Defying all odds: coping with the challenges of volunteer caregiving for patients with AIDS in South Africa

AIM: This paper is a report of a study to explore the challenges experienced by volunteer caregivers of people living with HIV/AIDS and the strategies employed in coping with these challenges. BACKGROUND: Informal caregiving is associated with stresses that often results in poor health outcomes for caregivers. In South Africa, volunteers play a major role in the provision of care for people living with HIV/AIDS and have been shown to experience burdens as a result of caring. However, little is known about stress and coping among volunteer caregivers. METHODS: An ethnographic study was conducted, using observation and in-depth interviews, to collect data with 20 volunteers and other stakeholders in two semi-rural communities in South Africa over a 19-month period in 2002/2003. FINDINGS: 'Defying all odds' emerged as the central theme that encompassed the various ways in which volunteer caregivers dealt with the many practical challenges confronting them. These challenges initially posed a threat to volunteering work but were gradually appraised by volunteers as challenges that could be dealt with using various strategies in order to continue providing care. Eight themes highlighting these challenges and the coping strategies employed by volunteers were identified. CONCLUSION: A clear understanding of how volunteers deal with challenges of caring for people living with HIV/AIDS can give insight into their weaknesses and strengths and can inform the design of interventions aimed at providing support. Studies are needed to facilitate better understanding of the processes of appraisal of challenges by volunteers and the effectiveness of coping strategies, and to track coping strategies over time.