Beyond participation: rethinking ethics of community-led HIV research from the lived experiences of community researchers in Jakarta, Indonesia
Social and behavioural aspects and approaches to HIV prevention and living with HIV
E-poster submission to AIDS 2026, the 26th International AIDS Conference at Rio de Janeiro, Brazil in 27-31 July 2026. PPH UAJ participated virtually.
Made Diah Putri Negara, Wawa A. Reswana, Aan S. Rianto, Wulan Surani, Ansel Editta, Yuli Santoso, Amalia Puri Handayani, Gaby Gabriela Langi, Gracia Valeska Simanullang
Background
The community-based participatory research is increasingly being used in HIV research to ensure that HIV key populations are involved as knowledge producers, not merely as research subjects. This approach has been shown to improve the relevance of findings, participants’ trust, and evidence-based advocacy. However, attention to the psychological impact experienced by HIV community researchers remain limited.
In participatory and in-depth qualitative research, HIV community researchers are often exposed to narratives of violence, stigma, and loss. As the result, this exposure could trigger secondary trauma. This vulnerability rises from their position as insiders with shared life experiences, particularly in the context of the Global South, which is fraught with moralistic norms and unequal power dynamics.
This study aims to explore the experiences of HIV community researchers’ involvement and identify the forms of secondary trauma that arise.
Method
This study used participatory qualitative design and was conducted from August to November 2025.
Representatives of key populations of HIV and people living with HIV were involved as co-researchers.
Data were collected through three focus group discussions with 22 HIV community researchers in the Greater Jakarta area.
Data, then, analyzed thematically using the Secondary Traumatic Stress Framework.
Results
Participants have a diverse experience as community researchers, enumerators, facilitators, and transcribers.
The involvement of HIV community researchers is most dominant in the data collection stage, with less engagement in planning, analysis, writing, and dissemination. Thus, leads to tokenism and a lack of structural recognition of community contributions. Repeated exposure to stories of gender-based violence, HIV stigma, identity discrimination, and structural poverty triggers emotional exhaustion, anxiety, re-traumatization, sleep disorders, compassion fatigue, and avoidance.
Interviewers, transcribers, and data analysts are all at risk of secondary trauma, which is exacerbated by a lack of trauma-informed training, debriefing spaces, and psychological support networks.
Conclusion
This study emphasizes that community involvement in HIV research should be understood not only as a methodological strategy, but also as an ethical practice that requires protection of the welfare of community researchers.
The integration of trauma-informed principles, including training, peer support, recovery mechanisms, is essential to ensuring research processes that are fair, sustainable, and actually benefit the community.