Raising a child with autism : exploring family support structures

Hoffman, Elaine (2012-12)

Thesis(MEdPsych)--Stellenbosch University, 2012.

Thesis

ENGLISH ABSTRACT: Autism or Autism Spectrum Disorder (ASD) is a condition that, at present, affects approximately one out of every 100 children globally and indications are that the prevalence thereof is steadily on the rise. ASD is a complex neurological condition that impairs social interaction, communication and behaviour. Research on the wide-ranging effects of ASD and its unique characteristics in each child with ASD is widely available. Several studies refer to the fact that ASD has an impact on the family unit, but very few researchers have investigated the support that families from different cultural groups in South Africa are enjoying whilst raising a child with autism. The current situation being what it is means that professionals and families have very little data on the subject and inadequate support is available to address the specific needs of families who are raising a child with autism. The aim of this study was to investigate the support structures of three families from three different cultural groups in South Africa who were raising a child with autism. The central issue that was researched was the support structures available to parents raising a child with autism, and how parents access that support. This is a qualitative study within an interpretive research paradigm. In this case study, the methods of data collection comprised semi-structured interviews, observations and reflective journals. This design embraced qualitative research methods that could expose the uniqueness of each family’s experience and allowed participants the freedom to express this. The three families, who were purposefully selected for this study, were from different cultural backgrounds. One of the children in each family met the criteria published in the Diagnostic and statistical manual of mental disorders, fourth edition, text revision (American Psychiatric Association, 2000) for Autism or Pervasive Developmental Disorder not Otherwise Specified (PDD-NOS). The study found that the parents in the three families received support from their spouses and the neuro-typical siblings. The families also enjoyed physical support, financial support and emotional support from different sources. Parents reported feeling supported when others show acceptance and understanding of their children’s deficits and when such others are prepared to ‘go the extra mile’. The three families also perceived information and guidance as a valuable source of support. Even though they had firm support structures in place, they also reported on the lack of support available to them. All three families enjoyed these forms of support, but it was interesting to find out that the families received the support from different sources.

AFRIKAANSE OPSOMMING: Outisme of outisme spektrum versteuring (OSV) is 'n toestand wat tans ongeveer een uit elke 100 kinders wêreldwyd affekteer en daar is aanduidings dat die voorkoms daarvan steeds toeneem. OSV is 'n komplekse neurologiese toestand wat swak sosiale interaksie, kommunikasie en gedrag tot gevolg het. Navorsingsresultate oor die breë gevolge van OSV en die unieke eienskappe daarvan in elke kind met OSV is algemeen beskikbaar. Verskeie studies verwys na die feit dat OSV 'n impak het op die gesinseenheid, maar tot dusver het baie min navorsers die ondersteuning ondersoek wat gesinne uit verskillende kulturele groepe in Suid-Afrika tydens die opvoeding van 'n kind met outisme geniet . Die huidige situasie voorsien professionele mense en gesinne van baie min data oor die onderwerp en onvoldoende ondersteuning is beskikbaar om die spesifieke behoeftes van gesinne met 'n kind met outisme aan te spreek. Die doel van hierdie studie was om ondersoek in te stel na die ondersteuning wat gesinne in verskillende kultuurgroepe in Suid-Afrika tydens die opvoeding van ‘n kind met outisme geniet. Die sentrale ondersoekvraag het betrekking gehad op ondersteuningstrukture vir gesinne met ‘n kind met outisme binne hul kultuurgroep, sowel as die wyse waarop die gesinne toegang tot die ondersteuning verkry. Die studie was kwalitatief van aard binne 'n interpretatiewe navorsingsparadigma en ’n gevallestudie is as navorsingsontwerp gekies. Data is deur middel van semi-gestruktureerde onderhoude, waarnemings en reflektiewe joernale ingesamel. Die kwalitatiewe navorsingsmetodes omvat die uniekheid van elke gesin se ervaring en laat deelnemers die vryheid om uitdrukking daaraan te gee. Drie gesinne is doelbewus vir hierdie studie gekies. Die gesinne moes oor die volgende kenmerke beskik: Hulle moes uit verskillende kulturele agtergronde (Afrikaan, Wit en Indiër) kom. Hul kind moes voldoen aan die kriteria in die Diagnostiese en Statistiese Handleiding van geestesversteurings, vierde uitgawe, teks hersiening (2000) vir Outisme of pervasieve ontwikkelingsstoornis nie anders gespesifiseer nie (PDD-NOS). Verskeie etiese beginsels is vir hierdie studie nagekom om te verseker dat die navorsing eties was. Die studie het bevind dat die ouers in die drie gesinne ondersteuning van hul gades en die neurotipiese broers en susters van die kind met outisme ontvang het. Die gesinne het ook fisiese ondersteuning, finansiële steun en emosionele ondersteuning vanuit verskillende bronne geniet. Die gesinne het aangedui dat hul ondersteun voel wanneer hul kinders se afwykings aanvaar word, begrip daarvoor getoon word en andere bereid was om die ‘ekstra myl te loop’. Die drie gesinne het ook inligting en leiding as waardevolle bronne van ondersteuning ervaar. Selfs al het die families sterk ondersteuningstrukture in plek gehad, het hulle ook die gebrek aan ondersteuning uitgelig. Al drie gesinne geniet die bogenoemde vorme van ondersteuning, maar dit was interessant om uit te vind dat die families hierdie ondersteuning vanuit verskillende bronne ontvang het.

Please refer to this item in SUNScholar by using the following persistent URL: http://hdl.handle.net/10019.1/71773
This item appears in the following collections: