Raising a child with Autism Spectrum Disorder : the role of parent support systems

Eksteen, Nana (2019-04)

Thesis (MEdPsych)--Stellenbosch University, 2019.

Thesis

ENGLISH ABSTRACT : Autism Spectrum Disorder (ASD) is a developmental disorder that is currently being diagnosed in one in every 59 children worldwide. It is considered one of the most stressful childhood disorders for parents to cope with, and it has been associated with the escalation of economic-, social-, physical- and psychological strain on families, as well as a decrease in overall family well-being. Parents, who are faced with the challenges of raising a child with ASD, are often in great need of social support. Social support can be provided in various forms and come from a variety of sources. Research on parents’ support needs for a child with ASD and the ways in which they perceive different support systems is important, as it could increase public understanding of effective support systems for such parents. This study on the support systems of parents of children with ASD is situated within the field of educational support, because parent support is an integral part of learner support. This qualitative study explored the value that support systems have in the lives of South African parents who are raising a child with ASD. The individual lived experiences of four parents with regards to their support needs and –systems were researched as guided by the following research questions: • What are the support needs of parents raising a child with ASD? • What are the experiences of parents with the support systems that they use? • Why do parents raising a child with ASD endorse some support systems over others? With narrative inquiry as design, I sought to tell the stories of these parents. My understanding was that of multiple realities that are constructed by individuals who share similar, but also unique, life experiences. I positioned myself in the interpretive paradigm, as I wanted to understand the individual lived experiences of these parents with regards to their support needs and –systems. Data was collected by conducting individual in-depth interviews with the four purposively selected parents who are the primary caregivers of a child with ASD, for the rich and useful information they could provide. What the study revealed was that such parents face many personal-, family- and social challenges that stem from their child’s maladaptive behaviour and for which they need reliable support systems. The support these four parents relied on included personal resources, family support, friends, therapists and schools. The findings of this study have implications for how the learning-support environment needs to engage with children with ASD and their parents. What the narratives of parents of children with ASD tell us, is that the support needs and valued support systems of each parent of a child with ASD are just as much on a spectrum as the children with ASD are. Therefore, there should exist an understanding that, though families of a child with ASD share similarities, each family’s circumstances are unique, making it important to understand their specific needs and to support them and their child with ASD accordingly.

AFRIKAANSE OPSOMMING : Outisme Spektrum Versteuring (OSV) is ‘n onwikkelingsteurnis wat tans by een in elke 59 kinders wêreldwyd gediagnoseer word. Dit word gereken as een van die mees veeleisende kinderverteurings vir ouers om mee om te gaan en dit word geassosieer met ‘n toename in ekonomiese-, sosiale, fisieke- en sielkundige spanning binne gesinne asook ‘n afname in die algemene welstand van gesinne. Ouers wat gekonfronteer word met die uitdagings daarvan om ‘n kind met OSV groot te maak, het dikwels ‘n groot behoefte aan sosiale ondersteuning. Sosiale ondersteuning kan in baie vorme en van ‘n wye verskeidenheid bronne kom. Navorsing oor die oundersteuningsbehoeftes en die wyses waarop hierdie ouers ondersteuning ervaar, is belangrik aangesien dit die publiek se verstaan van effektiewe ondersteuningsisteme vir die ouers van kinders met OSV kan verhoog. Hierdie studie van die ondersteuningsisteme van ouers met kinders met OSV is gesetel binne die veld van opvoedkundige ondersteuning omdat ouerondersteuning ‘n integrale deel van leerderondersteuning is. Hierdie kwalitatiewe studie het die waarde van ondersteuningsisteme in die lewens van SuidAfrikaanse ouers met kinders op die outisme spektrum verken. Die individuele lewenservarings van hierdie ouers, in terme van hulle ondersteuningsbehoeftes en -sisteme, is ondersoek soos gelei deur die volgende navorsingsvrae: • Wat is die ondersteuningsbehoeftes van ouers wat kinders met OSV grootmaak? • Hoe ervaar ouers die ondersteuningsisteme waarvan hulle gebruik maak? • Waarom verkies ouers wat kinders met OSV grootmaak sekere ondersteuningsisteme bo ander? Met narratiewe ondersoek as navorsingsontwerp, het ek gepoog om hierdie ouers se stories te vertel. My uitgangspunt was dat veelvuldige realiteite gekonstrueer word wanneer individue gelyksoortige, dog unieke, lewenservaringe deel. Ek het myself binne die interpretiewe paradigma geposisioneer omdat ek die individuele lewenservarings van hierdie ouers, in terme van hul ondersteuningsbehoeftes en -sisteme, wou verstaan. Data is versamel deur individuele, in-diepte ouderhoude te voer met vier ouers van kinders met OSV, wat doelgerig uitgekies is vir die ryk en bruikbare inligting wat hulle kon voorsien. Wat die studie bevind het, was dat ouers van kinders met OSV ernstige persoonlike- familie- en sosiale uitdagings in die gesig staar as ‘n direkte gevolg van hul kinders se wanaangepaste gedragspatrone, en dat hulle betroubare ondersteuningsisteme benodig om hiervoor te kompenseer. Die ondersteuning waarop hierdie vier ouers staatgemaak het, het persoonlike hulpbronne, famile-ondersteuning, vriende, terapeute en skole ingesluit. Die bevindinge van hierdie studie het implikasies vir hoe die omgewing van leerondersteuning met kinders met OSV en hulle ouers moet omgaan. Wat die narratiewe van ouers met kinders met OSV vir ons sê, is dat die ondersteuningsbehoeftes en gewaardeerde ondersteuningsisteme van elke ouer met ‘n kind met OSV net soveel op `n spektrum is as die kinders met OSV self. Daarom moet daar ‘n verstaan wees van die feit dat, alhoewel die families van ‘n kind met OSV ooreenkomste deel, elke familie se omstandighede uniek is, wat ons wys op die belangrikheid daarvan om hul spesifieke behoeftes te verstaan en hulle daarvolgens te ondersteun.

Please refer to this item in SUNScholar by using the following persistent URL: http://hdl.handle.net/10019.1/106201
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