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Illness Narratives in Practice: Potentials and Challenges of Using Narratives in Health-related Contexts最新文献

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Pregnancy 2.0 怀孕2.0
Eleonora Massa, Valentina Simeoni
Based on the analysis of a corpus of 300 posts written on Facebook by 20 pregnant Italian women, this chapter discusses the role of this social network in structuring sharable and socially acceptable narratives of the complex human experience of pregnancy. First, pregnancy is defined as an exquisitely narrative phenomenon that stimulates intersubjective forms of construction and representation. Second, the structural peculiarities of Facebook as a narrative device are described. Finally, an analysis of the corpus is proposed that unfolds on three levels: a global narrative, a linguistic-rhetoric, and a socio-pragmatic one. Along with indications on the informative power such narratives may have for socio-anthropological and linguistic research, some first conclusions are proposed on the constructional power of the platform in shaping biographical experiences and producing pregnancy narratives that are partly similar, and partly different, from those of the offline culture.
基于对20名意大利孕妇在Facebook上发表的300篇帖子的分析,本章讨论了这个社交网络在构建可分享和社会可接受的复杂人类怀孕经历叙事中的作用。首先,怀孕被定义为一种精巧的叙事现象,刺激主体间的建构和表现形式。其次,描述了Facebook作为叙事工具的结构特点。最后,对语料库进行了三个层面的分析:全球叙事、语言修辞和社会实用主义。除了对这种叙事可能对社会人类学和语言学研究具有的信息力量的指示外,还提出了一些关于平台在塑造传记经历和产生与线下文化部分相似,部分不同的怀孕叙事方面的建构力量的初步结论。
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引用次数: 0
Choices of illness narratives in practice 实践中疾病叙述的选择
T. Meyer, Margret Xyländer
This chapter examines how which cases and parts of illness narratives are selected for a specific use in practice. It takes the perspective of qualitative researchers and apply ideas of sampling and generalizability to this question. It discusses the different types of sampling strategies in qualitative research and the relevance of each towards making generalization statements. It then reflects on the different roles that qualitative researchers might take in using illness narratives in practice, including the roles of agency or that the media might take. In light of these perspectives this chapter argues that decisions on how illness narratives are selected should be guided by the same rigour used in the conduct of a qualitative study. In short, criteria for their selection should be explicit and transparent.
本章探讨了在实践中如何选择哪些病例和部分疾病叙述用于特定用途。它从定性研究的角度出发,运用抽样和概括性的思想来研究这一问题。它讨论了定性研究中不同类型的抽样策略,以及每种抽样策略对泛化陈述的相关性。然后,它反映了定性研究人员在实践中使用疾病叙述时可能扮演的不同角色,包括代理或媒体可能扮演的角色。鉴于这些观点,本章认为,关于如何选择疾病叙述的决定应该由定性研究中使用的同样严格的指导。简言之,他们的选择标准应该是明确和透明的。
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引用次数: 1
Illness narratives in counselling—narrative medicine and narrative ethics 心理咨询中的疾病叙事——叙事医学与叙事伦理学
H. Haker
The attention to illness narratives echoes the narrative turn in the humanities. This chapter explores the implications of counselling and confronts the narrative medicine approach with the correlated, yet distinct, concept of narrative ethics. It considers ethics standards of counselling and, more specifically, models of decision-making that counsellors use as orientation and ethical guidelines. Narrative ethics is one way to bridge the experiences and value the moral norms that govern decision making. This chapter explores ways to integrate a narrative ethics approach as part of ethical counselling to ensure that both individual experiences and the normative dimensions of actions are included in the conversations. While non-directive counselling emphasizes the moral agency of the individual and calls for the respect of the client concerning their choices, the introduced model of decision making is better equipped to attend to the ethical dimension of counselling.
