ror.org/02jvrpv13
Abstracts
Résumé
Le rationnel et la nécessité d’impliquer la famille dans les interventions menées auprès de l’enfant présentant un trouble du spectre de l’autisme (TSA) ont été articulés de bien des façons dans les écrits (Azeem, Imran et Khawaja, 2016). L’importance d’outiller les intervenants à considérer la famille dans la mise en place des services s’avère un choix judicieux. Cet article présente les résultats d’une étude pilote menée auprès de neuf intervenants et de sept parents afin de documenter leur perception face à l’utilisation de l’Outil de collecte d’informations relatives à la famille (OCIRF). Pour ce faire, un devis mixte, incluant des évaluations qualitatives et quantitatives provenant de diverses sources, a été utilisé. Les résultats démontrent notamment que les parents sont globalement significativement plus satisfaits de l’utilisation de l’outil que ne le sont les intervenants.
Mots-clés :
- outil,
- intervenants,
- famille,
- TSA,
- jeunes,
- parents
Abstract
The rationale and the necessity to involve family in interventions with children with autism spectrum disorder (ASD) have been well documented in the literature (Azeem, Imran, & Khawaja, 2016). The importance of equipping interveners to consider the family in service implementation is a wise choice. This article presents the results of a pilot study conducted with nine interveners and seven parents in order to document their perceptions of the use of the Outil de collecte d’informations relatives à la famille (OCIRF). A mixed method, including qualitative and quantitative assessments from diverse sources, was used. The results demonstrate notably that the parents are overall significantly more satisfied with the use of the tool than the interveners.
Keywords:
- Tool,
- Interveners,
- Family,
- ASD,
- Young,
- Parents
Appendices
Bibliographie
- Abouzeid, N. et Poirier, N. (2014). Perceptions de mères d’enfant présentant un trouble du spectre de l’autisme ayant reçu une intervention comportementale intensive : leurs ressources et leurs défis. Revue de psychoéducation, 43(2), 201-233.
- Altiere, M. J. et von Kluge, S. (2009). Searching for acceptance: Challenges encountered while raising a child with autism. Journal of Intellectual and Developmental Disability, 34(2), 142-152.
- Andréani, J.-C. et Conchon, F. (2005). Fiabilité et validité des enquêtes qualitatives. Un état de l’art en marketing. Revue française du marketing, 201, 5-21.
- Azeem, M. W., Imran, N. et Khawaja, I. S. (2016). Autism spectrum disorder: An update. Psychiatric Annals, 46(1), 58-62.
- Bardin, L. (2003), L’analyse de contenu. Paris, France: Presses universitaires de France.
- Beaudoin, A. J. (2018). Les parents et leur enfant à risque de trouble du spectre de l’autisme bénéficient d’un programme d’accompagnement parental (Thèse de doctorat inédite). Université de Sherbrooke, QC.
- Benson, P. R. (2006). The impact of child symptom severity on depressed mood among parents of children with ASD: The mediating role of stress proliferation. JournalAutism Developmental Disorder, 36(5), 685-695.
- Breitenstein, S. M., Gross, D., Garvey, C. A., Hill, C., Fogg, L. et Resnick, B. (2010). Implementation fidelity in community-based interventions. Research in Nursing & Health, 33, 164-173.
- Brookman-Frazee, L. (2004). Using parent/clinician partnerships in parent education programs for children with autism. Journal of Positive Behavior Interventions, 6(4), 195-213.
- Brookman-Frazee, L., Stahmer, A., Baker-Ericzen, M. J. et Tsai, K. (2006). Parenting interventions for children with autism spectrum and disruptive behavior disorders: Opportunities for cross-fertilization. Clinical Child and Family Psychology Review, 9(3-4), 181-200.
- Burrell, T. L. et Borrego, J. J. (2012). Parents’ involvement in ASD treatment: What is their role? Cognitive and Behavioral Practice, 19(3), 423-432.
- Callahan, K., Henson, R. K. et Cowan, A. K. (2008). Social validation of evidence-based practices in autism by parents, teachers, and administrators. Journal Autism Developmental Disorders, 38(4), 678-692.
- Campbell, M. et Kozloff, M. (2007) Comprehensive programs for families of children with autism. Dans J. M. Briesmeister et E. Charles (dir.), Helping parents prevent and solve problem behaviors (3e éd., p. 67-106). Hoboken, NJ: John Wiley & Sons.
