Service Delivery
Barriers and facilitators to accessibility, continuity, validity, flexibility, and provider-family relationship along the diagnostic pathway in developmental disabilities.
★ The Verdict
Parents judge your service on five ETAP touch-points—check each one before the next family walks in.
✓ Read this if BCBAs who run or refer families to diagnostic clinics.
✗ Skip if RBTs who only deliver one-to-one therapy and never touch intake.
01Research in Context
01
What this study did
You can audit your own intake packet against the five ETAP parts in one lunch break. Add a parent-friendly flow chart, a phone number that answers, and a way to pause and restart. These small fixes turn the whole journey from maze to path.
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Print the ETAP list and flag every form, phone tree, or policy that fails the flexibility or relationship test—then fix one this week.
02At a glance
Intervention
not applicable
Design
qualitative
Sample size
77
Population
autism spectrum disorder, intellectual disability, developmental delay
Finding
not reported
03Original abstract
BACKGROUND: Parents of children with developmental disabilities must navigate a complex network to obtain a diagnosis and interventions for their child. However, their subjective experience of this journey has yet to be analyzed through the lens of a theorical framework that could support research, organizational program evaluation, and facilitate providers' reflection on how to enhance families' diagnostic services trajectory. AIMS: This study sought to examine the diagnostic journey as experienced by 77 parents whose children were recently diagnosed with developmental disabilities (e.g., autism, intellectual disability) in the metropolitan area of Montréal, Québec (Canada). METHODS AND PROCEDURES: A mixed qualitative content analysis approach was used to describe their perspective on barriers and facilitators in reference to the five dimensions of the Evaluation of the Trajectory Autism for Parents (ETAP) model (Rivard et al., 2020): accessibility, continuity, validity, flexibility, and provider-family relationship. OUTCOMES AND RESULTS: The barriers and facilitators related to systemic factors identified by parents were consistent with the five dimensions outlined by the ETAP model. However, beyond these characteristics of the service delivery system, parents additionally identified their own, personal facilitators CONCLUSIONS AND IMPLICATIONS: This study supports the relevance of the ETAP framework to understanding the experience of families seeking a diagnosis. It also reinforces the potential contributions of this model to organize extant and future research as well as structure program evaluation and improvements.
Research in developmental disabilities, 2023 · doi:10.1016/j.ridd.2023.104570