Lessons learned from an HIV-related participatory research project with young women in Lesotho

Introduction: The need to collaborate with community partners has long been considered essential for achieving sustainable HIV prevention and treatment. While the level of youth engagement in research varies by project, it is important that youth collaboration and partnership is meaningful and measurable. We previously conducted a survey that aimed to assess the acceptability of providing SRH/HIV services for young women at hair salons in Lesotho. The survey relied on participatory research with several community partners who were fundamental to its implementation. This study reports on the lessons learned from these participatory processes. Methods: The Hair SALON survey was conducted in Lesotho between December 2023 and August 2024. For the present study, we used the Report of Engagement in Community Research (REACH) tool to systematically define the various depths of engagement of stakeholders at different stages of the research. In addition, we conducted semi-structured individual interviews with the four young community partners who were involved as the Hair Salon Expert Group (HSEG) throughout the project, and a subset of six stylists who helped enroll clients to fill in the questionnaires. The audio-recorded interviews were transcribed, translated, and coded using thematic analysis. Results: Challenges to engagement with the research project included the lack of full understanding of the project team's expectations (for the HSEG), and difficulty engaging potential participants due to mistrust and the sensitive content of the project (for the stylists). As possible mitigation strategies, interviewees suggested developing better community dissemination efforts prior to the project start, and providing more training to the community partners. Facilitators for engagement included multiple altruistic, professional development, and material incentives. Conclusions: Our findings highlight that a participatory approach across all research phases is feasible and that various facilitators - beyond material incentives - motivate youth community partners to be part of such a project. However, some barriers remain. It is important to increase efforts to clarify community partners' roles and responsibilities beyond written agreements, which in turn improves their perceived ownership of the research.