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Updated: Jul 6, 2025

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Published on: February 16, 2011
A Two-Phase Qualitative Enquiry Into Storytelling's Potential to Support Palliative Care Patient-Led Change, Using a
1Department of Education, University of Hertfordshire Schools of Law and Education, Hatfield, UK.
None:
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.
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