Die belewenisse en sosio-emosionele behoeftes van familielede as primere VIGS-versorgers binne 'n ekologiese perspektief : 'n kwalitatiewe studie

Terblanche, Hester Helena (2014-12)

Thesis (PhD)--Stellenbosch University, 2014.

Thesis

ENGLISH ABSTRACT: Due to a lack of research, which, in turn, resulted in a shortage of applicable literature that focused on the experiences and socio-emotional needs of family members as carers of AIDS-patients, the researcher decided to undertake this research project. The aim of this was to investigate the experiences and socio-emotional needs of family members as AIDS care givers. To lead the research, the researcher made use of a qualitative research approach. Attention was also given to the description of HIV/AIDS, as well as the prevention and treatment of HIV/AIDS. The impact of HIV/AIDS was also given attention, and it was done from an ecological perspective. Within the qualitative research paradigm a phenomenological, explorative, descriptive and contextual research design was utilised. The boundaries for data collection were delineated to the George area. Semi-structured interviews were conducted with family members who acted as primary care givers of AIDS-patients who were recruited by means of purposive sampling and the snowball sampling technique. The data collected were analysed according to the steps for qualitative data analysis as proposed by Tesch (in Cresswell, 1994). To ensure the trustworthiness of the research findings, data verification was executed according to Guba’s model (in Krefting, 1991). The following twelve themes emanated from the process of data analysis: - Knowledge of the disease - Caring for people with AIDS - Risky behaviour - Other people’s reactions - Care givers’ feelings and reactions - Support that was received with the care giving - Effect of the care giving on the relationship between the care giver and the patient - Changes in the care givers’ life because of the care giving of AIDS patients - Experiences regarding the dying process - Needs regarding the caring of the patient - Services that are needed - Advice from the participants to other family members as AIDS care givers. The following recommendations were made based on the conclusions derived from the research findings: Information sessions by Social Workers in collaboration with the different clinics on certain days; a community based project to recruit volunteers to support family care givers on a regular basis; look at facilities, like old age homes and hospices, that can give respite for a week to three weeks; connect family care givers to support groups in the community; make use of the media to give information regarding HIV/AIDS to the broader community; a centralized food and clothes bank from which care givers can draw affordable food and clothes. An application for funding can be done at the Department of Social Development or the Department of Health. Another recommendation that is made is to investigate the possibility of a community based project that provides cleaning and washing services to family members as care givers, as well as the patients. This can even become a job creation project. Other recommendations are: to investigate an alternative form of transport that is wheelchair accessible and patient friendly; to train home based carers to help family members as AIDS care givers; to train home based carers to be of assistance with counseling of patients with regard to their medication; to train home based carers as AIDS care givers to help family members to reach out to other support services or groups; that care givers should be careful about expectations of other people and that they should be confident enough to verbalize their expectations; that Social Workers should investigate if the family member, as AIDS care giver, as well as the patient, gets the necessary support on all levels of the ecological perspective, and if not, he/she must look at ancillary sources and mobilize it to give support to the family care giver as well as to the patient; that professionals need to keep in mind the advice the participants was given to other family members as care givers when they are working with these families. A recommendation was also made to do a follow-up research on the same topic in the White, Indian and Black communities and especially that further emphasis should be placed on their needs, as participation by this population groups were scarce or could not be obtained at all.

