The impact of the presence of a full-time live-in caregiver on the parents of a child diagnosed with Autism Spectrum Disorder

Pretorius, Karla (2020-03)

Thesis (MA)--Stellenbosch University, 2020.

Thesis

ENGLISH ABSTRACT: Autism Spectrum Disorder (ASD) is a developmental disorder that affects 1 out of 59 children as well as their families across the world. Parents of children diagnosed with ASD have reported various challenges in the search for appropriate support services. These challenges range from a lack of information about the availability of various support services to a paucity of respite from trained professionals. The lack of respite that parents report has a negative impact on the functioning of the family and might lead to demands on resources, such as difficulties in sustaining a successful marriage or partnership due to an increase in stress. Having a full-time live-in caregiver is an example of support and respite that may address the challenges, and ultimately demands, on resources that parents with children diagnosed with ASD report, but there is a paucity of research about this. The aim of this study was therefore to explore the experiences of parents with a child diagnosed with ASD who have employed a full-time live-in caregiver. The focus was on the capabilities and demands that parents experienced related to having a full-time caregiver. The study was qualitative and exploratory in nature. The researcher conducted semi-structured interviews with individual parents (participants). The semi-structured interviews included specific questions related to the experience of having a child diagnosed with ASD. The interview questions also provided an opportunity for each participant to elaborate on their answers or experiences. A total of 11 participants were interviewed that were all clients of AG, which is a pseudonym for the organisation that formed part of this study. A total of 11 participants were interviewed for the current study.The responses were thematically analysed and the themes that were identified through the thematic analysis were conceptualised according to McCubbin and Patterson’s (1983) Family Adjustment and Adaptation Response (FAAR) model. Four main themes were identified through the process of thematic analysis, namely: (1) the experience of the parents (from diagnosis to finding a suitable live-in caregiver), (2) their family functioning, (3) social interaction and independence, as well as (4) support services currently available for their child, diagnosed with ASD.The findings of this study suggest that although participants experience various challenges during the period of needing more support, they were able to utilise the capabilities that a full-time live-in caregiver offered to decrease demands. An overarching theme that emerged throughout the process of data analysis was the value that the consistency of having a full-time live-in caregiver in various environments added to the experience of the participants. The value of this inconsistency was evident in particular through the generalisation of skills and strategies from one environment to another. This study provides a point of departure for future studies to further investigate the effects of full-time caregiving services to the families of children diagnosed with ASD. It is possible that these findings might increase the awareness of the value related to employing a full-time live-in caregiver that might be required for parents and their children diagnosed with ASD. Keywords: Autism Spectrum Disorder, full-time live-in caregiver, capabilities and demands

AFRIKAANSE OPSOMMING: Autism Spectrum Disorder (ASD) is 'n ontwikkelingsversteuring wat 1 uit 59 kinders sowel as hul families regoor die wêreld aantas. Ouers van kinders wat met ASD gediagnoseer is, het verskeie uitdagings gerapporteer in die soeke na toepaslike ondersteuningsdienste. Hierdie uitdagings wissel van 'n gebrek aan inligting oor die beskikbaarheid van verskillende ondersteuningsdienste, tot 'n gebrek aan respirasie van opgeleide professionele persone. As gevolg van 'n gebrek aan verligting deur ouers, het dit 'n negatiewe impak op die gesin se funksionering en dit kan lei tot eise aan hulpbronne, soos probleme om 'n suksesvolle huwelik of 'n vennootskap te onderhou as gevolg van 'n toename in spanning.Om 'n voltydse inwonende versorger te hê, is 'n voorbeeld van ondersteuning en verligting wat die uitdagings en uiteindelik eise kan aanpak oor hulpbronne wat ouers met kinders wat met ASD gediagnoseer is, maar daaris nog min navorsing hieroor. Die doel van hierdie studie was dus om die ervarings van ouers met 'n ASD-gediagnoseerde kind te ondersoek wat 'n voltydse inwonende versorger het. Die fokus was op die vermoëns en eise wat ouers ervaar met betrekking tot 'n voltydse versorger. Die studie was kwalitatief en verkennend van aard. Die navorser het semi-gestruktureerde onderhoude met individuele ouers (deelnemers) gevoer. Die semi-gestruktureerde onderhoude bevat spesifieke vrae wat verband hou met die ervaring van die diagnose van 'n kind met ASD. Die onderhoudsvrae het ook aan elke deelnemer die geleentheid gebied om hul antwoorde of ervarings uit te brei. Daar is onderhoude met 11 deelnemers gevoer wat almal kliënte van AG was, wat 'n skuilnaam is vir die organisasie wat deel vorm van hierdie studie. Die onderhoude is tematies ontleed en die temas wat deur die tematiese analise geïdentifiseer is, is gekonseptualiseer volgens McCubbin en Patterson (1983) se familieaanpassing en aanpassingsrespons (FAAR) model. Vier hooftemas is geïdentifiseer deur middel van die tematiese ontleding, naamlik: (1) die ervaring van die ouers (van diagnose tot die vind van 'n geskikte inwonende versorger), (2) hul gesinsfunksionering, (3) sosiale interaksie en onafhanklikheid, sowel as (4) ondersteuningsdienste wat tans beskikbaar is vir hul kind, gediagnoseer met ASD. Die bevindinge van hierdie studie dui daarop dat alhoewel deelnemers verskillende uitdagings ervaar gedurende die periode waarin hulle meer ondersteuning nodig het, hulle die vaardighede kon benut wat 'n voltydse inwonende versorger aangebied het om eise te verlaag. 'n Oorkoepelende tema wat tydens die proses van data-ontleding na vore gekom het, was die waarde dat die konsekwentheid van 'n voltydse inwonende versorger in verskillende omgewings tot die ervaring van die deelnemers toegevoeg het. Die waarde van hierdie konsekwentheid blyk veral deur die veralgemening van vaardighede en strategieë van een omgewing na 'n ander. Hierdie studie bied 'n vertrekpunt vir toekomstigestudies om die gevolge van voltydse versorgingsdienste verder te ondersoek vir die gesinne van kinders wat met ASD gediagnoseer is.Dit is moontlik dat hierdie bevindinge die bewustheid van die waarde wat verband hou met die gebruik van 'n voltydse inwonende versorger kan verhoog wat nodig is vir ouers en hul kinders wat met ASD gediagnoseer is. Sleutelwoorde: outisme spektrum versteuring, voltydse inwonende versorger, vermoëns en eise

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