Long Term Participation Outcomes for Severe Acquired Brain Injury in Childhood – An Expanded Scoping Review

Abstract

Introduction: Participation in childhood Acquired Brain Injury (ABI) lacks clarity in definition and determinants influencing long-term outcome. This paper aims to investigate and identify the factors that impact long-term outcomes, and prioritize the measures that focus on and endorse children, young people, and their family’s concept of participation.Methods: A scoping review was carried out using research literature and non-research data sources including data review, child/family interviews, and expert consultation.Results: Six peer-reviewed papers sourced. Families reported that participation for the whole family is important and recovers in a non-linear manner after rehabilitation. Experts agreed the priority and complexity of participation following severe ABI.Conclusion: Review highlights that regaining participation through the attendance at, and the engagement in life situations, for children after severe ABI, is important, complex and is affected by many factors.Future research requires a flexible approach to understand participation and inform future targeted interventions.