Long Covid-The illness narratives
Long Covid-The illness narratives
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DOI：
10.1016/j.socscimed.2021.114326
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发表时间：
2021-08-20
影响因子：
5.4
通讯作者：
Greenhalgh, Trisha
中科院分区：
文献类型：
--
作者：
Rushforth, Alex;Ladds, Emma;Greenhalgh, Trisha
卡拉德和佩雷戈将长期的新冠肺炎描述为第一种由在社交媒体上聚集在一起的患者定义的疾病。为了回应他们的呼吁，解决为什么病人在让长期的新冠肺炎变得可见并引发行动以改善其护理方面如此有效，我们使用叙事调查-一个调查故事和讲故事的地方和力量的研究领域。我们分析了来自英国的114名长期新冠肺炎患者（其中45名是医疗保健专业人员）的叙事访谈和焦点小组的大型数据集，借鉴了社会叙事学（弗兰克），治疗性就业（马丁利）和多音症（巴赫金）。我们描述了如何讲故事的设备，包括年表，隐喻，刻画，悬念和想象力被用来创建一个奇怪的和可怕的新的条件，是困扰着挫折和忽视或解雇的卫生专业人员有说服力的帐户。长篇新冠肺炎叙述（在大多数但并非所有情况下）最独特的特点是，出于各种与大流行相关的原因，没有专业证人。人们并没有在治疗对话中与自己的临床医生分享他们的叙述，而是在找到一个有同情心的观众和在线社区中其他共鸣的叙述之前，努力与一个支离破碎的内心独白作斗争。从个人角度来看，这些故事似乎没有什么意义。总的来说，他们对一种严重的新疾病的各种表现进行了丰富的描述，对医疗保健系统的拒绝进行了共同的描述，并强烈呼吁采取行动来修复破碎的故事。从个人的叙述性帖子发展到集体的叙述性戏剧，长期的Covid社区挑战了Covid-19作为一种短暂的呼吸道疾病的流行模式，这种疾病总是会带来经典的三重症状;进行并发表了同行评议的研究，以证实其多样化和长期的表现;并通过指导方针制定小组和政策工作组的经验获得了专家的地位。
Callard and Perego depict long Covid as the first illness to be defined by patients who came together on social media. Responding to their call to address why patients were so effective in making long Covid visible and igniting action to improve its care, we use narrative inquiry - a field of research that investigates the place and power of stories and storytelling. We analyse a large dataset of narrative interviews and focus groups with 114 people with long Covid (45 of whom were healthcare professionals) from the United Kingdom, drawing on socionarratology (Frank), therapeutic emplotment (Mattingly) and polyphonia (Bakhtin). We describe how storytelling devices including chronology, metaphor, characterisation, suspense and imagination were used to create persuasive accounts of a strange and frightening new condition that was beset with setbacks and overlooked or dismissed by health professionals. The most unique feature of long Covid narratives (in most but not all cases) was the absence, for various pandemic-related reasons, of a professional witness to them. Instead of sharing their narratives in therapeutic dialogue with their own clinician, people struggled with a fragmented inner monologue before finding an empathetic audience and other resonant narratives in the online community. Individually, the stories seemed to make little sense. Collectively, they provided a rich description of the diverse manifestations of a grave new illness, a shared account of rejection by the healthcare system, and a powerful call for action to fix the broken story. Evolving from individual narrative postings to collective narrative drama, long Covid communities challenged the prevailing model of Covid-19 as a short-lived respiratory illness which invariably delivers a classic triad of symptoms; undertook and published peer-reviewed research to substantiate its diverse and protracted manifestations; and gained positions as experts by experience on guideline development groups and policy taskforces.