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Research
Introducing visual participatory methods to develop local knowledge on HIV in rural South Africa
  1. Chloe Brooks1,2,
  2. Lucia D’Ambruoso2,3,4,
  3. Karolina Kazimierczak5,
  4. Sizzy Ngobeni4,6,
  5. Rhian Twine4,
  6. Stephen Tollman3,4,6,
  7. Kathleen Kahn3,4,6,
  8. Peter Byass2,3,4
  1. 1 Department for International Development, London, UK
  2. 2 Centre for Global Development and Institute of Applied Health Sciences, University of Aberdeen, Scotland, UK
  3. 3 Umeå Centre for Global Health Research, Umeå University, Umeå, Sweden
  4. 4 MRC/Wits Rural Public Health and Health Transitions Research Unit (Agincourt), School of Public Health, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa
  5. 5 Business School, University of Aberdeen, Scotland, UK
  6. 6 INDEPTH: An International Network for the Demographic Evaluation of Populations and Their Health, Accra, Ghana
  1. Correspondence to Dr Lucia D’Ambruoso, ; lucia.dambruoso{at}abdn.ac.uk

Abstract

Introduction South Africa is a country faced with complex health and social inequalities, in which HIV/AIDS has had devastating impacts. The study aimed to gain insights into the perspectives of rural communities on HIV-related mortality.

Methods A participatory action research (PAR) process, inclusive of a visual participatory method (Photovoice), was initiated to elicit and organise local knowledge and to identify priorities for action in a rural subdistrict underpinned by the Agincourt Health and Socio-Demographic Surveillance System (HDSS). We convened three village-based discussion groups, presented HDSS data on HIV-related mortality, elicited subjective perspectives on HIV/AIDS, systematised these into collective accounts and identified priorities for action. Framework analysis was performed on narrative and visual data, and practice theory was used to interpret the findings.

Findings A range of social and health systems factors were identified as causes and contributors of HIV mortality. These included alcohol use/abuse, gender inequalities, stigma around disclosure of HIV status, problems with informal care, poor sanitation, harmful traditional practices, delays in treatment, problems with medications and problematic staff–patient relationships. To address these issues, developing youth facilities in communities, improving employment opportunities, timely treatment and extending community outreach for health education and health promotion were identified.

Discussion Addressing social practices of blame, stigma and mistrust around HIV-related mortality may be a useful focus for policy and planning. Research that engages communities and authorities to coproduce evidence can capture these practices, improve communication and build trust.

Conclusion Actions to reduce HIV should go beyond individual agency and structural forces to focus on how social practices embody these elements. Initiating PAR inclusive of visual methods can build shared understandings of disease burdens in social and health systems contexts. This can develop shared accountability and improve staff–patient relationships, which, over time, may address the issues identified, here related to stigma and blame.

  • HIV/AIDS
  • participatory action research
  • health systems
  • health systems research
  • rural
  • South Africa.

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

https://doi.org/10.1136/bmjgh-2016-000231

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    Footnotes

    • Contributors CB performed analysis and prepared manuscript; LD conceived the study and study design, designed and led data collection, supervised analysis and prepared the manuscript; KK supervised analysis and commented on the manuscript; RT contributed to data collection, supervised analysis and commented on the manuscript; SN performed qualitative interviews, supervised transcription of the narratives and commented on the manuscript; ST, KK and PB oversaw study design and data collection and commented on the manuscript.

    • Funding The research presented in this paper is funded by a development grant as part of the Health Systems Research Initiative from Department for International Development (DFID)/Medical Research Council (MRC)/Wellcome Trust/Economic and Social Research Council (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 School of Public Health at the University of the Witwatersrand, the South African Medical Research Council and the Wellcome Trust, UK, support the MRC/Wits Rural Public Health and Health Transitions Research Unit and Agincourt HDSS (grant nos. 058893/Z/99/A, 069683/Z/02/Z, 085477/Z/08/Z and 085477/B/08/Z).

    • Competing interests None declared.

    • Ethics approval Institutional review boards at the Universities of Aberdeen, Scotland, UK (CERB/2015/5/1202), Witwatersrand, South Africa (clearance certificate: M150753) and the provincial health authority in Mpumalanga, South Africa (PHREC REF: MP_2015RP56_334), reviewed and approved the study protocol.

    • Provenance and peer review Not commissioned; externally peer reviewed.