Trust, respect and reciprocity underlie the preferred ways of community engagement in HIV biomedical research: findings from a qualitative investigation in India

BACKGROUND: Meaningful community engagement (CE) in HIV prevention research is crucial for the study's success and is an ethical obligation. We used data from a qualitative study to identify expressed and implicit reasons behind community representatives' preferred ways of CE in HIV biomedical research/trials.
METHODS: This exploratory qualitative study was conducted in partnerships with seven NGOs and communtiy advocates. NGOs helped in recruiting a purposive sample (maximum variation sampling) of diverse participants from key populations such as men who have sex with men, transgender women, people who inject drugs and female sex workers, and general populations (adults, adolescents/youths). We conducted eleven virtual focus groups between July and October 2021. Data were explored from a critical realist perspective, using framing analysis (examining how the participants framed the narratives). The analytical focus was on 'why' the participants wanted particular kinds of CE.
RESULTS: Participants' narratives unfolded both explicit and implicit reasons for the preferred types of CE. Trust was a central theme: trust on the sponsors based on their reputation/credibility, trust on the study as it was endorsed by trusted NGOs, and trust based on how the communities were engaged (as community advisory board/CAB members, and/or as field research staff). Trust seemed higher with diverse CAB (e.g., diversity in gender, socioeconomic status) as diversity was seen to allow/encourage diverse opinions. Participants' expectations regarding capacity building of CAB members (improving decision-making skills) and field research staff (community members co-producing knowledge) reflect actions that could increase trust. Other preferred CE activities seemed to symbolize respect and dignity: e.g., providing appropriate monetary compensation, constituting formal community review/monitoring mechanisms. Reciprocity was inferred by the importance placed on exploring communities' needs, sharing the findings with communities, and using the findings to inform policies/programs, in collaboration with communities. Transparent communication with communities was explicitly stated as critical for gaining and maintaining trust.
CONCLUSIONS: Trust, dignity, respect, and reciprocity underlie community representatives' preferred ways of CE. For researchers and sponsors, this means that CE is not to be seen as a checklist of activities to be done, but whether those activities convey dignity and respect, demonstrate reciprocity, and gain and maintain trust.

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