No abstract

This study examined how the parents of young children with autism spectrum disorders perceive the quality determinants of services provided to them in the context of a public network of services. The perceptions of 176 families who were receiving, or had received, specialized services for at least 12 months and were living in urban, suburban, and rural areas were investigated on three fronts: the relative importance of four determinants of quality, their degree of realization, and parents' satisfaction relative to these determinants. These determinants were the accessibility, continuity and flexibility of services, as well as the validity of information provided. Parents felt that the accessibility, continuity and flexibility of services were the most important determinants of quality. However, continuity and accessibility were also perceived as being the least realized. Parents were more satisfied with the validity of information and the flexibility of services than with their continuity and accessibility. These response patterns were observed consistently among parents from urban, suburban, and rural areas, with the exception that rural residents were less satisfied with the continuity of services. Such results emphasize the importance of examining perceived quality from a dynamic perspective. Indeed, the complex relationships that may exist between different aspects of quality, parents' expectations and concerns, along with the actual service delivery conditions, must be taken into account. Our findings also provide an incentive to pursue the development and implementation of evidence-based innovative practices to enhance the integration of services.

L’intervention comportementale intensive (ICI) est implantée depuis 2003 dans les services publics québécois destinés aux enfants de 2 à 5 ans ayant un trouble du spectre de l’autisme. Ce choix a été fait sur la base de l’avis d’experts et des données probantes à l’effet que l’ICI représente l’intervention la plus efficace pour les jeunes enfants ayant ce type de trouble. Bien que les effets de l’ICI soient largement documentés, la perception des familles quant aux services d’ICI reçus demeure peu étudiée. À partir d’entretiens effectués auprès de 52 familles, le point de vue des parents concernant les services d’ICI a été abordé selon trois dimensions : l’appréciation générale, les effets perçus sur l’enfant et la famille ainsi que le niveau de satisfaction. Les données ont été recueillies à partir de questions ouvertes, d’un questionnaire structuré et de l’Échelle de satisfaction des services (CSQ-8). Les parents participants rapportent que l’équipe d’intervention, les modalités d’intervention ainsi que le contenu de l’intervention des services ICI sont les principaux points forts des services évalués. Des améliorations pourraient néanmoins être apportées à certaines modalités de dispensation des services, ainsi qu’à l’accessibilité, aux mouvements de personnel et à l’implication des parents. Tous les parents, sauf un, rapportent des effets positifs chez l’enfant, notamment sur les plans de la communication, du fonctionnement cognitif et des aspects sociaux. Les services ont aussi des effets sur le bien-être des parents, leurs habiletés parentales et la vie quotidienne familiale. Plus de 95 % des répondants se sont déclarés satisfaits ou très satisfaits des modalités du programme ICI. Le niveau général de satisfaction est également très élevé.In Québec, public early intensive behavioral intervention (EIBI) services have been made available to all children aged between 2 and 5 years with an autism spectrum disorder since 2003. This decision was based on expert opinion and empirical evidence indicating that EIBI is the most effective form of intervention for young children with this type of disorder. While the effects of EIBI have been well documented, comparatively little is known about families’ perception of these services. In the present study, 52 families were interviewed about their perspectives on the EIBI services they received. They were asked about their general assessment of the EIBI program, their perception of its effect on their child and family, and their satisfaction level. Data on these three dimensions were collected through open-ended questions, a structured interview schedule, and the Client Satisfaction Questionnaire (CSQ-8). Parents regarded intervention content, implementation parameters, and staff as strengths of EIBI services. However, they also noted specific aspects of program’s content and implementation that could be improved along with the accessibility of the service, the stability of intervention providers, and parental involvement. All but one parent reported the program’s positiv...