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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Perceptions de la participation à l'activité physique chez les adolescents avec un diagnostic de "trouble du spectre de l'autisme": un modèle conceptuel de la participation conditionnelle

Aperçu: G.M.

Les adolescents avec un diagnostic de "trouble du spectre de l'autisme (dTSA) sont moins actifs physiquement que les pairs qui se développent typiquement. Les raisons de ne pas être physiquement actifs sont complexes et dépendent de plusieurs facteurs qui n'ont pas été complètement décrits du point de vue de l'adolescent. Par conséquent, l'objectif de cette recherche était de décrire comment les adolescents ayant un dTSA perçoivent, vivent et réfléchissent à leur participation à l'activité physique. Les entretiens avec 24 adolescents diagnostiqués avec un TSA de haut niveau, âgés de 12-16 ans, ont été analysés avec une analyse de contenu qualitative avec une approche inductive.  

Ils ont exprimé diverses raisons pour déterminer leur volonté de participer, qui ont été conceptualisées comme suit: Participation conditionnelle à des activités physiques. La présente étude présente une perspective alternative sur la participation à l'activité physique, avec un impact sur la conception de l'intervention.

J Autism Dev Disord. 2017 Dec 13. doi: 10.1007/s10803-017-3436-2.

Perceptions of Physical Activity Participation Among Adolescents with Autism Spectrum Disorders: A Conceptual Model of Conditional Participation

Arnell S^1,2, Jerlinder K^3,4, Lundqvist LO^5,3.

Author information

1

Faculty of Medicine and Health, University Health Care Research Center, Örebro University, P. O. Box 1613, 701 16, Örebro, Sweden. susann.arnell@regionorebrolan.se.

2

School of Health Sciences, The Swedish Institute for Disability Research (SIDR), Örebro University, Örebro, Sweden. susann.arnell@regionorebrolan.se.

3

School of Health Sciences, The Swedish Institute for Disability Research (SIDR), Örebro University, Örebro, Sweden.

4

Faculty of Health and Occupational Studies, University of Gävle, Gävle, Sweden.

5

Faculty of Medicine and Health, University Health Care Research Center, Örebro University, P. O. Box 1613, 701 16, Örebro, Sweden.

Abstract

Adolescents with an autism spectrum disorder (ASD) are less physically active compared to typically developing peers. The reasons for not being physically active are complex and depend on several factors, which have not been comprehensively described from the adolescent's perspective. Therefore, the aim was to describe how adolescents with an ASD perceive, experience and reflect on their participation in physical activity. Interviews with 24 adolescents diagnosed with high-functioning ASD, aged 12-16 years, were analysed with qualitative content analysis with an inductive approach. They expressed a variety of reasons determining their willingness to participate, which were conceptualized as: Conditional participation in physical activities. The present study presents an alternative perspective on participation in physical activity, with impact on intervention design.

 

PMID:29236210

DOI:10.1007/s10803-017-3436-2

Participation des enfants "dans le spectre de l'autisme" à la maison, à l'école et dans la communauté

Aperçu: G.M.

Cette étude visait à documenter les modèles de participation et les opinions des soignants en ce qui concerne la fréquence et l'intensité des activités auxquelles participent les enfants avec un diagnostic de "trouble du spectre de l'autisme".

Les aidants naturels des enfants âgés de 5 ans (n ​​= 90) et de 9 à 10 ans (n ​​= 128) ont complété le questionnaire sur la mesure de la participation et de l'environnement pour les enfants et les jeunes pour la maison, l'école et la communauté.  

Les analyses ont révélé des modèles de participation similaires à la maison, à l'école et dans la communauté pour les deux cohortes avec des différences précoces en fonction de l'âge. Les soignants ont généralement souhaité une diversité accrue, une fréquence et une participation aux activités, mais une diminution de l'utilisation de l'électronique (ordinateurs, jeux, télé et DVD). 

Child Care Health Dev. 2017 Jun 29. doi: 10.1111/cch.12483.

