Long-distance caregiving at the end of life (LoCatE)

在德国，大约有470万人照顾亲人，其中许多人与亲人住在很远的地方。向身患绝症或濒死的人提供远程护理与特定的挑战和负担有关。在德国的情况下，研究缺乏具体的经验和需要的护理人员在临终的情况下，谁是地理上远离他们的亲属。这项研究明确针对照顾者，因为他们经常把自己的需求放在一边，专注于支持他们所爱的人。总体目标是详细说明德国临终时远程照护的具体情况，概述距离如何影响临终照护，并确定临终远程照护者的需求。研究的核心问题是：(1)照顾者如何体验对临终亲人的异地照顾？(2)临终关怀者的具体（支持）需求是什么？他们希望自己和被照顾者得到什么支持？本研究将(i)描述临终时远程照护的具体情况，（ii）为远程照护者提供支持干预建议。探索性质的研究以归纳逻辑为指导，并利用一次性半结构化访谈。定性方法适用于探索尚未充分研究的临终远程护理现象。为了掌握护理经验的多样性，我们将姑息治疗早期和晚期患者的远程护理人员纳入研究。研究分为五个阶段：(1)准备和预试，(2)数据收集和初步分析，(3)数据分析和解释，(4)咨询委员会研讨会，(5)结论和建议。这项研究的目的是提供知识，使社会了解在病人生命结束时对其家庭照顾者的整合和支持。随着越来越多的家庭成员生活在空间分离中，这项研究显得尤为重要。目前的这种发展在未来可能会加剧，并将挑战家庭相互照料的传统模式，并提出新的照料问题，必须从社会和保健政策的角度加以解决。

Of the approximately 4.7 million people in Germany caring for a relative, many live at a physical distance from their loved one. Providing care from afar to a terminally ill or dying person is associated with specific challenges and burdens. For the German context, research is lacking on the specific experiences and needs of caregivers in end-of-life situations who are geographically far from their relative.The study explicitly addresses caregivers, as they often put aside their own needs to focus on supporting their loved ones. The overarching goal is to detail the specifics of long-distance caregiving at the end of life in Germany, outlining how distance shapes end-of-life caregiving and to identify the needs of end-of-life long-distance caregivers. The core research questions are: (1) How do caregivers experience their long-distance caregiving for a relative who is at the end of life? (2) What are specific (support) needs that end-of-life long-distance caregivers have and support they want for themselves and the care recipient? The study will (i) describe the specifics of long-distance caregiving at the end of life and (ii) give recommendations for support interventions for long-distance caregivers.The exploratory qualitative study is guided by an inductive logic and draws on one-time semi-structured interviews. The qualitative approach is appropriate to explore the understudied phenomenon of long-distance caregiving at the end of life. To grasp the multiplicity of caregiving experiences, long-distance caregivers of patients in early palliative care as well as in a very advanced stage will be included in the study. The study is divided into five phases: (1) preparation and pretest, (2) data collection and primary analysis, (3) data analysis and interpretation, (4) advisory board workshop and (5) conclusions and recommendations.The study aims at producing knowledge that will inform society regarding the integration of and support for family caregivers of patients at their end of life. The study is particularly relevant as the members of more and more families live in spatial separation. This current development is likely to intensify in the future and will challenge traditional models of family care for one another and raise new caregiving issues that must be addressed from a social and health policy point of view.