The experiences of family caregivers of persons with physical disabilities

Muller-Kluits, Noreth (2017-12)

Thesis (MA)--Stellenbosch University, 2017.

Thesis

ENGLISH ABSTRACT: Almost everyone will experience a form of impairment or disability some or other time in their lives. Different types of impairment could occur at any given moment. For example, parents might find out their baby was born with cerebral palsy, a person might be injured in a motor vehicle accident or a person who suffered a stroke is left paralysed on the one side. This disability can persist for years or even life-long, requiring family members to act as informal caregivers. Living with a person with a disability can have significant effects on the family members. This unique shared experience can affect all aspects of family functioning in both a positive and a negative manner. Many previous research studies have investigated the needs of persons with disabilities but very few have focused on the family members who care for them. The goal of this study was to gain a better understanding of the experiences of family caregivers of persons with physical disabilities. This goal was achieved by discussing the experiences of family caregivers of persons with physical disabilities from previous studies. The ecological perspective was utilised to explore the different social support needs and services of family caregivers of persons with physical disabilities. An analysis was done of the experiences of family caregivers of persons with physical disabilities regarding their support needs and the barriers they experience. Finally, relevant recommendations were made on how to improve social support to family caregivers of persons with physical disabilities. It was decided to make use of Bronfenbrenner’s ecological perspective when investigating the experiences of family caregivers of persons with physical disabilities. This perspective, which sees families as social environments, identifies four systems of a person’s social environment: the micro-, meso-, exo- and macrosystem. The study also used the Parents’ Supportive Care Needs Framework that identifies social, emotional, practical, physical, psychological and informational needs as parts of supportive needs of parents. The research study used a qualitative approach with some elements of a quantitative approach with regard to identifying particulars of the participants. It used a combination of descriptive and exploratory research design. The reasoning of the research study was both deductive and inductive. The data collection was done by means of a semi-structured interview that was done with a sample of 20 participants of family caregivers of persons with physical disabilities Stellenbosch University https://scholar.sun.ac.za iii identified by the Tygerberg Association for Persons with physical disabilities in the Cape Town area. The research study used purposive sampling for 19 of the participants. One participant identified him/herself through snowball sampling. During the empirical study, five themes were identified, namely support services used, support needs, general experiences of family caregivers, barriers experienced by family caregivers, and coping mechanisms of family caregivers. Although the research study had five different themes, these themes interlinked with one another in many cases, with a few exceptions. The first link was between support services used, positive experiences, and coping mechanisms used by family caregivers of persons with physical disabilities. The second was link between support needs, negative experiences, and barriers experienced by family caregivers of persons with physical disabilities. Throughout the research study, the researcher was able to identify many needs and barriers experienced by family caregivers of persons with physical disabilities but two main findings emerged: the lack of information on various aspects for family caregivers of persons with physical disabilities, and the need for more long-term care centres for persons with physical disabilities, especially adults. Recommendations are aimed at overcoming the barriers experienced by family caregivers of persons with physical disabilities as well as at addressing the needs that were identified by them. Recommendations are made to certain service providers and there are also suggestions for future research. One of the main recommendations is that more research be conducted on similar topics. More similar studies on the experiences of family caregivers could be valuable to disability advocacy.