Participation of children on the autism spectrum in home, school, and community

Simpson K^1,2, Keen D^1,2, Adams D^1,2, Alston-Knox C³, Roberts J^1,2.

Author information

1

Autism Centre of Excellence, School of Education and Professional Studies, Griffith University, Brisbane Qld, Australia.

2

Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, QLD, Australia.

3

Griffith Social and Behavioural Research College, Griffith University, Brisbane, QLD, Australia.

Abstract

BACKGROUND:

Children on the autism spectrum participate less frequently, and in a narrower range of activities, than their nonautistic peers, but little is known about exact participation patterns across contexts or how this is perceived by caregivers. This study aimed to document patterns of participation and caregiver views with regard to frequency and intensity of activities.

METHOD:

Caregivers of children on the spectrum aged 5 (n = 90) and 9-10 years (n = 128) completed the Participation and Environment Measure for Children and Youth for home, school, and community. Caregivers reported on frequency of child's participation, level of involvement, and caregivers' desire for change in participation patterns.

RESULTS:

Item-level analyses revealed similar patterns of participation across home, school, and community for both cohorts with some small age-appropriate differences. Caregivers generally desired increased diversity, frequency, and involvement in activities but a decreased use of electronics (computers, games, TV, and DVDs).

CONCLUSION:

The possibility of autism-specific participation patterns could inform future interventions aimed at enhancing social inclusion. This warrants further investigation through multiinformant designs that seek the perspectives of the child and caregivers.

© 2017 John Wiley & Sons Ltd.

PMID:28664633

DOI:10.1111/cch.12483

Perspectives parentales sur la participation à domicile des enfants ayant un diagnostic de trouble du spectre de l'autisme avec un haut niveau de fonctionnement cognitif par rapport à un groupe d'enfants sans TSA

Aperçu: G.M.

Peu d'études ont porté sur la participation à la maison des enfants qui ont un trouble du spectre autistique. L'étude porte a utilisé une conception de méthodes mixtes pour explorer et comparer les perspectives des parents sur (1) la participation des enfants avec et sans trouble du spectre autistique dans les activités à domicile, (2) les caractéristiques et les ressources environnementales qui affectent la participation de ces enfants et (3) la Stratégies que les parents utilisent pour aider leurs enfants à participer à la maison. 

La mesure de la participation et de l'environnement pour les enfants et les jeunes (PEM-CY) a été utilisée pour rassembler des enquêtes en ligne et des données qualitatives auprès des parents de 99 enfants ayant un trouble du spectre de l'autisme et 241 enfants sans trouble du spectre de l'autisme.

Des différences ont été obtenues pour toutes les dimensions de la Participation et de l'Environnement pour les enfants et les jeunes, mais surtout en comparant la satisfaction des parents et les obstacles environnementaux perçus à la participation de leurs enfants. Les analyses qualitatives ont révélé que les parents des deux groupes utilisaient des stratégies similaires pour faciliter la participation de leurs enfants à la maison, bien que les parents d'enfants avec des troubles du spectre autistique utilisent des modifications plus distinctes. Ces résultats soulignent l'importance des aspects environnementaux et indiquent comment les praticiens peuvent soutenir les familles dans leurs efforts pour promouvoir la participation de leur enfant à la maison. 

Autism. 2017 Apr 1:1362361316685555. doi: 10.1177/1362361316685555.

Parent perspectives on home participation of high-functioning children with autism spectrum disorder compared with a matched group of children without autism spectrum disorder

Egilson ST¹, Jakobsdóttir G², Ólafsdóttir LB¹.

