Parent-observed thematic data on quality of life in children with autism spectrum disorder

Domains of quality of life in children with autism spectrum disorder have not previously been explored and there has been no quality of life measure developed for this population. Our study investigated parent observations to identify the domains important to children with autism spectrum disorder w...

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Bibliographic Details
Published in:Autism : the international journal of research and practice 2019-01, Vol.23 (1), p.71-80
Main Authors: Epstein, Amy, Whitehouse, Andrew, Williams, Katrina, Murphy, Nada, Leonard, Helen, Davis, Elise, Reddihough, Dinah, Downs, Jenny
Format: Article
Language:English
Subjects:
Activities of daily living
Adolescent
Adult
Autism
Autism Spectrum Disorder - psychology
Autistic children
Behavior
Child
Child & adolescent psychiatry
Children
Comorbidity
Daily Living Skills
Educational Attainment
Female
Foreign Countries
Grounded theory
Health
Humans
Interviews as Topic
Learning disabilities
Leisure Time
Male
Natural Resources
Parent Attitudes
Parent Background
Parents
Parents & parenting
Pervasive Developmental Disorders
Physical Health
Quality of Life
Quality of Life - psychology
Social Life
Well Being
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Summary:Domains of quality of life in children with autism spectrum disorder have not previously been explored and there has been no quality of life measure developed for this population. Our study investigated parent observations to identify the domains important to children with autism spectrum disorder who also had an intellectual disability. In all, 21 parents (19 mothers, 2 fathers) of children with autism spectrum disorder (aged 6–17 years) participated in a qualitative study to discuss their child’s quality of life. Thematic analysis using a grounded theory framework was conducted and 10 domains emerged in relation to health and well-being, capacity to perform and develop skills in daily life, and connections with the community and environment. Unique aspects of quality of life included varying levels of social desire, consistency of routines, and time spent in nature and the outdoors, which are not comprehensively captured in existing measures. Parent observations provide an initial framework for understanding quality of life in autism spectrum disorder and support the development of a new measure for this population.
ISSN:1362-3613
1461-7005
DOI:10.1177/1362361317722764