- Cappe, É., Chatenoud, C. et Paquet. (2014). Les caractéristiques des personnes ayant un TSA et des autres membres de la famille influençant l’adaptabilité familiale. Dans C. Chatenoud, J.-C., Kalubi et A. Paquet (dir.), La famille et la personne ayant un trouble du spectre de l’autisme, comprendre, soutenir et agir autrement (p. 93-110). Montréal, QC: Éditons Nouvelles AMS.
- Cappe, É., Poirier, N., Sankey, C., Belzil, A. et Dionne, C. (2017). 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, E., 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. doi:10.107/s11136-011-9861-3
- Carroll, C., Patterson, M., Wood, S., Booth, A., Rick, J. et Balain, S. (2007). A conceptual framework for implementation fidelity. Implementation Science, 2(1), 1-9.
- Casenhiser, D. M., Shanker, S. G. et Stieben, J. (2011). Learning through interaction in children with autism: Preliminary data from a social-communication-based intervention. Autism, 17(2), 220-241.
- Chiri, G. et Warfield, M. E. (2012). Unmet need and problems accessing core health care services for children with autism spectrum disorder. Maternal and Child Health Journal, 16(5), 1081-1091.
- Christie, P., Duncan, M., Fidler, R. et Healy, Z. (2012). Understanding pathological demand avoidance syndrome in children. Londres, Royaume-Uni: Jessica Kingsley.
- Cohen, S. R., Holloway, S. D., Domínguez-Pareto, I. et Kuppermann, M. (2014). Receiving or believing in family support? Contributors to the life quality of Latino and non-Latino families of children with intellectual disability. Journal Intellectual Disabilities Ressources, 58(4), 333-345.
- Coogle, C. G., Guerette, A. R. et Hanline, M. F. (2013). Early intervention experiences of families of children with an autism spectrum disorder: A qualitative pilot study. Early Childhood Research & Practice, 15(1). Repéré à http://ecrp.uiuc.edu/v15n1/coogle.html
- Courcy I. et des Rivières-Pigeon, C. (2014). L'emploi, le travail et l'« ouvrage ». Dans C. des Rivières-Pigeon et I. Courcy (dir.), Autisme et TSA : quelles réalités pour les parents au Québec ? (p. 47-66). Québec, QC: Presses de l'Université du Québec.
- Dabrowska, A. (2008). Sense of coherence in parents of children with cerebral palsy. Psychiatria Polska, 41(2), 189-201.
- Dabrowska, A. et Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of pre-school children with autism and down syndrome. Journal of Intellectual Disability Research, 54(3), 266-280.
- Dane, A. V. et Schneider, B. H. (1998). Program integrity in primary and early secondary prevention: Are implementation effects out of control? Clinical Psychology Review, 18, 23-45. doi:10.1016/S0272-7358(97)00043-3
- Derguy, C., Poumeyreau, M., Pingault, S. et M’bailara, K. (2017). Un programme d’éducation thérapeutique destiné à des parents d’enfant avec un TSA : résultats préliminaires concernant l’efficacité du programme ETAP. Encéphale, 44(5), 421-428.
- des Rivières-Pigeon, C., Courcy, I., Boucher, C., Laroche, G., Poirier, N. et Galerand, E. (2015). Le travail domestique et de soin réalisé par les mères et les pères d’enfants présentant un trouble du spectre de l’autisme (TSA) au Québec. Drummondville, QC: Office des personnes handicapées du Québec.
- des Rivières-Pigeon, C., Courcy, I. et Dunn, M. (2014). Les parents d’enfants ayant un TSA au Québec, portrait de la situation. Dans C. des Rivières-Pigeon et I. Courcy (dir.), Autisme et TSA : quelles réalités pour les parents au Québec ? (p. 9-32). Québec, QC: Presses de l’Université du Québec.
- Division for early childhood. (2015). DEC recommended practices: Enhancing services for young children with disabilities and their families. Los Angeles, CA: Auteur.
- Dunlap, G., Newton, J. S., Fox, L., Benito, N. et Vaughn, B. (2001). Family involvement in functional assessment and positive. Behavior support. Focus on Autism and Other Developmental Disabilities, 16(4), 215-221.
- Dunst, C. J., Trivette, C. M. et Hamby, D. W. (2007). Meta-analysis of family-centered helpgiving practices research. Families of Children with Developmental Disabilities, 13(4), 370-378.
