Guyard Audrey, Michelsen Susan I, Arnaud Catherine, Fauconnier Jerome
UGA/CNRS/CHU de Grenoble, TIMC-IMAG UMR 5525, Themas, Grenoble F-38041, France.
National Institute of Public Health, University of Southern Denmark, Oster Farimagsgade 5, 1399 Copenhagen, Denmark.
Res Dev Disabil. 2017 Feb;61:138-150. doi: 10.1016/j.ridd.2016.11.010. Epub 2017 Jan 10.
Factors promoting family adaptation to child's disability are poorly studied together. The aim of the study was to describe the family adaptation to disability and to identify determinants associated with using a global theoretical model.
286 families of teenagers [13-17 years] with cerebral palsy (CP) from 4 European disability registers were included and visited at home. Face to face interviews were performed in order to measure parental distress, perceived impact in various dimensions of family life, family resources and stressors. Relationships were modelled with structural equations.
31.8% of parents living with an adolescent with CP showed clinically significant high stress requiring professional assistance. The main stressors were the level of motor impairment and behavioural disorders in adolescent. A good family functioning was the best protective factor. Respite in care and a parents' positive attitude were significantly related to less parental distress. Material support, socioeconomical level, marital status or parental qualifications did not appear to be significant protector factors.
Particular attention must be paid not only on physical condition but also on adolescent psychological problems to improve family adaptation. Families at risk of experiencing severe distress should be targeted early and proactive caregiver interventions on the whole family should be performed.
Family is a dynamic system: facing disability, it tries to recover its balance with available resources and its perception of the situation. Literature highlights potential stressors and protecting factors that could affect the disabled child's family adaptation but few papers study a global model including most of these factors. This study validated a global theoretical model of family adaptation to disability at adolescence. It identified behaviour disorders and motor impairment level as main stressors, family functioning as the largest protecting factors, and equipment and financial support as non significant protective factors.
共同促进家庭适应儿童残疾的因素鲜有研究。本研究旨在描述家庭对残疾的适应情况，并使用一个整体理论模型来确定相关的决定因素。
纳入来自4个欧洲残疾登记处的286个患有脑瘫（CP）的青少年（13 - 17岁）家庭，并进行家访。通过面对面访谈来测量父母的痛苦程度、家庭生活各个维度的感知影响、家庭资源和压力源。采用结构方程对关系进行建模。
在与患有CP的青少年一起生活的父母中，31.8%表现出临床上显著的高压力，需要专业帮助。主要压力源是青少年的运动障碍程度和行为障碍。良好的家庭功能是最佳保护因素。临时照料和父母的积极态度与较少的父母痛苦显著相关。物质支持、社会经济水平、婚姻状况或父母资质似乎并非显著的保护因素。
为改善家庭适应情况，不仅要特别关注身体状况，还要关注青少年的心理问题。应尽早针对有严重痛苦风险的家庭，并对整个家庭进行积极的照料者干预。
家庭是一个动态系统：面对残疾时，它试图利用可用资源和对情况的认知来恢复平衡。文献强调了可能影响残疾儿童家庭适应的潜在压力源和保护因素，但很少有论文研究包含这些因素的整体模型。本研究验证了一个关于青少年期家庭适应残疾的整体理论模型。它确定行为障碍和运动障碍程度为主要压力源，家庭功能为最大保护因素，而设备和经济支持为非显著保护因素。
