研究与亲身体验的合作：患者和幸存者的经历故事

English | 2024 | ISBN: 9819700329 | 201 Pages | PDF EPUB (True) | 7.2 MB

This book aims to foster collaborations between patients who have intense lived experience with a medical condition or family violence and researchers investigating them. Inviting patients or survivors into the research team is found to have significant advantages, and chapters review the literature on the benefits they can bring to investigative research teams. The collaboration can take place at multiple stages of research from helping to research design, participating in co-investigators, contributing to the interpretation of results, etc. The conditions addressed in this book include medical conditions from anxiety, postural orthostatic tachycardia syndrome, lupus, asthma, chronic kidney disease, etc. The authors are higher degree students, academics, and active research team members who share their experiences. This is be instrumental in helping patients and survivors decide whether to transition to research. It will also support research team leaders in determining how to benefit from the new perspectives researchers with lived experience bring. The personal narratives provide insight into the challenges and rewards of having lived experience while conducting research.

这本书旨在培养患者与医疗条件或家庭暴力有深刻亲身经历者和研究这些情况的研究人员之间的合作。邀请患者或幸存者加入研究团队被发现有着显著的优势，章节回顾了它们为研究团队带来的益处。这种合作可以在研究的多个阶段进行，包括在帮助研究设计、参与共同研究者以及对结果的解读等方面。这本书中涉及的条件包括焦虑症、立位性直立性心动过速综合征、系统性红斑狼疮、哮喘、慢性肾病等。作者都是高年级学生、学者和活跃的研究团队成员，他们分享了自己的经历。这在帮助患者和幸存者决定是否加入研究方面具有重要作用，同时也支持研究团队领导人在确定如何从亲身经历过者的全新视角中获益方面发挥作用。这些个人叙述提供了有关在进行研究时生活经历带来的挑战与回报的见解。

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