Elsevier

The Lancet HIV

Volume 7, Issue 12, December 2020, Pages e825-e834
The Lancet HIV

Articles
PrEP awareness and engagement among transgender women in South Africa: a cross-sectional, mixed methods study

https://doi.org/10.1016/S2352-3018(20)30119-3Get rights and content

Summary

Background

The South African national HIV plan recommends pre-exposure prophylaxis (PrEP) for transgender women, whose HIV prevalence estimates are as high as 25% in sub-Saharan Africa. The aim of this study was to explore PrEP awareness, uptake, and willingness, as well as associated barriers and facilitators, in order to inform PrEP implementation efforts with transgender women in South Africa.

Methods

Using a community-engaged, convergent parallel mixed methods design, trained local transgender women data collectors recruited 213 transgender women participants (aged >18 years, assigned male sex at birth, and identifying as a gender different from male), via network referral and word-of-mouth in Cape Town, East London, and Johannesburg. A subset of 36 transgender women also participated in qualitative in-depth interviews. Quantitative analyses included descriptive statistics and negative binomial regression models to assess correlates of PrEP willingness. Qualitative interviews were audio-recorded, transcribed verbatim, and coded. Thematic content analysis was used to identify key themes. Quantitative and qualitative data were integrated for interpretation.

Findings

Participants were recruited between June 1 and Nov 30, 2018. 57 (45%) of 127 HIV-negative participants were PrEP-aware and only 14 (11%) of 129 were currently taking PrEP. HIV-negative participants experiencing social (eg, violence, poverty) and interpersonal (eg, discrimination, low transgender women community connectedness) hardship reported PrEP awareness more frequently than HIV-negative transgender women who did not. Willingness to take PrEP was low, at 56 (55%) of 102, among HIV-negative participants who were not currently taking PrEP, and negatively associated with transgender women community connectedness (multivariable prevalence ratio 0·87; 95% CI 0·77–0·99). Barriers to PrEP included taking a daily pill, side-effects, and cost. Participants urged greater education and engagement of transgender women in PrEP implementation.

Interpretation

South Africa is poised to scale up PrEP services for transgender women. Dedicated transgender clinics are planned to provide comprehensive care, including PrEP, for transgender women. It is critical to ensure transgender women are aware of and have accurate information about PrEP, and that health-care sites are prepared to provide quality care for transgender women.

Funding

Gilead Sciences.

Introduction

South Africa has the largest HIV epidemic in the world with an HIV prevalence of 20·4%. The nation accounts for a third of all new HIV infections in southern Africa.1 While specific HIV prevalence estimates for transgender people in South Africa are not yet available, global data show that the HIV burden among transgender women (women assigned male at birth) is high.2 A study of 929 transgender women in eight sub-Saharan African countries found an HIV prevalence of 25%.3 Compared with men who have sex with men (MSM), transgender women were twice as likely to have HIV and half as likely to report condom use during their most recent receptive anal sex act.3 Transgender women have unique and multilevel HIV vulnerabilities, including high frequency of receptive anal sex,3 participation in high risk sexual partnerships,4 substance use, socioeconomic hardship, and widespread violence, stigma, and social exclusion.5, 6 Gender-identity-related discrimination often operates as a barrier to health-care access and might deter uptake of health services, including biomedical HIV prevention interventions.7, 8

Pre-exposure prophylaxis (PrEP) is a highly effective biomedical HIV prevention method recommended by WHO for individuals at substantial risk for HIV acquisition.9 In December, 2015, South Africa became the first country in sub-Saharan Africa to approve daily oral PrEP fully.10 The 2017–22 South African National Strategic Plan for HIV, Tuberculosis, and Sexually Transmitted Infections specifically recommends daily oral PrEP for transgender people,11 and 20 PrEP demonstration projects have been launched in South Africa.12 Four clinics dedicated to transgender health care planned for Cape Town, East London, Johannesburg, and Port Elizabeth will be a first for the country.13 These clinics intend to provide comprehensive services, including PrEP. However, optimal approaches for engaging transgender women in PrEP are largely unstudied in South Africa. The purpose of this study was to explore PrEP awareness, uptake, and willingness among South African transgender women, and to identify barriers to and facilitators of PrEP implementation efforts.

