WAFT

Well-being, Autism and neurodevelopmental disorders, Families, Teachers and caregivers

 

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Well-being of families

© Damien Ridremont

Axis 2 objectives:

Following the eco-systemic approach adopted in the WAFT program (Bronfenbrenner, 1979), the second line of research focuses on one part of the microsystem around the autistic person: the family. Indeed, families are particularly affected by the ASD of their loved one, with whom they share their lives. As “natural caregivers,” family members (e.g., parents, siblings, grandparents) are often the point of contact for all the steps the autistic person needs to take for inclusion or medical/social care. Therefore, the work carried out in this area focuses on the varied experiences of family members at different stages (e.g., diagnostic procedure, announcement, post-announcement) and on the conjugal and family dynamics that families put in place to adapt to the autism of their loved one.
Thanks to these studies, the aim is not only to advise families and professionals working with people with autism but also to suggest ways of improving interventions to enhance their well-being. The systemic approach also makes it possible to consider the indirect effect of improving the well-being of families: maximizing the quality of life and reducing the stress of those close to autistic persons means improving support for the autistic person, thus also improving their own well-being. Find out more about the Axis 2 studies below.

Current research

Well-being of parents of a child with an autism spectrum disorder: Cross-cultural and cross-disorder comparative studies – the BEPARACT project (2021 – 2025)

Research conducted as part of Léa Chawki‘s doctoral thesis

Direction : Émilie Cappe, Université Paris Cité

Funding:  IReSP/CNSA, AAP « Autisme et SHS 2021 »

Collaborator: Caroline Huron (Inserm)

Clinical partners: Alameddine Abbas (Université de Balamand, Liban), Centre de l’Autisme et des Handicaps Associés de l’Université de Miami (Directeur exécutif : Michael Alessandri), Eve-Line Buissières (Université du Québec à Trois-Rivières), Service de Psychiatrie de l’Enfant et de l’Adolescent de la Pitié-Salpêtrière (Chef de service : David Cohen), De Gaulmyn Aude (Centre régional de Recherche et de Diagnostic de l’Autisme et des Troubles apparentés du GHU Paris psychiatrie & neurosciences), Anne-Marie Dorelien (« A friendly face », New-York, USA), Plateforme d’orientation et information des usagers en PEA du CH le Vinatier (Responsable : Marie-Maude Geoffroy), Autism Awareness Association (Directrice : Ghada Hayek), Romain Taton (Centre Ressources Autisme Normandie Seine-Eure), Nathalie Poirier (Université du Québec à Montréal), Association « Step Together » (Responsable : Rim Nashabe Mouawad, Liban), Centre Ressources Autisme Limousin (Directeur médical : Eric Lemonier), Luciana Lash (Université de McGill), La Boussole (Médecin coordinateur : Pascale Isnard).

Access to the Léa Chawki’s page

Publication related to research:

  • Chawki, L., & Cappe, É. (2022). Surcharge parentale et stratégies de coping chez les parents d’enfants autistes. Contraste, 56, 113-128.
Parents' adjustment to the diagnosis and disability of a child on the autism spectrum: A study of perceived family functioning and transactional processes (2019 – 2024)

Research conducted as part of Gwendoline Desquenne Godfrey‘s doctoral thesis

Direction : Émilie Cappe, Université Paris Cité

Clinical partners: Centre régional de Recherche et de Diagnostic de l’Autisme et des Troubles apparentés du GHU Paris psychiatrie & neurosciences (Chef de service : Catherine Doyen), Centre d’excellence InovAND – Hôpital Universitaire Robert Debré (Psychiatre responsable : Dr. Valérie Vantalon), Hôpital Universitaire Necker – Enfants Malades, Centre Ressources Autisme Normandie Seine-Eure (Médecin coordonnateur : Antoine Rosier)

Access to the Gwendoline Desquenne Godfrey’s page

Publication related to research:

  • Desquenne Godfrey, G., Downes, N., & Cappe, É. (2022). A systematic review of family functioning in families of children on the spectrum disorder. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-022-05830-6 (PsycInfo, SJR Q1, Impact Factor 5.671) Full-text view-only version: https://rdcu.be/c3abf

Completed research

Evaluation of a procedure including parents during the diagnostic process of an autism spectrum disorder (ASD): Parental experience and adjustment (2017 – 2023)

