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

Research output: Contribution to journalArticle

6 Citations (Scopus)
206 Downloads (Pure)

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, 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.

Original languageEnglish
JournalAutism
DOIs
Publication statusE-pub ahead of print - 26 Oct 2017

Fingerprint

Quality of Life
Fathers
Intellectual Disability
Population
Parents
Mothers
Data Accuracy
Autism Spectrum Disorder
Health

Cite this

@article{ad5518644af64e9b88247aedcbd17de5,
title = "Parent-observed thematic data on quality of life in children with autism spectrum disorder",
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, 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.",
keywords = "autism spectrum disorders, intellectual disability, neurodevelopmental disability, qualitative research, quality of life, well-being",
author = "Amy Epstein and Andrew Whitehouse and Katrina Williams and Nada Murphy and Helen Leonard and Elise Davis and Dinah Reddihough and Jenny Downs",
year = "2017",
month = "10",
day = "26",
doi = "10.1177/1362361317722764",
language = "English",
journal = "Autism: the international journal of research and practice",
issn = "1362-3613",
publisher = "SAGE Publications Ltd",

}

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.

In: Autism, 26.10.2017.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Parent-observed thematic data on quality of life in children with autism spectrum disorder

AU - Epstein, Amy

AU - Whitehouse, Andrew

AU - Williams, Katrina

AU - Murphy, Nada

AU - Leonard, Helen

AU - Davis, Elise

AU - Reddihough, Dinah

AU - Downs, Jenny

PY - 2017/10/26

Y1 - 2017/10/26

N2 - 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.

AB - 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.

KW - autism spectrum disorders

KW - intellectual disability

KW - neurodevelopmental disability

KW - qualitative research

KW - quality of life

KW - well-being

UR - http://www.scopus.com/inward/record.url?scp=85041564284&partnerID=8YFLogxK

U2 - 10.1177/1362361317722764

DO - 10.1177/1362361317722764

M3 - Article

JO - Autism: the international journal of research and practice

JF - Autism: the international journal of research and practice

SN - 1362-3613

ER -