Exploring the care coordination experiences of professionals and caregivers of youth with acquired brain injuries in rural areas.

Abstract

Acquired brain injuries (ABIs) can have devastating effects on children and their families. Families living in rural communities experience unique barriers to receiving and coordinating care for complex medical needs, but little research has examined those barriers for rural youth with ABIs. This qualitative study explored the experiences of rural adults caring for children with ABIs through interviews with six caregivers, three school staff members, and three medical professionals who had treated at least one child with an ABI. Themes in their accounts include difficulty navigating complex situations, support from small communities, isolation and loneliness, the need for more professional education about ABI, and feelings of hope. Barriers to quality care coordination include navigating complex situations, access to transportation, and a lack of communication and education from healthcare agencies. Facilitators of rural care coordination include support from small communities and interagency communication. The results support the need for more comprehensive coordination among rural agencies involved in ABI care. Suggestions for care improvement include providing flexibility due to transportation barriers, capitalizing on the benefits of a small and caring community, and providing healthcare and education professionals with more education about ABI interventions.