La relation entre la qualité de vie de la famille, l'attention consciente et le soutien social dans les familles de personnes avec un diagnostic de trouble du spectre de l'autisme

Aperçu: G.M.

Résumé

Contexte :
Dans les familles de personnes avec un diagnostic de trouble du spectre de l'autisme (dTSA), les difficultés supplémentaires auxquelles elles sont confrontées peuvent influencer leur perception de la qualité de vie familiale (QVF). Il est important d'identifier les facteurs qui favorisent la perception de leur bien-être et qui sont susceptibles de faire l'objet d'une intervention. Notre objectif était d'explorer l'association entre l'attention attentive et la qualité de vie familiale dans ces familles en contrôlant leur soutien social perçu. 
 

Méthode :
Quatre-vingt-seize parents de personnes avec un dTSA ont été évalués à l'aide de la Mindful Attention and Awareness Scale (MAAS), du Support Questionnaire for Parents with Children with Disability et le Spanish Family Quality of Life Scale pour les familles ayant des membres mineurs atteints de déficiences intellectuelles et de troubles du développement. 

Résultats :
Les analyses de régression multiple ont révélé que des niveaux élevés d'attention consciente prédisaient positivement la qualité de vie après avoir contrôlé l'influence du soutien social. 

Conclusions :
Les implications pratiques sont discutées en termes d'interventions de soutien familial. Nous concluons que les interventions basées sur l'attention peuvent être utiles aux familles d'enfants et d'adolescents avec un dTSA pour améliorer leur qualité de vie.

. 2022 Sep 16;70(4):604-614.

doi: 10.1080/20473869.2022.2122248. eCollection 2024.

The relationship between family quality of life, mindful attention, and social support in families of people with autism spectrum disorder

Ester Herrera  ¹ , Sofia Baena  ¹ , Victoria Hidalgo  ¹ , Eva Trigo  ²

Affiliations

• PMID: 38983492
• PMCID: PMC11229717
• DOI: 10.1080/20473869.2022.2122248

Abstract

Background: In families of individuals with autism spectrum disorder (ASD), the added difficulties they face may influence their perception of family quality of life (FQoL). It is important to identify factors which foster their perceived wellbeing and are susceptible to intervention. Our aim was to explore the association between mindful attention and FQoL in these families controlling their perceived social support. Method: Ninety-six parents of people with ASD were evaluated using the Mindful Attention and Awareness Scale (MAAS), the Support Questionnaire for Parents with Children with Disability, and the Spanish Family Quality of Life Scale for families with underage members with intellectual and developmental disabilities. Results: Multiple regression analyses revealed that high levels of mindful attention positively predicted FQoL after controlling the influence of social support. Conclusions: Practical implications are discussed in terms of family support interventions. We conclude that mindful attention interventions may be useful for families with children and adolescents with ASD to improve their FQoL.

Keywords: ASD; Family quality life; family support; mindful attention; social support.

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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Interventions assistée par des robots pour enseigner aux enfants avec un diagnostic de TSA une nouvelle compétence intraverbale

Aperçu: G.M.

Les robots d'assistance sociale (RAS) ont le potentiel d'avoir un impact sur les thérapies des "troubles du spectre de l'autisme" (TSA) en aidant les cliniciens à augmenter les opportunités d'apprentissage offertes aux individus. Des recherches récentes sur la prestation de l'intervention par robot (RMI) ont principalement abordé les déficits sociaux des TSA avec des résultats positifs. La littérature actuelle ne se concentre que très peu sur l'enseignement aux enfants avec un diagnostic de TSA (dTSA) d'une compétence inconnue a priori par l'individu. En outre, on ne sait pas comment intégrer les robots dans les environnements cliniques car les RMI actuels ne respectent pas les protocoles d'analyse appliquée du comportement (ABA). 

Dans ce travail, nous avons cherché à savoir si un RMI pouvait être utilisé pour enseigner aux enfants avec un dTSA une toute nouvelle compétence de langage et de communication qu'ils ne pouvaient pas démontrer au départ.
Nous avons utilisé un outil d'évaluation ABA standard pour identifier d'abord les compétences appropriées pour enseigner aux enfants avec un dTSA. Nous avons ensuite développé, mis en œuvre et évalué une intervention RMI qui a suivi les procédures opérationnelles cliniques standard en ABA et cible les déficits de compétences uniques des participants.
Nous avons examiné les effets de la formation RMI sur l'enseignement de la réponse aux questions WH. 

Toutes les séances ont été menées avec le RAS en tant que thérapeute principal en utilisant des protocoles ABA d'enseignement humain  basés sur des preuves. Tous les participants ont acquis la compétence de réponse aux questions WH en sept sessions, ce qui correspond à leurs taux d'acquisition habituels.

