Community perspectives on HIV, violence and health surveillance in rural South Africa: a participatory pilot study

BACKGROUND: South Africa faces a complex burden of disease consisting of infectious and non–communicable conditions, injury and interpersonal violence, and maternal and child mortality. Inequalities in income and opportunity push disease burdens towards vulnerable populations, a situation to which the health system struggles to respond. There is an urgent need for health planning to account for the needs of marginalized groups in this context. The study objectives were to develop a process to elicit the perspectives of local communities in the established Agincourt health and socio-demographic surveillance site (HDSS) in rural north–east South Africa on two leading causes of death: HIV/AIDS and violent assault, and on health surveillance as a means to generate information on health in the locality. METHODS: Drawing on community–based participatory research (CBPR) methods, three village–based groups of eight participants were convened, with whom a series of discussions were held to identify and define the causes of, treatments for, and problems surrounding, deaths due to HIV/AIDS and violent assault. The surveillance system was also discussed and recommendations generated. The discussion narratives were the main data source, examined using framework analysis. RESULTS: The groups identified a range of social and health systems issues including risky sexual health behaviors, entrenched traditional practices, alcohol and substance abuse, unstable relationships, and debt as causative. Participants also explained how compromised patient confidentiality in clinics, insensitive staff, and a biased judicial system were problematic for the treatment and reporting of both conditions. Views on health surveillance were positive. Recommendations to strengthen an already well–functioning system related to maintaining confidentiality and sensitivity, and extending ancillary care obligations. CONCLUSION: The discussions provided information not available from other sources on the social and health systems processes through which access to good quality health care is constrained in this setting. On this basis, further CBPR in routine HDSS to extend partnerships between researchers, communities and health authorities to connect evidence with the means for action is underway.