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Parents' perceptions: Participation patterns and desires for change for children and adolescents with autism spectrum disorder—A descriptive population‐based study from Switzerland

Background Low participation in youth with autism spectrum disorder (ASD) has been reported, but age‐related and contextual information is rare. Objective This study aimed to describe, from parental perspectives, two patterns of participation and parental desires for change of children (age: 5–11) a...

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Published in:Child : care, health & development health & development, 2024-01, Vol.50 (1), p.e13155-n/a
Main Authors: Krieger, Beate, Piškur, Barbara, Beurskens, Anna J. H. M., Moser, Albine
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creator Krieger, Beate
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Moser, Albine
description Background Low participation in youth with autism spectrum disorder (ASD) has been reported, but age‐related and contextual information is rare. Objective This study aimed to describe, from parental perspectives, two patterns of participation and parental desires for change of children (age: 5–11) and adolescents (age: 12–17) with ASD in Switzerland. Method A cross‐sectional design used the German version of the Participation and Environment Measure‐Child and Youth to describe and juxtapose the participation results of 60 children and 55 adolescents with ASD in 45 activities at home, school and in the community and parental desires for change. Results Participation patterns differed between settings and age groups. Both groups were found to participate most at home, followed by school, whereas community participation was either low or nonexistent. Children were more involved at home than adolescents, while school involvement was higher than participation frequency in both age groups. Community participation frequency was generally low but higher in children than in adolescents, while involvement was similarly low in both groups. Half the parents expressed desire for change with three tendencies: (1) widespread desire for change at home due to high support needs, (2) parents of adolescents expressed more desire for change in all settings than those of children and (3) all parents mainly desired to increase participation frequency and involvement. Conclusions This study informs research and social, health and community service providers to further reshape their programmes to meet parental needs and increase the participation of youth with ASD.
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H. M. ; Moser, Albine</creator><creatorcontrib>Krieger, Beate ; Piškur, Barbara ; Beurskens, Anna J. H. M. ; Moser, Albine</creatorcontrib><description>Background Low participation in youth with autism spectrum disorder (ASD) has been reported, but age‐related and contextual information is rare. Objective This study aimed to describe, from parental perspectives, two patterns of participation and parental desires for change of children (age: 5–11) and adolescents (age: 12–17) with ASD in Switzerland. Method A cross‐sectional design used the German version of the Participation and Environment Measure‐Child and Youth to describe and juxtapose the participation results of 60 children and 55 adolescents with ASD in 45 activities at home, school and in the community and parental desires for change. Results Participation patterns differed between settings and age groups. Both groups were found to participate most at home, followed by school, whereas community participation was either low or nonexistent. Children were more involved at home than adolescents, while school involvement was higher than participation frequency in both age groups. Community participation frequency was generally low but higher in children than in adolescents, while involvement was similarly low in both groups. Half the parents expressed desire for change with three tendencies: (1) widespread desire for change at home due to high support needs, (2) parents of adolescents expressed more desire for change in all settings than those of children and (3) all parents mainly desired to increase participation frequency and involvement. 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Method A cross‐sectional design used the German version of the Participation and Environment Measure‐Child and Youth to describe and juxtapose the participation results of 60 children and 55 adolescents with ASD in 45 activities at home, school and in the community and parental desires for change. Results Participation patterns differed between settings and age groups. Both groups were found to participate most at home, followed by school, whereas community participation was either low or nonexistent. Children were more involved at home than adolescents, while school involvement was higher than participation frequency in both age groups. Community participation frequency was generally low but higher in children than in adolescents, while involvement was similarly low in both groups. 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source Applied Social Sciences Index & Abstracts (ASSIA); Wiley-Blackwell Read & Publish Collection
subjects Adolescent
Adolescents
Age groups
Autism
Autism Spectrum Disorder
Autism Spectrum Disorders
Autistic adolescents
Autistic children
Changes
Child
Child, Preschool
Children & youth
Citizen participation
Community involvement
Community Relations
Community service
Contextual information
Cross-Sectional Studies
Desire
German language
Humans
involvement
Parents
Parents & parenting
participation
PEM‐CY
School Involvement
Social Environment
Social Participation
Switzerland
Teenagers
Youth
title Parents' perceptions: Participation patterns and desires for change for children and adolescents with autism spectrum disorder—A descriptive population‐based study from Switzerland
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