BC Children's Hospital Research Institute, Division of Developmental Pediatrics, Department of Pediatrics, University of British Columbia, Vancouver, BC, Canada.
School of Social Work, Department of Pediatrics, Neurology and Neurosurgery, McGill University, Montreal, QC, Canada.
J Intellect Disabil Res. 2018 Oct;62(10):888-899. doi: 10.1111/jir.12547.
The aim of the current study was to identify functional predictors of perceived impact of childhood disability among families of children with neurodevelopmental disorders and disabilities. We first examined the relationship between sub-domains of adaptive and problematic behaviour and perceived family impact. Second, we examined whether the same sub-domains would emerge as significant after controlling for the impact of child diagnosis, including autism spectrum disorder, cerebral palsy and intellectual disability.
Caregivers of 216 children and adolescents (M = 8.17 years) with neurodevelopmental disorder and disability completed measures of children's practical, conceptual and social skills (i.e. adaptive behaviour), behaviour problems and positive and negative family impact.
Indices of child adaptive and problematic behaviour were only significantly associated with perceived negative family impact. Children's practical and social skills, as well as emotional symptoms, emerged as significant predictors of perceived negative family impact, with emotional symptoms accounting for greatest variance. Including diagnosis in our statistical models did not explain additional variance above and beyond these particular sub-domains of child functioning.
The study findings suggest that it is not children's most impaired domains of functioning that are perceived as significantly impactful by the family. The findings highlight the importance of devoting consideration to the ways in which the functional limitations experienced by children with chronic developmental health conditions similarly impact family life and well-being, regardless of disorder designation.
本研究旨在确定儿童神经发育障碍和残疾家庭感知影响的功能预测因子。我们首先研究了适应和问题行为的亚领域与感知家庭影响之间的关系。其次，我们检验了在控制儿童诊断（包括自闭症谱系障碍、脑瘫和智力残疾）的影响后，相同的亚领域是否仍然具有显著意义。
216 名儿童和青少年（M=8.17 岁）的照顾者完成了儿童实用技能、概念技能和社交技能（即适应行为）、行为问题以及积极和消极家庭影响的测量。
儿童的适应和问题行为指数仅与感知到的消极家庭影响显著相关。儿童的实用技能、社交技能以及情绪症状，是感知到的消极家庭影响的显著预测因子，其中情绪症状占最大的差异。在我们的统计模型中纳入诊断并不能解释除了这些特定的儿童功能亚领域之外的额外方差。
研究结果表明，被家庭感知为具有显著影响的并不是儿童功能最受损的领域。研究结果强调了关注儿童慢性发育健康状况所经历的功能限制如何同样影响家庭生活和幸福感的重要性，而不论疾病的指定如何。
