Life After Brain Injury

Abstract

Background: Children who are Traumatic Brain Injury (TBI) survivors experience changes to their occupational engagement and participation in family life. Families and children who are TBI survivors may experience long-term, chronic disabilities, yet these complex experiences are under researched and underserved. Objective: This research focused on the following questions: What are the lived experiences of children who have survived brain injury and their families upon returning to their homes, schools and communities? What are the helpful and necessary supports and what are the barriers to engaging in meaningful occupations? How can in depth examination of these phenomena better inform OT practice and interprofessional collaboration in service to this community? Methods: In collaboration with University of California, San Francisco (UCSF) Brain Recovery Education Initiative (BREd) clinic, two participants were recruited through convenience sampling. Semi-structured virtual interviews were conducted with 2 parts: Part 1 - Participants discussed lived experiences of life after their child’s brain injury; Part 2- Participants provided family perspectives on common Pediatric TBI assessments (PedsQL & NeuroQoL & PEM-CY). The constant comparison method was utilized in the coding process. To establish coding rigor, consensus coding to 100% was employed across all 5 researchers. Results: This analysis was focused on part 1 of our methods and focused on the lived experiences of the families of children who are brain injury survivors. Preliminary themes were (1) Psychosocial Changes with sub themes of Psychosocial Changes Within the Child and Psychosocial Changes Within the Parent; and (2) Supports with sub themes of Beneficial Supports and Missing Supports. The most notable occupational impacts across all three settings of home, school, and community were impacts on activities of daily living (ADLs) specifically toileting and dignity issues and socialization changes. Implications: Occupational therapists (OT) can fill in the current gaps in service as there is inadequate support when transitioning from a medical setting and therefore medical model of intervention to returning to home, school, and community. OTs are excellent resources to support schools for the return of children who are TBI survivors and advocate for their needs as well as addressing stigmas associated with TBIs. Interprofessional teams can provide impactful services by recognizing and proactively partaking in child and family centered care. Best practices move beyond traditional medical and rehabilitation models and focus on child and family occupational engagement in context. Conclusion: Children who are TBI survivors and their families have complex experiences that are inadequately