Home-based care volunteer identity and participation in HIV/AIDS care and support in rural KwaZulu-Natal, South Africa.

Abstract

This thesis explores home-based care volunteer (HBCV) identity and how it is shaped by context in rural KwaZulu-Natal, South Africa. The literature on home-based care in Africa is dominated by the "burden of care narrative" which is supported by the themes of "women as caregivers", "poverty" and "stigma". The literature presents government and stakeholder collaboration as the general solution to alleviating the burden of care on women caregivers. A wider scope for research within the themes is necessary to discover alternative solutions to the problem of the burden of care. This study ventured to expand the scope of current research by exploring the area of HIV and AIDS home-based care volunteer (HBCV) identity and participation in care and support. Fifteen HBCVs were interviewed about their work and personal life stories and interviewed reflexively using narrative interviewing. Findings indicate that the women's stories were dominated by narratives of gender, poverty and sociopolitical factors (social field narratives). Meta-narratives influencing the women's lives were stories of communal motherhood, aspirations to service-oriented work and religious beliefs and commitment. The women's personal life stories revealed that they saw themselves as distinctively caring. Connections between the different aspects of identity and context revealed that the women made sense of their community participation through their personal identities as strong and loving mothers and the association with the group identity of community mothering. Home-based-care volunteerism was explored as a form of agency in response to a lack of recognition, support and acknowledgement for AIDS caregivers and their patients. Researcher reflexivity through autoethnography and poetry contributed to achieving depth in the study and to the understanding that HBCVs strive for space recognition, acknowledgement and validation for their work. In a resource strained context a balance must be found between material compensation and respect and recognition which can be effective in sustaining community initiated volunteerism.