Michelsen Susan I, Flachs Esben M, Damsgaard Mogens T, Parkes Jacqueline, Parkinson Kathryn, Rapp Marion, Arnaud Catherine, Nystrand Malin, Colver Allan, Fauconnier Jerome, Dickinson Heather O, Marcelli Marco, Uldall Peter
National Institute of Public Health, University of Southern Denmark, Oster Farimagsgade 5A, 1353 Copenhagen, Denmark.
National Institute of Public Health, University of Southern Denmark, Oster Farimagsgade 5A, 1353 Copenhagen, Denmark.
Eur J Paediatr Neurol. 2014 May;18(3):282-94. doi: 10.1016/j.ejpn.2013.12.003. Epub 2013 Dec 25.
Children with cerebral palsy participate less in everyday activities than children in the general populations. During adolescence, rapid physical and psychological changes occur which may be more difficult for adolescents with impairments. Within the European SPARCLE project we measured frequency of participation of adolescents with cerebral palsy by administering the Questionnaire of Young People's Participation to 667 adolescents with cerebral palsy or their parents from nine European regions and to 4666 adolescents from the corresponding general populations. Domains and single items were analysed using respectively linear and logistic regression. Adolescents with cerebral palsy spent less time with friends and had less autonomy in their daily life than adolescents in the general populations. Adolescents with cerebral palsy participated much less in sport but played electronic games at least as often as adolescents in the general populations. Severity of motor and intellectual impairment had a significant impact on frequency of participation, the more severely impaired being more disadvantaged. Adolescents with an only slight impairment participated in some domains as often as adolescents in the general populations. Regional variation existed. For example adolescents with cerebral palsy in central Italy were most disadvantaged according to decisional autonomy, while adolescents with cerebral palsy in east Denmark and northern England played sports as often as their general populations. Participation is an important health outcome. Personal and environmental predictors of participation of adolescents with cerebral palsy need to be identified in order to design interventions directed to such predictors; and in order to inform the content of services.
与普通儿童相比，脑瘫儿童参与日常活动的程度较低。在青春期，会发生快速的身体和心理变化，这对有残疾的青少年来说可能更加困难。在欧洲SPARCLE项目中，我们通过向来自欧洲九个地区的667名脑瘫青少年或其父母以及来自相应普通人群的4666名青少年发放《青少年参与问卷》，来测量脑瘫青少年的参与频率。分别使用线性回归和逻辑回归对各个领域和单项进行分析。与普通青少年相比，脑瘫青少年与朋友相处的时间较少，在日常生活中的自主性也较低。脑瘫青少年参与体育活动的程度要低得多，但玩电子游戏的频率至少与普通青少年一样。运动和智力障碍的严重程度对参与频率有显著影响，障碍越严重，处于劣势的程度就越高。仅有轻微障碍的青少年在某些领域的参与频率与普通青少年一样。存在地区差异。例如，根据决策自主性，意大利中部的脑瘫青少年处于最不利地位，而丹麦东部和英格兰北部的脑瘫青少年参与体育活动的频率与普通人群相同。参与是一项重要的健康指标。需要确定脑瘫青少年参与的个人和环境预测因素，以便针对这些预测因素设计干预措施；并为服务内容提供依据。
