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

Abstract

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.

Qualitative Examination of Adolescent Health-Related Quality of Life at 1 Year Postconcussion

“…Postconcussion emotional dysfunction, including frustration, is not uncommon, especially in adolescent patients. In their study of parental ratings of child quality of life after a TBI, Limond et al 22 described persistent emotional and behavioral difficulties for the affected child. The feelings of frustration noted in our study appeared to stem from varied sources, including the nature and longevity of the physical symptoms, interpersonal relationships, and time missed from school and sport.…”

“…Limond et al 22 indicated that poorer post-TBI outcomes were linked to the absence of systematic, long-term follow-up and care. 22 Each interview lasted approximately 9.05 6 2.04 minutes and was centered on the participant's perceptions of the effect of the sport-related concussion on the adolescent's physical and emotional function, academic performance, and social interactions, which are the primary elements of adolescent HRQOL. Responses were obtained via a semistructured interview guide based on 5 open-ended questions (Appendix).…”

“…This postinjury period was chosen on the basis of previous research in which investigators indicated that a substantial percentage of children exhibited emotional, behavioral, or cognitive difficulties that negatively affected their quality of life beyond 5 years post-TBI. 19,22 Furthermore, we also chose this time point on the basis of the need for routine post-TBI follow-up care that extends beyond the acute recovery period. Limond et al 22 indicated that poorer post-TBI outcomes were linked to the absence of systematic, long-term follow-up and care.…”

“…19,22 Furthermore, we also chose this time point on the basis of the need for routine post-TBI follow-up care that extends beyond the acute recovery period. Limond et al 22 indicated that poorer post-TBI outcomes were linked to the absence of systematic, long-term follow-up and care. 22 Each interview lasted approximately 9.05 6 2.04 minutes and was centered on the participant's perceptions of the effect of the sport-related concussion on the adolescent's physical and emotional function, academic performance, and social interactions, which are the primary elements of adolescent HRQOL.…”

Persistence of Disability 24 to 36 Months after Pediatric Traumatic Brain Injury: A Cohort Study

“…In another study, 45% of parents reported that their child did not receive all the services needed during the mean of 4 years after their TBI. 35 An important limitation of the study is that we did not collect detailed data on therapy that patients received after discharge from the inpatient setting. In addition, there is a lack of national standards on the rehabilitation interventions children with TBI should receive, and wide variations both within and across institutions in the nature of care delivered.…”