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Long Term Participation Outcomes for Severe Acquired Brain Injury in Childhood - An Expanded Scoping Review
Lorna Wales1, Kathy Davis2, Gemma Kelly3
1Research Professional Lead, The Children's Trust, Tadworth, UK.
Insights
Understanding participation after childhood Acquired Brain Injury (ABI) is key. This study identifies factors influencing long-term outcomes, emphasizing family-centered approaches for children with ABI.
Area of Science:
- Pediatric Neurology
- Rehabilitation Medicine
- Child Psychology
Background:
- Childhood Acquired Brain Injury (ABI) presents challenges in defining and measuring participation.
- Determinants influencing long-term participation outcomes for children with ABI require further investigation.
Purpose of the Study:
- To identify factors impacting long-term participation outcomes in children with ABI.
- To prioritize measures that align with children's and families' perspectives on participation.
Main Methods:
- A comprehensive scoping review was conducted.
- Included peer-reviewed literature, data reviews, child/family interviews, and expert consultations.
Main Results:
- Six peer-reviewed papers were identified.
- Families emphasized the importance of non-linear family participation recovery post-rehabilitation.
- Experts highlighted the complexity and priority of participation post-severe ABI.
Conclusions:
- Regaining participation through engagement in life situations is crucial for children with severe ABI.
- Participation is complex, influenced by multiple factors, and requires flexible research approaches.
- Future interventions should be informed by a nuanced understanding of participation.
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.
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