Community reintegration needs following paediatric brain injury: perspectives of caregivers and service providers

Abstract

Purpose To explore the processes of community reintegration of children and families at least one year following a paediatric brain injury from the perspective of caregivers and outpatient/community service providers. Materials and methods A qualitative analysis of semi-structured interviews from outpatient or community service providers (N = 14; occupational, physical, and speech and language therapists, neuropsychologists, school counsellors, recreational providers) and caregivers of six children (N = 8) at least one year after their injury. Interviews were transcribed and thematically coded using deductive (employing Bronfenbrenner’s ecological systems theory) and inductive approaches. Results Themes from both providers and caregivers indicated additional supports needed at all levels of Bronfenbrenner’s ecological systems theory (i.e., individual, microsystem, mesosystem/exosystem, macrosystem, chronosystem). Participants felt that several characteristics would be needed in an ideal service system following paediatric brain injury including: community solutions (“it takes a village”), long-term approaches to care, and new financial approaches. Conclusions The results suggest that children and families have substantial community reintegration needs following paediatric brain injury. Multi-system interventions are needed to support long-term community reintegration, especially those that increase communication and support transitions. There is also a strong need for alternative funding to support these efforts. Implications for Rehabilitation Families with a child with a moderate to severe brain injury face challenges with community reintegration a year or more after their child’s injury. Effort should be put into helping families navigate the complex medical, insurance, and school systems with a navigator service and step-down care to ensure a continuum of care and to support community reintegration. Special support should be provided during transitions, such as transitions from hospital care to outpatient care, and across school transitions.