Giving care to people with symptoms of AIDS in rural sub-Saharan Africa

Abstract

In rural sub-Saharan Africa, most care for patients with AIDS is provided at home by relatives. Caring for those with AIDS is assumed to be a substantial burden, but little is known from the perspectives of those who provide the care. In this paper we use interviews with caregivers, supplemented with survey data from a larger study in rural Malawi, to investigate this issue. We focus on the caregivers’ diagnoses of the illness of their patients, the type and duration of the care they provided, the support they received from relatives and other members of the community, and the extent to which caregiving was experienced as an emotional, physical, and financial burden. Although none of the caregivers knew of a formal diagnosis and few explicitly named their relative's disease as AIDS, most appeared to suspect it. They described the illness using the typical symptoms of AIDS as they are locally understood and sometimes related the illness to their patient's sexual history. The care, typically given by close female relatives of the patient, was limited to the care that would be given to anyone who was seriously ill. What was striking, however, was the compassion of the caregivers and the attempts they made to provide the best care possible in their circumstances. For most caregivers, kin and members of the community provided social, moral, and physical support, as well as modest financial assistance. Caregiving was physically and emotionally demanding and confined the caregivers to their home, but most caregivers did not consider caregiving a problem primarily because the patients were close relatives. The financial impact of caregiving was typically modest because the caregivers had very little income and few possessions to sell.

Notes

Two patients were not seen by the senior author because rain had made the roads impassible and a bicycle could not carry two in those circumstances. These were evaluated by the female interviewer towards the end of the study when she was quite familiar with the criteria; the symptoms of these patients were quite typical.

Divorce rates are higher in Balaka than in the two other districts covered by the MDICP. In Balaka, approximately 65% of first marriages end in divorce within 30 years—and divorce is followed, and sometimes preceded, by a search for another spouse that includes sexual relations (Schatz, 2002; Reniers, 2003).

These figures refer to pregnant women tested for HIV in 1998 in, respectively, Machinga District (Southern Region), Kasungu District (Central Region), and Karonga District (Northern Region). Note that Balaka, the study site, was then located in Machinga District.

This estimate was based on a question about usual income in a defined time period.