The experiences of caregivers in formal institutions caring for terminal AIDS patients

One of the greatest challenges facing sub-Saharan Africa, which incorporates South Africa, is the AIDS pandemic. The devastation wrought by this disease is unsurpassed in recent times. The health and social development structures, already overburdened, are totally overwhelmed by the needs of povertystricken households and communities affected by AIDS. Caregivers attempting to support those affected and infected are also facing unique challenges and demands, particularly relating to dealing with the large numbers of deaths due to this disease. Experiences for these caregivers are likely to be varied, ranging on a continuum from positive to negative, for instance, the recovery of patients versus the death of patients. The objectives of this study are to explore and describe the lived experiences of caregivers working with AIDS patients, particularly patients who die from this disease whilst resident in a formal institution. The research is based on a qualitative, explorative, descriptive and contextual research design. The study is grounded in a phenomenological approach to inquiry. Caregivers working fulltime in a formal institution caring for patients who are dying from AIDS were interviewed in an in-depth, unstructured manner in order to gather spontaneous, rich descriptions of their experiences. Through this study the researcher wants their voices to be heard, the potential richness of their reflections acknowledged and the generated data to be applied to the benefit of the field of HIV/AIDS – both for staff and patients. Thirteen in-depth, unstructured interviews provided saturated data, which was then transcribed and coded to yield the central and sub-themes that were identified in this study. One central theme identified the fact that in their daily duties (at their place of work), caregivers experience various challenges as a result of having to deal with the death and dying of their patients suffering from AIDS. These caregivers face the death of their patients daily, from a disease that causes untold suffering to the patient, 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. ii By describing the lived experiences of these caregivers by means of the research interviews, the researcher gained a clear picture of the AIDS environment. The information shared by the participants formed the foundation of the broad guidelines that were formulated. These are intended to provide support for the caregivers centering around the equipping of mentors of the caregivers, to enable them to support the caregivers in their daily task of caring for patients dying from AIDS. These caregivers, thus supported, will then be in a position to provide optimal care for these dying patients. These broad guidelines are intended to provide support by focusing firstly on the physical environment in which these caregivers work; secondly in providing education for the caregivers to enable them to fulfill their duties, and thirdly to provide adequate counselling to ensure that they do not succumb to caregiver fatigue/burnout, a constant threat in this type of environment. The study concludes with recommendations regarding the areas of nursing practice, education and research