- Eisenstadt, T. H., Eyberg, S. M., McNeil, C. B., Newcomb, K. et Funderburk, B. (1993). Parent-child interaction therapy with behavior problem children: Relative effectiveness of two stages and overall treatment outcome. Journal of Clinical Child Psychology, 22(1), 42-51.
- 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), 1-69.
- Eyberg, S. (1993). Consumer satisfaction measures for assessing parent training programs. Dans L. VandeCreek, S. Knapp et T. L. Jackson (dir.), Innovations in clinical practice: A source book (p. 377-382). Sarasota, FL: Professional Resource Press.
- Foster, L., Dunn, W. et Lawson, L. M. (2013). Coaching mothers of children with autism: A qualitative study for occupational therapy practice. Physical & Occupational Therapy in Pediatrics, 33(2), 253-263.
- Gardiner, E. et Larocci, G. (2015). Students with autism spectrum disorder in the university context: Peer acceptance predicts intention to volunteer. Journal of Autism and Developmental Disorders, 44(5), 1008-1017.
- Gau, S. F., Chou, M. C., Chiang, H. L., Lee, J. C., Wong, C. C, Chou, W. J. et We, Y. Y. (2012). Parental adjustment, marital relationship, and family function in families of children with autism. Research in Autism Spectrum Disorders, 6(1), 263-270.
- Gendreau, P., Goggin, C. et Smith, P. (2001). Implementary guidelines for correctional programs in the “real world.” Dans C. R. Hollin, M. McMurran, G. A. Bernfeld, D. P. Farrington et A. W. Leschied (dir.), Offender rehabilitation in practice: Implementing and evaluating effective programs (p. 247-268). Chichester, NY: Wiley.
- Goldstein, S. et Naglieri, J. A. (2011). Neurocognitive and behavioral characteristics of children with ADHD and autism: New data and new strategies. The ADHD Report, 19(4), 10-12.
- Gottfredson, G. D. (2000, Août). School climate, population characteristics, and program quality. Communication présentée à l’Annual Meeting of American Psychological Association. Washington, DC.
- Hayes, S. A. et Watson S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629-642.
- Hoefman, R., Payakachat, N., van Exel, J., Kuhlthau, K., Kovacs, E., Pyne, J. et Tilford, J. M. (2014). Caring for a child with autism spectrum disorder and parents’ quality of life: Application of the CarerQol. Journal Autism Developmental Disorders, 44(8), 1933-1945.
- Ilg, J., Paquet, A., Wolgensinger, L., Dutray, B., Rivard, M., Rousseau, M., … Clément, C. (2014). Programme francophone de formation pour les parents d’enfants avec un TSA : fondements et contenus. Revue francophone de clinique comportementale et cognitive, 19(3), 5-20.
- Ingber, S., Al-Yagon, M. et Dromi, E. (2010). Mothers’ involvement in early intervention for children with hearing loss. The role of maternal characteristics and context-based perceptions. Journal of Early Intervention, 32(5), 351-369.
- Kam, C. M., Greenberg, M. T. et Walls, C. T. (2003). Examining the role of implementation quality in school-based prevention using the paths curriculum. Prevention Science, 4(1), 55-63.
- Karst, J. S. et Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical Child & Family Psychology Review, 15(3), 247-277.
- Kasari, C. (2002). Assessing change in early intervention programs for children with autism. Journal of Autism and Developmental Disorders, 32, 447-461. doi:10.1023/ A:1020546006971
- Kelley, M. L., Heffer, R. W., Gresham, F. M. et Elliott, S. N. (1989). Development of a modified treatment evaluation inventory. Journal of Psychopathology and Behavioral Assessment, 11(3), 235-247.
- Kelly, A. B., Garnett, M. S., Attwood, T. et Peterson, C. (2008). Autism spectrum symptomatology in children: The impact of family and peer relationships. Journal of Abnormal Child Psychology, 36(7), 1069-1081.
- Khanna, R., Madhavan, S. S., Smith, M. J., Patrick, J. H., Tworek, C. et Becker-Cottrill, B. (2011). Assessment of health-related quality of life among primary caregivers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 41(9), 1214-1227.
