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患有青少年类风湿性关节炎的儿童在学校的情况。功能问题、参加体育教育。《第94 - 142号公法》的实施。

Children with juvenile rheumatoid arthritis at school. Functional problems, participation in physical education. The implementation of Public Law 94-142.

作者信息

Whitehouse R, Shope J T, Sullivan D B, Kulik C L

机构信息

Department of Pediatrics, University of Michigan, Ann Arbor.

出版信息

Clin Pediatr (Phila). 1989 Nov;28(11):509-14. doi: 10.1177/000992288902801104.

Abstract

Parents of 135 children with juvenile rheumatoid arthritis (JRA) completed a mailed questionnaire about problems at school. Writing was the most frequently reported difficulty, with hand involvement causing more problems than decreased mobility. Compared to children with pauciarticular JRA, those with polyarticular or systemic JRA were significantly more likely to miss school, experience problems, participate less in physical education, have an Individualized Educational Plan (IEP) developed, and receive related services. Only 39 parents had heard of PL 94-142, and only 21 of those could define the federal law. Twenty children had an IEP within the previous two years. Possible deficiencies in the implementation of PL 94-142 were discovered. This study demonstrates that the treatment of children with JRA should include efforts to: 1) identify and remediate potential performance limitations before they become problematic at school; 2) communicate this information to parents and school personnel; 3) and improve parents' awareness and understanding of PL 94-142.

摘要

135名幼年类风湿性关节炎(JRA)患儿的家长填写了一份关于学校问题的邮寄问卷。书写是最常被报告的困难,手部受累导致的问题比活动能力下降更多。与少关节型JRA患儿相比,多关节型或全身型JRA患儿明显更有可能缺课、遇到问题、参加体育活动的参与度更低、制定个性化教育计划(IEP)并接受相关服务。只有39名家长听说过《公法94 - 142》,其中只有21人能解释这项联邦法律。在过去两年中有20名儿童制定了IEP。研究发现了《公法94 - 142》实施过程中可能存在的缺陷。这项研究表明,对JRA患儿的治疗应包括以下努力:1)在潜在的表现限制在学校成为问题之前识别并加以纠正;2)将这些信息传达给家长和学校工作人员;3)提高家长对《公法94 - 142》的认识和理解。

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