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Quality of life in children with acquired brain injury: Parent perspectives 1–5 years after injury

Primary objective: To obtain parental ratings of children's quality of life, cognitive, emotional and behavioural functioning, as well as ratings of service provision, following traumatic brain injury (TBI). Research design: A retrospective, cross-sectional study. Methods and procedures: Parents of 47 children with mild or moderate–severe TBI completed standardized questionnaires evaluating quality of life (PedsQL 4.0) and cognitive, emotional and behavioural functioning (Strengths and Difficulties Questionnaire). Data collected was compared with published normative data for these scales. Views regarding parental experiences of care and their ratings of service provision were also obtained. Results: Quality of life was significantly lower in 13-times as many children with TBI than expected from the normative population. Parents reported that more than 43% of children with TBI had cognitive, emotional and behavioural difficulties that impacted on their daily life. Whilst high levels of social deprivation were found, this did not fully explain the significantly raised levels of difficulties. Another factor associated with this poor outcome was the absence of systematic, routine follow-up or intervention. Conclusions: Parents frequently reported poor quality of life and cognitive, emotional and behavioural problems in their children following TBI. These preliminary findings indicate that children, after TBI, are at risk of developing persistent clinical problems and require follow-up beyond the acute period of their recovery.