Participatory action research (PAR) was undertaken to gain insights into the perspectives of rural South African communities on HIV-related mortality.
Problems and Purpose
Legacies of colonialism and apartheid are clearly seen in differentials of opportunity, health and wealth in South Africa today. Forty-five per cent of the population live on or below the poverty line, with high unemployment in rural areas and among young people. Rural areas, in particular, are affected by this legacy. In this context, the health system faces a quadruple burden of disease comprising infectious and non-communicable diseases (NCDs), mortality owing to violence and maternal and child causes. HIV/AIDs is a major challenge.
The purpose of the research was to discover the perspectives of rural South African communities on HIV-related mortality. The objectives were to initiate a process to elicit and organise local knowledge and to identify priorities for service organisation and delivery. The use of PAR in health systems research has been emphasized as an approach to create new knowledge and provoke action, while insights into health systems functioning are important for action. According to a people-centered perspective, health systems are core social institutions, whose structure and functions reflect and reinforce community values and norms of how people interact with and navigate the system. Choices, and trust, in health systems enable individuals to exercise control, acting as agents in influencing health and life situations. According to this viewpoint, the effectiveness of the health system correlates with the quality of human relationships involved.
Background History and Context
Evidence has played an important role in HIV/AIDS in South Africa. At the beginning of the epidemic, the causes and scale were not acknowledged but rather actively disputed by the authorities. In this context, consistent and reliable mortality data became instrumental in encouraging evidence-based policy responses. Accurate data on HIV-related mortality, however, remain irregular and disparate across the country. This acts as both a cause and a consequence of poor overall developmental progress more broadly. HIV/AIDS is clearly patterned by social and economic disadvantage. It follows that social analyses, with an explicit equity focus, can help to understand the issues and from this basis effectively inform policy and other forms of intervention.
Organizing, Supporting, and Funding Entities
The study was conducted at the Agincourt Health and Socio-Demographic Surveillance System (HDSS), in Mpumalanga province, rural northeast South Africa.
Participant Recruitment and Selection
Agincourt HDSS is a longitudinal population registration system with 31 villages, and a population of 110 000, served by seven public clinics, two public health centres and one private health centre at the time of the study. All 24 participants involved in previous pilot work in Agincourt, entitled ‘Public Health Evaluation of Verbal Autopsy (PHEVA)’ were re-engaged to maintain prior partnership with the community. In the earlier work, three village-based discussion groups had been convened, including women, family members, traditional healers, religious leaders, community health volunteers, community health workers and community leaders. Agincourt HDSS staff approached participants of the previous study, described the new research study called VAPAR (Verbal Autopsy and Participatory Action Research), planned activities and expected outputs. Those who wished to be involved were provided with written informed consent forms and information, and a mutually convenient time was arranged for the first meeting.
Methods and Tools Used
Participatory action research (PAR) is a relativist approach concerned with equity in terms of social exclusion from health systems and encourages active involvement of research participants. Through sustained engagement, it aims to encourage participants to develop and adopt roles as agents of change. PAR seeks to democratize the process between researcher and participants and empower participants through this process.
One of the focus groups used Photovoice, a visual participatory tool.
What Went On: Process, Interaction, and Participation
In 18 months, preceded by 12 months of pre-development work, it was possible to only initiate a process to elicit local knowledge and appraise priorities for action. Researchers asserted that although they could not commit to taking action, and learning from action, it was worthwhile to initiate the process as a basis from which to gain support to move towards fuller forms of PAR. One group had exclusively female members to minimise any potential bias arising from power differentials in mixed groups. Participants were to:
- examine Verbal Autopsy (VA) data from Agincourt HDSS,
- further verify and amplify these data with local knowledge and identify priorities for action,
- present the evidence and appraise the priorities for action with representatives of the provincial Department of Health; and
- use the initialized process as a basis from which to develop an ongoing partnership with the Department of Health.
Participants were asked about the conditions to examine to encourage participant control over how topics were selected and framed. DoH provincial planning directorate was consulted and considered burdens of disease as determined through Agincourt HDSS data. HIV-related mortality was selected through this process. HIV was discussed with reference to causes, consequences and modifiable factors. Collective views and priorities for action were developed. Shared accounts of participants’ views on HIV mortality were developed using ranking and diagramming. One of the discussion groups used Photovoice, a visual participatory method in which participants use photography to represent community conditions, physical environments, assets and other phenomena.
Contributory factors were identified, grouped into social and health system factors. Social factors include alcohol use and abuse, gender inequality problems, problems with informal care and poor sanitation and harmful traditional practices. On the other hand, the health system factors include delays in treatment, problematic staff, blame towards staff, lack of confidentiality and lack of trust. Recommendations and priorities for actions focused on improving employment opportunities, government intervention/ expanding community based engagement and health promotion, timely treatment and outreach.
Influence, Outcomes, and Effects
Data and priority actions were subsequently fed back to the provincial directorate, and a joint feedback forum was held with Department of Health representatives and participants from all discussion groups. In these engagements, the combination of quantitative (VA) and qualitative evidence was welcomed as providing powerful, veracious and granular representations of the communities’ experiences of HIV.
Analysis and Lessons Learned
Community knowledge on how HIV is understood, experienced, treated and acted on in this setting, and priorities for action were identified. Within the time and resources available, it was possible to initiate the process, develop collective assessments and appraise actions.
See Also
References
Chloe Brooks, Lucia D'Ambruoso, Karolina Kazimierczak, Sizzy Ngobeni, Rhian Twine, Stephen Tollman, Kathleen Kahn, and Peter Byass. (2017). "Introducing visual participatory methods to develop local knowledge on HIV in rural South Africa." BMJ Global Health. http://dx.doi.org/10.1136/bmjgh-2016-000231
Wariri O. Bridging the gap: using health policy and systems research to connect health system’s stakeholders and rural communities in Mpumalanga province, South Africa. [MSc Dissertation] Aberdeen; University of Aberdeen 2016.
VAPAR Health systems research: developing partnerships to understand and improve health. Dissemination workshop 14 November 2016. University of Aberdeen and University of the Witwatersrand, 2016. https://www.abdn.ac.uk/news/10357/
VAPAR. Power in Partnerships. Connecting health practitioners and communities through research in Bushbuckridge. University of Aberdeen and University of the Witwatersrand, 2016d, 2016.
External Links
Notes
The original submission of this entry was adapted from Brooks et al 2017. http://dx.doi.org/10.1136/bmjgh-2016-000231 under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted 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.
This entry was originally submitted as a method and was converted to a case to meet Participedia's definitional standards.