A descriptive study of the experience of primary caregivers of patients with symptoms of AIDS in resource poor communities: The case of Malawi

The purpose of this study was to describe the experience of family caregivers of patients with AIDS-related conditions in Malawi. The study used qualitative and quantitative methods. The sample was comprised of caregivers from rural areas as well as urban areas that included a major hospital and a non-governmental organization (NGO). Convenience sampling was used to recruit the sample. The study investigated: caregivers\u27 perceptions about their patients\u27 illness; how their roles as caregivers were acquired; role preparedness and role performance of caregivers; resources and support available to the caregivers, and satisfaction with support; whether or not caregivers experienced role strain; and correlations among variables. A comparison was made between the rural and urban caregivers; and between qualitative and quantitative findings. Data were analyzed by thematic analysis, t-test, chi-square and Spearman rho correlation. The findings included that role acquisition was mostly out of obligation. Mothers were a majority of caregivers in the rural setting while wives were a majority in the urban area. AIDS was seen as a secret disease by patients and caregivers. Non-disclosure of diagnosis occurred even with spouses. Education of caregivers by health personnel was poor, and there was no significant difference in role preparation between the rural caregivers and caregivers of patients who received healthcare at a major urban hospital. The caregivers experienced various strains with the rural caregivers experiencing significantly more strain than the urban caregivers. Very few patients were abandoned by relatives. Although the disease itself had stigma, many caregivers had moral support, though not necessarily with physical care. Caregivers from the NGO had better support. The functions performed by rural and urban caregivers were similar, but the rural caregivers were more financially deprived. Most caregivers did not use any protection when touching patients\u27 body fluids, such as cleaning wounds. Recommendations include: the need for improved preparation of patients for homecare; promotion of sharing diagnosis with spouse and caregivers because of risk of transmission; promotion of homecare support groups even in rural areas. Further studies were also recommended such as the effects on children of having a parent with AIDS