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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Expériences des pères concernant le diagnostic de "trouble du spectre de l'autisme" de leur enfant: une revue narrative de la recherche internationale

Aperçu: G.M.

But et objectifs:
Le but de cette revue systématique était d'identifier les points de vue et les expériences des pères concernant le diagnostic de "trouble du spectre de l'autisme" de leur enfant. 

Contexte:
Le diagnostic de "trouble du spectre de l'autisme" d'un enfant peut être une expérience stressante, créant de l'incertitude pour les parents. Il y a eu une recherche limitée sur les points de vue et les expériences des pères en ce qui concerne le diagnostic de "trouble du spectre de l'autisme" de leur enfant. 

Conception:
Une revue systématique de la littérature des études de recherche quantitatives, qualitatives et de méthodes mixtes. Sources de données: Academic Search Complete, CINAHL, MEDLINE et PsycINFO. 

Méthodes:
D'août à octobre 2020, deux auteurs ont indépendamment procédé à une extraction systématique des données et évalué les études à l'aide d'un instrument reconnu. La liste de contrôle PRISMA a été utilisée dans l'examen. 

Résultats:
Neuf articles répondaient aux critères d'inclusion. Quatre thèmes ont émergé: (a) la reconnaissance graduelle du retard de développement, (b) un moment émotionnel, (c) faire face et adaptation et (d) les ajustements continus du rôle de père. 

Conclusions:
Les infirmières et autres professionnels doivent travailler en collaboration avec les pères pour améliorer leurs expériences et fournir du soutien au moment du diagnostic de "trouble du spectre de l'autisme".

. 2021 May 5. doi: 10.1111/jocn.15781. 

Experiences of fathers regarding the diagnosis of their child with autism spectrum disorder: A narrative review of the international research

Michael Brown  ¹ , Lynne Marsh  ¹ , Edward McCann  ²

Affiliations

• PMID: 33951251
• DOI: 10.1111/jocn.15781

Abstract

Aim and objectives: The aim of this systematic review was to identify the views and experiences of fathers regarding their child's Autism Spectrum Disorder diagnosis.

Background: The diagnosis of a child's Autism Spectrum Disorder may be a stressful experience, creating uncertainty for parents. There has been a limited research focus on the views and experiences of fathers in relation to the diagnosis of Autism Spectrum Disorder of their child.

Design: A systematic literature review of quantitative, qualitative and mixed-methods research studies.

Data sources: Academic Search Complete, CINAHL, MEDLINE and PsycINFO.

Methods: From August to October 2020, two authors independently performed a systematic data extraction and appraised the studies using a recognised instrument. The PRISMA checklist was used in the review.

Results: Nine papers met the inclusion criteria. Four themes emerged: (a) gradual recognition of developmental delay, (b) an emotional time, (c) coping and adaptation and (d) ongoing adjustments to the fathering role.

Conclusions: Nurses and other professionals need to work collaboratively with fathers to improve their experiences and provide supports at the time of Autism Spectrum Disorder diagnosis.

Keywords: ASD; autism spectrum disorder; diagnosis; fathers; nurses; support; systematic review.

© 2021 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.

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Autonomisation chez les pères polonais d'enfants autistes et atteints du syndrome de Down: le rôle du soutien social et de la gestion du stress - rapport préliminaire

Aperçu: G.M.

CONTEXTE:
Bien que l’autonomisation (octroi de davantage de pouvoir à des individus ou à des groupes pour agir sur les conditions sociales, économiques, politiques ou écologiques auxquelles ils sont confrontés, source Wikipédia) soit un facteur important dans l’adaptation des parents d’enfants ayant une déficience intellectuelle et développementale, notre compréhension de l’autonomisation chez les pères ou de son lien avec la gestion du stress et du soutien social subjectif est limitée. En Pologne, les familles ayant l'expérience avec des enfants ayant une déficience intellectuelle rencontrent de nombreux problèmes en raison d’un soutien insuffisant. Bien que la contribution des parents au développement de différentes formes de services pour les personnes handicapées soit cruciale, le potentiel des pères est sous-estimé et mal compris.
METHODES:
L'étude a recruté 35 pères d'enfants autistes ayant une déficience intellectuelle, 37 pères d'enfants atteints du syndrome de Down et 40 pères d'enfants au développement typique. Ils ont rempli trois questionnaires: Échelle d'habilitation de la famille, Questionnaire sur les moyens de faire face à l'adaptation et Questionnaire sur le soutien social - Formulaire abrégé.
RÉSULTATS:
Comparativement à d'autres groupes, l'autonomisation de la famille était plus faible chez les pères d'enfants autistes. Aucune différence de groupe n'a été trouvée pour le système de services et les dimensions communautaires de l'autonomisation. Chez les pères d'enfants autistes, le soutien social n'était pas lié à l'autonomisation, mais il existait une corrélation négative entre l'adaptation émotionnelle et le système de services. La satisfaction du soutien social chez les pères d'enfants atteints du syndrome de Down était en corrélation positive avec la dimension communautaire de l'autonomisation.
CONCLUSIONS:
Les résultats montrent que les pères d’enfants autistes avec un déficience intellectuelle ont besoin d’un soutien pour l’autonomisation de la famille et que l’importance de l’adaptation et du soutien social axés sur les émotions et les problèmes dans le contexte de l’autonomisation varie chez les pères d’enfants autistes et atteints du syndrome de Down. Ces résultats doivent être considérés comme préliminaires en raison de la taille réduite de l'échantillon.

