Analyse comportementale basée sur smartphone pour les comportements difficiles dans les déficiences intellectuelles et développementales et les troubles du spectre de l'autisme- Protocole d'étude pour l'essai ProVIA

Aperçu: G.M.

Résumé 

Contexte
Les comportements difficiles (CD) comprennent diverses formes de comportements agressifs et problématiques survenant fréquemment chez les enfants ayant une déficience intellectuelle et développementale (DID) ou un trouble du spectre de l'autisme (TSA). Le CD découle souvent d'une altération des capacités de communication ou de résolution de problèmes. Il est souvent rencontré avec une mesure coercitive en raison d'un manque de stratégies alternatives de la part du soignant, alors qu'il a également un impact sur les soignants en raison de l'exposition à des dommages physiques et à des niveaux élevés de stress. Dans le cadre du projet ProVIA, nous avons développé un outil basé sur un smartphone pour les soignants d'enfants avec une DID et/ou de TSA afin de prévenir et de modifier le CD. L'application ProVIA aide systématiquement les soignants à identifier les causes spécifiques de CD et fournit des conseils pratiques individualisés pour prévenir le CD et les mesures coercitives consécutives, visant ainsi à améliorer la santé et le bien-être des enfants et des soignants. 

Méthodes
Dans cet essai ouvert non contrôlé, nous recruterons N = 25 soignants d'enfants âgés de 3 à 11 ans avec un diagnostic de DID et/ou de TSA. Les participants utiliseront l'application ProVIA-Kids pendant 8 semaines. Pendant la phase d'intervention, les participants effectueront des analyses de comportement après chaque cas de CD. L'application résumera les causes putatives identifiées pour le CB dans chaque situation et fournira des recommandations concernant la manipulation et la prévention du CB. De plus, l'application regroupera les données de toutes les analyses de comportement disponibles et identifiera les facteurs de risque les plus pertinents (c'est-à-dire les plus fréquemment signalés). Les points de mesure sont au départ (T0), après l'intervention (T1) et 12 semaines après la fin de l'intervention (suivi ; T2). 

Résultat
Le résultat principal est le changement absolu du stress parental (échelle totale EBI) entre T0 et T1. D'autres aspects d'intérêt sont les changements dans la gravité et la fréquence des CD, l'humeur du soignant, la satisfaction à l'égard du rôle parental (échelle totale EFB-K) et la compétence parentale expérimentée (échelle totale FKE). Les comparaisons pré-post seront analysées avec des tests t d'échantillons appariés. 

Discussion
ProVIA est un pionnier de l'analyse comportementale structurée via smartphone, évaluant les causes prédéfinies de CB et fournissant des commentaires et des recommandations. Si cette approche s'avère fructueuse, l'application ProVIA-Kids sera un outil précieux pour les soignants afin de prévenir le CB et d'améliorer leur propre qualité de vie ainsi que celle des enfants.  

Enregistrement de l'essai : l'étude est enregistrée sur 

https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_IDDRKS00029039 (enregistré le 31 mai 2022). 

Cliquer ICI pour accéder à l'intégralité du protocole en anglais

 

. 2022 Oct 13;16:984618.

doi: 10.3389/fnins.2022.984618. eCollection 2022.

Smartphone-based behaviour analysis for challenging behaviour in intellectual and developmental disabilities and autism spectrum disorder - Study protocol for the ProVIA trial

Julia Geissler  ¹ , Hanna Buchholz  ¹ , Rinat Meerson  ¹ , Klaus Kammerer  ² , Manuel Göster  ² , Johannes Schobel  ³ , Christoph Ratz  ^{4   5} , Regina Taurines  ¹ , Rüdiger Pryss  ² , Marcel Romanos  ^{1   5}

Affiliations

• PMID: 36312036
• PMCID: PMC9610118
• DOI: 10.3389/fnins.2022.984618

Abstract

Background: Challenging behaviour (CB) comprises various forms of aggressive and problematic behaviours frequently occurring in children with intellectual and developmental disability (IDD) or autism spectrum disorder (ASD). CB often arises from impaired communication or problem solving skills. It is often met with coercive measure due to a lack of alternative strategies on the part of the caregiver, while it also impacts on the caregivers due to the exposure to physical harm and high levels of stress. Within the ProVIA project we developed a smartphone-based tool for caregivers of children with IDD and/or ASD to prevent and modify CB. The ProVIA app systematically helps caregivers to identify specific causes of CB and provides individualised practical guidance to prevent CB and consecutive coercive measures, thus aiming to improve the health and well-being of the children and caregivers.

Methods: In this uncontrolled open trial we will enrol N = 25 caregivers of children aged 3-11 years with a diagnosis of IDD and/or ASD. Participants will use the ProVIA-Kids app for 8 weeks. During the intervention phase, participants will conduct behaviour analyses after each instance of CB. The app will summarise the identified putative causes for the CB in each situation, and provide recommendations regarding the handling and prevention of CB. Furthermore, the app will aggregate data from all available behaviour analyses and identify the most relevant (i.e., most frequently reported) risk factors. Measurement points are at baseline (T0), after the intervention (T1) and 12 weeks after the end of the intervention (follow-up; T2). The primary outcome is the absolute change in parental stress (EBI total scale) between T0 and T1. Further aspects of interest are changes in CB severity and frequency, caregiver mood, satisfaction with the parenting role (EFB-K total scale) and experienced parenting competence (FKE total scale). Pre-post comparisons will be analysed with paired sample t-tests.