对疾病叙事的关注呼应了人文学科的叙事转向。本章探讨了咨询的含义,并将叙事医学方法与相关但不同的叙事伦理概念进行了比较。它考虑了咨询的道德标准,更具体地说,是咨询师用作指导和道德准则的决策模式。叙事伦理是连接经验的一种方式,并重视支配决策的道德规范。本章探讨了如何将叙事伦理方法作为道德咨询的一部分,以确保个人经历和行为的规范维度都包括在对话中。虽然非指导性咨询强调个人的道德能动性,并要求客户尊重他们的选择,但所引入的决策模型更能照顾到咨询的道德层面。
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引用次数: 0
The researchers’ role in re-constructing patient narratives to present them as patient experiences 研究人员的角色是重建病人的叙述,以呈现病人的经历
J. Koschack, W. Himmel
According to Arthur W. Frank, illness is a call for stories. It is widely accepted that a narrative approach in medicine improves health care outcomes and there is some evidence that listening to illness stories of others has a positive effect also on fellow patients. However, when researchers collect patient narratives and prepare them to be used by, and to help, patients or other sufferers, they may change the nature of the narratives. This chapter shows how illness narratives are arranged on DIPEx websites as short statements and summarized under certain topics—with the aim to represent the whole range of patient experiences. It then discusses why people may listen to patient experiences, for example, to make informed choices on the basis of evidence-based experiential information, and/or to use experiences of others as ‘companion stories’ to complete their own illness narrative and to give it a ‘gestalt’.
阿瑟·w·弗兰克认为,疾病呼唤故事。人们普遍认为,医学上的叙述方法可以改善医疗保健结果,有证据表明,倾听他人的疾病故事也对其他患者有积极影响。然而,当研究人员收集病人的叙述并准备供病人或其他患者使用和帮助时,他们可能会改变叙述的性质。本章展示了疾病叙述是如何在DIPEx网站上以简短陈述的形式排列的,并在某些主题下进行了总结,目的是代表患者经历的整个范围。然后讨论了为什么人们会倾听病人的经历,例如,在基于证据的经验信息的基础上做出明智的选择,和/或使用他人的经历作为“伴侣故事”来完成自己的疾病叙述,并给它一个“完形”。
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引用次数: 0
How to use illness narratives in medical education 如何在医学教育中运用疾病叙事
A. Palant, W. Himmel
To be effective, (future) clinicians should gain an understanding of patients’ perspectives when it comes to having an illness. How patients experience their illness is best represented in illness narratives. Such illness narratives can be found on the website www.krankheitserfahrungen.de—the German version of the international DIPEx websites. This chapter discusses a pilot study of a teaching unit developed using website videos of illness narratives from patients with type 2 diabetes regarding weight loss. It discusses the aim of this pilot, which was to teach medical students to identify different subjective views of, and reactions towards, the pressure to give up a previous lifestyle. It investigates how, while students and the teacher appreciated the exercise and learned to better understand the patients’ perspective from illness narratives, the external conditions seem to be the main challenge for patients who need to implement lifestyle changes.
为了更有效,(未来的)临床医生应该了解患者对疾病的看法。病人如何经历他们的疾病在疾病叙述中得到了最好的体现。这些疾病的叙述可以在网站www.krankheitserfahrungen.de上找到,这是国际DIPEx网站的德国版本。本章讨论了一个教学单元的试点研究,该教学单元使用了2型糖尿病患者关于减肥的疾病叙述的网站视频。它讨论了这个试点的目的,这是教医学生识别不同的主观观点,以及对压力的反应,放弃以前的生活方式。它调查了学生和老师如何欣赏这项运动,并学会更好地从疾病叙述中理解患者的观点,外部条件似乎是需要改变生活方式的患者的主要挑战。
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引用次数: 0
What’s in a name? 名字里有什么?
