Résumés
Résumé
Cette étude vise à explorer les barrières et les facilitateurs dans l’accès aux services pour les enfants et adolescents autistes, et ce, selon la perspective de parents et celle de personnes prestataires de services. Des entrevues semi-structurées ont été effectuées auprès de huit parents et de huit responsables de services francophones du Nouveau-Brunswick. Une analyse thématique de leur discours a été effectuée afin d’identifier les barrières et les facilitateurs dans l’accès aux services lors de trois moments clés, soit les premières inquiétudes, le diagnostic et l’entrée scolaire. Ces moments représentent des périodes de transition sur le plan des services pour les familles.
Mots-clés :
- Trouble du spectre de l’autisme,
- services en santé mentale,
- enfants et adolescents,
- ACCESS-MH
Abstract
This study aimed to explore the barriers and facilitators in accessing services for children and adolescents with Autism Spectrum Disorder from the perspective of parents and service providers. Semi-structured interviews were conducted with eight Francophone parents and eight Francophone service providers living in New Brunswick. A thematic analysis of participants’ stories was conducted to identify barriers and facilitators in accessing services during three key moments in the family journeys, namely first concerns, diagnosis, and school entry, as these moments reflect periods of transition in services for families.
Keywords:
- Autism Spectrum Disorder,
- mental health services,
- children and adolescents,
- ACCESS-MH
Parties annexes
Bibliographie
- ABOUZEID, Nadia, et Nathalie POIRIER (2014). « Perception des effets de l’intervention comportementale intensive chez des enfants présentant un trouble du spectre de l’autisme », Enfance en difficulté, Vol. 3, p. 107-147.
- AGENCE DE LA SANTÉ PUBLIQUE DU CANADA (2018). « Trouble du spectre de l’autisme chez les enfants et les adolescents et les adolescents au Canada 2018: Un rapport du système national de surveillance du trouble du spectre de l’autisme », réf. du 12 septembre 2019, https://www.canada.ca/fr/sante-publique/services/publications/maladies-et-affections/trouble-spectre-autisme-enfants-adolescents-canada-2018.html
- AMERICAN PSYCHIATRIC ASSOCIATION (2013). Diagnostic and Statistical Manual of Mental Disorders DSM-5 (5e éd.). Arlington, Va, American Psychiatric Publishing,
- BOSHOFF, Kobie, et collab. (2018). « Parents’ voices: «Our process of advocating for our child with autism.» A meta-synthesis of parents’ perspectives », Child: Care, Health and Development, Vol. 55, p. 147-160.
- BROOKMAN-FRAZEE, Lauren, et collab. (2012a). « Parent perspectives on community mental health services for children with autism spectrum disorders », Journal of Child and Family Studies, Vol. 21, p. 533-544.
- BROOKMAN-FRAZEE, Lauren, et collab. (2012b). « Therapist perspectives on community mental health services for children with autism spectrum disorders », Administration and Policy in Mental Health, Vol. 39, p. 365-373.
- BROWN, Hilary K., et collab. (2010). « Assessing need in school-aged children with an autism spectrum disorder », Research in Autism Spectrum Disorders, Vol. 4, p. 539-547.
- CENTERS FOR DISEASE CONTROL AND PREVENTION (2018). « Prevalence of autism spectrum disorder among children aged 8 years – autism and developmental disabilities monitoring network », Morbidity and Mortality Weekly Report, Vol. 67, p. 1-23.
- COURCY, Isabelle, Stéphanie GRANGER, et Catherine des RIVIÈRES-PIGEON (2014). « L’implication parentale en contexte d’intervention comportementale intensive (ICI) au Québec », Revue de psychoéducation, Vol. 43, p. 77-99.
- COUTURE, Mélanie (2003). « La recherche qualitative: introduction à la théorisation ancrée », Chronique méthode, Vol. 7, p. 127-134.
- DES RIVIÈRES-PIGEON, Catherine (dire.) (2019). Autisme : ces réalités sociales dont il faut parler, Montréal, CIUSSS du Centre Sud de l’Île de Montréal, 168 p.
- DES RIVIÈRES-PIGEON, Catherine, et Isabelle COURCY (2014). Autisme et TSA: Quelles réalités pour les parents au Québec?, Québec, Presses de l’Université du Québec, 184 p.
- FAJA, Susan, et Geraldine DAWSON (2013). « Autism spectrum disorders », dans Theodore P. Beauchaine et Stephen P. Hinshaw (dirs.), Child and Adolescent Psychopathology (2e éd.). Hoboken, New Jersey, John Wiley & Sons, Inc., p. 649-684.
- FLETCHER, Peter C., Roula MARKOULAKIS et Pamela J. BRYDEN (2012). « The costs of caring for a child with an autism spectrum disorder », Issues in Comprehensive Pediatric Nursing, Vol. 35, p. 45-69.
- GOIN-KOCHEL, Robin P., Barbara J. MYERS et Virginia H. MACKINTOSH (2007). « Parental reports on the use of treatments and therapies for children with autism spectrum disorders », Research in Autism Spectrum Disorders, Vol. 1, p. 195-209.
- HODGETTS, Sandra, et collab. (2016). « The impact of autism services on mothers’ psychological wellbeing », Child: care, health and development, Vol. 43, p. 18-30.
- HODGETTS, Sandra, et collab. (2013). « Parents’ and professionals’ perceptions of family-centered care for children with autism spectrum disorder across service sectors », Social Science & Medecine, Vol. 96, p. 138-146.
