RESUMO
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.
Rehabilitation for children with ABI in the chronic phase and their families should have a broad, interdisciplinary and biopsychosocial approach.The children's and parents' large focus on school functioning (including social aspects), emotional functioning, and fatigue in the current, heterogeneous sample indicates that these may be candidates for core elements in rehabilitation of children with acquired brain injury.The well-established focus in rehabilitation on «returning to school¼ after ABI may need to be broadened to «coping with school over time¼ for a subset of children.In addition to well-established factors that are important in rehabilitation and family-centered care, we suggest that caregiving burden of families and siblings' functioning should also be considered.