Research in context

Evidence before this study

Before doing this study, the authors considered multiple sources of information about pre-exposure prophylaxis (PrEP) among transgender women in South Africa. We read the South African National Strategic Plan for HIV, Tuberculosis, and Sexually Transmitted Infections and examined the AVAC: Global Advocacy for HIV Prevention website to identify existing PrEP demonstration and implementation studies in South Africa. We reviewed the published literature on PrEP among transgender women up to March 31, 2018, by searching PubMed, PsycINFO, and CINAHL using MESH terms for transgender and PrEP. We did not limit by language or time period, and we excluded any studies that did not provide disaggregated information specific to transgender women and PrEP. The published literature indicated a high HIV burden in the general population in the region (20·4% in South Africa) and even higher among transgender women in sub-Saharan Africa (25%) but estimates of HIV prevalence among transgender women in South Africa were not available. We found that South Africa was the first sub-Saharan country to approve PrEP fully and had explicit plans to scale up PrEP for priority populations, including transgender women. Multiple demonstration projects had been implemented but none solely focused on transgender populations. We were unable to find any data on PrEP engagement, barriers, or facilitators of PrEP among transgender women in South Africa.

Added value of this study

This study fills an important gap in knowledge about HIV and PrEP among transgender women in South Africa, a priority population for PrEP implementation. In addition to providing information on the proportion of transgender women who are aware of PrEP and engagement in the PrEP continuum, this study provides qualitative and quantitative data on factors associated with PrEP awareness, barriers and facilitators to PrEP uptake and adherence, and community-derived recommendations for improving PrEP access and uptake for transgender women in South Africa. These data are particularly timely given the planned initiation of dedicated transgender health-care clinics in the three cities where data were collected.

Implications of all the available evidence

PrEP awareness, willingness, and uptake are low among transgender women in South Africa. Transgender women who felt connected to a transgender community were less likely to be willing to take PrEP, indicating a need to address specific barriers within transgender women communities. Additionally, misunderstandings about PrEP's mechanism of action, side-effects, and difference from post-exposure prophylaxis highlight the need to disseminate accurate information to transgender women. In addition to raising awareness about PrEP, it will be important to address structural barriers to access such as cost, stigma against transgender people, and distance to health-care facilities. Networks for transgender women can be leveraged in innovative ways to support accurate PrEP knowledge dissemination, uptake, and adherence. Future research specifically with transgender women is needed to evaluate effectiveness and acceptability of new and pipeline PrEP interventions for this population.

This research is responsive to calls by global transgender-led organisations to centre transgender voices and conduct research with transgender women that does not conflate them with MSM.14, 15 Importantly, this study aligns with efforts to advocate for meeting the needs of transgender women in the international HIV response while promoting their health and human rights.15

Section snippets

Study design and participants

Investigators from South Africa and the USA jointly led the research team with community–academic partnerships between Social Health Empowerment Feminist Collective of Transgender Women of Africa (SHE), Human Sciences Research Council, and Johns Hopkins University. The team was diverse in gender identity, race, nationality, and sexual orientation. Quantitative data were collected by six South African transgender women (two per city) who lived in the communities where participants were

Results

Participants were recruited between June 1 and Nov 30, 2018. 213 valid surveys were completed. Surveys were designed to take 40–60 min and those that were completed in less than 20 min were considered invalid and excluded from analysis. Less than 5% of data were missing for most variables; 11% were missing for PrEP willingness. Survey participants were young, most identified as black, and most had completed secondary school or less (table 1). A quarter were unemployed and more than half had an

Discussion

We observed low PrEP awareness and willingness among HIV-negative transgender women. A higher proportion of transgender women experiencing hardship were aware of PrEP than transgender women who were not, suggesting that PrEP messages might be reaching transgender women with structural vulnerabilities. While many qualitative interview participants expressed PrEP willingness, this small non-representative sub-sample included a large proportion of HIV-positive transgender women who expressed

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