Perceptions des parents : Modèles de participation et souhaits de changement pour les enfants et les adolescents avec un diagnostic de "troubles" du spectre de l'autisme - Une étude descriptive basée sur la population suisse

Aperçu: G.M.

Contexte : On a signalé une faible participation chez les jeunes avedc un diagnostic de "troubles du spectre de l'autisme (dTSA), mais il est rare que l'on dispose d'informations liées à l'âge et au contexte.

Objectif : Cette étude visait à décrire, du point de vue des parents, deux modèles de participation et les souhaits de changement des parents d'enfants (âgés de 5 à 11 ans) et d'adolescents (âgés de 12 à 17 ans) avec un dTSA en Suisse.

Méthode : Une étude transversale a utilisé la version allemande de la Mesure de la participation et de l'environnement pour les enfants et adolescents pour décrire et juxtaposer les résultats de la participation de 60 enfants et 55 adolescents avec un dTSA à 45 activités à la maison, à l'école et dans la communauté, ainsi que les souhaits des parents en matière de changement.

Résultats : Les modèles de participation diffèrent selon les milieux et les groupes d'âge. On a constaté que les deux groupes participaient le plus à la maison, puis à l'école, tandis que la participation communautaire était faible ou inexistante.
Les enfants participaient davantage à la maison que les adolescents, tandis que la participation à l'école était plus élevée que la fréquence de participation dans les deux groupes d'âge.
La fréquence de la participation communautaire était généralement faible, mais plus élevée chez les enfants que chez les adolescents, tandis que l'implication était également faible dans les deux groupes. 

 

La moitié des parents ont exprimé un désir de changement avec trois tendances : 

1. un désir généralisé de changement à la maison en raison des besoins élevés de soutien,
2. les parents d'adolescents ont exprimé plus de désir de changement dans tous les contextes que ceux des enfants et 
3. tous les parents souhaitaient principalement augmenter la fréquence de la participation et l'implication.

Conclusions : Cette étude informe la recherche et les prestataires de services sociaux, sanitaires et communautaires afin qu'ils remodèlent leurs programmes pour répondre aux besoins des parents et accroître la participation des jeunes avec un dTSA.

Mots-clés : PEM-CY ; autisme ; implication ; parents ; participation ; jeunes.

 

 . 2023 Jul 24. doi: 10.1111/cch.13155.  

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

Beate Krieger  ^{1   2} , Barbara Piškur  ^{3   4} , Anna J H M Beurskens  ² , Albine Moser  ^{2   3}

Affiliations

• PMID: 37487595
• DOI: 10.1111/cch.13155

Abstract

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.

Keywords: PEM-CY; autism; involvement; parents; participation; youth.

© 2023 The Authors. Child: Care, Health and Development published by John Wiley & Sons Ltd.

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Maternité : Perspectives et expériences féminines d'être parent avec un diagnostic de TSA

Aperçu: G.M.

On sait peu de choses sur les pressions émotionnelles et la gestion pratique des défis quotidiens et des exigences intra et interpersonnelles d'élever un enfant en tant que parent avec un diagnostic de "trouble du spectre de l'autisme". 

La présente étude a utilisé une approche qualitative pour comprendre les perceptions des femmes diagnostiquées autistes d' « être un parent ». 

Huit entretiens semi-structurés ont été analysés à l'aide de l'analyse phénoménologique interprétative.

Les avantages et les défis d'être parent ont été mis en évidence aux côtés des compétences et des caractéristiques spécifiques à la population associées à la force et à la résilience, à l'amour, à l'éducation, à la routine et aux considérations sensorielles. 

Les résultats identifient le besoin d'un soutien parental spécialisé spécifique à la population, fournissent une orientation aux professionnels en milieu clinique et élargissent la rareté de la recherche dans ce domaine.

. 2021 Jun 9.   doi: 10.1007/s10803-021-05122-5. 

Motherhood: Female Perspectives and Experiences of Being a Parent with ASC

Rebecca Winnard  ^{1   2} , Mark Roy  ^{1   2} , Hannah Butler-Coyne  ^{3   4}

Affiliations

• PMID: 34106393
• DOI: 10.1007/s10803-021-05122-5

Abstract

Little is known about the emotional pressures and practical management of daily challenges and, intra and interpersonal demands of raising a child as a parent with a diagnosis of Autistic Spectrum Conditions. The present study utilised a qualitative approach to understand perceptions of females diagnosed on the autistic spectrum of 'being a parent'. Eight semi-structured interviews were analysed using Interpretative Phenomenological Analysis. Benefits and challenges of being a parent were highlighted alongside population-specific skill and characteristics associated with strength and resilience, love, nurture, routine and sensory considerations. Findings identify the need for population-specific specialist parenting support, provide direction for professionals in clinical settings and expand the paucity of research in this area.

Keywords: Autistic spectrum conditions; Interpretative phenomenological analysis; Parenting.

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