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

Abstract

Purpose

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.

Materials and Methods

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.

Results

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.

Conclusions

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.

IMPLICATIONS FOR REHABILITATION

1. Practitioners should implement tailored support systems that include initiatives to facilitate direct communication between rural medical agencies and schools.

2. Expanding the role of care coordinators to bridge gaps across healthcare, education, and community services could enhance care coordination for children with acquired brain injuries in rural areas.

3. Schools in rural areas should develop formal reintegration programs tailored to the needs of children with mild acquired brain injuries, leveraging existing sports protocols for non-sports-related injuries.

4. Collaborative efforts between schools, medical teams, and community agencies can provide comprehensive education programs tailored to the rural context.

5. The development of online options for follow-up appointments would be particularly beneficial in rural areas, where transportation barriers are more pronounced.

Keywords:

• Traumatic brain injury
• care coordination
• service provision
• children
• rural

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

There was no funding associated with this work.