Abstracts
Résumé
La qualité de vie des familles d’enfant avec un trouble du spectre de l’autisme est affectée dans ses multiples domaines de fonctionnement, que ce soit sur les plans relationnel, psychologique ou encore somatique. Cette étude vise à évaluer, avec le Beach Center Family Quality of Life Scale, la qualité de vie des familles d’enfants avec un TSA et de la comparer à celles de parents tout-venant auprès d’une population française. Les résultats montrent une satisfaction moindre de la part des familles d’enfant avec un trouble du spectre de l’autisme avec notamment un bien-être émotionnel significativement inférieur. La présente étude permet de questionner l’outil Beach Center Family Quality of Life Scale dans un contexte culturel nouveau, le contexte français, et discute des perspectives de recherche en lien avec les modèles d’intervention à préconiser auprès des familles.
Mots-clés :
- Qualité de vie,
- autisme,
- parents,
- étude comparative,
- famille
Abstract
Family quality of life in parents raising a child with autism spectrum disorder (ASD) is disrupted in many ways. Parents of children with ASD are known to experience many challenges which affect their well-being. The current paper evaluates family quality of life among families of children with ASD compared to families of typically developing children by using the French adaptation of the Beach Center Quality of Life Scale. Compared with parents of typically developing children, parents of children with ASD reported lower family quality of life. Moreover, the French adaptation of the Beach Center Quality of Life Scale seems to be an adequate instrument to evaluate the family quality of life concept, though further research should validate the scale within a larger population.
Keywords:
- Family quality of life,
- Beach Center Quality of Life Scale,
- French adaptation,
- Autism spectrum disorder
Appendices
Bibliographie
- American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5 éd.). Arlington, VA: American Psychiatric Publishing.
- Beach Center on Disability. (2003). The Beach center family quality of life scale. Lawrence, KS: University of Kansas.
- Bobet, R. et Boucher, N. (2005). Qualité de vie de parents d'enfants autistes bénéficiant d'un accompagnement scolaire et à domicile spécialisé. Approche neuropsychologique des apprentissages chez l'enfant, 17(3-4), 169-178.
- Brown, I., Brown, R. I., Baum, N. T., Isaacs, B. J., Myerscough, T., Neikrug, S. et Wang, M. (2006). Family quality of life survey: Main caregivers of people with intellectual or developmental disabilities. Toronto, ON: Surrey place center.
- Burgess, A. F. et Gutstein, S. E. (2007). Quality of life for people with autism: Raising the standard for evaluating successful outcomes. Child and Adolescent Mental Health, 12(2), 80-86.
- Cappe, É. (2009). Qualité de vie et processus d’adaptation des parents d’un enfant ayant un trouble autistique ou un syndrome d’Asperger (Thèse de doctorat inédite). Paris, France: Université Paris Descartes.
- Cappe, É., Bobet, R. et Adrien, J.-L. (2009). Psychiatrie sociale et problèmes d'assistance qualité de vie et processus d'adaptation des familles d'un enfant ayant un trouble autistique ou un syndrome d'asperger. La psychiatrie de l'enfant, 52(1), 201-246.
- Cappe, É., Pedoux, A., Poirier, N., Downes, N., et Nader-Grosbois, N. (2019). 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. doi: 10.1016/j.psfr.2018.11.002
- Cappe, É., Poirier, N., Sankey, C., Belzil, A. et Dionne, C. (2018). Quality of life of french canadian parents raising a child with autism spectrum disorder and effects of psychosocial factors. Quality of Life Research, 27(4), 955-967.
- Cappe, É., Wolff, M., Bobet, R. et 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.
- Chamak, B., et Bonniau, B. (2013). Changes in the Diagnosis of Autism: How Parents and Professionals Act and React in France. Culture Medicine and Psychiatry, 37(3), 405-426.
- Clément, C. et Ilg, J. (2019). L’ABC du comportement de l’enfant avec un TSA : des parents en action ! Dans E. Cappe et C. Derguy (dir.), Familles et trouble du spectre de l'autisme (p. 332-342). Malakoff, France: Dunod.
- Cordoba-Andrade, L., Gomez-Benito, J. et Verdugo-Alonso, M. Á. (2008). Family quality of life of people with disability: A comparative analyses. Universitas Psychologica, 7(2), 369-383.
