Psychosocial impacts on caregivers of people living with AIDS

Abstract

Estimates show that by 2010 up to six million South Africans will be HIV-infected. Simultaneously, public health care resources are overstretched and communities and families are taking more responsibility for providing care. However, little work in South Africa has investigated the possible psychosocial impacts on caregivers. This study investigates psychosocial impacts at household level with reference to gender, programme, and policy implications. Forty-five in-depth interviews were held with primary caregivers of people living with AIDS (PWA). Participants were recruited using purposive and snowball sampling. Forty-three respondents were women, signifying that gender is an important issue in this context. Data were analysed using a grounded theory approach. Care giving placed considerable demands on caregivers, which was exacerbated by insufficient support, dire poverty and the added responsibilities of caring for other household members. Lack of basic resources was common and chronic, and care giving impacted negatively on employment and social life. Stigma and prejudice towards caregivers was common and exacerbated stress levels. Assessment of support received from various sources ranged widely. The lack of support was often debilitating. Respondents who felt supported linked this support to improved psychosocial status. Recommendations for policy on home-based care are outlined.

Acknowledgments

I would like to acknowledge Margaret Hoffman, Nontuthuzelo Mvana, Ntobeko Ngwagi, Homebased care NGOs and the study participants. The South African Medical Research Council funded the study.

Notes

1. The terms ‘black’ and ‘coloured’ are used here to denote social constructs based on racial categories imposed under apartheid. Their use here is not intended to legitimise race as a biological phenomenon but rather reflects the impact of these categories on people's lived experiences and social identities.

2. Given the types of obstacles faced by respondents in the study, it may be more appropriate to use the terms ‘developing tactics’ and ‘showing agency’ as better descriptors than the term ‘coping’ (Le Marcis, & Ebrahim-Vally, 2005).