A terminal diagnosis can diminish an individual’s sense of agency and identity. Leading change appears to restore a sense of agential self. The first phase of this literature review explores factors influencing patient-led change across the palliative care ecosystem. The second phase illuminates how storytelling can support palliative care patients in leading ecosystem-wide change. 35 studies were identified in Phase 1 and 36 in Phase 2. This research highlights the need to situate patient leadership activity within a palliative care ecosystem to understand factors likely to support or hinder patient leadership activity within it. The evidence indicates the potential use of storytelling to support patients with a life-limiting illness to lead change across the palliative care ecosystem. This challenges current conceptualisations of such patients and offers them instead as an additional source of palliative care support.

中文翻译：

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使用系统审查方法对讲故事支持姑息治疗患者主导变革的潜力进行两阶段定性调查

晚期诊断可能会削弱个人的代理感和身份感。领导变革似乎可以恢复代理自我意识。本文献综述的第一阶段探讨了影响整个姑息治疗生态系统中患者主导的变革的因素。第二阶段阐明了讲故事如何支持姑息治疗患者引领整个生态系统的变革。第一阶段确定了 35 项研究，第二阶段确定了 36 项研究。这项研究强调需要将患者领导活动置于姑息治疗生态系统中，以了解可能支持或阻碍患者领导活动的因素。证据表明，讲故事有可能用于支持患有致命疾病的患者，从而引领整个姑息治疗生态系统的变革。这挑战了目前对此类患者的概念，并为他们提供了姑息治疗支持的额外来源。