Parent-reported family impact in children and young adults with acquired brain injury in the outpatient rehabilitation setting

Abstract

Purpose: To increase knowledge/awareness on family impact (FI) after acquired brain injury (ABI) in rehabilitation settings, it is essential to investigate the associations between patient-functioning and impact on families. This has been explored in hospital-based cohorts, but not in rehabilitation settings. Methods: A cross-sectional, multi-center study among parents of children/young adults (aged 5-24 years) with ABI referred to rehabilitation was performed. Patient/injury/family-characteristics were noted, and parents completed the PedsQL™Family-Impact-Module and PedsQL™generic-core-4.0 to assess FI and health-related quality of life (HRQoL). Univariate-and multivariable-regression analyses were performed to investigate associations between HRQoL/patient/injury/family-related factors and FI. Results: 246 families participated; patients' median age was 14 year (IQR 11-16), 65 had non-traumaticbrain-injury (nTBI) (26%), 127 were female. FI was found to be considerable (median FIM-score 71.9, IQR:60-85). Especially referral to rehabilitation >6 months after onset, diminished patients' mental/ emotional health and HRQoL (child/family factors), and premorbid problems were associated with higher FI. Conclusions: In this rehabilitation cohort, pediatric ABI caused considerably higher FI than in hospitalbased studies with referral to rehabilitation >6 months, diminished child/family factors and presence of premorbid problems increasing FI. Assessing and monitoring FI and its associated factors enables professionals to individualize treatment, psychoeducation, support and follow-up.

Long-term Participation and Functional Status in Children Who Experience Traumatic Brain Injury

“…Providing education to parents at the time of injury about the effects of TBI on participation and of the importance of continued monitoring and follow-up after the injury may be helpful. Finally, this study aligns with previous reports on longer-term outcomes on changes in social participation over time 4,24,26. Children require monitoring across the developmental life span to determine whether the effects reported in this study persist and impact participation in home, school, and social activities.…”

“…Finally, this study aligns with previous reports on longer-term outcomes on changes in social participation over time. 4,24,26 Children require monitoring across the developmental life span to determine whether the effects reported in this study persist and impact participation in home, school, and social activities. Future research that follows children into adulthood will help us better understand the longer-term impact of the effects of TBI on participation.…”

“…First, we used a different cutoff score for the CASP than in previous studies based on our sample and guidance from the author, 31 who indicated that studies can develop a unique scoring system based on their sample. Similar approaches to dichotomizing or categorizing CASP scores were used successfully by Câmara-Costa et al 29 and Allonsius et al 26 Second, we did not assess preinjury participation. Consequently, we cannot determine whether the low participation in 7% to 11% of children with less severe TBI and OI reflects preinjury functioning or postinjury changes.…”

“…In addition to greater TBI severity, less favorable participation outcomes have been linked with other child factors, including greater postinjury health problems and difficulties in cognitive, motor, and behavioral functioning 7,17. Specifically, changes after TBI in executive function, attention, academic performance, social competence, psychological health, and everyday competencies in motor and physical function contribute to reduced participation after a TBI 20–26. The few studies evaluating preinjury factors found that preinjury adaptive behavior and educational performance were not significantly related to either quality of life27,28 or participation following TBI 29…”

“…7,17 Specifically, changes after TBI in executive function, attention, academic performance, social competence, psychological health, and everyday competencies in motor and physical function contribute to reduced participation after a TBI. [20][21][22][23][24][25][26] The few studies evaluating preinjury factors found that preinjury adaptive behavior and educational performance were not significantly related to either quality of life 27,28 or participation following TBI. 29 The family environment is a vital contributor to the quality of participation.…”