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...

Full description

Bibliographic Details
Main Authors: Epstein, A., Whitehouse, A., Williams, K., Murphy, N., Leonard, H., Davis, E., Reddihough, D., Downs, Jennepher
Format: Journal Article
Published: 2017
Online Access:http://hdl.handle.net/20.500.11937/58358
_version_ 1848760239804907520
author Epstein, A.
Whitehouse, A.
Williams, K.
Murphy, N.
Leonard, H.
Davis, E.
Reddihough, D.
Downs, Jennepher
author_facet Epstein, A.
Whitehouse, A.
Williams, K.
Murphy, N.
Leonard, H.
Davis, E.
Reddihough, D.
Downs, Jennepher
author_sort Epstein, A.
building Curtin Institutional Repository
collection Online Access
description 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.
first_indexed 2025-11-14T10:12:37Z
format Journal Article
id curtin-20.500.11937-58358
institution Curtin University Malaysia
institution_category Local University
last_indexed 2025-11-14T10:12:37Z
publishDate 2017
recordtype eprints
repository_type Digital Repository
spelling curtin-20.500.11937-583582019-02-04T03:11:19Z Parent-observed thematic data on quality of life in children with autism spectrum disorder Epstein, A. Whitehouse, A. Williams, K. Murphy, N. Leonard, H. Davis, E. Reddihough, D. Downs, Jennepher 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. 2017 Journal Article http://hdl.handle.net/20.500.11937/58358 10.1177/1362361317722764 fulltext
spellingShingle Epstein, A.
Whitehouse, A.
Williams, K.
Murphy, N.
Leonard, H.
Davis, E.
Reddihough, D.
Downs, Jennepher
Parent-observed thematic data on quality of life in children with autism spectrum disorder
title Parent-observed thematic data on quality of life in children with autism spectrum disorder
title_full Parent-observed thematic data on quality of life in children with autism spectrum disorder
title_fullStr Parent-observed thematic data on quality of life in children with autism spectrum disorder
title_full_unstemmed Parent-observed thematic data on quality of life in children with autism spectrum disorder
title_short Parent-observed thematic data on quality of life in children with autism spectrum disorder
title_sort parent-observed thematic data on quality of life in children with autism spectrum disorder
url http://hdl.handle.net/20.500.11937/58358