Health Research Methods, Evidence and Impact, McMaster University, Hamilton Canada.
Psychiatry, University of Rwanda, Rwanda.
Med Confl Surviv. 2024 Jun;40(2):153-181. doi: 10.1080/13623699.2024.2339732. Epub 2024 Apr 18.
After often gruelling journeys, some refugees arrive at secure locations with severe injury or illness. Others find themselves shortly thereafter facing a life-limiting health condition. Palliative care has been the focus of recent research, and of academic and aid sector dialogue. In this study, we ask: What are experiences and needs of patients and care providers? What opportunities and obstacles exist to enhance or introduce means of reducing suffering for patients facing serious illness and injury in crisis settings? We present findings of a qualitative sub-study within a larger programme of research exploring moral and practical dimensions of palliative care in humanitarian crisis contexts. This paper presents vignettes about palliative care from refugees and care providers in two refugee camps in Rwanda, and is among the first to provide empirical evidence on first-hand experiences of individuals who have fled protracted conflict and face dying far from home. Along with narratives of their experiences, participants provided a range of recommendations from small (micro) interventions that are low cost, but high impact, through to larger (macro) changes at the systems and societal levels of benefit to policy developers and decision-makers.
经过漫长而艰辛的旅程，一些难民抵达安全地点时可能身负重伤或身患重病。还有一些难民在抵达后不久就面临危及生命的健康状况。姑息治疗一直是最近研究的重点，也是学术界和援助部门讨论的重点。在这项研究中，我们提出了以下问题：患者和护理人员的体验和需求是什么？在增强或引入减轻在危机环境中面临严重疾病和伤害的患者痛苦的手段方面，存在哪些机会和障碍？我们展示了在探索人道主义危机背景下姑息治疗的道德和实践维度的更大研究计划中的一个定性子研究的结果。本文介绍了卢旺达两个难民营中的难民和护理人员的姑息治疗案例，这是首批提供有关逃离长期冲突并在远离家乡的地方面临死亡的个人第一手经验的实证证据的论文之一。除了他们的经历叙述外，参与者还提出了一系列建议，从小的（微观）干预措施到系统和社会层面的更大（宏观）变革，这些建议对政策制定者和决策者都有益处。
