Determinants of participation of youth with acquired brain injury: A systematic review.

OBJECTIVES: Participation is considerably restricted in children and adolescents with acquired brain injury (ABI) as compared to their healthy peers. This systematic review aims to identify which factors are associated with participation in children and adolescents with ABI.

METHODS: A systematic search in Medline and various other electronic databases from January 2001-November 2014 was performed. All clinical studies describing determinants of participation at least 1 year after the diagnosis of ABI by means of one or more pre-defined instruments in patients up to 18 years of age were included. Extracted data included study characteristics, patient characteristics, participation outcome and determinants of participation (categorized into: health conditions (including characteristics of ABI), body functions and structures, activities, personal factors and environmental factors). The methodological quality of the studies was evaluated based on three quality aspects (selection, information and statistical analysis bias) and scored as low, moderate or high.

RESULTS: Eight studies using an explicit participation outcome measure were selected after review, including a total of 1863 patients, with a follow-up ranging from 1 up to 288 months. Three studies included patients with a traumatic or a non-traumatic brain injury (TBI or NTBI) and five studies with only TBI patients. Factors consistently found to be associated with more participation restrictions were: greater severity of ABI, impaired motor, cognitive, behavioural and/or sensory functioning, limited accessibility of the physical environmentand worse family functioning. Fewer participation problems were associated with a supportive/nurturing parenting style, higher household income, acceptance and support in the community and availability of special programmes. The overall methodological quality of the included studies was high in two and moderate in six studies.

CONCLUSION: This systematic review shows that only a few, moderate quality, studies on the determinants of participation after paediatric ABI using recommended explicit measurement instruments are available. Various components of the ICF model: health condition, body functions and structures and environmental factors were consistently found to be associated with participation. More methodologically sound studies, using the recommended explicit outcome measures, a standardized set of potential determinants and long-term follow-up are suggested to increase the knowledge on participation in children and youth with ABI.