■为了增加我们对孩子和父母特征的理解,儿童获得性脑损伤(pABI)慢性期需要康复的儿童和家庭的家庭功能和日常生活中的主要挑战。
■58名儿童(6-16岁,48%的女孩)在ABI后至少一年被包括在内。关于儿童症状负担的人口统计学和问卷数据,收集父母的情绪症状和家庭功能。孩子和父母在日常生活中提到了与pABI相关的主要挑战,这些是根据国际功能分类进行分类的,残疾与健康(ICF)。进行描述性统计分析。
■父母的情绪症状负荷很高;22.3%有中度,中度-重度或重度抑郁症状,而焦虑症状的等效数为17.9%。32.1%的父母报告了有问题的家庭功能。当被问及他们在日常生活中与pABI相关的主要挑战时,69%的儿童命名为学校。儿童和家长最常见的ICF章节是学校教育,能量和驱动功能(主要是疲劳),和情感功能。代码跨越所有ICF域。
■pABI的康复应该有一个广泛的,跨学科,以家庭为中心的方法,与学校,疲劳,父母和孩子的情感功能是潜在的核心要素。
慢性期ABI患儿及其家庭的康复,跨学科和生物心理社会方法。孩子和父母对学校功能的重视(包括社会方面),情感功能,和疲劳,异质样本表明,这些可能是后天性脑损伤儿童康复的核心要素。在ABI之后,康复方面对“重返学校”的既定关注可能需要扩大到对一部分儿童的“随着时间的推移应对学校”。除了在康复和以家庭为中心的护理中很重要的既定因素之外,我们建议还应考虑家庭和兄弟姐妹的功能负担。
UNASSIGNED: 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).
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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 school» after ABI may need to be broadened to «coping with school over time» 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.