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Unsolicited written narratives as a methodological genre in terminal illness: Challenges and limitations

机译：不请自来的书面叙述作为绝症的一种方法类型：挑战与局限

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摘要

Stories about illness have proven invaluable in helping health professionals understand illness experiences. Such narratives have traditionally been solicited by researchers through interviews and the collection of personal writings, including diaries. These approaches are, however, researcher driven; the impetus for the creation of the story comes from the researcher and not the narrator. In recent years there has been exponential growth in illness narratives created by individuals, of their own volition, and made available for others to read in print or as Internet accounts. We sought to determine whether it was possible to identify such material for use as research data to explore the subject of living with the terminal illness amyotrophic lateral sclerosis/motor neuron disease-the contention being that these accounts are narrator driven and therefore focus on issues of greatest importance to the affected person. We encountered and sought to overcome a number of methodological and ethical challenges, which is our focus here.
机译：事实证明，有关疾病的故事对于帮助卫生专业人员了解疾病经历具有不可估量的价值。传统上，研究人员通过访谈和收集个人日记（包括日记）来征集此类叙述。但是，这些方法是由研究人员驱动的。故事创作的动力来自研究者，而不是叙述者。近年来，个人创造的疾病叙事呈指数增长，供他人阅读，以印刷品或互联网账户形式使用。我们试图确定是否有可能确定此类材料以用作研究数据，以探讨患有绝症的肌萎缩性侧索硬化症/运动神经元疾病的患者-争论的原因是这些叙述是叙述者驱动的，因此着眼于对受影响的人最重要。我们遇到并试图克服许多方法论和道德挑战，这是我们在这里的重点。

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