Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada.
Canadian National Transplant Research Program, Edmonton, Canada.
Can J Anaesth. 2019 Apr;66(4):406-413. doi: 10.1007/s12630-018-01287-3. Epub 2019 Jan 28.
Clinical researchers are now encouraged to include patient partners in all research projects. Nevertheless, published accounts of patient engagement in complex research projects, such as those involving critically ill and dying patients, are lacking. Whether this absence is due to the relatively new emergence of patient engagement research methods or fundamental challenges regarding family engagement in challenging research contexts is unclear. We describe our experiences with forming a researcher-family partnership in a deceased organ donation research project involving the prospective observation of potential and actual deceased organ donors dying in the intensive care unit.
We used the Guidance for Reporting Involvement of Patients and the Public evidence-based, consensus-informed reporting guidelines to organize our narrative.
We were able to initiate and sustain a research consultant relationship with the mother of a deceased organ donor for over two years. Challenges faced included: constraints on money and time, communication preferences, and the emotional stress of participating in difficult conversations. Positive outcomes included: improvement of data collection tools, new opportunities for access to research populations, and motivation to include family partnership in future grant proposals.
Family engagement in deceased organ donation research is feasible and contributes positively to study progress and outcomes. Patient and family engagement in challenging research contexts may require special attention to the emotional challenges of participation. We hope that our experience will encourage clinical researchers working in deceased organ donation and similarly complex domains to consider including patient partners in their projects.
现在鼓励临床研究人员将患者伙伴纳入所有研究项目中。然而，缺乏关于患者参与复杂研究项目（如涉及病危和垂死患者的研究项目）的发表报道。这种缺失是由于患者参与研究方法的相对新出现，还是由于在具有挑战性的研究环境中涉及家庭参与的基本挑战尚不清楚。我们描述了在一项涉及对重症监护病房中潜在和实际已故器官捐献者进行前瞻性观察的已故器官捐献研究项目中，我们在形成研究人员-家庭伙伴关系方面的经验。
我们使用了《涉及患者和公众参与的报告指南》中的循证共识指导原则，对我们的叙述进行了组织。
我们能够与一位已故器官捐献者的母亲建立并维持超过两年的研究顾问关系。面临的挑战包括：资金和时间的限制、沟通偏好以及参与艰难对话的情绪压力。积极的结果包括：改进了数据收集工具、为研究人群提供了新的机会，以及激励在未来的资助提案中纳入家庭伙伴关系。
在已故器官捐献研究中，家庭参与是可行的，并对研究进展和结果产生积极影响。在具有挑战性的研究环境中，患者和家庭的参与可能需要特别关注参与的情绪挑战。我们希望我们的经验将鼓励在已故器官捐献和类似复杂领域工作的临床研究人员考虑将患者伙伴纳入他们的项目中。