Objectives:
The primary aim of this study was to determine the effects of a permanent, mediated parental presence during all autism spectrum disorder diagnostic assessments on parental coping (perceived parental stress and sense of parental competence), compared with a procedure that traditionally involves parents only during pivotal periods of diagnosis. Secondary objectives were: 1) to assess the effects of psychosocial, individual, and contextual variables on perceived parental stress and sense of parental competence; and 2) to assess the level of satisfaction with the diagnostic procedure and the needs of parents. The sample of 49 parents was divided (using simple randomization) into two subgroups, each for a different procedure. Participants were interviewed before and after the first consultation. They completed self-report questionnaires (parental stress, sense of parental competence, satisfaction with the procedure, social support, locus of control, and life-event appraisal). There was no difference between the two groups on the variables assessed. The child’s level of autonomy, the presence of disruptive behaviors, and satisfaction with social support were important in determining parental adjustment. Satisfaction with the diagnostic procedure was very high in both groups, but parents described significant post-diagnostic needs.

Clinical partners: Unité de diagnostic et d’évaluation pluri-professionnelle / autisme et troubles apparentés – UNIDEP de l’EPS de Ville-Evrard (Chef de service : Noël Pommepuy), Centre régional de Recherche et de Diagnostic de l’Autisme et des Troubles apparentés du GHU Paris psychiatrie & neurosciences (Chef de service : Catherine Doyen)

Publication related to research: : 1 article submitted

Perceived stress, dyadic coping strategies, and parental alliances in parents of a child with an autism spectrum disorder after the diagnosis: Couple adaptations and commitment to the child's education (2017 – 2021)

Research conducted as part of Naomi Downes‘s doctoral thesis, defended in 2021

Thesis summary:
This thesis aimed to explore how parents can use their couple relationship as a support in the face of the stress generated by having a child on the autism spectrum, in order to act as a team in their child’s education. More specifically, the study used questionnaires to investigate the relationships between cognitive appraisal of stress, sense of parental competence, dyadic coping, and co-parenting. Once the questionnaires had been completed, the 71 participating parent-couples were invited to participate in a semi-structured couple interview. Ten couples took part. The results show that parents’ dyadic coping and sense of parenting competence were related to their level of co-parenting. Regarding each partner’s influence on the other, mothers’ positive dyadic coping increased fathers’ perceived quality of the co-parenting relationship. Fathers’ sense of parenting competence was associated with mothers’ higher levels of co-parenting. For the semi-structured interviews, a thematic content analysis was carried out using NVivo software. Three themes emerged: emotional experiences, support outside the parental couple, and adaptation.

Access to the thesis manuscript

Direction: Émilie Cappe, Université Paris Cité

Funding: Fondation Mustela

Clinical partners: Service en Neurodévellopement, Réhabilitation, intervention et suivi chez l’enfant du Centre Hospitalier le Vinatier (Responsable du service : Marie-Maude Geoffray), Service de Psychopathologie de l’enfant et de l’Adolescent de l’hôpital Bichat-Claude Bernard (Chef de service : Antoine Guedeney), Centre Expert Autisme Limousin (Directeur : Éric Lemonnier), Service universitaire de psychiatrie de l’enfant et de l’adolescent du Centre Hospitalier de Versailles (Chef de service : Mario Speranza)

Publication related to research:

Quality of life and adaptation processes in siblings of children with autism spectrum disorders (2017 – 2019)

Research conducted as part of Valérie Nillama‘s Master’s thesis, defended in 2018

Objectives :
The aim was to study quality of life, anxiety-depressive symptomatology, and the quality of parent-child and sibling relationships in adolescents who had an autistic sibling, compared with adolescents whose sibling did not have a disability. The sample comprised 38 adolescents (aged 12 to 17) who completed several questionnaires. Adolescents whose siblings had autism showed higher anxiety symptomatology and more asymmetrical sibling relationships in terms of educational support. Significant positive correlations were found for adolescents whose siblings had autism between quality of life, quality of parent-child relationships, and quality of sibling relationships. These results show the need, in the case of an autism diagnosis, to have a family perspective of the situation and to offer support that takes family relationships into account.

