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Conceptualisation and Development of a Quality of Life Measure for Parents of Children with Autism Spectrum Disorder

Parents of children with autism spectrum disorder (ASD) tend to experience greater psychological distress than parents of typically developing children or children with other disabilities. Quality of Life (QoL) is increasingly recognised as a critical outcome measure for planning and treatment purpo...

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Autores principales: Eapen, Valsamma, Črnčec, Rudi, Walter, Amelia, Tay, Kwok Ping
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Hindawi Publishing Corporation 2014
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3977417/
https://www.ncbi.nlm.nih.gov/pubmed/24778873
http://dx.doi.org/10.1155/2014/160783
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author Eapen, Valsamma
Črnčec, Rudi
Walter, Amelia
Tay, Kwok Ping
author_facet Eapen, Valsamma
Črnčec, Rudi
Walter, Amelia
Tay, Kwok Ping
author_sort Eapen, Valsamma
collection PubMed
description Parents of children with autism spectrum disorder (ASD) tend to experience greater psychological distress than parents of typically developing children or children with other disabilities. Quality of Life (QoL) is increasingly recognised as a critical outcome measure for planning and treatment purposes in ASD. There is a need for ASD-specific QoL measures as generic measures may not capture all relevant aspects of living with ASD. This paper describes the conceptualisation and development of an autism-specific measure of QoL, the Quality of Life in Autism Questionnaire (QoLA) for parents and caregivers of children with ASD, that is suitable to clinical and research settings. Preliminary psychometric properties (reliability and validity) of the measure are also presented. The QoLA has 48 items in two subscales: one comprising QoL items and the second a parent report of how problematic their child's ASD symptoms are. A study involving 39 families suggested the QoLA has excellent internal consistency as well as good known-groups validity between parents of children with ASD and those who were typically developing. The QoLA also showed good convergent validity with other measures of QoL and ASD symptom severity, respectively. The QoLA may be a valuable assessment tool and merits further psychometric evaluation.
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spelling pubmed-39774172014-04-28 Conceptualisation and Development of a Quality of Life Measure for Parents of Children with Autism Spectrum Disorder Eapen, Valsamma Črnčec, Rudi Walter, Amelia Tay, Kwok Ping Autism Res Treat Research Article Parents of children with autism spectrum disorder (ASD) tend to experience greater psychological distress than parents of typically developing children or children with other disabilities. Quality of Life (QoL) is increasingly recognised as a critical outcome measure for planning and treatment purposes in ASD. There is a need for ASD-specific QoL measures as generic measures may not capture all relevant aspects of living with ASD. This paper describes the conceptualisation and development of an autism-specific measure of QoL, the Quality of Life in Autism Questionnaire (QoLA) for parents and caregivers of children with ASD, that is suitable to clinical and research settings. Preliminary psychometric properties (reliability and validity) of the measure are also presented. The QoLA has 48 items in two subscales: one comprising QoL items and the second a parent report of how problematic their child's ASD symptoms are. A study involving 39 families suggested the QoLA has excellent internal consistency as well as good known-groups validity between parents of children with ASD and those who were typically developing. The QoLA also showed good convergent validity with other measures of QoL and ASD symptom severity, respectively. The QoLA may be a valuable assessment tool and merits further psychometric evaluation. Hindawi Publishing Corporation 2014 2014-03-20 /pmc/articles/PMC3977417/ /pubmed/24778873 http://dx.doi.org/10.1155/2014/160783 Text en Copyright © 2014 Valsamma Eapen et al. https://creativecommons.org/licenses/by/3.0/ This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Research Article
Eapen, Valsamma
Črnčec, Rudi
Walter, Amelia
Tay, Kwok Ping
Conceptualisation and Development of a Quality of Life Measure for Parents of Children with Autism Spectrum Disorder
title Conceptualisation and Development of a Quality of Life Measure for Parents of Children with Autism Spectrum Disorder
title_full Conceptualisation and Development of a Quality of Life Measure for Parents of Children with Autism Spectrum Disorder
title_fullStr Conceptualisation and Development of a Quality of Life Measure for Parents of Children with Autism Spectrum Disorder
title_full_unstemmed Conceptualisation and Development of a Quality of Life Measure for Parents of Children with Autism Spectrum Disorder
title_short Conceptualisation and Development of a Quality of Life Measure for Parents of Children with Autism Spectrum Disorder
title_sort conceptualisation and development of a quality of life measure for parents of children with autism spectrum disorder
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3977417/
https://www.ncbi.nlm.nih.gov/pubmed/24778873
http://dx.doi.org/10.1155/2014/160783
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