A range of social and health issues relating to two leading causes of death (HIV/AIDS and violent assault), identified via community-based participatory methods, led to recommendations to strengthen health systems' confidentiality, sensitivity and ancillary care obligations.
Problems and Purpose
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.
Background History and Context
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.
Organizing, Supporting, and Funding Entities
The study setting was the Medical Research Council (MRC)/ Wits Rural Public Health and Health Transitions Research Unit in rural northeastern South Africa, which oversees the Agincourt Heath and Socio–Demographic Surveillance Site (HDSS).
The analysis was supported by Health Systems Research Initiative Development Grant from DFID/MRC/Wellcome Trust/ESRC (MR/N005597/1). The fieldwork was completed with the Umeå Centre for Global Health Research, with support from FORTE: Swedish Council for Health, Working Life and Welfare (grant No. 2006–1512). The Agincourt HDSS is supported by the School of Public Health, University of the Witwatersrand, South African Medical Research Council and the Wellcome Trust, UK (Grants 058893/Z/99/A; 069683/Z/02/Z; 085477/Z/08/Z; 085477/B/08/Z)
Participant Recruitment and Selection
Three villages were selected in the surveillance area in which to convene the discussion groups on the basis of demographic variation and feasibility within the time and resources available. Agincourt Learning, Information dissemination and Networking with Communities (LINC) staff then approached women of reproductive age, family members, traditional healers, religious leaders, community health volunteers, health workers, village officials, and community leaders in villages to convene discussion groups that broadly represented the community. To mitigate against any potential bias as for result of social and power differentials in the groups, the group consisted of women only in one village.
An introductory meeting was held where the purpose, planned activities and outputs of the study were described. Those willing to participate were enrolled, written consent was taken and written information on the study was provided. A total of 24 participants were recruited into three village–based groups of eight participants, which operated independently in a series of weekly discussions on four selected health conditions, plus the introductory meeting described above. The conditions were selected on the bases of high prevalence (HIV prevalence is 45% among men and 46% among women aged 35–39 in the Agincourt HDSS and mortality from violent deaths is “outstandingly high”) and in terms of socio–cultural relevance.
Methods and Tools Used
A qualitative approach to data collection and analysis was adopted to elicit the collective perspectives of the village– based groups on the relationships between medical problems and their social and health systems determinants. The focus group discussion (FGD) method was used to encourage participation, to capitalize on communication between participants and to explore people’s knowledge to gain an understanding of the collective norms and attitudes surrounding the two conditions. A series of five weekly FGDs of 1.5–2 hours were held in each of the three villages; 15 FGDs were held in total.
What Went On: Process, Interaction, and Participation
A senior qualitative investigator with detailed knowledge of the area facilitated the discussions and presented data gained via the annual census on the conditions to the groups and facilitated discussions on this basis. Topic guides were prepared for the meetings in which the conditions, their causes, treatments, and the means through which information on them was generated in the locality (ie, HDSS) were discussed. The discussions were audio recorded and translated from the local language xi–Tsonga into English and transcribed. Two investigators took observational field notes and provided generally assistance during the meetings.
Influence, Outcomes, and Effects
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Analysis and Lessons Learned
The narratives and field notes were the main data sources. Towards the end of the data collection, the groups were presented with and discussed a preliminary analysis to determine the plausibility and relevance of early interpretations of the discussions. Following completion of the data collection, a detailed analysis of the discussion transcripts was undertaken using framework analysis. Framework analysis is a flexible tool to analyze qualitative data with the aim of creating a descriptive overview of an entire data set. This method involved familiarization and coding of the data followed by preparation of summaries/charts to map the range of views on the phenomena of interest. NVivo software was used for data management and coding.
The community views on HIV/AIDS and violence were broadly consistent and common issues were identified across the groups. The discussions on HIV/AIDS revealed serious problems with respectful care, confidentiality and patient dignity, while the discussions on violence reflected a patriarchal society with pervasive use of violence as a means of establishing control, social power and position within households and the wider society. The discussions on both conditions revealed the extent to which economic and social insecurities and traditional beliefs influence health and health behaviours. Specific issues included: norms of unsafe sex, widespread prostitution, debt, acceptance of domestic violence, and stigma around disclosure
The discussions provided information not available from other sources on the social and health systems mechanisms through which access to good quality health care is constrained in this setting. The routine engagement of marginalised group in the development of health information, coupled with HDSS for measuring and attributing progress to interventions developed and implemented is a clear avenue for further research.
 Hullur, Nitya, Lucia D'Ambruoso, Kerstin Edin, Ryan G. Wagner, Sizzy Ngobeni, Kathleen Kahn, Stephen Tollman, and Peter Byass. 2016. Community perspectives on HIV, violence and health surveillance in rural South Africa: a participatory pilot study. Journal of Global Health 6 (1). doi: 10.7189/jogh.06.010406
The original submission of this entry was adapted from © 2016 Hullur et al. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4871061/ under the Creative Commons Attribution License, which permits reuse, distribution, and reproduction in any medium, provided the original work is properly cited. Please refer to the revision history for a detailed account of subsequent edits and additions made by the Participedia community.