AFRIKAANSE OPSOMMING: Weens ‘n gebrek aan navorsing, en gevolglik ook aan literatuur rakende die belewenisse en sosio-emosionele behoeftes van familielede as primêre VIGS-versorgers, het die navorser besluit om hierdie navorsingsprojek te onderneem. Die doel hiermee was om die belewenisse en sosio-emosionele behoeftes van familielede as primêre VIGS-versorgers te verken en te beskryf. Om die navorsing te rig, is ‘n kwalitatiewe navorsingsbenadering vir die doel gebruik. Aandag is ook gegee aan die beskrywing en voorkoms van MIV/VIGS, asook die voorkoming en behandeling van MIV/VIGS. Die impak van MIV/VIGS is ook breedvoerig bespreek en is dit vanuit ‘n ekologiese perspektief gedoen. Binne die kwalitatiewe navorsingsbenadering is daar van ‘n fenomenologiese, verkennende, beskrywende en kontekstuele navorsingsontwerp gebruik gemaak. Die grense vir data-insameling het binne die George-area geval. Semi-gestruktureerde onderhoude is gevoer met familielede wat as primêre VIGS-versorgers optree, en wat deur middel van ‘n doelgerigte steekproeftrekking en die sneeubaltegniek vir deelname aan die navorsing gewerf is. Die ingesamelde data is ontleed aan die hand van die agt stappe van kwalitatiewe data-ontleding van Tesch soos uiteengesit in Creswell (1994). Guba se model soos dit in Krefting (1991:214-221) uiteengesit is, is gebruik om die vertrouenswaardigheid van die navorsingsdata te verifieer. Twaalf temas het na aanleiding van die prosesse van data-ontleding na vore gekom, naamlik: - Kennis van die siektetoestand - Versorging van VIGS-lyers - Risiko-gedrag - Ander mense se reaksie - Versorger se gevoelens en reaksies - Ondersteuning wat ontvang is met die versorging - Effek van pasiënt se versorging op die verhouding tussen versorger en pasiënt - Verandering van versorger se lewe as gevolg van die versorging van die VIGS-lyer - Belewenisse ten op sigte van die sterwensproses - Behoeftes ten opsigte van die versorging van die pasiënt - Dienste wat benodig word - Raad deur deelnemers aan ander familielede as VIGS-versorgers. Voortspruitend uit die navorsingsbevindinge, is tot sekere gevolgtrekkings gekom waaruit die volgende aanbevelings gemaak is: dat inligtingsessies deur maatskaplike werkers in samewerking met die verskillende klinieke op sekere dae gehou sal word; dat ‘n gemeenskapsprojek van stapel gestuur word om vrywilligers te werf wat op ‘n gereelde basis aan VIGS-versorgers ondersteuning bied; dat daar gekyk word na respite by ouetehuise of ‘n hospice vir ‘n tydperk van ongeveer drie weke om aan versorgers ‘n ruskans te gee; dat versorgers betrek word by ondersteuningsgroepe in die gemeenskap; dat die media gebruik word om inligting oor VIGS aan die breë gemeenskap deur te gee; dat aandag gegee word aan ‘n gesentraliseerde voedsel- en klerebank waarvandaan versorgers voorraad kan onttrek. Aansoek vir befondsing kan gedoen word by Departement Maatskaplike Ontwikkeling of Departement Gesondheid. Verdere aanbevelings wat gemaak kan word, is: dat ‘n gemeenskapsprojek van stapel gestuur word om skoonmaakdienste en hulp met wasgoed was tot die beskikking van die VIGS-versorger te stel wat selfs as ‘n werkskeppingsprojek begin kan word; dat ‘n alternatiewe vorm van vervoer wat deur die familielid en pasiënt benut kan word, en wat geskik is vir pasiënt vervoer, ondersoek sal word; dat opleiding van tuisversorgers as hulp vir familielede as VIGS-versorgers aandag sal kry; dat opleiding van tuisversorgers om behulpsaam te wees met berading van pasiënte rakende hulle medikasie dringende aandag sal geniet; dat familielede as VIGS-versorgers uitreik na ander ondersteuningsbronne vir hulp; dat versorgers versigtig sal wees ten opsigte van verwagtinge van ander, maar dat hulle ook vrymoedigheid sal neem om hulle verwagtinge te verbaliseer; dat die maatskaplike werker sal ondersoek instel of die familielid as primêre VIGS-versorger, sowel as die pasiënt, vanuit al die vlakke van die ekologiese perspektief die nodige ondersteuning geniet, en indien nie, moet daar gekyk word na hulpbronne en dit moet gemobiliseer word ten einde hierdie noodsaaklike ondersteuning te bied; dat die raad wat deur die deelnemers aan die navorsing aan ander familielede as VIGS-versorgers voorsien is, in gedagte gehou sal word wanneer met hierdie families gewerk word. ‘n Aanbeveling is ook gemaak dat opvolg navorsing oor dieselfde onderwerp gedoen word onder die Wit, Indiër en Swart gemeenskappe, en dat veral klem gelê word op hulle behoeftes, aangesien deelname vanuit hierdie bevolkingsgroepe skraal was, of glad nie bekom kon word nie.

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