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Exploring the experiences of informal caregivers of family members living with Alzheimer’s disease in South Africa : a qualitative study
Thesis (MA)--Stellenbosch University, 2023.
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| Format: | Thesis |
| Language: | en_ZA en_ZA |
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Stellenbosch : Stellenbosch University
2023
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| _version_ | 1867613925844975616 |
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| access_status_str | Open Access |
| author | Robertson, Jamie-Lee |
| author2 | Kagee, Ashraf |
| author_browse | Kagee, Ashraf Robertson, Jamie-Lee |
| author_facet | Kagee, Ashraf Robertson, Jamie-Lee |
| author_sort | Robertson, Jamie-Lee |
| collection | Thesis |
| dc_rights_str_mv | Stellenbosch University |
| description | Thesis (MA)--Stellenbosch University, 2023. |
| format | Thesis |
| id | oai:scholar.sun.ac.za:10019.1/127019 |
| institution | Stellenbosch University (South Africa) |
| language | en_ZA en_ZA |
| last_indexed | 2026-06-10T12:43:54.041Z |
| license_str | Other — see source repository |
| provenance_str_mv | Harvested via OAI-PMH from SUNScholar — Stellenbosch University Repository |
| publishDate | 2023 |
| publishDateRange | 2023 |
| publishDateSort | 2023 |
| publisher | Stellenbosch : Stellenbosch University |
| publisherStr | Stellenbosch : Stellenbosch University |
| record_format | dspace |
| source_str | SUNScholar — Stellenbosch University Repository |
| spelling | oai:scholar.sun.ac.za:10019.1/127019 Exploring the experiences of informal caregivers of family members living with Alzheimer’s disease in South Africa : a qualitative study Robertson, Jamie-Lee Kagee, Ashraf Stellenbosch University. Faculty of Arts and Social Sciences. Dept. of Psychology. Alzheimer's disease -- Patients – Care -- South Africa Caregivers -- South Africa Nervous system – Degeneration -- South Africa Dementia -- Patients -- Care Thesis (MA)--Stellenbosch University, 2023. ENGLISH ABSTRACT: Alzheimer’s disease (AD) is a debilitating and chronic neurodegenerative disorder that affects an increasingly large proportion of the elderly population. Given that AD is a leading cause of disability and dependency among the older population globally, the burden of this disease is not limited to those diagnosed. Rather, the burden of AD is imposed on the country’s healthcare system and on those who provide the care. In South Africa, where formal care services are financially and practically inaccessible to the vast majority of the population, family members are often obligated to assume the caregiving role with minimal resources, understanding, and skills necessary to provide the specialised care that AD demands. Whilst a vast amount of literature has investigated the burden of AD on those diagnosed, and the economic burden it has on the country’s healthcare system, there remains a paucity of South African literature investigating the lived experiences of family members who provide the informal care. By drawing on the theoretical perspective of the objective and subjective burden of care, I explored the lived experiences of individuals who provide informal care to family members with AD to gain a comprehensive understanding of their circumstances and their hardship. To gain a deep understanding of lived experiences, I used a cross-sectional and exploratory research design and a phenomenological approach. Using convenience sampling, I recruited 15 informal caregivers of relatives with Alzheimer’s disease, dispersed geographically across South Africa, to participate in individual, semi-structured interviews. During the interviews, participants provided deeply insightful accounts of their caregiving experiences. Thematic analysis of participants’ narratives depicted the burden of caregiving in the following domains: (a) objective burdens of care, i.e. care-recipient dependency resulting in disruption in all domains of the caregiver’s life, including reduced physical, social, and financial well-being, and (b) subjective burdens of care, i.e. the emotional impact of caring (depression, worry, frustration and resentment, grief, and loneliness) closely associated with a diminished sense of self and the lack of reciprocation that caregivers received. In addition, this study found that the burden of care was exacerbated by the following factors: (a) caregiver demographics, i.e., being female, younger, and having a low socio-economic status, (b) living with a sense of obligation to care, (c) a lack of Alzheimer’s disease awareness, (d) being a sole caregiver, and (f) a lack of available and received instrumental, emotional, and informational support. Taken as whole, providing informal care to a family member with Alzheimer’s disease has far-reaching implications for the emotional, physical, social, and financial well-being of caregivers. The findings of this study might prove to be valuable in redressing the gap in local literature as well as contributing to future inquiry into the domain of informal caregiving for people with AD in South