Rohrer-Baumgartner Nina, Laberg Holthe Ingvil, Svendsen Edel Jannecke, Dahl Hilde M, Borgen Ida M H, Hauger Solveig L, Thulesius Malin S, Wade Shari L, Røe Cecilie, Løvstad Marianne
Department of Research, Sunnaas Rehabilitation Hospital, Nesoddtangen, Norway.
Department of Psychology, Faculty of Social Sciences, University of Oslo, Oslo, Norway.
Disabil Rehabil. 2025 Mar;47(6):1543-1552. doi: 10.1080/09638288.2024.2376936. Epub 2024 Jul 13.
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).
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.
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.
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.
增进我们对小儿获得性脑损伤（pABI）慢性期需要康复治疗的儿童及其家长的特征、家庭功能以及日常生活中的主要挑战的理解。
纳入58名ABI后至少一年的儿童（年龄6 - 16岁，48%为女孩）。收集了有关儿童症状负担、家长情绪症状和家庭功能的人口统计学及问卷数据。儿童和家长列出了他们在日常生活中与pABI相关的主要挑战，并根据《国际功能、残疾和健康分类》（ICF）进行了分类。进行了描述性统计分析。
家长的情绪症状负荷较高；22.3%有中度、中重度或重度抑郁症状，而焦虑症状的相应比例为17.9%。32.1%的家长报告存在家庭功能问题。当被问及他们在日常生活中与pABI相关的主要挑战时，69%的儿童提到了学校。儿童和家长最常涉及的ICF章节是学校教育、精力和动力功能（主要是疲劳）以及情绪功能。编码涵盖了所有ICF领域。
pABI的康复应采用广泛、跨学科且以家庭为中心的方法，将学校、疲劳以及家长和儿童的情绪功能作为潜在的核心要素。