Research collaborator: Cyrielle Derguy (Université Paris Cité)

Clinical partner: Valérie Nillama, Psychologist, Centre Médico-Psycho-Pédagogique Henri Wallon (La Reunion Island)

Publication related to research:

  • Nillama, V., Derguy, C., Bellalou, L., & Cappe, É. (2019). Vécu psychologique d’adolescents ayant un frère ou une sœur porteur d’un Trouble du Spectre de l’Autisme et qualités des relations intrafamiliales. Annales médico-psychologiques, 177(2), 149-156. https://doi.org/10.1016/j.amp.2018.02.017 (PsycInfo, SJR Q2, Impact Factor 0.38) Access to publication on HAL
  • Bellalou, L., Derguy, C., & Cappe, É. (2019). Influence du trouble du spectre de l’autisme sur la fratrie : relations familiales, qualité de vie et symptomatologie anxio-dépressive. Description de deux études françaises. In C. Derguy & É. Cappe (Eds.), Familles et trouble du spectre de l’autisme (p. 227-237).Paris, France : Dunod.
Evaluation of the implementation and effects of a psycho-educational program for parents of children with autism spectrum disorders (PPETED, 2015 – 2018)

Objectives :
The “Au-delà du TED: des compétences parentales à ma portée!” program is aimed at parents of children with autism. It aims to help them recognize, develop, and update their parenting skills. The aim was to evaluate the process of implementing the program within the establishments and the effects on the parents who participated to ensure a high-quality service for parents and, if necessary, to improve it. The professionals who ran the workshops were generally satisfied with how they went. The main difficulty was managing time: the duration of activities was not always respected, and parents’ speaking time was difficult to regulate. As for the effects of the program on parents, several improvements were noted, including better knowledge of ASDs, reduced parental stress, a more positive perception of their experience as parents of a child with an ASD, enhanced ability to adjust to stress and, more generally, an improvement in their quality of life (relationship with the child, psychological well-being, personal fulfillment). In addition to these positive effects, the program also enabled parents to share their experiences with other parents, thus breaking down their isolation. This project has demonstrated both the effectiveness of this Quebec-based support program on parents’ quality of life and its ease of implementation.

Results summary

Funding: IReSP/CNSA, AAP “Autisme 2014”

Clinical partners: CIUSSS MCQ-IU (Trois-Rivières, Canada), CRA de la Région Centre-Val de Loire du CHRU de Tours (Chef de service : Frédérique Bonnet-Brilhault), CRA Île-de-France (Directeur : Thomas Bouquet), Service de psychiatrie de l’enfant et de l’adolescent de l’hôpital Robert Debré (Chef de service : Richard Delorme), Centre régional de Recherche et de Diagnostic de l’Autisme et des Troubles apparentés du GHU Paris psychiatrie & neurosciences (Chef de service : Catherine Doyen), Service de Psychopathologie de l’enfant et de l’Adolescent de l’hôpital Bichat-Claude Bernard (Chef de service : Antoine Guedeney), Centre Ressources Autisme Normandie Seine-Eure (Médecin coordonnateur : Antoine Rosier), Centre Expert Autisme Limousin (Directeur : Éric Lemonnier), Unité de diagnostic et d’évaluation pluri-professionnelle / autisme et troubles apparentés – UNIDEP de l’EPS de Ville-Evrard (Chef de service : Noël Pommepuy)

Publication related to research:

  • Cappe, É., Albert-Benaroya, S., Downes, N., Allard Ech-Chouikh, J., De Gaulmyn, A., Luperto, L., Caron, V., Roussel, É., Taton, R., & Sankey, C. (2021). Preliminary results of the effects of a psychoeducational program on stress and quality of life among French parents of a child with autism spectrum disorder. Focus on Autism and Other Developmental Disabilities, 36(3), 176-186. https://doi.org/10.1177/1088357620986946 (Pubmed, SJR Q1, Impact Factor 3.532)
  • Sankey, C., Girard, S., & Cappe, É. (2021). Evaluation of the implementation process and social validity of a support program for parents of child with Autism Spectrum Disorder. International Journal of Developmental Disabilities, 67(2), 101-111. https://doi.org/10.1080/20473869.2019.1598721(PsycInfo, SJR Q4, Impact Factor 1.156) Access to publication on HAL
  • Decroocq, C., Soulas, T., Lichtlé, J., Sankey, C., Engelberg, A., & Cappe, É. (2020). Facilitators’ perspectives on a psychoeducational program for parents of an autistic child. Autism, 24(5), 1273-1285. https://doi.org/10.1177%2F1362361319899766 (PsycInfo, SJR Q1, Impact Factor 7.271) Access to publication on HAL
  • Sankey, C., Derguy, C., Ilg, J., Clément, C., & Cappe, É. (2019). Supporting parents of a child with Autism Spectrum Disorder: the French awakening. Journal of Autism and Developmental Disorder,49(3), 1142-53. https://doi.org/10.1007/s10803-018-3800-x (PsycInfo, SJR Q1, Impact Factor 5.671) Access to publication on HAL Link to article : https://rdcu.be/bbOW0
  • Cappe, É., Lichtlé, J., & Sankey, C. (2019). Le programme « Au-delà du TED : des compétences parentales à ma portée ! ». Présentation d’une étude visant à évaluer le processus d’implantation du programme et ses effets auprès de parents français. In C. Derguy & É. Cappe (Eds.), Familles et trouble du spectre de l’autisme (p. 318-331). Paris, France : Dunod.
  • Cappe, É., Stipanicic, A., Rousseau, M., Couture, G., & Rivest, C. (2019). Satisfaction parentale face à un programme de soutien destiné aux parents d’enfants ayant un trouble du spectre de l’autisme.Revue francophone de la Déficience Intellectuelle, 29, 46-58. Access to publication on HAL
Qualité de vie et processus d’adaptation des parents d’enfants autistes ou d'enfants ayant un trouble déficit de l’attention/hyperactivité (2006 – 2017)

