It is commonly assumed that the extended family in Africa provides a safety net for individuals in times of need. This paper examines this assumption using data on the care of people with AIDS in a rural population in South West Uganda. Over a six month period data were collected by counsellors on the care given to 30 (17 women, 13 men) AIDS patients by their families. In 27 of the 30 cases there was evidence of limited care. Various reasons were given for this by the carers, including lack of food and money for medications and the carer's other family responsibilities. For 17 clients who died during the study period, records of seven cases show that other relatives were asked to help with care but refused on the grounds of poverty or other commitments. However, in all but one of these cases extended families did provide assistance for the funeral. The findings suggest that there is a need to question the assumption that the extended family, in the culture under study, is able to provide adequate support for AIDS patients.
This paper describes the data collection methods used in a longitudinal study of the coping strategies of 27 households in three villages in the study area of the MRC/ODA Research Programme on AIDS in Uganda. After pre-testing and piloting, 9 local interviewers made regular visits to the 27 study households over a period of just over one year. The households were purposively selected to represent different household types and socioeconomic status categories. Data were obtained through participant observation using a checklist to ensure systematic collection of data on household activities. Debriefing sessions with the interviewers after the visits provided opportunities for the discussion of the findings and exploration of themes for further study. On the basis of the study findings, and data from the Programme's general study population survey rounds, broad indicators of household 'vulnerability' were identified. A participatory appraisal technique, 'well-being ranking', was used at the end of the study in order to test the viability of the chosen indicators. It is proposed that the example of the research method, which relied on local people not only as interviewers but also as co-investigators in the research, be used to guide future research approaches. The participation of the study community at every stage of research and design, as well as monitoring and evaluation of supportive interventions, is strongly encouraged.
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