Co-creating a community health research agenda with a youth advisory group in rural Cambodia: process, involvement, and outcomes
Abstract
Background Global health research priority-setting is frequently dominated by funders and researchers from high-income countries, with limited opportunities for meaningful input from the communities affected. The Youth Advisory Group for Health and Research Engagement (YAGHRE) have shown promise as a mechanism for bridging this gap. This study reports on a participatory process through which YAGHRE members in Siem Pang, Cambodia, co-created a community-driven research agenda based on community conversations on health priorities and challenges and opportunities for risk factor modification. Methods In addition to prior training in qualitative research, YAGHRE members received specific training on the topic and accompanying methodological techniques, which helped them co-develop and pilot the interview and FGD guides together with the team. One of the challenges YAGHRE members identified was that they initially perceived themselves to lack the subject-matter knowledge to ask appropriate probing questions when exploring topics iteratively, which was resolved through on-site refresher training on key health topics. YAGHRE members conducted two rounds of semi-structured individual interviews with 15 community members of diverse backgrounds. Between interview rounds, community members completed a digital diary exercise, using photographs and videos to document health-related habits and exposures. All members took part on one of three focus group discussions (FGDs) which enabled group synthesis of priority health concerns, risk factors, and future research questions. All interviews were conducted in Khmer, transcribed, translated into English, and analysed thematically using the open-source qualitative data analysis software Taguette. Results YAGHRE members felt they had a substantial involvement in the research exercise aimed to identifying priority health concerns, which may have given them a progressively greater sense of confidence, reflected in their subsequent discussions and data interpretation. Community members identified a dual burden of infectious diseases and non-communicable diseases (NCDs). Although typhoid fever was mentioned most frequently overall, dengue fever was perceived as the most serious infectious disease, characterised by severe illness, prolonged hospitalisation, and substantial treatment costs. Among NCDs, diabetes and hypertension were identified as rising concerns, particularly among middle-aged and older community members, with socio-cultural dietary practices (high salt and fat intake) frequently cited as contributing factors. In group-based ranking exercises (where 0= “Not concerned, does not affect me” to 10 = “Very concerned, affects my daily life”), diabetes (9.1/10), hypertension (8.7/10), and dengue fever (8.0/10) were most concerning. Diabetes prevalence was ranked as the highest-priority research question for the community. Conclusions This study demonstrates that youth advisory groups can meaningfully lead community-based participatory research processes in low-resource settings, identifying locally relevant health priorities that can inform future research agendas. The approach represents a model for shifting power in global health research priority-setting from external institutions toward the communities they serve.
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