Discussion: ProVIA is pioneering structured behaviour analysis via smartphone, assessing predefined causes of CB and providing feedback and recommendations. If this approach proves successful, the ProVIA-Kids app will be a valuable tool for caregivers to prevent CB and improve their own as well as the children's quality of life.

Trial registration: The study is registered at https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_IDDRKS00029039 (registered May 31, 2022).

Keywords: autism spectrum disorder; behaviour analysis; challenging behaviour; cognitive behaviour therapy; intellectual disability; mental health application; parent training; parental stress.

Pleine conscience et stress chez les parents d'enfants avec un diagnostic de "troubles du spectre de l'autisme" en Chine

Aperçu: G.M.

Être parent d'un enfant atteint d'un trouble du spectre autistique (TSA) peut être extrêmement difficile. Il est important d'identifier les facteurs associés au stress parental. 

Cette étude a examiné l'effet indirect de la pleine conscience dispositionnelle des parents sur leur anxiété et leurs symptômes dépressifs et la qualité de vie de la famille (FQOL) par le biais de la parentalité consciente, puis du stress parental. 

Soixante-dix-neuf parents chinois (24,1% de pères) d'enfants avec un dTSA âgés de 3 à 13 ans ont rempli des questionnaires d'auto-évaluation. 

Les résultats ont indiqué qu'une plus grande vigilance dispositionnelle était associée à une plus grande vigilance parentale, qui était liée à un stress parental plus faible, et en outre liée à une moindre anxiété et des symptômes dépressifs et à une FQOL plus élevée. 

Les résultats fournissent des informations précieuses sur les voies potentielles par lesquelles la pleine conscience et la parentalité consciente peuvent avoir un impact positif sur le bilan des parents.

. 2021 May 29.  doi: 10.1007/s10803-021-05011-x. 

Mindfulness and Stress Among Parents of Children with Autism Spectrum Disorder in China

Hui Wang  ¹ , Qiandong Wang  ¹ , Xiaoyi Hu  ² , Zhuo Rachel Han  ¹

Affiliations

• PMID: 34050845
• DOI: 10.1007/s10803-021-05011-x

Abstract

Parenting a child with autism spectrum disorder (ASD) can be tremendously challenging. It is important to identify factors associated with parenting stress. This study examined the indirect effect of parental dispositional mindfulness on their anxiety and depressive symptoms and family quality of life (FQOL) through mindful parenting and then parenting stress. Seventy-nine Chinese parents (24.1% fathers) of children with ASD aged 3-13 years completed self-report questionnaires. Results indicated that higher dispositional mindfulness was associated with higher mindful parenting, which was related to lower parenting stress, and further related to lower anxiety and depressive symptoms and higher FQOL. The findings provide valuable insight into the potential pathways through which general mindfulness and mindful parenting may positively impact parental outcomes.

Keywords: Autism spectrum disorder; Dispositional mindfulness; Family quality of life; Mental health; Mindful parenting; Parenting stress.

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Comparaison des points de vue des pères et des mères sur le "trouble du spectre de l'autisme" de leur enfant

Aperçu: G.M.

Les mères sont souvent les principaux parents participants à la recherche sur les "troubles du spectre de l'autisme" (TSA). En conséquence, on sait peu de choses sur les perceptions des pères concernant les TSA de leurs enfants et si ces perceptions diffèrent de celles des mères.
Compte tenu des informations limitées disponibles concernant les perceptions des pères sur les TSA de leurs enfants, cette étude visait à étudier les variables pères (stress, adaptation, soutien et perception du handicap) et comment elles se comparent à celles des mères.
Les participants étaient 361 parents biologiques (294 mères et 67 pères) d'enfants autistes qui ont participé à une étude plus vaste.
Les résultats ont révélé des différences significatives entre le stress et l'adaptation autodéclarés par les mères et les pères.
Comprendre les différences entre les points de vue des parents a à la fois des implications de recherche et cliniques pour travailler avec des familles qui élèvent des enfants autistes.

. 2021 May 23.  doi: 10.1007/s10803-021-050

Comparing Fathers' and Mothers' Perspectives About Their Child's Autism Spectrum Disorder

Stacey C Grebe  ^{1   2} , Sarah S Mire  ³ , Hanjoe Kim  ³ , Milena A Keller-Margulis  ³

Affiliations

• PMID: 34027629
• DOI: 10.1007/s10803-021-05077-7

Abstract

Mothers are often the primary parent participants in autism spectrum disorder (ASD) research. As a result, little is known about fathers' perceptions regarding their children's ASD and whether these perceptions differ from mothers'. Given the limited information available regarding fathers' perceptions about their children's ASD, this study aimed to investigate father variables (stress, coping, support, and perception of disability) and how they compare to mothers'. Participants were 361 biological parents (294 mothers and 67 fathers) of children on the autism spectrum who participated in a larger study. Results revealed significant differences between mothers' and fathers' self-reported stress and coping. Understanding differences between parents' perspectives has both research and clinical implications for working with families raising children on the autism spectrum.

Keywords: Autism; Coping style; Fathers; Parental stress; Perception of disability; Support style.

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