The caregivers of persons living with HIV/AIDS: the experience of caring for a dying family member at home

While some research has been conducted on HIV/AIDS family caregiving, it is limited in addressing the experience of family members who provide care to persons with HIV/AIDS (PWHIV/AIDS) who are dying at home and planning for a home death. Furthermore, much of the general family caregiving research focuses on caregiving tasks and related effects on the caregiver. The purpose of this study was to explore the day-to-day experiences of family members who care for their dying loved one at home with HIV/AIDS. Seven family members who were caring for or had cared for a PWHIV/AIDS at home in the last year were interviewed using an unstructured interview format. Verbatim transcripts of the interviews were analyzed using the constant-comparative method and the methodological guidance of grounded theory. The data analysis contributed to the development of a substantive theory of HIV/AIDS family caregiving. The findings revealed that work characterized the experiences of family members while they lived in a world of uncertainty and stigma. Promising to fulfill the wishes of the loved one lead family members to engage in both personal and pragmatic work. In order to manage their work, caregivers developed various strategies such as seeking support and working as a team. Several conditions affected the caregivers' strategies such as the accessibility of services and the nature of support. These conditions and strategies ultimately resulted in a variety of consequences that affected the caregivers' bereavment. HIV/AIDS family caregiving was an intense, emotional, and powerful experience. It was an experience filled with pride and enrichment, or conversely, with anger and disillusionment. Coping with the extensive demands of HIV/AIDS family caregiving required considerable time, energy, and commitment that often went unrecognized and unsupported. Findings reflect a significant need for interventions designed to provide direct and effective support for HIV/AIDS family caregivers. Failure to address the needs of caregivers is not only morally and ethically unacceptable but also demonstrates a myopic view of the caregivers' experiences. The richness of the caregivers' stories and the impact on their lives cannot be denied and they demand creative, professional solutions.Applied Science, Faculty ofNursing, School ofGraduat