Purpose: Participation in home, school and community activities is considered as the ultimate aim of rehabilitation. The aims of this study were to examine participation seven years post-severe childhood traumatic brain injury and factors associated with participation.Materials and methods: Participants were enrolled in the Traumatisme Grave de l'Enfant (Severe Childhood Injury) cohort study following severe accidental childhood traumatic brain injury. Participation seven years post-injury, was examined using parent- and self-report forms of the Child and Adolescent Scale of Participation among 37 patients [62% males, mean age 15.4 years (SD = 4.4), mean length of coma 6.68 days (SD = 4.96)] and 33 matched controls.Results: Parent reports indicated significantly lower participation among patients compared to controls, but the self-reports did not. In the traumatic brain injury group, parent-reported participation was variable, with 22% of the patients clearly showing greater restrictions than controls. Participation restrictions were significantly associated with injury severity, poor functional outcome one-year post-injury, executive and behavioral difficulties and higher fatigue levels seven years post-injury, but not with pre-injury nor family factors.Conclusions: Several years after severe childhood traumatic brain injury, participation appears to depend more on injury-related factors than on environmental factors. In self-reports assessments of participation, it could be difficult for children and adolescents to distinguish capacity from performance.Implications for rehabilitationParticipation outcomes were highly variable in a sample of patients who sustained severe childhood traumatic brain injury.Participation should be assessed systematically following severe traumatic brain injury, both initially but also in the long-term, ideally using a combination of self- and proxy-report measures.Among patients with severe injuries, the influence of initial brain injury severity markers on participation seems much stronger than that of social/family environment factors.Children's and adolescents' self-reported participation assessed with the Child and Adolescent Scale of Participation may be difficult to interpret.
Keywords: Participation; child; outcome; prospective cohort study; severe traumatic brain injury.