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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Polypharmacie psychotrope chez les enfants et les jeunes autistes: une revue systématique

Aperçu: G.M.

Objectifs:
La majorité des jeunes autistes prennent simultanément au moins deux médicaments (psychotropes ou non psychotropes), également connus sous le nom de polypharmacie (Wink et al.). Pourtant, l'efficacité et les résultats potentiels de la polypharmacie dans cette population sont largement inconnus. Cette revue systématique de la littérature décrit les tendances de la polypharmacie chez les jeunes autistes et identifie les facteurs associés à la polypharmacie. 

Méthodes:
Seize études ont été incluses, englobant plus de 300 000 jeunes autistes. 

Résultats:
Les taux de polypharmacie variaient considérablement d'une étude à l'autre, allant de 6,8% à 87% des jeunes autistes. Avoir des comorbidités psychiatriques, des comportements d'automutilation et une agression physique, ainsi que le fait d'être de sexe masculin et plus âgé, étaient associés à des taux plus élevés de polypharmacie. 

Conclusion:
Les résultats soulignent l'importance de recherches supplémentaires pour déterminer les pratiques appropriées liées à la surveillance des effets secondaires indésirables et l'impact à long terme de la polypharmacie chez les jeunes autistes.

• 2021 May 7. doi: 10.1089/cap.2020.0110. 

Psychotropic Polypharmacy Among Children and Youth with Autism: A Systematic Review

Chantel Ritter  ¹ , Katherine Hewitt  ^{2   3} , Carly A McMorris  ^{2   3}

Affiliations

• PMID: 33970024
• DOI: 10.1089/cap.2020.0110

Abstract

Objectives: Majority of youth with autism are taking two or more medications (psychotropic or nonpsychotropic) simultaneously, also known as polypharmacy (Wink et al.). Yet the efficacy and the potential outcomes of polypharmacy in this population are widely unknown. This systematic literature review described the trends of polypharmacy among autistic youth, and identified factors associated with polypharmacy. Methods: Sixteen studies were included, encompassing over 300,000 youth with autism. Results: Rates of polypharmacy varied quite substantially across studies, ranging from 6.8% to 87% of autistic youth. Having psychiatric comorbidities, self-injurious behaviors, and physical aggression, as well as being male and older, were associated with higher rates of polypharmacy. Conclusion: Findings emphasize the importance of further research to determine appropriate practices related to the monitoring of adverse side effects, and the long-term impact of polypharmacy among autistic youth.

Keywords: autism; children; mental health; multiple medications; polypharmacy; psychotropic medications; youth.

Modèles et résultats de la divulgation du diagnostic aux jeunes ayant un diagnostic de "trouble du spectre de l'autisme"

Aperçu: G.M.

Objectif:

Bien que les avantages de la divulgation du diagnostic aient été reconnus pour un certain nombre de conditions médicales pédiatriques, il y a peu de recherches sur le processus par lequel les jeunes avec un diagnostic de "troubles du spectre de l'autisme" (dTSA) sont informés de leur diagnostic. Le but de cette étude était de caractériser systématiquement les antécédents, les corrélats et les résultats de la divulgation du diagnostic aux jeunes avec un dTSA.

Méthodes:

Dans cette étude transversale, les parents et tuteurs de jeunes avec un dTSA (âgés de 8 à 25 ans) ont rempli un questionnaire en ligne détaillé sur leurs expériences en matière de divulgation du diagnostic. L'impact perçu de la divulgation sur les jeunes touchés a également été évalué.

Résultats:

Cinq cent soixante-quinze parents de jeunes avec un dTSA (âge moyen: 14 ans) ont rempli le questionnaire, parmi lesquels 81% ont déclaré que leur enfant avait été informé qu'il ou elle avait un TSA. La plupart des jeunes qui avaient été informés de leur diagnostic (86%) savaient actuellement qu'ils avaient un TSA, selon le rapport des parents. On a signalé que la sensibilisation des jeunes au diagnostic était associée à de meilleures compétences d'auto-représentation (60%), à une meilleure connaissance de soi des forces et des faiblesses personnelles (69%) et à d'autres avantages. Les jeunes qui avaient cherché des informations sur les TSA auprès de groupes de soutien et d'autres personnes avec un dTSA avaient de meilleurs résultats en ce qui concerne l'estime de soi [rapport de cotes ajusté = 2,73, intervalle de confiance à 95%: (1,34, 3,98)] et l'acceptation du diagnostic (p = 0,001) que ceux qui ont appris exclusivement sur les TSA à partir d'autres sources.

Conclusion:

Étant donné les nombreux avantages potentiels de la divulgation du diagnostic, il est nécessaire que les médecins et autres professionnels aident les parents à informer les jeunes avec un dTSA au sujet de leur diagnostic.

. 2020 Aug;41(6):443-451.

doi: 10.1097/DBP.0000000000000802.

Patterns and Outcomes of Diagnosis Disclosure to Youth with Autism Spectrum Disorder

Bridget Kiely  ¹ , Andrew Adesman, Eli Rapoport, Alyson Gutman

Affiliations

• PMID: 32735421
• DOI: 10.1097/DBP.0000000000000802

Abstract

Objective: Although the benefits of diagnosis disclosure have been recognized for a number of pediatric medical conditions, there is a paucity of research about the process by which youth with autism spectrum disorder (ASD) are informed about their diagnosis. The aim of this study was to systematically characterize the antecedents, correlates, and outcomes of diagnosis disclosure to youth with ASD.

Methods: In this cross-sectional study, parents and guardians of youth with ASD (ages 8-25) completed a detailed online questionnaire about their experiences with diagnosis disclosure. The perceived impact of disclosure on affected youth was also assessed.

Results: Five hundred seventy-five parents of youth with ASD (mean age: 14 years) completed the questionnaire, of whom 81% reported their affected child had been told that he or she had ASD. Most youth who had been told about their diagnosis (86%) were currently aware that they had ASD, according to the parent report. Youth awareness of the diagnosis was reported to be associated with improved self-advocacy skills (60%), enhanced self-awareness of personal strengths (69%) and weaknesses (68%), and other benefits. Youth who had sought information about ASD from support groups and other individuals with ASD had better outcomes regarding self-esteem [adjusted odds ratio = 2.73, 95% confidence interval: (1.34, 3.98)] and acceptance of the diagnosis (p = 0.001) than those who exclusively learned about ASD from other sources.

Conclusion: Given the numerous potential benefits of diagnosis disclosure, there is a need for physicians and other professionals to support parents in educating youth with ASD about their diagnosis.