
- 48.Landovitz RJ, Li S, Eron JJ, et al. Tail-phase safety, tolerability, and pharmacokinetics of long-acting injectable cabotegravir in HIV-uninfected adults: a secondary analysis of the HPTN 077 trial. Lancet HIV. 2020;7(7):e472–e481. doi: 10.1016/S2352-3018(20)30106-5 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 49.Montgomery ET, Atujuna M, Krogstad E, et al. The invisible product: Preferences for sustained-release, long-acting pre-exposure prophylaxis to HIV among South African youth. J Acquir Immune Defic Syndr. 2019;80(5):542–550. doi: 10.1097/QAI.0000000000001960 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 50.Sharma M, Chris A, Chan A, et al. Decentralizing the delivery of HIV pre-exposure prophylaxis (PrEP) through family physicians and sexual health clinic nurses: a dissemination and implementation study protocol. BMC Health Serv Res. 2018;18(1):513. Published 2018 Jul 3. doi: 10.1186/s12913-018-3324-2 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 51.Charest M, Sharma M, Chris A, Schnubb A, Knox DC, et al. (2021) Decentralizing PrEP delivery: Implementation and dissemination strategies to increase PrEP uptake among MSM in Toronto, Canada. PLOS ONE 16(3): e0248626. 10.1371/journal.pone.0248626 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 52.Bassett IV, Govere S, Millham L, et al. Contraception, HIV Services, and PrEP in South African Hair Salons: A Qualitative Study of Owner, Stylist, and Client Perspectives. J Community Health. 2019;44(6):1150–1159. doi: 10.1007/s10900-019-00698-7 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 53.Soto-Torres L, Laborde N, Mathebula F, et al. Male partner influence on women’s HIV prevention trial participation and use of pre-exposure prophylaxis: the importance of “understanding.” Published online April 30, 2015. Accessed October 15, 2020. https://www.rti.org/publication/male-partner-influence-womens-hiv-prevention-trial-participation-and-use-pre-exposure [DOI] [PMC free article] [PubMed]
- 54.Starks TJ, Payton G, Golub SA, Weinberger CL, Parsons JT. Contextualizing condom use: intimacy interference, stigma, and unprotected sex. J Health Psychol. 2014;19(6):711–720. doi: 10.1177/1359105313478643 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 55.Pilgrim N, Mathur S, Gottert A, Rutenberg N, Pulerwitz J. Building Evidence to Guide PrEP Introduction for Adolescent Girls and Young Women. Population Council; 2016. doi: 10.31899/hiv7.1008 [DOI] [PubMed] [Google Scholar]
- 56.Miller L, Morar N, Kapiga S, Ramjee G, Hayes R. Prevention, partners, and power imbalances: women’s views on how male partners affected their adherence to vaginal microbicide gels during HIV prevention trials in Africa. J Acquir Immune Defic Syndr. 2020;85(4):458–465. doi: 10.1097/QAI.0000000000002463 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 57.Miller L, Morar N, Kapiga S, Ramjee G, Hayes R. Women design their own vaginal microbicide trial: Suggestions on how to improve adherence from former participants of HIV prevention trials. PLoS One. 2021;16(1):e0244652. doi: 10.1371/journal.pone.024452 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 58.Statistics South Africa, ed. Educational Enrolment and Achievement, 2016. Statistics South Africa; 2017. [Google Scholar]
- 59.Bärnighausen KE, Matse S, Kennedy CE, et al. “This is mine, this is for me”: Pre-exposure prophylaxis as a source of resilience among women in Eswatini. AIDS. 2019;33 Suppl 1:S45–S52. doi: 10.1097/QAD.0000000000002178 [DOI] [PubMed] [Google Scholar]
- 60.Montgomery ET, Roberts ST, Nel A, et al. Social harms in female-initiated HIV prevention method research: state of the evidence. AIDS. 2019;33(14):2237–2244. doi: 10.1097/QAD.0000000000002346 [DOI] [PMC free article] [PubMed] [Google Scholar]