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Exploring the psychological well-being of parents raising a child with autism spectrum disorder
Thesis (MEdPsych)--Stellenbosch University, 2024.
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| Format: | Thesis |
| Language: | English |
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Stellenbosch : Stellenbosch University
2024
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| _version_ | 1867613998625587200 |
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| access_status_str | Open Access |
| author | Du Plessis, J. G. |
| author2 | Conradie, Karlien |
| author_browse | Conradie, Karlien Du Plessis, J. G. |
| author_facet | Conradie, Karlien Du Plessis, J. G. |
| author_sort | Du Plessis, J. G. |
| collection | Thesis |
| dc_rights_str_mv | Stellenbosch University |
| description | Thesis (MEdPsych)--Stellenbosch University, 2024. |
| format | Thesis |
| id | oai:scholar.sun.ac.za:10019.1/130659 |
| institution | Stellenbosch University (South Africa) |
| language | English |
| last_indexed | 2026-06-10T12:45:01.662Z |
| license_str | Other — see source repository |
| provenance_str_mv | Harvested via OAI-PMH from SUNScholar — Stellenbosch University Repository |
| publishDate | 2024 |
| publishDateRange | 2024 |
| publishDateSort | 2024 |
| publisher | Stellenbosch : Stellenbosch University |
| publisherStr | Stellenbosch : Stellenbosch University |
| record_format | dspace |
| source_str | SUNScholar — Stellenbosch University Repository |
| spelling | oai:scholar.sun.ac.za:10019.1/130659 Exploring the psychological well-being of parents raising a child with autism spectrum disorder Du Plessis, J. G. Conradie, Karlien Stellenbosch University. Faculty of Education. Dept. of Educational Psychology. Autism spectrum disorder Fetal alcohol spectrum disorders Parents Mental health Psychometrics Well-being Social sciences -- Research Interviewing -- Technique UCTD Ryff’s Scales of Psychological Well-Being Thesis (MEdPsych)--Stellenbosch University, 2024. AFRIKAANSE OPSOMMING: Outismespektrumversteuring (OSV) is ʼn neuro-ontwikkelingsversteuring wat tipies tydens die kinderjare gediagnoseer word. Hierdie toestand kan aanleiding gee tot probleme in kommunikasie, emosionele uitdrukking en probleme in sosiale gedrag. Die ouers van hierdie kinders ondervind dikwels stressors soos ʼn gebrek aan begrip, onakkurate etikettering, onvoldoende ondersteuning regdeur die diagnostiese prosedure en beperkte opvoedkundige opsies. Hierdie faktore kan hul gesinne strem en hul vermoë belemmer om kinders met OSV effektief te versorg. OSV is ʼn algemene toestand wêreldwyd, wat ongeveer een uit elke 132 individue affekteer. Volgens statistiese data van die Verenigde State van Amerika word die voorkoms van OSV geskat op ongeveer een uit 59 kinders. Daarteenoor dui syfers van die Wes-Kaap in Suid-Afrika ʼn laer voorkoms van OSV aan, met ongeveer een uit elke 86 kinders wat deur die versteuring geaffekteer word. Daar is egter ʼn tekort aan navorsing wat in Suid-Afrika gedoen word wat insigte oor die versteuring verskaf. Met inagneming van die deurdringende aard van OSV, lyk dit onwaarskynlik dat die voorkomssyfers laer in ander provinsies van Suid-Afrika sal wees. Om ʼn kind groot te maak, kan aansienlike uitdagings bied, veral wanneer aandag gegee word aan die behoeftes van ʼn kind wat met OSV gediagnoseer is. Nietemin, blyk daar ʼn tekort aan studies in Suid-Afrika te wees. Hierdie studie het hoofsaaklik die sielkundige welstand van ouers ondersoek wat kinders grootmaak wat met OSV gediagnoseer is. Die volgende vrae het die navorsing gerig: • “Hoe kan die sielkundige welstand van ouers wat kinders met OSV grootmaak, verstaan word?”• “Wat is sommige van die uitdagings wat ouers ervaar om ʼn kind met OSV groot te maak?”• “Wat is die impak van die diagnose op die verhoudings tussen ouers, hul kind met OSV, broers en susters, en ander familielede?” • “Hoe kan die sielkundige gesondheid en algehele funksionering van die ouers wat ‘n kind met OSV grootmaak, ondersteun word?” Hierdie navorsing het die ervarings van vyf ouers ondersoek wat ʼn kind grootmaak wat met OSV gediagnoseer is deur die gebruik van ʼn enkel gevallestudie-ontwerp. Data is met semi-gestruktureerde onderhoude ingesamel, terwyl deelnemers se psigologiese welstand geassesseer is met behulp van Ryff se Skale van Sielkundige Welstand (RSPW). Die toepassing van refleksiewe tematiese analise (RTA) het nege prominente temas gegenereer, wat baie aspekte insluit, soos om OSV te verstaan, ondersteuning te soek, verhoudingsdinamika, die koste van OSV, sosiale lewe, gedragsuitdagings, die emosionele reis, die opspoor van ondersteuning en selfversorging. Die navorsingsbevindinge dui daarop dat ouers dikwels verwarring, onsekerheid enbotsende emosies ervaar vanaf geboorte tot die pre-diagnostiese fases. Boonop ervaar ouers gereeld ʼn komplekse en blywende emosionele toestand wat gekenmerk word deur teleurstelling en droefheid terwyl hulle die uitdagings inherent aan hul daaglikse lewens konfronteer. Die diagnose van OSV het die potensiaal om gesinsverhoudings aansienlik te beïnvloed, wat lei tot kwessies oor die toedeling van aandag en hulpbronne. Gevolglik kan nie-OSV broers en susters dikwels uitgesluit of verwaarloos voel. Ouers ondervind ook verhoogde stresvlakke as gevolg van gedragsprobleme, verhoogde sosiale isolasie en verminderde waargenome sosiale ondersteuning. Hierdie gesinne ondervind ook uitdagings met hoë