AIDS-related bereavement in the South African context : a study of KwaZulu-Natal, Durban.

Abstract

Not only does South Africa have the largest number of people with HIV/AIDS in the world, it continues to have a high mortality rate associated with AIDS due to the limited availability of antiretroviral treatment in this country. While a body of empirical research has developed in the West on the issue of AIDS-related bereavement, it has limited applicability to the South African context where the daily lives of people infected with and affected by HIV/AIDS are markedly different to those in more developed countries in the West, in terms of the extent of HIV-related morbidity and mortality, poverty, stigma, availability of social support, gender inequality, medical treatment, welfare services and government policies. An exploratory, descriptive study was therefore undertaken to examine AIDS-related bereavement experiences among adults in KwaZulu-Natal, Durban. Qualitative face-face interviews were conducted with 18 adults who had lost one or more significant others to AIDS. Qualitative face-face interviews were also conducted with eight professionals working in non-governmental organizations in KwaZulu-Natal that served people affected by HIV/AIDS to obtain their perspectives on the issue of AIDS-related bereavement among clients and how they were addressing this issue within their organizations. A social ecological framework was used to understand participants' experiences with AIDS-related bereavement. Two major themes emerged: participants had to keep their grief to themselves and more urgent life stresses took priority in their lives. A conspiracy of silence existed as a result of the high level of stigma associated with HIV/AIDS and a perceived lack of both informal and formal support for those infected with and affected by HIV/AIDS. Grief was treated as a "luxury" in a sense and energies had to be focused on daily survival needs. Participants tended to suppress their emotions and relied on inner resources, in particular finding meaning in their loss and relying on their religious faith. Interviews with professionals confirmed these themes. Recommendations are made at both the local and national levels to address AIDS-related bereavement. It is suggested that while individual and group interventions should be developed for those at risk for complicated grief as a result of an AIDS-related loss, the focus needs to be on structural changes such as reducing HIV-related stigma, combating poverty, encouraging men to play a more active role in the care and support of those who are ill with HIV/AIDS or bereaved by the disease, and improving the status and capability of the social work profession to respond to the HIV/AIDS epidemic within the South African welfare policy framework. Further research needs to be conducted on AIDS-related bereavement in the South African context, considering the magnitude of AIDS-related loss and bereavement and the scarcity of indigenous information about this issue. Collaborations between researchers, practitioners and the bereaved are encouraged both in South Africa and internationally to highlight the unique nature of AIDS-related bereavement in the South African context and to test the efficacy of indigenous strategies and interventions to address AIDS-related bereavement.