Background
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.
Methods
The 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.
Results
On 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.
Conclusion
The 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.
During the diagnostic evaluation period for autism or intellectual disability (ID), families of young children are at risk for poor adjustment. The present study aimed to document in a large sample of families the impact of a family-centered diagnostic evaluation clinic on family quality of life (FQOL) and risk and protective factors for FQOL during the critical step of families' care and service trajectory in which diagnostic evaluation takes place. FQOL was related to the type of services received (i.e., rated higher in the pilot clinic vs. than within the public system), children's challenging behavior, parenting stress, and several aspects of family composition and status. These findings highlight a need for mental health support for parents, coaching interventions for challenging behaviors, and family-centered supports.
Background: A large body of evidence suggest that parents of young children with autism spectrum disorder or intellectual disability experience low levels of satisfaction with the diagnostic evaluation process. This study sought to document parents' satisfaction with the services of a pilot clinic implemented in Québec, Canada.Method: Two-hundred fifty-nine (259) parents were recruited following their child's diagnosis. A mixed methods approach was used to investigate parents' satisfaction globally and with specific aspects of the assessment process.Results: Parents expressed overall high satisfaction with the assessment process.Parental satisfaction with specific aspects of the assessment process was negatively related to paternal stress, fathers' unemployment and household income and positively related to maternal stress.Conclusions: This pilot clinic could meet parents' needs at this crucial moment in their care and services trajectory. The factors associated with satisfaction in the present study may inform future improvements to its services.
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