Perspectives on care coordination for youth with TBI: Moving forward to provide better care

Abstract

BACKGROUND: Care coordination aligns services and optimizes outcomes for children with traumatic brain injury (TBI), yet numerous obstacles can impede effective care coordination following a TBI. OBJECTIVE: The goal of this work is to identify barriers and facilitators to care coordination from the perspective of individuals who care for young people impacted by TBI (e.g., medical providers, educators, caregivers). METHODS: Twenty-one care providers participated in semi-structured interviews to gather their perspectives on systems of care coordination for youth with TBI and potential areas for improvement. Using reflexive thematic analysis, researchers identified key themes across interviews. RESULTS: Three themes were identified: 1) gaps in knowledge; 2) poor collaboration and communication between systems and care providers; and 3) inadequate legislative and policy frameworks that fund and support pediatric TBI. Across themes, participants shared their experiences and ideas to improve each of these areas. CONCLUSION: A structured, consistent, and coordinated system of care for pediatric TBI is critical to ensure optimal outcomes. Protocols that emphasize intentional and productive collaboration between healthcare settings and schools and education for all care providers are cornerstones in improving outcomes for children. Top-down action that develops policy and funding initiatives is needed to ensure equitable, consistent access to appropriate healthcare and educational supports.