Africa. AFRIKAANS OPSOMMING: Alzheimer se siekte (AS) is ’n aftakelende en chroniese neurodegeneratiewe versteuring wat ’n toenemend groot deel van die bejaarde bevolking beïnvloed. Gegewe dat AS ’n leidende oorsaak van gestremdheid en afhanklikheid onder die ouer bevolking wêreldwyd is, is die las van hierdie siekte nie beperk tot diegene by wie die siekte gediagnoseer is nie. Die las van AS word ook op die land se gesondheidsorgstelsel en op die verskaffers van die sorg geplaas. In Suid-Afrika, waar formele sorgdienste vir die oorgrote meerderheid van die bevolking ontoeganklik is, word familielede dikwels verplig om die versorgingsrol te aanvaar met die minimum hulpbronne, insig, en vaardighede wat nodig is om die gespesialiseerde sorg te verleen wat AS verg. Terwyl ’n wye verskeidenheid literatuur ondersoek instel na die las wat AS plaas op diegene by wie die siekte gediagnoseer is, en na die ekonomiese las wat die siekte op die land se gesondheidsorgstelsel plaas, is daar steeds min Suid-Afrikaanse literatuur beskikbaar oor die geleefde ervarings van familielede wat die informele sorg voorsien. Deur gebruik te maak van die teoretiese perspektief van die objektiewe en subjektiewe versorgingslas, het ek die geleefde ervarings ondersoek van individue wat informele sorg verleen aan familielede met AS ten einde ’n begrip van hul omstandighede en hul swaarkry te verkry. Om diepgaande insig in die geleefde ervarings te verkry, het ek ’n deursnee- en verkennende navorsingsontwerp en ’n fenomenologiese benadering gebruik. Aan die hand van geriefsteekproefneming het ek 15 informele versorgers van familielede met Alzheimer se siekte, geografies verspreid oor Suid-Afrika, gewerf om aan individuele, semi-gestruktureerde onderhoude deel te neem. Tydens die onderhoude het deelnemers diep insiggewende weergawes van hul versorgingservarings voorsien. Die tematiese ontleding van deelnemers se narratiewe beeld die versorgingslas in die volgende domeine uit: (a) die objektiewe versorgingslas, dit wil sê sorg-ontvanger-afhanklikheid wat lei tot ontwrigting in alle domeine van die versorger se lewe, waaronder verminderde fisiese, sosiale en finansiële welstand, en (b) subjektiewe versorgingslas, dit wil sê die emosionele impak van omgee (depressie, bekommernis, frustrasie en wrokkigheid, hartseer en eensaamheid) wat geassosieer word met ’n mindere gevoel van self en die gebrek aan wederkerigheid wat versorgers ontvang het. Daarbenewens het hierdie studie bevind dat die versorgingslas vererger is deur die volgende faktore: (a) versorgersdemografie, dit wil sê, vroulik, jonger en met ’n lae sosio-ekonomiese status, (b) leef met ’n gevoel van verpligting om sorg te verleen, (c) ’n gebrek aan bewustheid aangaande Alzheimer se siekte, (d) om ’n enigste versorger te wees, en (f) ’n gebrek aan instrumentele, emosionele en inligtingsondersteuning wat beskikbaar was en ontvang is. In geheel gesien het die voorsiening van informele sorg aan ’n familielid met Alzheimer se siekte verreikende implikasies vir die welstand van versorgers. Die bevindings van hierdie studie kan moontlik waardevol wees om die gaping in die plaaslike literatuur te vul, asook om tot toekomstige ondersoeke na die domein van informele versorging vir mense met AS in Suid-Afrika by te dra. Masters 2023-02-28T06:10:51Z 2023-05-18T07:00:24Z 2023-02-28T06:10:51Z 2023-05-18T07:00:24Z 2023-03 Thesis http://hdl.handle.net/10019.1/127019 en_ZA en_ZA Stellenbosch University xx, 199 pages application/pdf Stellenbosch : Stellenbosch University |
| spellingShingle | Alzheimer's disease -- Patients – Care -- South Africa Caregivers -- South Africa Nervous system – Degeneration -- South Africa Dementia -- Patients -- Care Robertson, Jamie-Lee Exploring the experiences of informal caregivers of family members living with Alzheimer’s disease in South Africa : a qualitative study |
| title | Exploring the experiences of informal caregivers of family members living with Alzheimer’s disease in South Africa : a qualitative study |
| title_full | Exploring the experiences of informal caregivers of family members living with Alzheimer’s disease in South Africa : a qualitative study |
| title_fullStr | Exploring the experiences of informal caregivers of family members living with Alzheimer’s disease in South Africa : a qualitative study |
| title_full_unstemmed | Exploring the experiences of informal caregivers of family members living with Alzheimer’s disease in South Africa : a qualitative study |
| title_short | Exploring the experiences of informal caregivers of family members living with Alzheimer’s disease in South Africa : a qualitative study |
| title_sort | exploring the experiences of informal caregivers of family members living with alzheimer s disease in south africa a qualitative study |
| topic | Alzheimer's disease -- Patients – Care -- South Africa Caregivers -- South Africa Nervous system – Degeneration -- South Africa Dementia -- Patients -- Care |
| url | http://hdl.handle.net/10019.1/127019 |
| work_keys_str_mv | AT robertsonjamielee exploringtheexperiencesofinformalcaregiversoffamilymemberslivingwithalzheimersdiseaseinsouthafricaaqualitativestudy |