Objectives:
Having a child with autism or attention-deficit/hyperactivity disorder (ADHD) is a source of stress and considerably disrupts parents’ quality of life. Indeed, because of the child’s specific needs, parents face numerous daily challenges, necessarily involving a reorganization of the family structure. Parents are thus more likely to experience adjustment difficulties resulting from dynamic and interdependent interactions between transactional and socio-environmental variables. There are also differences in terms of interventions, schooling, and social inclusion of people with autism or ADHD between France, French-speaking Belgium, and Quebec. This research aimed to explore the adjustment processes and quality of life of parents of children with autism or ADHD and to explore the differences in adjustment processes between French, French-speaking Belgian, and Quebec parents. This research led to several publications. The numerous results highlighted that, on average, children in France are diagnosed later than in French-speaking Belgium and Quebec. They also spend less time in school each week. French parents perceive their situation more as a loss. Their social support network is broader, although they are less likely to seek social support when faced with a stressful situation related to their child’s difficulties. For further results, please consult the published articles.

Research collaborators: Carmen Dionne (Université du Québec à Trois-Rivières), Nathalie Nader-Grosbois (Université Catholique de Louvain), Nathalie Poirier (Université du Québec à Montréal),

Clinical partners: Service de psychiatrie de l’enfant et de l’adolescent de l’hôpital Robert Debré (Chef de service : Richard Delorme)

Publication related to research:

