Journal article

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

Amy Epstein, Andrew Whitehouse, Katrina Williams, Nada Murphy, Helen Leonard, Elise Davis, Dinah Reddihough, Jenny Downs

AUTISM | SAGE PUBLICATIONS LTD | Published : 2019

Abstract

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..

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Grants

Awarded by National Health and Medical Research Council


Funding Acknowledgements

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National Health and Medical Research Council (no. 1103745). E.D. is supported by a Victorian Health Promotion Public Health Fellowship. A.W. and H.L. are supported by a Senior Research Fellowship from the National Health and Medical Research Council (nos 1077966 and 1117105).