ERIC Number: EJ1200853
Record Type: Journal
Publication Date: 2019-Jan
Pages: 10
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1362-3613
EISSN: N/A
Available Date: N/A
Parent-Observed Thematic Data on Quality of Life in Children with Autism Spectrum Disorder
Epstein, Amy; Whitehouse, Andrew; Williams, Katrina; Murphy, Nada; Leonard, Helen; Davis, Elise; Reddihough, Dinah; Downs, Jenny
Autism: The International Journal of Research and Practice, v23 n1 p71-80 Jan 2019
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.
Descriptors: Autism, Pervasive Developmental Disorders, Quality of Life, Children, Parents, Parent Attitudes, Health, Well Being, Daily Living Skills, Social Life, Leisure Time, Natural Resources, Foreign Countries, Comorbidity, Parent Background, Educational Attainment, Physical Health, Behavior
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Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: Australia
Identifiers - Assessments and Surveys: Autism Diagnostic Observation Schedule
Grant or Contract Numbers: N/A
Author Affiliations: N/A