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Caring for people living with motor neuron disease: a qualitative study of challenges and coping among informal caregivers in South Africa
Thesis (MA)--Stellenbosch University, 2024.
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| Format: | Thesis |
| Language: | English |
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Stellenbosch University
2025
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| _version_ | 1867614032226156544 |
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| access_status_str | Open Access |
| author | Allan, Bailey |
| author2 | Kagee, Ashraf |
| author_browse | Allan, Bailey Kagee, Ashraf |
| author_facet | Kagee, Ashraf Allan, Bailey |
| author_sort | Allan, Bailey |
| collection | Thesis |
| dc_rights_str_mv | Stellenbosch University |
| description | Thesis (MA)--Stellenbosch University, 2024. |
| format | Thesis |
| id | oai:scholar.sun.ac.za:10019.1/131584 |
| institution | Stellenbosch University (South Africa) |
| language | English |
| last_indexed | 2026-06-10T12:45:35.384Z |
| license_str | Other — see source repository |
| provenance_str_mv | Harvested via OAI-PMH from SUNScholar — Stellenbosch University Repository |
| publishDate | 2025 |
| publishDateRange | 2025 |
| publishDateSort | 2025 |
| publisher | Stellenbosch University |
| publisherStr | Stellenbosch University |
| record_format | dspace |
| source_str | SUNScholar — Stellenbosch University Repository |
| spelling | oai:scholar.sun.ac.za:10019.1/131584 Caring for people living with motor neuron disease: a qualitative study of challenges and coping among informal caregivers in South Africa Allan, Bailey Kagee, Ashraf Stellenbosch University. Faculty of Arts and Social Sciences. Department of Psychology. Motor neurons -- Diseases -- Patients -- South Africa Caregivers -- South Africa Nervous system -- Degeneration -- South Africa Amyotrophic lateral sclerosis Thesis (MA)--Stellenbosch University, 2024. ENGLISH ABSTRACT: Motor neuron disease (MND) is a progressive and fatal neurodegenerative condition that is increasingly impacting individuals and their families globally. Despite being relatively rare, the prevalence is rising due to an aging population, with significant socioeconomic consequences, particularly in countries with fragmented healthcare systems, financial challenges, and limited resources and skills, such as South Africa. Family members often assume the caregiving role, leading to substantial caregiver burden in a context where support is lacking. Against this backdrop, and given the scarcity of research on MND within South African communities, this study aimed to investigate the challenges faced by caregivers of individuals with MND and the coping strategies they employ. The study adopted an exploratory and qualitative approach to gain an in-depth understanding of lived experiences. Semi-structured interviews were conducted with 17 informal caregivers of MND patients across South Africa. The data, transcribed and analysed using thematic analysis, revealed insights into the caregiver burden through Lazarus' Objective and Subjective Burden of Care perspective. The narratives emerging from this framework included objective burden being physical strain, the impact on caregivers' social environments, and difficulties with healthcare services, while the subjective burden encompassed perceived loss of love and self, guilt, and emotional impact. The study also identified coping strategies using the Transactional Model of Stress and Coping, with emotion-focused strategies encompassing religion, acceptance, and denial, while problem-focused strategies included healthcare support, support groups, self-education, and family support. The findings indicate that caregivers of individuals with MND undergo an intensive burden of care with limited support, therefore proposing a call for further research to address these gaps and improve support for informal MND caregivers and those they care for. AFRIKAANSE OPSOMMING: Motorneuronsiekte (MNS) is 'n progressiewe en dodelike neurodegeneratiewe toestand wat individue en hul gesinne wêreldwyd beïnvloed. Ten spyte daarvan dat dit relatief skaars is, is t is as gevolg van 'n verouderende bevolking, met merkwaardige sosio-ekonomiese gevolge, die toename in gevalle is veral in lande met gefragmenteerde gesondheidsorgstelsels, finansiële uitdagings en beperkte hulpbronne en vaardighede, soos Suid-Afrika. Gesinslede neem dikwels die eksterene ondersteuning. Met die bogenoemde in ag, en gegewe die skaarsheid van navorsing oor MNS binne Suid-Afrikaanse gemeenskappe, was hierdie studie daarop gemik om die uitdagings te ondersoek wat versorgers van individue met MNS in die gesig staar en die strategieë wat hulle in plek stel om te oorleef. Die studie het 'n verkennende en kwalitatiewe benadering gebruik om 'n diepgaande begrip van geleefde ervarings te verkry. Semigestruktureerde onderhoude is met 17 informele versorgers van MNS-pasiënte regoor Suid-Afrika gevoer. Die data, getranskribeer en geanaliseer met behulp van tematiese ontleding, het insigte in die versorgerlas deur Lazarus se objektiewe en subjektiewe versorgingslasperspektief geopenbaar. Die ervaarings wat uit hierdie raamwerk na vore gekom het, het die volgende objektiewe laste genoem, naamlik fisiese spanning, die impak op versorgers se sosiale omgewings en probleme met gesondheidsorgdienste, terwyl die subjektiewe las waargenome verlies van liefde en self, skuldgevoelens en emosionele impak ingesluit het. Die studie het ook verskillende oorlewens strategieë geïdentifiseer deur die transaksionele model van stres en oorlewening te implementeer die emosie-gefokusde strategieë wat godsdiens, aanvaarding en ontkenning insluit, terwyl probleemgefokusde strategieë gesondheidsorgondersteuning, ondersteuningsgroepe, selfopvoeding en gesinsondersteuning ingesluit het. Die bevindinge dui daarop aan dat versorgers van individue met MNS 'n soek in gestel vir verdere navorsing om hierdie leemtes aan te spreek en ondersteuning vir informele MNS-versorgers en diegene wie hulle versorg te verbeter. Sleutelwoorde: Motorneuronsiekte, informele versorger, informele sorg, versorgerslas, oorlewing, geleefde ervarings, tematiese ontleding, Suid-Afrika. Masters 2025-01-28T09:09:57Z 2025-01-28T09:09:57Z 2024-12 Thesis https://scholar.sun.ac.za/handle/10019.1/131584 en Stellenbosch University 199 pages application/pdf Stellenbosch University Stellenbosch : Stellenbosch University |
| spellingShingle | Motor neurons -- Diseases -- Patients -- South Africa Caregivers -- South Africa Nervous system -- Degeneration -- South Africa Amyotrophic lateral sclerosis Allan, Bailey Caring for people living with motor neuron disease: a qualitative study of challenges and coping among informal caregivers in South Africa |
| title | Caring for people living with motor neuron disease: a qualitative study of challenges and coping among informal caregivers in South Africa |
| title_full | Caring for people living with motor neuron disease: a qualitative study of challenges and coping among informal caregivers in South Africa |
| title_fullStr | Caring for people living with motor neuron disease: a qualitative study of challenges and coping among informal caregivers in South Africa |
| title_full_unstemmed | Caring for people living with motor neuron disease: a qualitative study of challenges and coping among informal caregivers in South Africa |
| title_short | Caring for people living with motor neuron disease: a qualitative study of challenges and coping among informal caregivers in South Africa |
| title_sort | caring for people living with motor neuron disease a qualitative study of challenges and coping among informal caregivers in south africa |
| topic | Motor neurons -- Diseases -- Patients -- South Africa Caregivers -- South Africa Nervous system -- Degeneration -- South Africa Amyotrophic lateral sclerosis |
| url | https://scholar.sun.ac.za/handle/10019.1/131584 |
| work_keys_str_mv | AT allanbailey caringforpeoplelivingwithmotorneurondiseaseaqualitativestudyofchallengesandcopingamonginformalcaregiversinsouthafrica |