• 主题
高级搜索  >
历史搜索 清空历史
首页> 外文期刊>Sociology of health & illness >Who rules rare disease associations? A framework to understand their action.
【24h】

Who rules rare disease associations? A framework to understand their action.

机译：谁负责罕见疾病协会？了解他们行动的框架。

获取原文
获取原文并翻译 | 示例
           
页面导航
  • 摘要
  • 著录项
  • 相似文献
  • 相关主题

摘要

The inner structure of so-called 'patients' organisations' has been accorded relatively little attention with respect to their increasing role in the medical world. This comparative study in France of eight such organisations, matching six rare disorders, explores the issue of power and decision making through the description of the entities that make up the organisation (and especially which stakeholders are represented), their mutual relationships, the temporal scope of collective action, and the concrete achievements of the organisation. Two main types of organisation are distinguished: 'pluralistic' organisations (that bring together a broad array of different stakeholders who are willing to work together) and 'monistic' organisations (where a single category of stakeholders firmly takes the lead). Their operations are very different and result from the association's composition. A key finding is that both the usual opposition between lay and expert and the reference to the diseases' characteristics prove to be irrelevant to understanding these organisations. Rather, the composition of the leading group is crucial.
机译：关于它们在医疗界日益重要的作用，所谓的“患者组织”的内部结构很少受到关注。这项针对法国的八个组织的比较研究，匹配了六个罕见的疾病，通过描述组成组织的实体（尤其是代表利益相关者的实体），它们之间的相互关系，时间范围来探讨权力和决策问题集体行动，以及组织的具体成就。区分两种主要类型的组织：“多元”组织（将愿意合作的各种各样的不同利益相关者聚集在一起）和“单一”组织（其中一类利益相关者坚定地领导）。他们的运作有很大的不同，这是由协会的组成造成的。一个关键发现是，非专业人士和专家之间通常的对立以及对疾病特征的提及均与了解这些组织无关。相反，领导小组的组成至关重要。

著录项

相似文献

  • 外文文献
  • 中文文献
  • 专利
获取原文

客服邮箱：kefu@zhangqiaokeyan.com

京公网安备：11010802029741号 ICP备案号：京ICP备15016152号-6 六维联合信息科技 (北京) 有限公司©版权所有

  • 客服微信

  • 服务号