Constructing loss : exploring the traumatic effects of bereavement due to HIV/AIDS and tuberculosis on aid workers in South Africa
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This thesis aimed to investigate, first, the potentially traumatic effects of AIDS-related bereavement on HIV/AIDS aid workers in South Africa; second, the resources that aid workers utilise in order to cope with their work; and third, differences in the experiences of local versus international aid workers. HIV/AIDS work is associated with various stresses and burnout is commonly observed among HIV/AIDS caregivers. Care of HIV/AIDS aid workers, however, has been largely overlooked; research has typically focused on the experiences of professional health workers, and often outside of an African setting. This present study, therefore, addressed these limitations with the use of participant observation ethnography and ethnographic interviewing. A period of one year was spent with an organisation in South Africa that provides care for vulnerable children in need and affected by HIV/AIDS. Openended semi-structured interviews were conducted with 63 male and female local and international staff and volunteers. The interviews were analysed using discourse analysis (DA), a methodology novel within HIV/AIDS and trauma research and particularly suitable for investigating language, social context and interaction, and identities, which are factors found to be important in HIV/AIDS work. Participants’ discourses were analysed to identify how they construct their identities, concepts such as HIV/AIDS and tuberculosis, events they experienced, and how they made sense of these phenomena. The main finding of this study was that contemporary HIV/AIDS aid work involves new challenges that have surpassed AIDS-related bereavement as the most prominent concern. The main challenges reported by participants involved the inability to control HIV/AIDS treatment and consequently inability to prevent, or control, AIDS-related death as a result of patient non-compliance. Participants further constructed HIV contraction as controllable and, therefore, avoidable, and used this micro discourse on control to counter HIV-related stigma, particularly stigma they experienced as HIV/AIDS aid workers. This rhetorical technique, however, rather maintains the macro discourse on HIV-related stigma by maintaining the blame component of the disease. Two identity constructions emerged in participants’ discourses. First, the characteristics inherent in the child identity suggested that loss is not merely a matter of death but also sadness for and on behalf of children for their various losses. Second, the caregiver identity prescribed how ‘proper’ and ‘genuine’ HIV/AIDS caregivers are expected to behave. The prescriptive nature of this identity can explain burnout among HIV/AIDS caregivers. The rewards of caregiving, however, can act as a buffer against difficult or traumatic experiences inherent in HIV/AIDS work. Managerial support and global belief systems that allow finding meaning were further identified as important coping resources for HIV/AIDS aid workers. Finally, differences between local and international participants, in terms of how they conceptualise phenomena and consequently have different needs, emphasise the role of culture in the experiences of HIV/AIDS aid workers. In the thesis I further discuss these findings in light of theories of social psychology, such as the Just World hypothesis, Cognitive Dissonance, and Identity Control Theory and Self-Categorization Theory. I conclude that although AIDS-related death no longer is a prominent issue, care of HIV/AIDS aid workers should not be overlooked. Contemporary HIV/AIDS work simply involves new challenges and traumas, and it is important that such work is continuously researched to identify evolving needs.