The experiences of siblings of children with autism

Bishop, Sunette (Stellenbosch : Stellenbosch University, 2012-03)

Thesis (MEdPsych)--Stellenbosch University, 2012.

Thesis

ENGLISH ABSTRACT: Autism or Autism Spectrum Disorder (ASD) is a condition that presently affects approximately 1 out of every 110 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 allude to the fact that ASD has an impact on the family unit, but very few researchers have investigated the experience in the Western Cape Province, South Africa, from a sibling's perspective. The current situation leaves researchers, parents and siblings with very little data on the subject and inadequate support is available to address the specific needs of siblings. The aim of this study was to investigate siblings' views on living with a brother/sister with ASD. The central research question relates to the experiences of siblings of children with ASD. Sub-questions were focused on exploring their perceptions of ASD; relationships with brothers/sisters with ASD, peers and parents; sibling responsibilities and worries; and the extent of the pressure they experience as a result of the related added responsibilities. This is a qualitative study within an interpretive/constructivist research paradigm. The study was guided by an ecosystemic perspective as the theoretical framework. The methods of data collection comprised semi-structured interviews with siblings of children with ASD and open-ended questionnaires for parents. The qualitative research methods embraced the uniqueness of each sibling's experience and allowed participants the freedom to express this. Eight participants were purposefully selected for this study. The participants were between the ages of seven and seventeen years and each one had a brother who had been diagnosed with ASD. All the siblings lived with the brother with ASD and their parents in the Western Cape Province of South Africa. Siblings were from different genders, as well as diverse socio-economic and cultural groups. All the parents of the siblings were biological parents and in all cases were married with no visible signs of marital stress. Several principles were adhered to in this study, to ensure that the research was ethical. Several important themes emerged from the study. These include the siblings' need for information pertaining to ASD; worries and feelings of guilt experienced by siblings as a direct result of ASD; responsibilities that siblings feel obliged to take on; the nature of relationships with a brother with ASD, parents and peers; the need for support structures; and an indication of the type of support that siblings require.

AFRIKAANSE OPSOMMING: Outisme of Outistiese Spektrum Versteuring is 'n toestand wat tans na raming 1 uit 110 kinders wêreldwyd affekteer en dit wil voorkom asof die getalle stelselmatig toeneem. Outisme is 'n komplekse neurologiese versteuring wat 'n impak op sosiale interaksie, kommunikasie en gedrag het. Navorsing in die kompleksiteite van Outisme in kinders is redelik vrylik beskikbaar en navorsers dui aan dat die kondisie ook 'n impak op die gesin het. Tans is daar baie min navorsing wat op die ervarings of belewenis van sibbe van kinders met Outisme in die Wes-Kaap, Suid Afrika, fokus. Die gevolg hiervan is 'n daadwerklike tekort aan data tot die beskikking van navorsers, ouers en sibbe ten einde gepaste ondersteuning aan sibbe te bied. Die doel van hierdie studie was om die sibbe van kinders met Outisme se oogpunt en ervarings te ondersoek. Die sentrale navorsingsvraag het beoog om te ontdek wat sibbe se belewenis van hul lewe saam met 'n broer/suster met Outisme behels. Ondergeskikte vrae hou verband met die sib se persepsie van Outisme; verhoudings met 'n broer/suster met Outisme, eweknieë en ouers; die sib se verantwoordelikhede en meegaande kommer en druk; ondersteuning wat tans beskikbaar is; en die ondersteuning waaraan sibbe 'n behoefte toon. Die studie is kwalitatief van aard binne 'n interpretiwistiese/konstruktiwistiese navorsingsparadigma. Die onderliggende teoretiese raamwerk van hierdie studie is die ekosistemiese perspektief. Data is ingesamel deur middel van semi-gestruktureerde onderhoude met sibbe, asook oop-einde vraelyste aan ouers. Kwalitatiewe navorsingsmetodes het die uniekheid van elke sib se ervaring in ag geneem en sibbe toegelaat om hulle ervarings vrylik uit te druk. Agt deelnemers is doelgerig gekies vir die studie. Die deelnemers was tussen die ouderdomme van sewe en sewentien jaar oud en elk het 'n broer wat met Outisme gediagnoseer is. Die sibbe bly tans saam met hul ouers en 'n broer met Outisme in die Wes-Kaap, Suid Afrika. Die sibbe het vanuit verskillende geslagte, asook verskeie sosio-ekonomiese en kulturele agtergronde gekom. Die ouers van die sibbe was almal biologiese ouers, steeds getroud met geen merkbare spanning in die huwelik nie. Verskeie etiese beginsels is in die studie gehandhaaf ten einde etiese korrektheid te verseker. Verskeie belangrike temas het na vore gekom. Dit sluit die volgende in: 'n Behoefte by die sibbe aan inligting rakende Outisme; sibbe se ervaring van bekommernisse en skuldgevoelens as 'n direkte gevolg van Outisme; verantwoordelikhede wat deur sibbe aanvaar word; die aard van verhoudinge met die broer met Outisme, ouers en gelykes; die behoefte aan ondersteuning; en 'n aanduiding van die tipe ondersteuning wat deur sibbe verlang word.

Please refer to this item in SUNScholar by using the following persistent URL: http://hdl.handle.net/10019.1/19952
This item appears in the following collections: