Primary objectives: To examine the problems reported by families of children who have suffered traumatic brain injury (TBI), and how these differ from problems reported by control families. To identify those problems most likely to resolve over time, and to examine information and follow-up requirements. DESIGN, METHODS AND PROCEDURES: The families of 97 children with mild (49), moderate (19) and severe (29) TBI, aged 5-15 at injury, were interviewed and assessed at a mean of 2.29 years post-injury and compared with 31 healthy controls. A structured questionnaire was used to collect information on problems pre- and post-TBI. Initially, respondents reported problems spontaneously, and were subsequently prompted using a checklist of problem categories. Problems of behaviour and emotion were measured using the Vineland Adaptive Behaviour Scales (VABS) and the Hospital Anxiety and Depression Scale (HADS).
Main outcomes and results: Following the TBI, 83 children (85.6%) received no therapeutic input, 74 families (76.3%) had unmet information needs, particularly regarding long-term consequences. At first interview, 1097 problems were reported by the TBI group. Behavioural and school problems were frequently reported by all TBI groups, significantly more than controls (p < or = 0.001). On the VABS, approximately two thirds of children with TBI exhibited 'significant' maladaptive behaviours, significantly more than controls (p = 0.002). Children in the mild and moderate/severe groups were significantly more anxious than controls on the HADS (p = 0.04). At 12 month follow-up, there were no significant differences in problem resolution between the TBI groups: 498 (53.9%) problems remained unchanged and 75 (8.1%) had worsened. Physical problems were most likely to resolve.
Conclusions: Parents should be given information and support following their child's TBI, children should be routinely followed-up by health professionals and their needs assessed. It was found that children with TBI may be at risk of anxiety, yet few parents reported this as a particular concern. Future research should examine the relationship between anxiety and TBI.