Abstract
BackgroundThis paper aimed to describe the diagnostic service trajectory of families of children with autism or intellectual disability in the province of Québec and identify predictors of parents’ perceptions of its quality.MethodsThe Evaluation of the services Trajectory in Autism by Parents instrument was completed by 259 parents at an assessment clinic. Children’s clinical records were also examined.ResultsOn average 26 months elapsed between their first concerns and their child’s diagnosis, a period during which few (25%) received support. Parents’ evaluations were generally positive but were lower for the accessibility of the pre-assessment phase and the flexibility of the assessment process. Longer delays and a greater number of professionals consulted were associated with lower quality ratings. Some language-, immigration status-, and income-related differences in families’ appraisals were noted.ConclusionThe diagnostic trajectory for neurodevelopmental disorders within public services in Québec presents some efficiency and accessibility challenges. Possible improvements are proposed to facilitate screening and to support families throughout this phase of their trajectory.
Highlights
This paper aimed to describe the diagnostic service trajectory of families of children with autism or intellectual disability in the province of Québec and identify predictors of parents’ perceptions of its quality
For parents of children with a neurodevelopmental disorders [1] such as autism spectrum disorder (ASD) and intellectual disability (ID) and global developmental delay (GDD), obtaining a diagnosis for their child is a critical but challenging process: they must quickly develop an expertise in the relevant healthcare and social services systems and advocate for themselves to obtain answers to their concerns and, the support and services their child needs [2]
The specific goals of this project were to 1) document the steps parents took, their experiences, and the services they received; 2) assess their perceptions of specific quality determinants according to the ETAP model; and 3) identify systemic, family, and child-related factors associated with parents’ appraisal of the quality of each phase of their diagnostic trajectory
Summary
This paper aimed to describe the diagnostic service trajectory of families of children with autism or intellectual disability in the province of Québec and identify predictors of parents’ perceptions of its quality. For parents of children with a neurodevelopmental disorders (see DSM-5) [1] such as autism spectrum disorder (ASD) and intellectual disability (ID) and global developmental delay (GDD), obtaining a diagnosis for their child is a critical but challenging process: they must quickly develop an expertise in the relevant healthcare and social services systems and advocate for themselves to obtain answers to their concerns and, the support and services their child needs [2]. Barriers to accessing a neurodevelopmental disorder diagnosis Systemic barriers to accessing diagnostic services have been widely documented, with respect to ASD and in the United States These barriers contribute to the economic and psychosocial difficulties experienced by families of children with neurodevelopmental disorders [2,3,4]. Families may face sizeable delays in obtaining a referral to evaluation services, a lack of continuity between providers, intricate administrative requirements to gain access to assessment, inconsistent or incomplete information about the diagnostic process or the diagnostic itself and the following adequate services, and the need to coordinate care across multiple providers and organizations [3,4,5,6,7,8]
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