Participation Restrictions among Children and Young Adults with Acquired Brain Injury in a Pediatric Outpatient Rehabilitation Cohort: The Patients’ and Parents’ Perspective

Abstract

Improving participation is an important aim in outpatient rehabilitation treatment. Knowledge regarding participation restrictions in children and young adults with acquired brain injury (ABI) is scarce and little is known regarding the differences in perspectives between patients and parents in the outpatient rehabilitation setting. The aims are to describe participation restrictions among children/young adults (5–24 years) with ABI and investigating differences between patients’ and parents’ perspectives. At admission in 10 rehabilitation centers, patients and parents were asked to complete the Child and Adolescent Scale of Participation (CASP; score 0–100; lower score = more restrictions) and injury/patient/family-related questions. CASP scores were categorized (full/somewhat-limited/limited/very-limited participation). Patient/parent-reported outcomes were compared using the Wilcoxon signed-rank test. 223 patients and 245 parents participated (209 paired-samples). Median patients’ age was 14 years (IQR; 11–16), 135 were female (52%), 195 had traumatic brain injury (75%). The median CASP score reported by patients was 82.5 (IQR: 67.5–90) and by parents 91.3 (IQR: 80.0–97.5) (difference = p < 0.05). The score of 58 patients (26%) and 25 parents (10%) was classified as ‘very-limited’. Twenty-six percent of children and young adults referred for rehabilitation after ABI had “very-limited” participation. Overall, parents rated their child’s participation better than patients themselves. Quantifying participation restrictions after ABI and considering both perspectives is important for outpatient rehabilitation treatment.