Patient Experience Journal (Apr 2014)
Caregiving and the experience of health and illness in children living with HIV/AIDS in Gulu District Northern Uganda: An ethnographic research narrative
Abstract
In this paper we discuss the experience of caregiving for children living with HIV in a resource poor environment in Gulu municipality in northern Uganda; the main research questions of the study were: what are the perceptions of caregivers on the care of children with HIV, and what barriers and enablers exist that undermine or promote better care for children respectively? The experience of caregivers and their perceptions on managing HIV in children is believed to shape the health seeking behaviour towards treatment and efforts to cope with its negative impact on the body. Women and children are the greatest bearer of the burden of the HIV scourge to date. While more and more children are undergoing treatment as a way of controlling HIV/AIDS, it is still crucial to understand the perceptions of their parents and/or caregivers on the AIDS pandemic and the impact of antiretroviral therapy on the quality of life of their children. In this paper the socio-medical views of these clients, based on an ethnographic study are discussed to give a holistic understanding of the ‘crisis’ of HIV/AIDS as well as their ‘imagined’ hopes, fears and expectations on antiretroviral therapy as HIV/AIDS become a chronic disease. Five themes emerged from analysing the experiences and perceptions of caregivers of children living with HIV: beliefs in the antiretroviral therapy, psychological counselling, family breakdown, positive living with HIV and social stigma. These were central in their perception of caring for the affected children and other family members.
