Caring for terminal AIDS patients: The experiences of caregivers in palliative care institution

Abstract

This research focused on the lived experiences of caregivers working with AIDS patients, particularly patients who die from this disease whilst resident in a formal institution. A qualitative, exploratory, descriptive, and contextual research design with a phenomenological approach to inquiry was utilised. Thirteen unstructured interviews, which were audio-taped, were conducted with caregivers working full-time in a formal institution caring for patients who are dying from AIDS. The transcribed interviews were analysed using Tesch's method of descriptive analysis (in Creswell 1994:115). One central theme emerged, namely that in their daily duty (at their place of work), caregivers experienced various challenges as a result of having to deal with the death of their patients suffering from AIDS, and five sub-themes were formulated from further analysis. The five subthemes were: Caregivers experienced emotional challenges in caring for patients dying of AIDS; Caregivers experienced a difference in death and dying of adults as apposed to children; Caregivers experienced the rationalisation of death and dying differently; Caregivers experienced that faith in God give them strength to cope with death and dying; Caregivers experienced caring for patients as fulfilling and meaningful to them despite the sadness of death and dying. The participants face the death of their patients daily, from a disease that causes untold suffering to the patients, family members and to the caregivers themselves, who wish they could prevent the anguish, the pain and the inability of the medical profession to do more than they are at present towards curing this disease. They described their emotional experiences, which included the various challenges that they face as a result of having to deal with the death and dying of their patients suffering from AIDS. The information shared by these participants formed the foundation of the broad guidelines that were developed in order to provide support for such caregivers.