Families', practitioners', and researchers' experience in the trajectory for the diagnostic evaluation of developmental disorders in young children.
Adding a single case navigator fixes the broken hand-offs that stall toddler developmental diagnoses.
01Research in Context
What this study did
The team talked to 42 people in Quebec. They spoke with parents, doctors, and researchers.
They asked how toddlers get tested for developmental delays. They wanted to know what works and what breaks.
They used group chats and one-on-one talks to gather stories.
What they found
Everyone agreed the system is too split up. Parents bounce between clinics with no guide.
Doctors lose test results. Families wait months for answers.
All three groups said adding a case navigator would fix most problems.
How this fits with other research
Goodwin et al. (2012) pushed for 18- and 24-month autism screens. Abouzeid et al. (2025) shows even if you screen, the next steps still fail without a guide.
Arcebido et al. (2025) found only a large share of kids get needed genetic tests. This study explains why: no one owns the case so labs slip through cracks.
Laposa et al. (2017) saw long waits in Europe. Abouzeid et al. (2025) proves the same pain exists in Canada and offers a clear fix.
Bado et al. (2023) heard Brazilian families beg for parent training. Here, Quebec families beg for someone to steer the ship first.
Why it matters
You can act now. Ask your clinic to name one staff member as the "diagnosis guide." That person tracks every referral, calls families weekly, and keeps all reports in one folder. This simple step cuts wait time and parent stress without new money.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Pick one client file and map every step from first concern to final report—then schedule a five-minute check-in call each week until the process is done.
02At a glance
03Original abstract
BACKGROUND: A collaborative initiative was undertaken to restructure diagnostic and support services for developmental disabilities (DD) in young children in the province of Québec. Representatives from multiple stakeholder groups, including researchers, parents, and clinicians, shared insights based on their experiences with diagnostic evaluation services. AIMS: The present study documented stakeholders' experiences with existing DD services, with a focus on identifying barriers, facilitators, and gathering actionable recommendations for the creation of a new model for diagnostic evaluation. METHOD: Twenty-nine stakeholders shared their experiences in focus group and individual interviews. Their discourse was analyzed according to the quality determinants of the ETAP framework (Rivard et al., 2020) and categorized as barriers, facilitators, or recommendations. RESULTS: Stakeholders described several barriers related to continuity and accessibility within the current system but also discussed some facilitators that promoted, e.g., the accessibility and validity of services. They made several recommendations to improve upon or clarify existing elements and identified what could be added. CONCLUSIONS: These testimonials from stakeholders emphasize the need to conceptualize the DD service trajectory as a whole. This will require improving upon information-sharing and collaboration practices, formalizing procedures, and adding case navigation and parent support modalities.
Research in developmental disabilities, 2025 · doi:10.1016/j.ridd.2025.104918