The experiences of siblings of children with autism

[摘要] 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.

[发布机构] Stellenbosch University