Children and families with chronic pediatric acquired brain injury in need of rehabilitation: characteristics and main challenges in daily life

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Purpose To increase our understanding of child and parent characteristics, family functioning and main challenges in daily life in children and families in need of rehabilitation in the chronic phase of pediatric acquired brain injury (pABI). Methods Fifty-eight children (aged 6–16, 48% girls) were included at least one year post ABI. Demographics and questionnaire data regarding children’s symptom burden, parents’ emotional symptoms and family functioning were collected. Children and parents named their main pABI-related challenges in daily life, and these were categorized in accordance with the International Classification of Functioning, Disability and Health (ICF). Descriptive statistical analyses were performed. Results Parents’ emotional symptom loads were high; 22.3% had moderate, moderate-severe or severe depression symptoms while the equivalent number for anxiety symptoms was 17.9%. Problematic family functioning was reported by 32.1% of parents. When asked about their main pABI-related challenges in daily life, 69% of children named school. The most frequent ICF chapters for children and parents were school education, energy and drive functions (mainly fatigue), and emotional functions. Codes spanned across all ICF-domains. Conclusions Rehabilitation for pABI should have a broad, interdisciplinary, and family-centered approach, with school, fatigue, and emotional functioning of parents and children as potential core elements.