Michelsen Susan I, Flachs Esben M, Uldall Peter, Eriksen Eva L, McManus Vicki, Parkes Jackie, Parkinson Kathryn N, Thyen Ute, Arnaud Catherine, Beckung Eva, Dickinson Heather O, Fauconnier Jérôme, Marcelli Marco, Colver Allan
National Institute of Public Health, University of Southern Denmark, Oster Farimagsgade 5A, 1399 Copenhagen, Denmark.
Eur J Paediatr Neurol. 2009 Mar;13(2):165-77. doi: 10.1016/j.ejpn.2008.03.005. Epub 2008 Jun 20.
Participation in home, school and community is important for all children; and little is known about the frequency of participation of disabled children. Frequency of participation is a valuable outcome measure for evaluating habilitation programmes for disabled children and for planning social and health services. We investigated how frequency of participation varied between children with cerebral palsy and the general population; and examined variation across countries to understand better how the environmental factors such as legislation, public attitudes and regulation in different countries might influence participation. We undertook a multi-centre, population-based study in children with and without cerebral palsy. Working from the Life-H instrument, we developed a questionnaire to capture frequency of participation in 8-12-year-old children. In nine regions of seven European countries, parents of 813 children with cerebral palsy and 2939 children from the general populations completed the questionnaire. Frequency of participation for each question was dichotomised about the median; multivariable logistic regressions were carried out. In the general population, frequency of participation varied between countries. Children with cerebral palsy participated less frequently in many but not all areas of everyday life, compared with children from the general population. There was regional variation in the domains with reduced participation and in the magnitude of the differences. We discuss how this regional variation might be explained by the different environments in which children live. Attending a special school or class was not associated with further reduction in participation in most areas of everyday life.
参与家庭、学校和社区活动对所有儿童都很重要;而关于残疾儿童参与活动的频率却知之甚少。参与频率是评估残疾儿童康复计划以及规划社会和健康服务的一项重要结果指标。我们调查了脑瘫儿童与普通儿童在参与频率上的差异;并研究了不同国家之间的差异,以更好地了解不同国家的立法、公众态度和监管等环境因素如何影响参与情况。我们对有和没有脑瘫的儿童进行了一项基于人群的多中心研究。以Life-H工具为基础,我们编制了一份问卷,以获取8至12岁儿童的参与频率。在七个欧洲国家的九个地区,813名脑瘫儿童的父母和2939名普通儿童的父母完成了问卷。每个问题的参与频率根据中位数进行二分法划分;进行了多变量逻辑回归分析。在普通人群中,参与频率因国家而异。与普通儿童相比,脑瘫儿童在许多但并非所有日常生活领域的参与频率较低。在参与减少的领域以及差异程度方面存在地区差异。我们讨论了这种地区差异如何可能由儿童生活的不同环境来解释。在大多数日常生活领域,就读特殊学校或班级与参与度的进一步降低无关。