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We conducted 16 in-depth interviews with family caregivers of AIDS patients in three rural districts in western Uganda. They were selected from a client visitation list of the home-based care program for AIDS patients, based on volunteer participation. Family caregivers reported huge problems associated with providing the necessary psychological, social, and economic care. They also said that the physical and emotional demands of caregiving are overwhelming daily challenges. Most support to AIDS patients provided by family, friends, and the churches. The study highlights the great burden of caregivers, in sub-Saharan Africa who most often are elderly women and young girls. This study examine, the burden and related health issues of family caregivers, primarily women, for AIDS patients in Uganda. It was part of a broad research project using qualitative methods on family caregiving in the home environment in sub-Saharan Africa. As the requirements for family care giving are often overwhelming for women under the conditions as they exist in Uganda and in other developing countries, it constitutes a gender issue of great importance that has not been appreciated fully in the international literature. Family caregiving is also of international relevance, as HIV/AIDS is a global pandemic of previously unknown proportions. In many poor countries, family caregiving is the most common and often the only care that AIDS patients receive, because clinic-based care often is not available close to home or is not affordable. Therefore, family caregiver support programs to alleviate this burden are essential for all those countries where HIV/AIDS is prevalent. Family caregiver burden encompasses medical, social, and economic issues at the household level, which requires an interdisciplinary approach in order to fully understand and appreciate the different dimensions of the family caregiver burden and its negative impact on the lives of so many women in so many countries.

The aim of this study was to measure the burden of care for family caregivers of AIDS patients. A cross-sectional exploratory design was used to describe the care experiences of family caregivers of AIDS care recipients. A questionnaire was used to interview 120 family caregivers of AIDS patients from four rural areas in western Uganda. The questions asked were related to 12 domains of family caregiving. Care burden scores of caregivers were calculated. It was found that care burden scores were high in all domains except those regarding relationships within the families and substance abuse. Serious work overload and low health status were reported. The high burden of caregiving puts family caregivers at risk for decreased health status and increased social isolation and depression.

The objectives of the study were: 1) What is the burden of care for male and female family caregivers of AIDS patients? and 2) Which factors influence the family care burden for AIDS patients at home? A questionnaire was completed by 29 male and 91 female family caregivers of AIDS patients living in four rural areas in western Uganda. Participating caregivers were selected from a patient list of the home-based care program for AIDS patients and then interviewed. The responses from the questionnaire were used to calculate care burden scores for caregivers of both genders and the scores in each group were compared. In addition, other factors relevant to the burden of family care were extracted and tested in bivariate and multivariate analysis to test whether they were predictors of the care burden. Results show that the care burden scores were high in all domains, except those regarding relationship within the families and substance abuse. Both male and female caregivers reported a similar care burden. Caregivers for spouses had higher care burden scores compared to those who cared for other relatives. The intensity of care was also a significant predictor of the care burden, while other factors such as age, duration of care, and cognitive function of the care recipient were not associated with the care burden score. The high burden of caregiving puts family caregivers at risk for a lower health status, social isolation and depression. As both male and female caregivers report similar care burden scores for the same responsibilities, men are not unduly overburdened with the family care of AIDS patients compared to women and should be more actively involved in the caregiving process at home. [ABSTRACT FROM AUTHOR]