Butler Claire, Brigden Charlotte, Gage Heather, Williams Peter, Holdsworth Laura, Greene Kay, Wee Bee, Barclay Stephen, Wilson Patricia
Centre for Health Services Studies, University of Kent, Canterbury, UK.
Pilgrims Hospices in East Kent, Canterbury, UK.
BMJ Open. 2018 May 16;8(5):e021192. doi: 10.1136/bmjopen-2017-021192.
Hospice at home (HAH) services aim to enable patients to be cared for and die in their place of choice, if that is at home, and to achieve a 'good death'. There is a considerable range of HAH services operating in England. The published evidence focuses on evaluations of individual services which vary considerably, and there is a lack of consistency in terms of the outcome measures reported. The evidence, therefore, does not provide generalisable information, so the question 'What are the features of hospice at home service models that work, for whom, and under what circumstances?' remains unanswered. The study aims to answer this question.
This is a mixed-methods study in three phases informed by realist evaluation methodology. All HAH services in England will be invited to participate in a telephone survey to enable the development of a typology of services. In the second phase, case study sites representing the different service types will collect patient data and recruit carers, service managers and commissioners to gather quantitative and qualitative data about service provision and outcomes. A third phase will synthesise and refine the results through consensus workshops.
The first survey phase has university ethics approval and the second phase, Integrated Research Application System (IRAS) and Health Research Authority (HRA) approval (IRAS ID:205986, REC:17/LO/0880); the third phase does not require ethics approval. Dissemination will be facilitated by project coapplicants with established connections to national policy-making forums, in addition to publications, conference presentations and reports targeted to service providers and commissioners.
居家临终关怀(HAH)服务旨在让患者能够在其选择的地方(如果是在家中)得到照料并离世,从而实现“善终”。在英格兰,有相当多的居家临终关怀服务机构。已发表的证据主要集中在对个体服务的评估上,而这些服务差异很大,并且在报告的结果指标方面缺乏一致性。因此,这些证据并未提供可推广的信息,所以“居家临终关怀服务模式的有效特征是什么,适用于哪些人,以及在何种情况下有效?”这个问题仍未得到解答。本研究旨在回答这个问题。
这是一项采用混合方法的研究,分三个阶段进行,以现实主义评估方法为指导。将邀请英格兰所有的居家临终关怀服务机构参与电话调查,以便制定服务类型学。在第二阶段,代表不同服务类型的案例研究地点将收集患者数据,并招募护理人员、服务经理和专员,以收集有关服务提供和结果的定量和定性数据。第三阶段将通过共识研讨会综合并完善研究结果。
第一阶段的调查已获得大学伦理批准,第二阶段已获得综合研究应用系统(IRAS)和健康研究管理局(HRA)的批准(IRAS编号:205986,伦理审查委员会编号:17/LO/0880);第三阶段无需伦理批准。除了面向服务提供者和专员的出版物、会议报告外,项目共同申请人与国家决策论坛有既定联系,这将有助于研究成果的传播。