Participation seven years after severe childhood traumatic brain injury^*

Abstract

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 rehabilitation

• Participation 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
• severe traumatic brain injury
• outcome
• child
• prospective cohort study

Acknowledgements

The authors wish to thank Doctor Frédéric Courage for his valuable help in the recruitment of the control participants.

Disclosure statement

The authors report no conflicts of interest.

Additional information

Funding

The initial data collection for the initiation of the cohort study was funded by the Département de la Recherche Clinique et du Développement, AP-HP (Paris, No. PHRC 2003; AOM 03018). In depth analyses and manuscript preparation were funded thanks to a co-funding by the French Ministry of Health’s general direction of health and direction of research, studies, assessment and statistics, by the national fund for health insurance of salaried workers, the national fund for health insurance of independent workers, by the national fund for solidarity and autonomy and by the national institute for prevention and education for health, in the call for research projects launched by the IReSP in 2011, and by two grants awarded to Hugo Câmara-Costa: one grant from the French Speaking Society of Research in Children with Disabilities (SFERHE, www.sferhe.org) and one joint grant from the French Traumatic Brain Injury Society (France Traumatisme Crânien – FTC) and the French Speaking Society of Physical Medicine and Rehabilitation (SOFMER, www.sofmer.com).