School of Physical & Occupational Therapy, Department of Neurology and Neurosurgery, Department of Pediatrics, McGill University, 3654 Promenade Sir-William-Osler, Davis House, Montreal, Quebec H3H 1P3, Canada.
Disabil Rehabil. 2012;34(14):1202-7. doi: 10.3109/09638288.2011.638035. Epub 2012 Jan 12.
To describe family distress as reported by parents of children with cerebral palsy (CP) and to identify factors associated with distress.
In this descriptive, historical cohort study, parents of school-age children (9.2 ± 2.1 years) with CP completed the Parenting Stress Index, the Impact on Family Scale and family-related items on the Child Health Questionnaire. Predictor variables considered were sociodemographic factors, motor, cognitive and behavioral difficulties and functional limitations. These were assessed using the Gross Motor Function Measure, Leiter IQ, Strengths and Difficulties Questionnaire and Vineland Adaptive Behavior Scale.
Parents of 95 children were recruited, of whom 45% were highly stressed and 11% defensive. Half indicated that their child's health impacted on their time, emotional status and family activities. Family distress measures were modestly associated with motor (r = 0.30-0.48) and cognitive abilities (r = 0.29-0.37) but more strongly correlated with particular behavioral difficulties (r = -0.42 to 0.55). Activity limitations across domains were highly associated with measures of distress.
Parents of school-aged children with CP are likely to experience high stress, increased time constraints and financial and psychological burden. Findings illustrate the need to monitor family functioning intermittently as the child develops and direct appropriate resources to optimize child and family well-being.
描述脑瘫（CP）患儿父母所报告的家庭困扰，并确定与困扰相关的因素。
在这项描述性的历史队列研究中，学龄期（9.2±2.1 岁）脑瘫患儿的父母完成了父母压力指数、家庭影响量表以及儿童健康问卷中的家庭相关项目。考虑的预测变量包括社会人口因素、运动、认知和行为困难以及功能限制。这些通过粗大运动功能测量、莱德智商、强项和困难问卷以及维兰德适应行为量表进行评估。
共招募了 95 名儿童的父母，其中 45%的父母压力较大，11%的父母具有防御性。一半的父母表示，孩子的健康状况影响了他们的时间、情绪状态和家庭活动。家庭困扰的衡量标准与运动（r=0.30-0.48）和认知能力（r=0.29-0.37）中度相关，但与特定的行为困难（r=-0.42 至 0.55）更密切相关。各个领域的活动限制与困扰的衡量标准高度相关。
学龄期脑瘫患儿的父母可能会经历高压力、更多的时间限制、经济和心理负担。研究结果表明，需要在孩子成长过程中定期监测家庭功能，并提供适当的资源，以优化孩子和家庭的福祉。
