What are patients with Rett syndrome interested in?
What are patients with Rett syndrome interested in?
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DOI：
10.1589/jpts.30.258
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发表时间：
2018-03
影响因子：
--
通讯作者：
Taniguchi T
中科院分区：
文献类型：
--
作者：
Hirano D;Taniguchi T
[目的] Rett综合征是一种严重的神经发育性疾病，患者通常没有语言技能或有目的的手部运动。在临床环境中，了解他们的兴趣将有助于治疗。因此，我们调查了Rett综合征患者的利益。[对象和方法] 2016年，我们向1，016名特殊需要教育学校的负责人和204名康复部门的负责人发送了关于Rett综合征患者个人利益的调查问卷（130个严重肢体和智力残疾人设施，73个严重肢体和智力残疾人病房，以及日本国立医院组织和国立中心医院，以及国立神经病学和精神病学中心）。我们使用描述性统计和内容分析来检查问卷的答案。[结果]共收集Rett综合征患者216例，年龄3-53岁。 92.9%的人被报告有一些兴趣（例如，在人物、音乐、要看的东西、动画或书籍中）。[结论] Rett综合征患者尽管有严重的运动和智力障碍，但仍对各种事物感兴趣。这些发现表明，家庭成员和护理人员可能会促进这些人的各种变化或发展，并通过关注他们的兴趣发现他们隐藏的优势。
[Purpose] Rett syndrome is a severe neurodevelopmental disease; individuals typically have no verbal skills or purposeful hand movements. In clinical settings, knowledge of their interests would be helpful for therapy. Therefore, we investigated the interests of Rett syndrome patients. [Subjects and Methods] In 2016, we sent a questionnaire regarding the interests of individuals with Rett syndrome to 1,016 directors of schools for special needs education and 204 directors of rehabilitation departments (130 facilities for persons with severe motor and intellectual disabilities, 73 wards for patients with severe motor and intellectual disabilities, and the National Hospital Organization and National Center Hospital, and the National Center of Neurology and Psychiatry) in Japan. We used descriptive statistics and content analysis to examine the answers to the questionnaires. [Results] Information was acquired from 216 individuals (3–53 years old) with Rett syndrome. 92.9% of the individuals were reported to have some interests (e.g., in people, music, things to see, animation, or books). [Conclusion] Individuals with Rett syndrome were observed to be interested in various things despite their having severe motor and intellectual disabilities. These findings suggest that family members and care staff might facilitate various changes or developments of these individuals and discover their hidden strengths by focusing on their interests.