Author information

1

1 University of Iceland, Iceland.

2

2 National University Hospital of Iceland, Iceland.

Abstract

Few studies have focused on home participation of high-functioning children with autism spectrum disorder. We employed a mixed-methods design to explore and compare parent perspectives on (1) participation of children with and without autism spectrum disorder in activities at home, (2) the environmental features and resources that affect these children's home participation and (3) the strategies parents use to help their children participate at home. The Participation and Environment Measure for Children and Youth (PEM-CY) was used to gather online survey and qualitative data from parents of 99 high-functioning children with autism spectrum disorder and 241 children without autism spectrum disorder. Independent sample t-tests and χ² tests were used to explore differences between groups, and Cohen's d was calculated to examine effect sizes. Differences were obtained on all Participation and Environment Measure for Children and Youth dimensions but particularly when comparing parents' satisfaction and perceived environmental barriers to their children's participation. The qualitative analyses revealed that parents in both groups used similar strategies to facilitate their children's participation at home, although parents of children with autism spectrum disorder made use of more distinct modifications. Our results highlight the importance of environmental aspects and point to how practitioners can support families in their efforts to promote their child's participation at home.

PMID: 28429605

DOI: 10.1177/1362361316685555

L'effet des interventions visant à améliorer les résultats de la participation pour les enfants handicapés: une revue systématique

Traduction: G.M.

 

Dev Med Child Neurol. 2015 May 24. doi: 10.1111/dmcn.12809. [Epub ahead of print]

The effect of interventions aimed at improving participation outcomes for children with disabilities: a systematic review

Adair B¹, Ullenhag A², Keen D³, Granlund M⁴, Imms C¹.

Author information

• ¹School of Allied Health, Australian Catholic University, Fitzroy, Vic., Australia.
• ²Department of Women's and Children's Health, Karolinska Institute, Stockholm, Sweden.
• ³Autism Centre of Excellence, Griffith University, Mt Gravatt, Qld, Australia.
• ⁴CHILD, School of Health Sciences, Jönköping University, Jönköping, Sweden.

Abstract

AIM:

Enhancement of participation has been described as the ultimate outcome for health and educational interventions. The goal of this systematic review was to identify and critically appraise studies that aimed to improve the participation outcomes of children with disabilities.

L'amélioration de la participation a été décrite comme l'aboutissement ultime pour la santé et les interventions éducatives. L'objectif de cette revue systématique était d'identifier et évaluer de façon critique les études qui visaient à améliorer les résultats de la participation des enfants handicapés.

METHOD:

Nine databases that index literature from the fields of health, psychology, and education were searched to retrieve information on research conducted with children with disabilities aged between 5 years and 18 years. Articles were included if the author(s) reported that participation was an intended outcome of the intervention. The articles included were limited to those reporting high-level primary research, as defined by Australia's National Health and Medical Research Council evidence hierarchy guidelines. No restrictions were placed on the type of intervention being investigated.

RESULTS:

Seven randomized controlled or pseudo-randomized studies were included. Only three of these studies identified participation as a primary outcome. Both individualized and group-based approaches to enhancing participation outcomes appeared to be effective. Studies of interventions with a primary focus on body function or activity level outcomes did not demonstrate an effect on participation outcomes.

Sept études contrôlées randomisées ou pseudo-randomisées ont été incluses. Seulement trois de ces études ont identifié la participation comme résultat principal. Les approches individualisées et par groupe pour l'amélioration des résultats de la participation semblent toutes les deux efficaces. Les études d'interventions avec un accent mis sur la fonction du corps ou les résultats au niveau de l'activité n'ont pas démontré d'effet sur les résultats de la participation.

INTEPRETATION:

Few intervention studies have focused on participation as a primary outcome measure. Approaches using individually tailored education and mentoring programmes were found to enhance participation outcomes, while exercise programmes, where participation was a secondary outcome, generally demonstrated little effect.

Peu d'études sur les interventions ont mis l'accent sur la participation en tant que principale mesure de résultat. Les approches utilisant l'enseignement adapté individuellement et des programmes de mentorat ont montré qu'elles amélioraient les résultats de la participation, tandis que les programmes d'exercice, où la participation était un critère secondaire, ont généralement démontré peu d'effet.

© 2015 Mac Keith Press.

PMID: 26010935