C. Holmberg
There is a push in healthcare delivery for patients to base their treatment decisions on ‘evidence’ rather than ‘anecdotes’, a term used for individual experiences, and that devalues their epistemological grounding of an individual’s experiences in comparison to statistically-derived scientific knowledge. This chapter discusses how the profound differences between these different forms of knowledge can be teased out through the lens of phenomenological scholars and an investigation of experience and storytelling. It covers how treatment decisions are characterized by choices, of which one is not necessarily superior to another, but rather all are characterized by different risks and benefits, and that such treatment decisions work in the subjunctive mode and as such are inherently narratively structured. Healthcare decision making is about finding a plot. Thus, this chapter explores how helping patients to make ‘better’ decisions may necessitate presenting storylines in which future outcomes are envisioned that take both the intersubjective knowledge of the patient and the scientific knowledge of epidemiology into account.
在医疗保健服务中,有一种推动病人基于“证据”而不是“轶事”来决定他们的治疗决定,“轶事”是一个用于个人经验的术语,与统计衍生的科学知识相比,这降低了他们对个人经验的认识论基础。本章讨论了如何通过现象学学者的视角以及对经验和叙事的调查来梳理这些不同形式的知识之间的深刻差异。它涵盖了治疗决策是如何以选择为特征的,其中一个不一定优于另一个,而是所有的治疗决策都有不同的风险和收益,这些治疗决策在虚拟模式下起作用,因此本质上是叙事结构。医疗保健决策是关于找到一个情节。因此,本章探讨了如何帮助患者做出“更好”的决定,可能需要呈现故事情节,其中考虑到患者的主体间知识和流行病学的科学知识,设想未来的结果。
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引用次数: 1
When public and private narratives diverge 当公共和私人叙述出现分歧时
Rachel Grob, M. Schlesinger
Individuals experience illness and healthcare in diverse ways. Advocates striving to create system change, however, typically simplify representations of patient experience. These ‘crafted’ public narratives better accord with journalists’ ideals of compelling, coherent, attention-grabbing stories. But condensing diverse experiences into univocal narratives has costs: some patients’ voices are silenced, and vital ethical issues are overlooked. This chapter uses a case study of advocacy around newborn screening (NBS) to explore the origins and implications of crafted public narratives. It traces the emergence of a single ‘urgency narrative’ used by advocates to promote expanded screening and compares its impact on media coverage and policy-making across the United States and among five English-speaking nations. It shows that crafted narratives are most influential in countries where NBS policies are set subnationally, since geographic variation both fosters advocates’ search for compelling narratives and makes those narratives more evocative, enhancing their impact on policy-making.
每个人都以不同的方式经历疾病和保健。然而,努力创造系统变革的倡导者通常简化了对患者体验的表述。这些“精心制作”的公共叙事更符合记者追求引人入胜、连贯一致、引人注目的故事的理想。但是,将不同的经历浓缩成单一的叙述是有代价的:一些病人的声音被压制了,重要的伦理问题被忽视了。本章使用一个围绕新生儿筛查(NBS)倡导的案例研究来探讨精心制作的公共叙事的起源和影响。它追溯了倡导者用来推动扩大筛查的单一“紧急叙事”的出现,并比较了它对美国和五个英语国家的媒体报道和政策制定的影响。研究表明,精心制作的叙事在国家统计局政策在次国家层面制定的国家最有影响力,因为地理差异既促进了倡导者寻找令人信服的叙事,又使这些叙事更能唤起人们的共鸣,从而增强了它们对政策制定的影响。
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引用次数: 0
Using narratives for medical humanities in medical training 医学人文叙事在医学培训中的应用
A. Kiss, C. Steiner
The University of Basel, Switzerland has developed a longitudinal medical humanities curriculum based on illness narratives and narrative medicine. The ultimate learning goal of medical humanities as taught in Basel is to foster narrative competence. A good doctor needs to be a good listener, a good storyteller, and should ideally be able to co-create an illness narrative together with a patient. Medical humanities consist of mandatory and optional elements. Blending evidence-based medicine, which is based on larger numbers of patients with similar characteristics, with narrative-based medicine, which is based on patients’ uniqueness, this programme provides medical students with the opportunity to develop and practice narrative medicine over the course of the six years of medical studies. This chapter discusses the programme and its place in medical education.