- Dardas, L. A. et Ahmad, M. M. (2014). Predictors of quality of life for fathers and mothers of children with autistic disorder. Research in Developmental Disabilities, 35(6), 1326-1333.
- Davis, K. et Gavidia-Payne, S. (2009). The impact of child, family, and professional support characteristics on the quality of life in families of young children with disabilities. Journal of Intellectual and Developmental Disability, 34(2), 153-162.
- Derguy, C., Michel, G., M’Bailara, K., Roux, S. et Bouvard, M. (2015). Assessing needs in parents of children with autism spectrum disorder: A crucial preliminary step to target relevant issues for support programs. Journal of Intellectual and Developmental Disability, 40(2), 1-11. doi: 10.3109/13668250.2015.10237 07.
- Eskow, K., Pineles, L. et Summers, J. A. (2011). Exploring the effect of autism waiver services on family outcomes. Journal of Policy and Practice in Intellectual Disabilities, 8(1), 28-35.
- Fourcade, C., Kruck, J., et Rogé, B. (2019). Le fardeau perçu chez les parents d'enfants avec un trouble du spectre de l'autisme : approche quantitative et qualitative du vécu parental. Dans C. Derguy et É. Cappe (dir.), Familles et trouble du spectre de l'autisme (p. 177-190). Malakoff, France: Dunod.
- Haute Autorité de Santé. (2012). Autisme et autres troubles envahissants du développement : interventions éducatives et thérapeutiques coordonnées chez l'enfant et l'adolescent. Repéré à http://www.has-sante.fr/portail/jcms/c_953959/autisme-et-autres-troubles-envahissants-du-developpement-interventions-educatives-et-therapeutiques-coordonnees-chez-lenfant-et-ladolescent
- Higgins, D. J., Bailey, S. R. et Pearce, J. C. (2005). Factors associated with functioning style and coping strategies of families with a child with an autism spectrum disorder. Autism, 9(2), 125-137.
- Hoffman, L., Marquis, J., Poston, D., Summers, J. A. et Turnbull, A. (2006). Assessing family outcomes: Psychometric evaluation of the beach center family quality of life scale. Journal of Marriage and Family, 68(4), 1069-1083.
- Ilg, J., Jebrane, A., Paquet, A., Rousseau, M., Dutray, B., Wolgensinger, L. et Clément, C. (2018). Evaluation of a French parent-training program in young children with autism spectrum disorder. Psychologie française, 63, 181-199. doi: 10.1016/j.psfr.2016.12.004
- Ilg, J., Rousseau, M. et Clément, C. (2016). L’ABC des enfants ayant un TSA : des parents en action! Trois Rivières, QC: Les Collections de l’institut universitaire en DI et en TSA.
- Jagla, M., Schenk, J., Hampel, P., Bullinger, M. et Franke, G. H. (2016). Siblings of children with autism spectrum disorder. Distressed and restricted in their quality of life? European Health Psychologist, 18(S), 792.
- Kuhlthau, K., Payakachat, N., Delahaye, J., Hurson, J., Pyne, J. M., Kovacs, E. et Tilford, J. M. (2014). Quality of life for parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 8(10), 1339-1350.
- Levy, S. E., Giarelli, E., Lee, L.-C., Schieve, L. A., Kirby, R. S., Cunniff, C., … Rice, C. E. (2010). Autism spectrum disorder and co-occurring developmental, psychiatric, and medical conditions among children in multiple populations of the United States. Journal of Developmental et Behavioral Pediatrics, 31(4), 267-275.
- Lord, C., Rutter, M., Goode, S., Heemsbergen, J., Jordan, H., Mawhood, L. et Schopler, E. (1989). Austism diagnostic observation schedule: A standardized observation of communicative and social behavior. Journal of Autism and Developmental Disorders, 19(2), 185-212.
- Lord, C., Rutter, M. et Le Couteur, A. (1994). Autism diagnostic interview-revised: A revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. Journal of Autism and Developmental Disorders, 24(5), 659-685.
- Marks, M., Mason, J. et Oliveira, G. (2016). People near transit: Improving accessibility and rapid transit coverage in large cities. Repéré à https://www.itdp.org/wp-content/uploads/2016/10/People-Near-Transit.pdf
- Mannion, A. et Leader, G. (2013). Comorbidity in autism spectrum disorder: A literature review. Research in Autism Spectrum Disorders, 7(12), 1595-1616.