  • Cappe, É., Pedoux, A., Poirier, N., Downes, N., & Nader-Grosbois, N. (2020). Adaptation and quality of life of parents with a child with autism spectrum disorder: a comparative exploratory study between France, French-Speaking Belgium and Quebec. Psychologie Française, 65(2), 141-155. https://doi.org/10.1016/j.psfr.2018.11.002 (SCImago-SCOPUS, ScienceDirect, Pascal Francis, SJR Q3, Impact Factor 0.686)
  • Baeza-Velasco, C., Poirier, N., Nader-Grosbois, N., & Cappe, É. (2019). Élever un enfant ayant un trouble du spectre de l’autisme : quel impact sur le couple ? In C. Derguy & É. Cappe (Eds.), Familles et trouble du spectre de l’autisme (p. 238-245). Paris, France : Dunod.
  • Cappe, É. (2019). Adaptation psychosociale de parents francophones d’un enfant ayant un trouble du spectre de l’autisme : présentation d’un programme de recherches. In C. Derguy & É. Cappe (Eds.), Familles et trouble du spectre de l’autisme (p. 191-203). Paris, France : Dunod.
  • Downes, N., & Cappe, É. (2019). Expériences des couples, des grands-parents et de la fratrie : revue de la littérature nationale et internationale. In C. Derguy & É. Cappe (Eds.), Familles et trouble du spectre de l’autisme (p. 213-226). Paris, France : Dunod.
  • Lichtlé, J., & Cappe, É. (2019). Stress, ajustement et qualité de vie des parents : revue de la littérature, conclusions, perspectives d’interventions et de recherche. In C. Derguy & É. Cappe (Eds.), Familles et trouble du spectre de l’autisme (p. 125-141). Paris, France : Dunod.
  • Pedoux, A., & Cappe, É. (2019). Comprendre les besoins des aidants familiaux ayant un enfant avec un TSA pour mieux les soutenir : une revue de la littérature nationale et internationale. In C. Derguy & É. Cappe (Eds.), Familles et trouble du spectre de l’autisme (p. 77-90). Paris, France : Dunod.
  • Cappe, É., Poirier, N., Sankey, C., Belzil, A., & Dionne, C. (2018). Quality of life of French-Canadian parents raising a child with autism and effects of psychosocial factors. Quality of Life Research, 27, 955-967. https://doi.org/10.1007/s11136-017-1757-4 (PsycInfo, SJR Q1, Impact Factor 4.072) Full-text view-only version
  • Cappe, É., Bolduc, M., Rougé, M.-C., Saiag, M.-C., & Delorme, R. (2017). Characteristics and psychological adjustment in parents of children with Attention Deficit Hyperactivity Disorder. Quality of Life Research, 26(5), 1283-1294. https://doi.org/10.1007/s11136-016-1446-8 (PsycInfo, SJR Q1, Impact Factor 4.072)
  • Cappe, É., Poirier, N., Boujut, É., Nader-Grosbois, N., Dionne, C., & Boulard, A. (2017). Trouble du spectre de l’autisme et évaluation du stress perçu des parents et des professionnels : étude des propriétés psychométriques d’une adaptation francophone de l’Appraisal of Life Event Scale (ALES-vf). L’Encéphale, 43(4), 321-325. https://doi.org/10.1016/j.encep.2016.08.001 (PsycInfo, SJR Q2, Impact Factor 1.291)
  • Cappe, É., & Poirier, N. (2016). Les besoins exprimés par les parents d’enfants ayant un TSA : une étude exploratoire franco-québécoise. Annales médico-psychologiques, 174, 639-643. https://doi.org/10.1016/j.amp.2015.06.003 (PsycInfo, SJR Q2, Impact Factor 0.38)
  • Nader-Grosbois, N., & Cappe, É. (2015). Être parent d’un enfant présentant un trouble du spectre de l’autisme : du stress… à une vie de meilleure qualité. In I. Roskam & M. Mikolajczak (Eds.), Stress et défis de la parentalité : thématiques contemporaines (p. 169-188). Bruxelles, Belgique : De Boeck.
  • Cappe, É., Chatenoud, C., & Paquet, A. (2014). Les caractéristiques des personnes ayant un TSA et des autres membres de la famille influençant l’adaptabilité familiale. In C. Chatenoud, J.-C. Kalubi & A. Paquet (Eds.), La famille et la personne ayant un trouble du spectre de l’autisme. Comprendre, soutenir et agir autrement (p. 51-69). Québec, QC : Éditions Nouvelles.
  • Paquet, A., Chatenoud, C., & Cappe, É. (2014). Les fonctions familiales. In C. Chatenoud, J.-C. Kalubi & A. Paquet (Eds.), La famille et la personne ayant un trouble du spectre de l’autisme. Comprendre, soutenir et agir autrement (p. 94-112). Québec, QC : Éditions Nouvelles.
  • Cappe, É., Wolff, M., Bobet, R., & Adrien, J.-L. (2012). Étude de la qualité de vie et des processus d’adaptation des parents d’un enfant ayant un trouble autistique ou un syndrome d’Asperger : effet de plusieurs variables socio-biographiques parentales et caractéristiques liées à l’enfant. L’Évolution Psychiatrique, 77, 181-199. https://doi.org/10.1016/j.evopsy.2012.01.008 (PsycInfo, SJR Q3, Impact Factor 0.368)
  • Cappe, É., Wolff, M., Bobet, R., & Adrien, J.-L. (2011). Quality of life: a key variable to consider in the evaluation of adjustment in parents of children with autism spectrum disorders and in the development of relevant support and assistance programmes. Quality of Life Research, 20(8), 1279-1294. https://doi.org/10.1007/s11136-011-9861-3 (PsycInfo, SJR Q1, Impact Factor 4.072)
  • Cappe, É. (2011). Évaluation de la qualité de vie des parents d’enfants avec autisme. In J.-L. Adrien & M.-P. Gattegno (Eds.), Autisme de l’enfant, évaluations, interventions et suivis (p. 87-112). Wavre, Belgique : Éditions Mardaga.
  • Cappe, É., Bobet, R., & Adrien, J.-L. (2009). Psychiatrie sociale et problèmes d’assistance : Qualité de vie et processus d’adaptation des parents d’un enfant ayant un trouble autistique ou un syndrome d’Asperger. La Psychiatrie de l’enfant, 52(1), 201-246. https://doi.org/10.3917/psye.521.0201(PsycInfo, SJR Q4, Impact Factor 0.143)