AFRIKAANS OPSOMMING: Die meeste mense sal die een of ander tyd ʼn vorm van gebrek of gestremdheid ervaar. Verskillende tipes gebreke kan op enige oomblik voorkom; byvoorbeeld ouers wat uitvind hul baba is met ’n serebrale gestremdheid gebore, ’n persoon wat tydens ’n motorongeluk beseer word, of ’n persoon wat ʼn beroerte gehad het en aan die een kant verlam gelaat word. Die gestremdheid kan vir jare of selfs lewenslank duur, wat dan vereis dat familielede as informele versorgers moet optree. Om met ’n gestremdheid te lewe kan geweldige gevolge vir die hele familie inhou, insluitend ouers, broers en susters sowel as ander familielede. Hierdie unieke ervaring kan die familie op verskeie maniere beïnvloed – beide positief en negatief. Etlike vorige navorsingstudies het al die behoeftes van persone met gestremdhede ondersoek, maar daar is nog nie baie op die familielede wat hul versorg, gefokus nie. Die doel van hierdie studie was om ʼn beter begrip te kry van die ondervindings van familieversorgers van persone met fisiese gestremdhede. Hierdie doel is bereik deur onder meer die ondervindings van familieversorgers van persone met fisiese gestremdhede uit vorige studies te bespreek. Die ekologiese perspektief is gebruik om die verskillende ondersteuningsbehoeftes en -dienste te verken, deur die ondervindings van familieversorgers van persone met fisiese gestremdhede te analiseer ten opsigte van hul behoeftes en die struikelblokke wat hul ondervind. Voortvloeiend hieruit is relevante aanbevelings gemaak oor hoe om die maatskaplike ondersteuning aan familieversorgers van persone met fisiese gestremdhede te verbeter. Tydens die navorsing is daar besluit om gebruik te maak van Bronfenbrenner se ekologiese perspektief. Hierdie perspektief sien die familie as ’n sosiale omgewing. Dit bied vier sisteme van die individu se omgewing, naamlik die mikro-, meso-, ekso- en makrosisteem. Die studie het ook gebruik gemaak van die Raamwerk vir die Ondersteuning van Versorgingsbehoeftes vir Ouers wat die sosiale, emosionele, praktiese, fisiese, sielkundige en inligtingsbehoeftes identifiseer as versorgingsbehoeftes vir ouers. Daar is gebruik gemaak van ʼn kwalitatiewe benadering met net sommige elemente van ʼn kwantitatiewe benadering ten opsigte van die identifiserende besonderhede van die deelnemere. Dit het gebruik gemaak van ʼn kombinasie van beskrywende en verkennende navorsingsontwerp. Die beredenering in hierdie navorsingstudie was beide induktief en deduktief. Data is ingesamel deur gebruik te maak van ʼn semi-gestruktureerde onderhoudskedule met ʼn steekproef van 20 deelnemers wat familieversorgers van persone met fisiese gestremdhede was. Hulle is geïdentifiseer deur die Tygerbergse Vereniging vir Persone met Fisiese Gestremdhede in die Kaapstad-omgewing. Die navorsingstudie het gebruik gemaak van doelgerigte proefsteekneming met 19 van die deelnemers, een het hom/haar self het deur middel van sneeubal-proefneming geïdentifiseer. Tydens die empiriese studie is vyf temas geïdentifiseer, naamlik ondersteuningsdienste gebruik, ondersteuningsbehoeftes, die algemene ondervindings van familieversorgers, die struikelblokke wat deur familieversorgers ervaar word en die hanteringsmeganismes van familieversorgers. Alhoewel die navorsingstudie vyf verskillende temas het, is daar in baie gevalle – met ʼn paar uitsonderings – ʼn verband tussen hierdie temas. Die eerste verband is tussen die ondersteuningsdienste, die positiewe ervarings en die hanteringsmeganismes wat gebruik is deur familieversorgers van persone met fisiese gestremdhede. Die tweede verband is tussen die ondersteuningsbehoeftes, die negatiewe ondervindings en die struikelblokke wat deur die familieversorgers ondervind word. Die navorser het deurgaans verskeie behoeftes en struikelblokke wat deur familieversorgers van persone met fisiese gestremdhede ondervind is, geïdentifiseer, maar twee hoofbevindings was duidelik – die gebrek aan inligting oor verskeie aspekte vir familieversorgers van persone met fisiese gestremdhede en die behoefte aan langtermynsorg vir persone met fisiese gestremdhede, veral volwassenes. Aanbevelings is daarop gefokus om die struikelblokke te oorkom wat familieversorgers van persone met fisiese gestremdhede ervaar, sowel as om aan die behoeftes wat deur hulle geïdentifiseer is, te voldoen. Aanbevelings is aan sekere diensverskaffers gedoen en daar is ook voorstelle gemaak vir toekomstige studies. Een van die hoofaanbevelings is dat meer navorsing gedoen behoort te word oor soortegelyke onderwerpe. Dit kan gedoen word deur soortgelyke navorsing te onderneem oor die ondervindings van familieversorgers wat dan navorsing gebruik vir voorspraak vir mense met gestremdheid

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