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脑瘫患儿与非脑瘫患儿家庭及社区参与情况的比较研究

Comparative study of home and community participation among children with and without cerebral palsy.

作者信息

Milićević Milena, Nedović Goran

机构信息

Institute of Criminological and Sociological Research, Gračanička 18, 11000 Belgrade, Serbia.

Faculty of Special Education and Rehabilitation, University of Belgrade, Visokog Stevana 2, 11000 Belgrade, Serbia.

出版信息

Res Dev Disabil. 2018 Sep;80:74-83. doi: 10.1016/j.ridd.2018.06.010. Epub 2018 Jun 27.

DOI:10.1016/j.ridd.2018.06.010
PMID:29957491
Abstract

BACKGROUND

Children with cerebral palsy (CP) are at increased risk of reduced participation. Parental evaluation of child's participation is often the decision-making factor in the process of special education and/or rehabilitation.

AIMS

Examine and compare home and community participation of children with CP and typical development (TD) and the associations between their parents' desire for change and participation dimensions in both settings.

METHODS AND PROCEDURES

This cross-sectional study included a convenience sample of 110 children with CP (55% males; mean age 12.7 years) and 134 children with TD (49% males; mean age 12.1 years). The Participation and Environment Measure for Children and Youth (PEM-CY) was used.

OUTCOMES AND RESULTS

Home and community participation and environmental supportiveness of children with CP were lower compared to children with TD (p < .001, family income controlled). The effect sizes indicated that there may be no clinically important difference in participation frequency. Parents of children with CP desired change if participation was less diverse at home, less frequent in the community, or if involvement was lower in both settings (environmental supportiveness and income controlled).

CONCLUSIONS AND IMPLICATIONS

At home, parents expressed a desire for change more intensely through the range of activities, while parents of children with TD emphasized participation frequency. In the community, parents of children with CP equally perceived participation diversity and focused more on frequency and involvement.

摘要

背景

脑瘫(CP)患儿参与度降低的风险增加。家长对孩子参与度的评估往往是特殊教育和/或康复过程中的决策因素。

目的

研究并比较脑瘫患儿与发育正常(TD)儿童在家庭和社区中的参与情况,以及他们父母对改变的期望与两种环境下参与维度之间的关联。

方法和程序

这项横断面研究纳入了110名脑瘫患儿(55%为男性;平均年龄12.7岁)和134名发育正常儿童(49%为男性;平均年龄12.1岁)的便利样本。使用了儿童和青少年参与及环境测量工具(PEM-CY)。

结果

与发育正常儿童相比,脑瘫患儿在家庭和社区中的参与度及环境支持度较低(p < 0.001,已控制家庭收入)。效应量表明参与频率可能没有临床重要差异。如果脑瘫患儿在家中的参与活动种类较少、在社区中的参与频率较低,或者在两种环境下的参与度较低(已控制环境支持度和收入),其父母希望做出改变。

结论及启示

在家庭中,脑瘫患儿的父母通过活动范围更强烈地表达了改变的愿望,而发育正常儿童的父母则强调参与频率。在社区中,脑瘫患儿的父母同样意识到参与的多样性,并更关注频率和参与度。

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