“They give us hope”: HIV-positive caregivers' perspectives on the role of social support for health

Abstract

A number of studies indicate that social support is associated with better health outcomes among HIV-positive caregivers of children, suggesting its potential importance for interventions aimed at safeguarding the well-being of this population. However, there is very little published literature assessing the support–health relationship or evaluating applied social support interventions with HIV-positive populations in HIV-endemic contexts of the developing world. The global literature on social support and health suggests that, in order to refine theory and improve interventions, greater attention should be paid to specific dimensions of support, such as types and sources, as well as the processes through which support may be affecting health outcomes. This article presents and discusses data from in-depth interviews with 12 HIV-positive primary caregivers of children living in an HIV-endemic, low-resourced, urban South African community. The primary aim of this qualitative work was to provide further insight into survey findings of a positive relationship between social support and self-reported general health and functioning, by exploring caregivers' personal experiences of being supported within their community, and their perceptions on how this “informal” support may be influencing their health. Our qualitative data highlight the importance of instrumental and emotional support for this population, the relevance of support provider characteristics and some of the processes or pathways that are likely explaining the support–health link. These processes include psychological factors such as mastery and hope, coping strategies and positive health behaviours. We provide recommendations for future research to further this work, and discuss implications for health interventions.

Keywords:

• caregivers
• HIV and AIDS
• social support
• mental health
• physical health

Acknowledgements

The authors would like to acknowledge the important contribution of the research participants and the field researchers who worked on this project. This work was funded by the Health Economics and HIV and AIDS Research Division at the University of Kwazulu-Natal, South Africa.

Notes

1. Positive significant associations were found between higher perceived functional social support (as measured using the Medical Outcomes Study Social Support Survey) and better self-reported general health and functioning (as measured by the average score for the 12-item Short Form Health Survey/SF-12 subscales) for both HIV-positive and HIV-negative adult caregivers of children.

2. The algorithm used to determine HIV-positive status in the quantitative survey was based on caregiver reports of an HIV-positive status and/or adherence to ARV treatment, as well as the presence of three or more HIV-related signs and symptoms deriving from a Verbal Autopsy questionnaire (VA). The VA was developed for use in areas with over 20% HIV-prevalence, and shown to have a sensitivity of 83% and specificity of 75% (Lopman et al., 2006). This questionnaire was designed primarily to identify symptoms of HIV-related illness, in settings where data on cause of death or illness are unavailable or unreliable (Hosegood, Vannestea, & Timæus, 2004; Lopman et al., 2006).