背景:临终患者可能会出现难治的疼痛症状,谵妄,呕吐和呼吸困难是最常见的。姑息镇静可以被认为是缓解一种或多种难治性症状的最后选择。只有有限数量的(定性)研究探索镇静患者亲属及其医疗保健专业人员(HCP)的经历。本研究方案的目的是:1)引出接受姑息性镇静治疗的患者的丧亲亲属和医疗保健专业人员的经验;2)探索在5个护理环境中开始姑息性镇静的决策过程的理解。欧洲国家。
方法:本研究方案是更大的HORIZON2020姑息镇静项目的一部分。组织案例研究方法将用于指导研究设计。总的来说,将在五个欧洲国家(每个国家10个)进行50例。一个病例涉及与一名亲属和一名密切参与护理的HCP的半结构化访谈,该患者在临终时接受了某种姑息性镇静。已故患者的亲属和医疗保健专业人员参与了一项在医院病房护理的镇静患者的关联观察队列研究,将招募姑息治疗单位和收容所。将使用框架分析方法对数据进行分析。第一个完整案例将由所有研究人员在使用预先准备好的代码书翻译成英文后进行分析。之后,将组织两个月一次的会议来协调数据分析。
结论:该研究旨在更好地了解亲属和专业护理人员在不同环境和国家/地区的姑息镇静方面的经验。一些限制是:1)主题的敏感性可能会阻止一些亲戚参与,2)由于数据收集和分析将由5个国家的至少5个不同的研究人员进行,可能会出现一些差异,这可能会使比较案例变得困难,但是使用严格的方法可以将这种风险降至最低。
BACKGROUND: Patients at the end-of-life may experience refractory symptoms of which pain, delirium, vomiting and dyspnea are the most frequent. Palliative sedation can be considered a last resort option to alleviate one or more refractory symptoms. There are only a limited number of (qualitative) studies exploring the experiences of relatives of sedated patients and their health care professionals (HCPs). The aims of this study protocol are: 1) to elicit the experiences of bereaved relatives and health care professionals of patients treated with palliative sedation and 2) to explore the understanding of the decision-making process to start palliative sedation across care settings in 5 European countries.
METHODS: This study protocol is part of the larger HORIZON 2020 Palliative Sedation project. Organisational
case study methodology will be used to guide the study design. In total, 50 cases will be conducted in five European countries (10 per country). A
case involves a semi-structured interview with a relative and an HCP closely involved in the care of a deceased patient who received some type of palliative sedation at the end-of-life. Relatives and health care professionals of deceased patients participating in a linked observational cohort study of sedated patients cared for in hospital wards, palliative care units and hospices will be recruited. The data will be analyzed using a framework analysis approach. The first full
case will be analyzed by all researchers after being translated into English using a pre-prepared code book. Afterwards, bimonthly meetings will be organized to coordinate the data analysis.
CONCLUSIONS: The study aims to have a better understanding of the experiences of relatives and professional caregivers regarding palliative sedation and this within different settings and countries. Some limitations are: 1) the sensitivity of the topic may deter some relatives from participation, 2) since the data collection and analysis will be performed by at least 5 different researchers in 5 countries, some differences may occur which possibly makes it difficult to compare cases, but using a rigorous methodology will minimize this risk.