EXPLORING THE ROLE OF COMMUNITY AGENCY EMPLOYEES WHEN ACTING AS PRIMARY POINT OF CARE CONTACTS FOR FAMILIES OF CHILDREN WITH SUSPECTED DEVELOPMENTAL DISABILITIES IN TORONTO ONTARIO

Abstract

Abstract BACKGROUND: Identification and referral of children for developmental evaluation is complex. Children with adverse social determinants of health (SDOH), and newcomer families face additional barriers to accessing developmental services, and their caregivers require further support in managing their child’s developmental care. The routine pathway to diagnosis is referral to a developmental specialist by a primary care physician, however, families with challenging SDOH often rely on community agency staff for a identification and referral. Community agency workers often play a key role in connecting families to primary care physicians (pediatricians and family physicians). However, very little is known on the experiences, challenges and role community workers play in their role as the primary point of care contact for families of children with developmental concerns. OBJECTIVES: This study aims to explore the experiences and challenges that community agency employees face in their role of a primary point of care contact for families with children showing signs of developmental delay and liaison to primary care physicians. DESIGN/METHODS: A qualitative grounded theory approach was used through a series of focus group discussions. Participants were school board employees or staff members of Toronto-area community agencies that offer assessments, referrals, or early intervention programs for children with a suspected or diagnosed developmental diagnosis. RESULTS: A total of twelve community agency employees and school board workers from six different community agencies participated in focus groups. Community agency employees reported the following barriers in completing their role; 1) parental denial of their childs developmental concerns, 2) difference of opinions between a pediatricians diagnosis and the community workers opinion about the child development, and 3) restrictions in the referral process resulting in delayed developmental diagnosis. Community agency workers attributed these barriers to the lack of communication between physician and community agencies. They suggested opportunities to collaborate with primary care physicians; Its going to have to be a collaboration between the doctors and the workers in supporting all these families and provide the services, but also making sure that the news isbeing delivered at the right time.”- Community Agency Worker 1. CONCLUSION: There is a currently a disconnect between primary care physicians and community agency workers in identifying, diagnosing, and managing children with developmental concerns. This study highlights the need for a comprehensive assessment and integration of services and professionals when managing children with developmental concerns.