Caring for terminal AIDS patients: The experiences of caregivers in a 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.

Opsomming

Die fokus van hierdie navorsing was op die beleefde ervaringe van die versorgers wat met VIGS pasiënte werk, veral pasiënte wat sterf aan die siekte terwyl hulle in 'n formele inrigting is. 'n Kwalitatiewe, eksploratiewe, beskrywende en kontektuele navorsingsontwerp met 'n fenomenologiese benadering was gebruik. Dertien ongestruktueërde onderhoude, wat op 'n audioband opgeneem was is gehou met versorgers wat voltyds in 'n formele inrigting sorg vir pasiënte wat aan VIGS sterf werk. Tesch se metode van beskrywende analise was gebruik om die transkribeerde onderhoude te analiseer (in Cresswell 1994:115).

Een sentrale tema het na vore gekom, naamlik dat versorgers tydens die uitvoering van hulle daaglikse pligte (in die werk) 'n verskeidenheid uitdagings ondervind het as gevolg van hul pasiënte wat sterf van VIGS en vyf sub-temas is geformuleer deur verdure analise. Hierdie vyf sub-temas was:

• Versorgers ervaar emosionele uitdagings tydings die versorging van pasiënte wat van VIGS sterf;

• Versorgers ervaar n verskil in die dood en sterfte van volwassesnes teenoor die van kinders;

• Versorgers ervaar die rasionaliseering van dood en sterfte verskillend;

• Versorgers ervaar dat vertroue in God hulle krag gee om die dood en sterfte beter te hanteer;

• Versorgers ervaar dat die versorging van pasiënte wat sterf of sterwend is vervullend is ten spyte van die hartseer van dood en sterfte.

Die deelnemers ervaar die dood van hul pasiënte daagliks van 'n siekte wat ongetelde lyding vir hulself, die pasiënt en hul familie veroorsaak. Die versorgers wens dat hulle kon die angs en die pyn voorkom, sowel as die ombekwaamheid van die mediese beroep om huidiglik meer te kan doen om die siekte te genees. Hulle beskryf hul emosionele ervaringe wat die verskillende uitdagings wat hul ervaar as gevolg van hul betrokkenheid by die dood en afsterwe van hul pasiënte aan VIGS. Die inligting wat deur hierdie deelnemers gedeel word, vorm die basis van die ontwikkeling van breë riglyne om die versorgers te ondersteun.