J Intellect Disabil Res. 2019 Aug 16. doi: 10.1111/jir.12681.

Empowerment in Polish fathers of children with autism and Down syndrome: the role of social support and coping with stress - a preliminary report

Pisula E¹, Banasiak A².

Author information

1

Faculty of Psychology, University of Warsaw, Warsaw, Poland.

2

Faculty of Pedagogy, Jan Długosz University in Częstochowa, Częstochowa, Poland.

Abstract

BACKGROUND:

Although empowerment is an important factor in the adaptation of parents of children with intellectual and developmental disabilities, our understanding of empowerment in fathers or how it relates to coping with stress and subjective social support is limited. In Poland, families with children with intellectual and developmental disabilities experience many challenges because of insufficient support. Although parental contribution to developing different forms of services for people with disability is crucial, the potential of fathers is underestimated and poorly understood.

METHODS:

The study enrolled 35 fathers of children with autism with intellectual disability, 37 fathers of children with Down syndrome and 40 fathers of typically developing children. They completed three questionnaires: Family Empowerment Scale, Ways of Coping Questionnaire and Social Support Questionnaire - Short Form.

RESULTS:

Compared with other groups, family empowerment was lower in fathers of children with autism. No group differences were found for the service system and community dimensions of empowerment. In the fathers of children with autism, social support was not related to empowerment, but there was a negative correlation between emotional coping and service system. Satisfaction with social support in fathers of children with Down syndrome correlated positively with the community dimension of empowerment.

CONCLUSIONS:

Results show that fathers of children with autism and intellectual disability require support in family empowerment and that the significance of emotion-focused and problem-focused coping and social support in the context of empowerment differs in fathers of children with autism and Down syndrome. These results should be considered preliminary because of the limited sample size.

© 2019 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

KEYWORDS:

Down syndrome; autism; coping styles; empowerment; fathers; social support

PMID:31418969

DOI:10.1111/jir.12681

Liaison de l'axe HPA dans les dyades parents-enfants: effets du sexe parental, diagnostic du spectre de l'autisme et comportement des relations diadiales

Aperçu: G.M.

Les familles d'enfants d'âge préscolaire ont participé à deux visites dyadiques à domicile, une fois avec la mère (56 dyades) et une fois avec le père (59 dyades). Chaque membre de la dyade a fourni trois échantillons de cortisol et a participé à plusieurs tâches d'interaction qui ont été codées selon le comportement. Environ la moitié des enfants avaient été diagnostiqués avec des "troubles du spectre de l'autisme" (TSA), alors que la moitié avaient un développement typique (TD).  

Dans un modèle multiniveau, le niveau de cortisol du père prédisait à chaque prélèvement le cortisol chez l'enfant. 

Le lien père-enfant était plus fort dans les dyades qui présentaient moins de réciprocité, dans lesquelles les pères avaient moins de sensibilité et dans lesquels les enfants présentaient moins d'autorégulation et plus de retrait.  

Les taux de cortisol n'étaient pas significativement corrélés chez les dyades mère-enfant et il y avait une tendance à la modération par le diagnostic TSA, de sorte que la liaison était plus grande chez les enfants TD.  

Le lien mère-enfant était plus fort dans les dyades qui présentaient moins de coordination comportementale et moins de sensibilité.

La liaison de l'axe hypothalamo-hypophyso-surrénalien (HPA) peut être plus forte dans des dyades moins harmonisées comportementalement. 

Dev Psychobiol. 2017 Jun 13. doi: 10.1002/dev.21537.

HPA axis linkage in parent-child dyads: Effects of parent sex, autism spectrum diagnosis, and dyadic relationship behavior

Saxbe DE¹, Golan O², Ostfeld-Etzion S², Hirschler-Guttenberg Y², Zagoory-Sharon O³, Feldman R^2,3.

Author information

1

Department of Psychology, University of Southern California, Los Angeles, CA.

2

Department of Psychology, Bar-Ilan University, Ramat Gan, Israel.

3

Gonda Brain Sciences Center, Bar-Ilan University, Ramat Gan, Israel.

Abstract

Families of preschoolers participated in two dyadic home visits, once with mother (56 dyads) and once with father (59 dyads). Each member of the dyad provided three cortisol samples and participated in several interaction tasks that were behaviorally coded. Approximately half of the children had been diagnosed with autism spectrum disorders (ASD), whereas half were typically developing (TD). In a multilevel model, father's cortisol level at each timepoint predicted child cortisol. Father-child linkage was stronger in dyads that showed less reciprocity, in which fathers showed less sensitivity, and in which children showed less self-regulation and more withdrawal. Cortisol levels were not significantly correlated in mother-child dyads, and there was a trend toward moderation by ASD diagnosis, such that linkage was greater in TD children. Mother-child linkage was stronger in dyads that showed less behavioral coordination and less sensitivity. HPA axis linkage may be stronger in less behaviorally attuned dyads.

© 2017 Wiley Periodicals, Inc.

PMID:28608542

DOI:10.1002/dev.21537