- 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. doi:10.1016/j. rasd.2014.07.002
- Lacharité, C. (2009). L'approche participative auprès des familles. Dans C. Lacharité et J.-P. Gagnier (dir), Comprendre les familles pour mieux intervenir : repères conceptuels et stratégies d'action (p. 157-182). Montréal QC: Gaëtan Morin éditeur.
- Lafantaisie, V. (2017). Recherche et interventions en négligence : comment expliquer l’exclusion du point de vue des familles dans ces espaces institutionnels ? (Thèse de doctorat inédite). Université du Québec à Trois-Rivières, Trois-Rivières, QC.
- Lichstein, K. L., Riedel, B. W. et Grieve, R. (1994). Fair tests of clinical trials: A treatment implementation model. Advances in Behaviour Research and Therapy, 16, 1-29.
- Lu, S., Jacques, N., Richer, M.-C., Bourassa, J. et Ouellette, R. (2018a). Outil de collecte d’informations relatives à la famille – Guide explicatif. Trois-Rivières, QC: Collections de l’Institut universitaire en déficience intellectuelle et en trouble du spectre de l’autisme.
- Lu, S., Jacques, N., Richer, M.-C., Bourassa, J. et Ouellette, R. (2018b). Outil de collecte d’informations relatives à la famille. Trois-Rivières, QC: Collections de l’Institut universitaire en déficience intellectuelle et en trouble du spectre de l’autisme.
- Lucyshyn, J. M., Fossett, B., Bakeman, R., Cheremshynski, C., Miller, L., Lohrmann, S., … Irvin, L. K. (2015). Transforming parent-child interaction in family routines: Longitudinal analysis with families of children with developmental disabilities. Journal of Child and Family Studies, 24(12), 3526-3541.
- Ludlow, A., Skelly, C. et Rohleder. P. (2012). Challenges faced by parents of children diagnosed with autism spectrum disorder. Journal of Health Psychology, 17(5), 702-711. .
- Machado Junior, S. B., Celestino, M. I., Serra, J. P., Caron, J. et Pondé, M. P. (2016). Risk and protective factors for symptoms of anxiety and depression in parents of children with autism spectrum disorder. Developmental Neurorehabilitation, 19(3), 146-153.
- Mareoiu, M., Bland, C., Dobbins, N. et Niemeyer, J. A. (2015). Exploring perspectives on child care with families of children with autism. Early Childhood Research & Practice, 17(1), 1-13.
- Martire, L. M. et Schulz, R. (2007). Involving family in psychosocial interventions for chronic illness. Current Direction Psychological Science, 16(2), 90-94.
- McStay, R. L., Dissanayake, C., Scheeren, A., Koot, H. M. et Begeer, S. (2014). Parenting stress and autism: The role of age, autism severity, quality of life and problem behaviour of children and adolescents with autism. Autism, 18(5), 502-510.
- Meirsschaut, M., Roeyers, H. et Warreyn, P. (2010). Parenting in families with a child with autism spectrum disorder and a typically developing child: Mother’s experiences and cognitions. Research in Autism Spectrum Disorders, 4(4), 661-669.
- National research council. (2001). Educating children with autism: committee on educational interventions for children with autism, division of behavioral and social sciences and education. Washington, DC: National Academy Press.
- Oelofsen, N. et Richardson, P. (2006). Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability. Journal of Intellectual and Developmental Disabilities, 31(1), 1-12.
- Øien, R. et Eisemann, M. R. (2016). Brief report: Parent-reported problems related to communication, behavior and interests in children with autistic disorder and their impact on quality of life. Journal of Autism and Developmental Disorders, 46(1), 328-331.
- Ooi, K. L., Ong, Y. S., Jacob, S. A. et Khan, T. M. (2016). A meta-synthesis on parenting a child with autism. Neuropsychiatric Disease and Treatment, 12, 745-762. . S100634.
- Paquet, A., Chatenoud, C. et Cappe, É. (2014). Les fonctions familiales. Dans C. Chatenoud, J.-C. Kalubi et A. Paquet (dir.), La famille et la personne ayant un trouble du spectre de l’autisme, comprendre, soutenir et agir autrement (p. 93-110). Montréal, QC: Éditions Nouvelles AMS.
- Paquet, A., McKinnon, S., Clément, C. et Rousseau, M. (2018). Traduction et adaptation du TEI-SF afin de documenter l’acceptabilité sociale de l’intervention comportementale intensive. Pratiques psychologiques, 24(1), 99-113.
