在SCI中倡导的优先事项和机会:国际基于网络的审查
Vyshnavi Manohara1, Anna Nuechterlein1, Tanya A Barretto1
1Neuroethics Canada, Division of Neurology, Department of Medicine, University of British Columbia, Vancouver, Canada.
The journal of spinal cord medicine
|July 8, 2024
概括
倡导组织为脊髓损伤 (SCI) 恢复提供重要资源. 大多数提供教育和身体健康信息,研究参与细节有限,但可访问.
科学领域:
- 康复医学 康复医学 康复医学
- 医疗保健服务研究 医疗服务研究
- 患者倡导 患者倡导
背景情况:
- 脊髓损伤 (SCI) 影响着全球越来越多的人口.
- 倡导组织对于SCI恢复和康复期间的信息和教育至关重要.
研究的目的:
- 分析国际SCI倡导组织的结构,信息内容和网站可访问性.
- 确定这些组织提供的各种资源和服务.
主要方法:
- 通过谷歌搜索识别的G20国家SCI组织网站的内容分析.
- 纳入标准侧重于为SCI患者提供服务,并提供英语网站的组织.
- 可访问性使用3分级别来评估易于访问参与信息的可访问性.
主要成果:
- 在六个地区确定了SCI组织,欧洲,北美和大洋洲的数量最大.
- 提供的主要资源包括教育,身体健康,同行支持,心理健康和金融/法律服务.
- 11个组织提供了关于临床试验和参与研究的信息,其中4个提供了高度可访问的细节.
结论:
- SCI倡导组织主要提供与教育和身体健康相关的资源.
- 虽然参与SCI研究的途径存在,但信息可访问性各不相同,只有少数组织提供高度可访问的细节.
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