- HOOGSTEEN, Lindsey, et Roberta L. WOODGATE (2013). « Embracing autism in Canadian rural communities », The Australian Journal of Rural Health, Vol. 21, p. 178-182.
- JOHNSON, Norah L., et collab. (2016). « Translating research to practice for children with autism spectrum disorder: Part I: definition, associated behaviors, prevalence, diagnostic process, and interventions », Journal of Pediatric Health Care, Vol. 30, p. 15-26.
- LAI, Jonathan K., et Jonathan A. WEISS (2017). « Priority service needs and receipt across the lifespan For individuals with autism spectrum disorder », Autism Research, Vol. 10, p. 1436-1447.
- LEE MCINTYRE, Laura, et Erin E. BARTON (2010). « Early childhood autism services: How wide is the research to practice divide? », Behavioral Development Bulletin, Vol. 10, p. 34-42.
- LUDLOW, Amanda, Charlotte SKELLY et Poul ROHLEDER (2011). « Challenges faced by parents of children diagnosed with autism spectrum disorder », Journal of Health Psychology, Vol. 17, p. 702-711.
- MACKINTOSH, Virginia H., Robin P. GOIN-KOCHEL et Barbara MYERS (2012). « What do you like/dislike about the treatments you’re currently using? » A qualitative study of parents of children with autism spectrum disorders », Focus on Autism and Other Developmental Disabilities, Vol. 27, p. 51-60.
- MAICH, Kimberly, et Carmen HALL (2016). Autism Spectrum Disorder in the Ontario Context: An introduction, Toronto, Canadian Scholar’s Press, 352 p.
- MINNES, Patricia, et Karin STEINER (2009). « Parent views on enhancing the quality of health care for their children with fragile X syndrome, autism or Down syndrome », Child: Care, Health and Development, Vol. 35, p. 250-256.
- MUSKAT, Barbara, et collab. (2015). « Autism comes to the hospital: The experiences of patients with autism spectrum disorder, their parents and health-care providers at two Canadian paediatric hospitals », Autism, Vol. 19, p. 482-490.
- MYERS, Scott M., et Chris PLAUCHÉ JOHNSON (2007). « Management of children with autism spectrum disorders », American Academy of Pediatrics, Vol. 120, p. 1162-1182.
- PAILLÉ, Pierre (1994). « L’analyse par théorisation ancrée », Cahiers de recherche sociologique, Vol. 23, p. 147-181.
- PIZUR-BARNEKOW, Kris, et collab. (2012). « Service coordinators’ perceptions of autism-specific screening and referral practices in early intervention », Topics in Early Childhood Special Education, Vol. 33, p. 153-161.
- POIRIER, Nathalie, et Jacynthe VALLÉE-OUIMET (2015). « Le parcours des parents et des enfants présentant un TSA », Santé mentale au Québec, Vol. 1, p. 203-226.
- RIVARD, Mélina, et collab. (2015). « Quality determinants of services for parents of young children with autism spectrum disorders. Journal of Child and Family Studies, Vol. 24, p. 2388-2397.
- RUBLE, Lisa A., et John McGREW, J. H. (2007). « Community services outcomes for families and children with autism spectrum disorders », Research in Autism Spectrum Disorders, Vol. 1, p. 360-372.
- SCIUTTO, Mark, et collab. (2012). « A qualitative analysis of the school experiences of students with asperger syndrome », Focus on Autism and Other Developmental Disabilities, Vol. 27, p. 177-188.
- SHEPHERD, Cody A., et Charlotte WADDELL (2015). « A qualitative study of autism policy in Canada: Seeking consensus on children’s services », Journal of Autism and Developmental Disorders, Vol. 45, p. 3550-3564.
- SMITH, Tristram, et Suzannah IADAROLA (2015). « Evidence Base Update for Autism Spectrum Disorder. Journal of Clinical Child & Adolescent Psychology », Vol. 44, No 6, p. 897-922.
- STAHMER, Aubyn C., et collab. (2011). « Parent and multidisciplinary provider perspectives on earliest intervention for children at risk for autism spectrum disorders », Infants & Young Children, Vol. 24, p. 344-363.
- STRUNK, Julie A., et collab. (2014). « Managing the health care needs of adolescents with autism spectrum disorder: The parents experience », Families, Systems & Health, Vol. 32, p. 328-337.
- TILLECZEK, Kate, et collab. (2017). « Youth journeys in mental health: Invoking unique patient perspectives », Canadian Journal of Community Mental Health Special Issue on Responses to the Mental Health Strategy for Canada, Vol. 36, p. 1-14.
- TREGNAGO, Megan K., et Nancy C. CHEAK-ZAMORA, (2012). « Systematic review of disparities in health care for individuals with autism spectrum disorders in the United-States », Research in Autism Spectrum Disorders, Vol. 6, p. 1023-1031.
- TUCKER, Vanessa, et Ilene SCHWARTZ (2013). « Parents’ perspectives of collaboration with school professionals: Barriers and facilitators to successful partnerships in planning for students with ASD », School Mental Health, Vol. 5, p. 3-14.
- VAN TONGERLOO, Michelle A., et collab. (2015). « Raising a child with autism spectrum disorder: ‘If this were a partner relationship, I would have quit ages ago’ », Family Practice, Vol. 32, p. 88-93.
10.7202/1028014ar