Improving Access to Care in Families of Children with Autism Spectrum Disorder: A Mixed Methods Study to Establish the Pediatric Developmental Passport As a Resource Tool for Parents

Background: Receiving a new developmental diagnosis is challenging for families. Following a diagnosis of ASD, developmental pediatricians typically make recommendations for caregivers to access developmental services within their community. This self-referral process poses problems for families’ access and navigation of developmental services. At St.Michael’s Hospital, a large urban hospital focused on inner city health, pediatricians recognized many families were not accessing developmental services in a timely manner. Given the evidence for early intervention in children, there was enormous public pressure to reduce barriers for families’ access to developmental services for their children.

Objectives: To address families’ barriers to accessing and navigating developmental services, the aim of this study was to determine the utility and design of the Pediatric Developmental Passport (Passport) for physicians and families in our community using the Knowledge to Action Framework (KTA). We sought 1) to establish the current practice of recommending developmental services by physicians, 2) to identify gaps in practice and 3) to design a tool embedded within physician and caregiver needs.

 Methods: A sequential exploratory mixed method study design within a KTA framework was used to study the creation and utility of the passport. The quantitative component of the study included a cross-sectional survey with developmental pediatricians and the qualitative component of the study included focus groups with developmental pediatricians and semi-structured interviews with caregivers. Descriptive statistical analysis and comparative thematic analysis was used.

Results: Quantitative: Needs Assessment. Eighty-eight percent of physicians reported to follow-up on their recommendations to families and most physicians (75%) felt their current approach could be improved. Qualitative Component: Need for Tool. Physicians noted a need for a novel tool to communicate developmental recommendations as a result of their perception of families’ poor compliance to developmental recommendations. As such physicians approved the initial design of the passport with recommendations. They suggested the utility of the passport needed to be verified among families, as they would be the primary users of the tool. Supports, Opinions and Reflections of the Passport. Caregivers reported the passport to identify clear goals for child’s care and served as a quick summary of services in one document, highlighting the utility of knowing at a glance their progress in accessing developmental agencies. Caregivers also noted the potential impact of the passport in reducing caregiver stress. One parent said “It would be really helpful when you go to the family doctor, or any other healthcare person, to catch them up on what’s being done without having to explain it all.” – Caregiver 10

Conclusions: Using a mixed method design with a KTA framework a novel tool called the Pediatric Developmental Passport was developed to be used as a communication tool for physicians and families to communicate recommendations for services and to track access at follow-up visits. The Passport will be an effective tool for physicians to communicate recommendations to families, reduce caregiver stress and increase physicians’ ability to support and advocate for families. Further studies are being conducted to demonstrate successful implementation within a clinical setting.