Rehabilitation Centre De Hoogstraat, Centre of Excellence for Rehabilitation Medicine Utrecht, The Netherlands.
Disabil Rehabil. 2009;31(22):1828-34. doi: 10.1080/09638280902822286.
Little is known about the way parents of children with cerebral palsy (CP) perceive their involvement in family and personal life situations, also called 'family participation'.
To investigate the perception of family participation among parents of preschool children with CP.
Semi-structured interviews were used to describe how parents (n=53) of children with CP (aged 18 months) perceive participation with respect to family activities and their personal activities. In addition, using a combined score of family and personal activities, we investigated the changes of parental (n=36) perceived family participation over time (followed from 18 months onwards until 42 months of age).
At the child's age of 18 months, a substantial percentage of parents expressed a feeling of being restricted in their family activities (45%) or personal activities (53%). The longitudinal data show that over the 24-month follow-up significant more parents perceived to be restricted in family participation (p = 0.008; Cochran's Q test).
A child with CP in a family may lead to parents perceiving restrictions in family participation. These restrictions arise early in the life of a child with CP and may become more prominent as the child grows older.
对于脑瘫（CP）患儿的父母如何感知他们在家庭和个人生活环境中的参与程度，也称为“家庭参与”，目前知之甚少。
调查学龄前脑瘫儿童父母对家庭参与的感知。
采用半结构式访谈的方法，描述了 53 名脑瘫儿童（18 个月龄）的父母如何看待他们在家庭活动和个人活动中的参与度。此外，我们还使用家庭和个人活动的综合得分，调查了 36 名父母（随访从 18 个月开始，直至 42 个月龄）随时间推移对家庭参与感的变化。
在孩子 18 个月大时，相当一部分父母表示他们在家庭活动（45%）或个人活动（53%）中感到受限。纵向数据显示，在 24 个月的随访中，更多的父母感到家庭参与受限（p = 0.008；Cochran's Q 检验）。
脑瘫儿童的家庭可能会导致父母感知到家庭参与受限。这些限制在脑瘫儿童的早期生活中就已经出现，并可能随着孩子年龄的增长而变得更加突出。
