The Quality of Life of Siblings of Children with Autism Spectrum Disorder

This study investigated how siblings of children with autism spectrum disorder (ASD) describe and define their quality of life. Using a qualitative research design, the authors collected data through a 4-stage process which included in-depth interviews of 17 children ages 6 to 14 and focus groups. A...

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Bibliographic Details
Published in:Exceptional children 2011-09, Vol.78 (1), p.41-55
Main Authors: Moyson, Tinneke, Roeyers, Herbert
Format: Article
Language:English
Subjects:
Autism
Autism Spectrum Disorders
Autistic children
Behavior Patterns
Belgium
Birth Order
Children
Children & youth
Coping
Down Syndrome
Early Adolescents
Emotional Adjustment
Families & family life
Family Environment
Family Size
Focus Groups
Foreign Countries
Grounded Theory
Interviews
Nonverbal Communication
Parents
Pervasive Developmental Disorders
Prosocial Behavior
Psychological Patterns
Qualitative Research
Quality of Life
Research Design
Researchers
Sibling Relationship
Siblings
Social aspects
Socioeconomic factors
Socioeconomic Status
Studies
Trust (Psychology)
Well Being
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Summary:This study investigated how siblings of children with autism spectrum disorder (ASD) describe and define their quality of life. Using a qualitative research design, the authors collected data through a 4-stage process which included in-depth interviews of 17 children ages 6 to 14 and focus groups. All of the children with ASD were male and between the ages of 5 and 16 with mild to moderate impairments; all of the participating families lived in a Dutch-speaking region of Belgium. Analyzing data according to the principles of grounded theory resulted in the identification of 9 domains of sibling quality of life (SibQol). The apparent invisibility of ASD emerged as an important theme. Results indicate that siblings of children with ASD can define their quality of life, that unique characteristics of ASD give the siblings' experience a highly personal interpretation, and that the SibQol concept can be used to support siblings of children with ASD.
ISSN:0014-4029
2163-5560
DOI:10.1177/001440291107800103