- Perepletchikova, F. et Kazdin, A. E. (2005). Treatment integrity and therapeutic change: Issues and research recommendations. Clinical Psychology: Science and Practice, 12, 365-383.
- Poirier, N. et des Rivières-Pigeon, C. (2013). Le trouble du spectre de l’autisme : états des connaissances. Québec, QC: Presses de l’Université du Québec.
- Rousseau, M., Bourassa, J. et McKinnon, S. (2018a). Questionnaire sur l’autoévaluation de la perception des intervenants concernant l’utilisation de l’outil. Document inédit. Centre intégré universitaire de santé et de services sociaux de la Mauricie et du Centre-du-Québec. Trois-Rivières, QC.
- Rousseau, M., Bourassa, J. et McKinnon, S. (2018b). Questionnaire sur l’autoévaluation de la perception des parents concernant l’utilisation de l’outil. Document inédit. Centre intégré universitaire de santé et de services sociaux de la Mauricie et du Centre-du-Québec. Trois-Rivières, QC.
- Saini, M., Stoddart, K. P., Gibson, M., Morris, R., Barrett, D., Muskat, B., … Zwaigenbaumg, L. (2015). Couple relationships among parents of children and adolescents with autism spectrum disorder: Findings from a scoping review of the literature. Research in Autism Spectrum Disorders, 17, 142-157. doi:10.1016/j. rasd.2015.06.014
- Scahill, L., Bearss, K., Lecavalier, L., Smith, T., Swiezy, N., Aman, M. G., … Johnson, C. (2016). Effect of parent training on adaptive behavior in children with autism spectrum disorder and disruptive behavior: Results of a randomized trial. Journal of the American Academy of Child & Adolescent Psychiatry, 55(7), 602-609.
- Schaeffer, E. et Clément, C. (2010). Évaluation de la validité sociale des interventions menées auprès des enfants et adolescents présentant un trouble envahissant du développement. Revue de psychoéducation,39(2), 209-220.
- Schulte, A. C., Easton, J. E. et Parker, J. (2009). Advances in treatment integrity research: Multidisciplinary perspectives on the conceptualization, measurement, and enhancement of treatment integrity. School Psychology Review, 38, 460-475.
- Schwartz, I. S. et Baer, D. M. (1991). Social validity assessments: Is current practice state of the art ? Journal of Applied Behavior Analysis, 24(2), 189-204.
- Sears, K. M., Blair, K.-S., Iovannone, R. et Crosland, K. (2013). Using the prevent-teach-reinforce model with families of young children with ASD. Journal of Autism and Developmental Disorders, 43(5), 1005-1016.
- 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 Autism Spectrum Disorders, 7(2), 307-315.
- Solbrekke, T. D. et Englund, T. (2011). Bringing professional responsibility back in. Journal Studies in Higher Education, 36(7), 847-861.
- Tomasello, N. M., Manning, A. R. et Dulmus, C. N. (2010). Family-centered early intervention for infants and toddlers with disabilities. Journal of Family Social Work, 13(2), 163-172.
- Tregnago, M. K. et Cheak-Zamora, N. C. (2012). Systematic review of disparities in health care for individuals with autism spectrum disorders in the United States. Research in Autism Spectrum Disorders, 6(3), 1023-1031.
- Tung, L.-C., Huang, C.-Y., Tseng, M.-H., Yen, H.-C., Tsai, Y.-P., Lin, Y.-C. et Chene, K.-L. (2014). Correlates of health-related quality of life and the perception of its importance in caregivers of children with autism. Research in Autism Spectrum Disorders, 8(9), 1235-1242.
- Turnbull, A. et Aldersey, H. (2014). Présentation générale du modèle des systèmes familiaux : de la conception à l’application. Dans C. Chatenoud, J.-C. Kalubi et A. Paquet (dir.), La famille et la personne ayant un trouble du spectre de l’autisme, comprendre, soutenir et agir autrement (p. 93-110). Montréal, QC: Éditions Nouvelles AMS.
- 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.
- Wainer, A. et Ingersoll, B. (2013). Intervention fidelity: An essential component for understanding ASD parent training research and practice. Clinical Psychology: Science and Practice, 20(3), 352-374.
- Wolf, M. M. (1978). Social validity: The case for subjective measurement or how applied behavior analysis is finding its heart. Journal of Applied Behavior Analysis, 11(2), 203-214.
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