- Mugno, D., Ruta, L., D'Arrigo, V. G. et Mazzone, L. (2007). Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health and Quality of Life Outcomes, 5(22), 1-9. doi: 10.1186/1477-7525-5-22
- Park, J., Hoffman, L., Marquis, J., Turnbull, A. P., Poston, D., Mannan, H., … Nelson, L. L. (2003). Toward assessing family outcomes of service delivery: Validation of a family quality of life survey. Journal of Intellectual Disability Research, 47(4-5), 367-384.
- Poston, D., Turnbull, A., Park, J., Mannan, H., Marquis, J. et Wang, M. (2003). Family quality of life: A qualitative inquiry. Mental Retardation, 41(5), 313-328.
- Perry, A. et Isaacs, B. (2015). Validity of the family quality of life survey-2006. Journal of Applied Research in Intellectual Disabilities, 28(6), 584-588.
- Rillotta, F., Kirby, N. et Shearer, J. (2010). A comparison of two family quality of life measures: An Australian study. Dans R. Kober (dir.), Enhancing the quality of life of people with intellectual disabilities: From theory to practice (p. 305-348). Dordrecht, Pays-bas: Springer.
- Rivard, M., Mercier, C., Mestari, Z., Terroux, A., Mello, C. et Bégin, J. (2017). Psychometric properties of the Beach center family quality of life in french-speaking families with a preschool-aged child diagnosed with autism spectrum disorder. American Journal on Intellectual and Developmental Disabilities, 122(5), 439-452.
- Salazar, F., Baird, G., Chandler, S., Tseng, E., O’sullivan, T., Howlin, P., … Simonoff, E. (2015). Co-occurring psychiatric disorders in preschool and elementary school-aged children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(8), 2283-2294.
- Sales, E. (2003). Family burden and quality of life. Quality of Life Research, 12(1), 33-41.
- Samuel, P. S., Rillotta, F. et Brown, I. (2012). The development of family quality of life concepts and measures. Journal of Intellectual Disability Research, 56(1), 1-16.
- Sankey, C., Derguy, C., Clément, C., Ilg, J. et Cappe, É. (2019). Supporting parents of a child with autism spectrum disorder: The French awakening. Journal of Autism and Developmental Disorders, 49(3), 1142-1153.
- Sikora, D., Moran, E., Orlich, F., Hall, T. A., Kovacs, E. A., Delahaye, J., … Kuhlthau, K. (2013). The relationship between family functioning and behavior problems in children with autism spectrum disorders. Research in Autism Spectrum Disorders, 7(2), 307-315.
- Smith-Bird, E. et Turnbull, A. P. (2005). Linking positive behavior support to family quality-of-life outcomes. Journal of Positive Behavior Interventions, 7(3), 174-180.
- Summers, J. A., Poston, D. J., Turnbull, A. P., Marquis, J., Hoffman, L., Mannan, H. et Wang, M. (2005). Conceptualizing and measuring family quality of life. Journal of Intellectual Disability Research, 49(10), 777-783.
- Vallerand, R. J. (1989). Vers une méthodologie de validation trans-culturelle de questionnaires psychologiques : implications pour la recherche en langue française. Canadian Psychology, 30(4), 662.
- Vasilopoulou, E., et Nisbet, J. (2016). The quality of life of parents of children with autism spectrum disorder: A systematic review. Research in Autism Spectrum Disorders, 23, 36-49.
- Yorke, I., White, P., Weston, A., Rafla, M., Charman, T. et Simonoff, E. (2018). The association between emotional and behavioral problems in children with autism spectrum disorder and psychological distress in their parents: A systematic review and meta-analysis. Journal of Autism and Developmental Disorders, 48(10), 3393-3415.
- Zuna, N. I., Selig, J. P., Summers, J. A. et Turnbull, A. P. (2009). Confirmatory factor analysis of a family quality of life scale for families of kindergarten children without disabilities. Journal of Early Intervention, 31(2), 111-125.
- Zuna, N. I., Summers, J. A., Turnbull, A. P., Hu, X. et Xu, S. (2010). Theorizing about family quality of life. Dans R. Kober (dir.), Enhancing the quality of life of people with intellectual disabilities: From theory to practice (p. 241-278). Dordrecht, Pays-bas: Springer.