mediese en gesondheidsorgkostes. Die studie het voorstelle ingesluit wat betrekking het tot verskeie aspekte van ouerondersteuning, insluitend opvoedkundige hulpbronne, ondersteuningsgroepe, selfversorgingspraktyke, sowel as terapeutiese en finansiële berading. ENGLISH ABSTRACT: Autism spectrum disorder (ASD) is a neurodevelopmental disorder typically diagnosed during childhood. The condition can give rise to difficulties in communication, emotional expression, and problems in social behaviour. The parents of these children often face stressors such as a lack of understanding, inaccurate labelling, inadequate support throughout the diagnosis procedure, and limited educational options. These factors can put strain on their families and impede their capacity to nurture children with ASD effectively. ASD is a prevalent condition globally, affecting approximately one in every 132 individuals. According to statistical data from the United States of America (USA), the prevalence of ASD is estimated to be about one in 59 children. In contrast, figures from the Western Cape in South Africa indicate a lower prevalence of ASD, with about one in every 86 children affected by the disorder. However, there is a shortage of research conducted in South Africa that provides insights into the prevalence. Considering the pervasive nature of ASD, it seems improbable that the prevalence rates would be lower in other provinces of South Africa. Raising a child can provide significant challenges, particularly when attending to the needs of a child diagnosed with ASD. Nevertheless, there appears to be a shortage of studies in South Africa. The study primarily examined the psychological well-being of parents raising children diagnosed with ASD. The following questions guided the research: • “How can the psychological well-being of parents who raise children with ASD be understood?” • “What are some of the difficulties experienced by parents raising a child with ASD?” • “What is the impact of the diagnosis on the relationships between parents, their child with ASD, siblings, and other family members?” • “How can the psychological health and overall functioning of the parents raising a child with ASD be supported?” This research examined the experiences of five parents who are raising a child diagnosed with ASD through the utilisation of a single case study design. Data was collected through semi-structured interviews, while participants’ psychological well-being was assessed using Ryff’s Scales of Psychological Well-Being. The application of reflexive thematic analysis generated nine prominent themes, encompassing many aspects such as understanding ASD, seeking support, relationship dynamics, the cost of ASD, social life, behavioural challenges, the emotional journey, finding support and self-care. The research findings suggest that parents often experience confusion, uncertainty, and conflicting emotions from birth to the pre-diagnostic phases. Moreover, parents regularly experience a complex and enduring emotional state characterised by disappointment and grief while confronting the difficulties inherent in their daily lives. The diagnosis of ASD has the potential to significantly impact family relations, resulting in issues about the allocation of attention and resources. Consequently, non-ASD siblings may frequently find themselves excluded or neglected. Parents also encounter elevated stress levels due to behavioural difficulties, heightened social isolation, and decreased perceived social support. These families additionally encounter significant medical and healthcare costs. The study included suggestions pertaining to several aspects of parental support, including educational resources, support groups, self-care practices as well as therapeutic and financial counselling. Masters 2024-02-18T16:18:52Z 2024-04-27T01:39:44Z 2024-02-18T16:18:52Z 2024-04-27T01:39:44Z 2024-03 Thesis https://scholar.sun.ac.za/handle/10019.1/130659 en Stellenbosch University xvi, 174 pages : illustrations application/pdf Stellenbosch : Stellenbosch University |
| spellingShingle | Autism spectrum disorder Fetal alcohol spectrum disorders Parents Mental health Psychometrics Well-being Social sciences -- Research Interviewing -- Technique UCTD Ryff’s Scales of Psychological Well-Being Du Plessis, J. G. Exploring the psychological well-being of parents raising a child with autism spectrum disorder |
| title | Exploring the psychological well-being of parents raising a child with autism spectrum disorder |
| title_full | Exploring the psychological well-being of parents raising a child with autism spectrum disorder |
| title_fullStr | Exploring the psychological well-being of parents raising a child with autism spectrum disorder |
| title_full_unstemmed | Exploring the psychological well-being of parents raising a child with autism spectrum disorder |
| title_short | Exploring the psychological well-being of parents raising a child with autism spectrum disorder |
| title_sort | exploring the psychological well being of parents raising a child with autism spectrum disorder |
| topic | Autism spectrum disorder Fetal alcohol spectrum disorders Parents Mental health Psychometrics Well-being Social sciences -- Research Interviewing -- Technique UCTD Ryff’s Scales of Psychological Well-Being |
| url | https://scholar.sun.ac.za/handle/10019.1/130659 |
| work_keys_str_mv | AT duplessisjg exploringthepsychologicalwellbeingofparentsraisingachildwithautismspectrumdisorder |