South Africa has one of the highest country HIV/AIDS statistics in the world. The large number of ill individuals has created an unprecedented care work crisis in the country. In the absence of an adequate state supported care work response, the task of caring for people living with HIV/AIDS has fallen on community members. Under-resourced communities often do not have the capacity to engage in such intensive care work, and this shift has resulted in deleterious emotional, physical and financial consequences. This study sought to create greater understanding of the support available and accessible to friends and family members who serve as informal carers of people living with HIV/AIDS. Methodologically, this is a qualitative study. Nine participants from KwaNgcolosi, a periurban area in KwaZulu Natal, were interviewed. A semi-structured interview schedule was directed to elicit participants’ perceptions of the support that is available and accessible to them. Data was thematically analysed. Perceptions of support were understood in the context of the elements of social capital, namely trust, reciprocity, norms and networks, as well as the sociological strata in which these elements function, the bonding, bridging and linking levels. Findings suggest that informal carers perceive low levels of support. Participants reported poor support from local community and extra-community members which include friends and family members, local political and traditional leadership and leadership at a governmental level. Low levels of social capital exist in the community evidenced by lack of reciprocity, norms that isolate the carer, mistrust, lack of control over resources, and weakened networks which inhibit the participants’ pool of human resources. Stigma, discrimination and conditions of extreme poverty were major impediments to the availability and accessibility of beneficial social capital and thus the social support inherent in it. On the converse, the home-based carer (HBC) emerged as the strongest source of assistance to informal carers. The support reportedly received by the HBC 6 include emotional, instrumental and informational assistance. However, these contributions were insufficient, evidenced by the testimony from all participants that they were still experiencing extreme hardships in their care work. The findings suggest that development, project and policy initiatives should focus on empowerment, greater involvement of all stakeholders ranging from individual community members to government policy makers, greater networking and participation and finally that there should be greater investment in the HBC and the informal carer in terms of resources and capacity building.

Thesis (M.A.)-University of KwaZulu-Natal, Durban, 2011.