. 2021 May 13. doi: 10.1080/10400435.2021.1930284. 

Robot-Mediated Interventions for Teaching Children with ASD a New Intraverbal Skill

Jessica Korneder  ¹ , Wing-Yue Geoffrey Louie  ² , Cristyn M Pawluk  ¹ , Ibrahim Abbas  ² , Molly Brys  ¹ , Faith Rooney  ¹

Affiliations

• PMID: 33983864
• DOI: 10.1080/10400435.2021.1930284

Abstract

Socially assistive robots (SAR) have the potential to impact therapies for Autism Spectrum Disorder (ASD) by supporting clinicians in increasing learning opportunities presented to individuals. Recent research on robot-mediated intervention (RMI) delivery has predominantly addressed social deficits in ASD with positive outcomes. Current literature has minimal focus on teaching children with ASD a skill not known apriori by the individual. Furthermore, it is unclear how to integrate robots in clinical settings because current RMIs do not adhere to Applied Behavior Analysis (ABA) protocols. In this work, we investigated whether a RMI could be utilized to teach children with ASD a completely new language and communication skill they could not exhibit at baseline. We utilized a standard ABA assessment tool to first identify appropriate skills to teach children with ASD. We then developed, implemented, and evaluated a RMI intervention that followed standard clinical operating procedures in ABA and targets participants' unique skill deficits. We examined the effects of the RMI training on teaching wh-question answering. All sessions were conducted with the SAR as the primary therapist using evidenced-based ABA human teaching protocols. All participants acquired the wh-questions answering skill within seven sessions which is in line with their typical acquisitions rates.

Keywords: Applied Behavior Analysis; A

Trouble du sommeil familial et "trouble du spectre de l'autisme": une étude d'actigraphie pilote sur la qualité du sommeil, la qualité de vie et la détresse psychologique

Aperçu: G.M.

Objectifs:
Les problèmes de sommeil sont courants chez les enfants avec un diagnostic de "trouble du spectre de l'autisme (dTSA) et peuvent avoir un impact négatif sur le comportement et le fonctionnement de l'enfant pendant la journée. L'étude pilote actuelle a examiné des mesures objectives du sommeil des enfants et des parents en tant que facteurs associés au stress, à l'anxiété, aux symptômes dépressifs, au soutien social et à la qualité de vie des parents d'enfants avec un dTSA. 

Méthodes:
Les participants étaient neuf enfants avec un dTSA et leurs parents (neuf mères et trois pères). Les participants ont porté un actigraphe pendant 7 jours et nuits consécutifs. Des mesures des habitudes et de la qualité du sommeil ont été utilisées pour vérifier le sommeil des enfants et des parents. Des mesures du stress parental, de l'anxiété, des symptômes dépressifs, de la qualité de vie et du soutien social ont été rassemblées. 

Résultats:
Les résultats ont indiqué l'émergence d'un stress parental élevé, d'anxiété et de symptômes dépressifs. Des corrélations significatives ont été observées entre les symptômes dépressifs des parents et la qualité subjective du sommeil et les perturbations du sommeil des enfants. 

Conclusions:
La présente étude a révélé que le bien-être des parents est affecté par les problèmes de sommeil des enfants.

• 2021 May 11;1-11.  doi: 10.1017/ipm.2021.24. 

Familial sleep and autism spectrum disorder: a pilot actigraphy study of sleep quality, quality of life and psychological distress

Geraldine Leader  ¹ , Carmel Glynn  ¹ , Bernadette Kirkpatrick  ² , June L Chen  ³ , Páraic S O'Súilleabháin  ^{4   5} , Arlene Mannion  ¹

Affiliations

• PMID: 33973508
• DOI: 10.1017/ipm.2021.24

Abstract

Objectives: Sleep problems are common among children with autism spectrum disorder (ASD) and can have a negative impact on the child's behaviour and daytime functioning. The current pilot study examined objective measurements of child and parent sleep as factors associated with the stress, anxiety, depressive symptoms, social support and quality of life of parents of children with ASD.

Methods: Participants were nine children with ASD and their parents (nine mothers and three fathers). Participants wore an actigraph for 7 consecutive days and nights. Measures of sleep habits and quality were used to ascertain child and parent sleep. Measures of parenting stress, anxiety, depressive symptoms, quality of life and social support were collated.

Results: Results indicated the emergence of high parental stress, anxiety and depressive symptoms. Significant correlations were observed between parent depressive symptoms, and both subjective sleep quality and child sleep disruptions.

Conclusions: The present study found that parental well-being is affected by child sleep problems.

Keywords: Autism spectrum disorder; actigraphy; parents; quality of life; sleep problems.