瑞士巴塞尔大学开发了一门基于疾病叙事和叙事医学的纵向医学人文课程。巴塞尔大学教授的医学人文学科的最终学习目标是培养叙事能力。一个好的医生应该是一个好的倾听者,一个好的讲故事者,理想情况下应该能够与病人共同创造一个疾病叙述。医学人文包括必修和选修两部分。该方案将基于大量具有相似特征的患者的循证医学与基于患者独特性的叙事医学相结合,为医科学生提供了在六年医学学习过程中发展和实践叙事医学的机会。本章讨论该方案及其在医学教育中的地位。
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引用次数: 0
The ‘narrative spirit’ “叙事精神”
Yeonok Jeoung, G. Lucius-Hoene, Y. I. Bak
Recent studies in Korea show that doctors have suffered a severe loss of image among their patients, due to their authoritarian, unempathic, and unfriendly communication behaviour. These findings were confirmed by studies of their communication styles done with conversation analysis. Training courses for medical students in doctor–patient communication have become mandatory, but are short and to date have provided no significant change; the ethical foundations of doctors when dealing with patients remained untouched. This chapter explores how the humanistic concepts of narrative medicine and can provide better understanding between doctors and patients. This ‘narrative spirit’ resonates with traditional values of Buddhism and Confucianism that are deeply rooted in Korean culture. It discusses a training programme for doctors working with text analysis of narrative interviews of patients’ illness experiences and shows how using patients’ stories may evoke this ‘narrative spirit’ and combine traditional ethical values with modern medical education.
韩国最近的研究表明,由于医生的专制、冷漠和不友好的沟通行为,他们在病人中遭受了严重的形象损失。这些发现在对他们的沟通方式进行的谈话分析研究中得到了证实。医学生的医患沟通培训课程已成为强制性课程,但课程较短,迄今没有显著变化;医生在治疗病人时的伦理基础没有受到影响。本章探讨了叙事医学的人文主义理念,以及如何在医患之间提供更好的理解。这种“叙事精神”与深深植根于韩国文化的佛教和儒家传统价值观产生了共鸣。它讨论了为从事病人疾病经历叙述性访谈文本分析工作的医生提供的培训计划,并展示了如何利用病人的故事唤起这种“叙事精神”,并将传统的伦理价值观与现代医学教育结合起来。
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引用次数: 0
Illness narratives in political communication 政治传播中的疾病叙事
Matthias Bandtel
This chapter explores political actors’ illness accounts published in the media. Until recently, politicians’ health conditions have been a prominent topic in political discussions and electoral campaigns. This broad interest relates to the multiple functions of the body in political contexts. This chapter discusses the links between individual forms of body presentation and institutional representation. It also covers a discourse-analytical case study that examines the illness narratives of two German state ministers and reveals the highly normative expectations regarding body presentations in the field of politics. On the one hand, the illness is portrayed as an excuse for political failures. On the other hand, political bodies are constructed that gain additional competences through the illness experience. Furthermore, political actors’ mediated illness narratives transfer societal problems of power and control to the site of individual bodies. Finally, it addresses how political processes become tangible for wider audiences, which is crucial for contemporary media societies.
本章探讨了媒体上发表的政治演员的疾病描述。直到最近,政治家的健康状况一直是政治讨论和竞选活动中的一个突出话题。这种广泛的兴趣涉及该机构在政治背景下的多种职能。本章讨论个体身体呈现形式与机构呈现形式之间的联系。它还涵盖了一个话语分析案例研究,研究了两位德国国务部长的疾病叙述,并揭示了政治领域中关于身体呈现的高度规范的期望。一方面,这种疾病被描绘成政治失败的借口。另一方面,政治机构的构建通过疾病经验获得了额外的能力。此外,政治行为者介导的疾病叙事将权力和控制的社会问题转移到个人身体的位置。最后,它讨论了政治进程如何对更广泛的受众变得有形,这对当代媒体社会至关重要。
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Illness Narratives in Practice: Potentials and Challenges of Using Narratives in Health-related Contexts
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