Engaging transgender women in HIV research in South Africa

Abstract

The Botshelo Ba Trans study was the first HIV bio-behavioral survey conducted with transgender women in South Africa. Engaging research with marginalized communities requires clear points of entry, reference points for understanding the internal culture, and establishing trust and understanding. The community-based participatory research approach guided the development and implementation of this study. We conducted a rapid qualitative and pre-surveillance formative assessment between August 2017 to January 2018 and a bio-behavioral survey between July 2018 and March 2019. At the start, a Steering Committee, comprising primarily of transgender women, was established and subsequently provided substantial input into the mixed methods study conducted in Buffalo City, Cape Town, and Johannesburg. Key to the study's success was building trust and establishing ownership of the survey by transgender women recognized as expert knowledge holders. Thus, a community-based participatory research-informed approach enhanced the validity of the data and ensured that we addressed relevant issues.

Keywords: Community engagement; Community-based participatory research; HIV research; Marginalized communities; South Africa; Transgender women.

Fig. 1

CBPR approach used in the Botshelo Ba Trans Study. This figure presents a description of the CBPR approach used in the Botshelo Ba Trans Study. Even though the CBPR approach used in this study is represented in a sequence of steps, the basic cycle emphasizes a circular flow, rather than a sequence of steps following on from each other. Step 1 entailed building community engagement and establishing ownership of the study. Activities that inform this step included the following: establishment of a Steering Committee; engaging in social events/activities with transgender women to engage with members of the community; whilst the third activity which was instrumental to establishing ownership of the study was the selection of a name for the study. Step 2 involved engaging with transgender women as cultural insiders. Specific activities that informed Step 2 included having TGW as part of the core research team and essential members of the implementation team and importantly having a TGW as a co-investigator on the study. Step 3 entailed establishing trusting relationships between TGW and researchers. Part of this step involved co-learning and capacity building