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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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An illness narrative or a social injustice narrative? 是疾病叙事还是社会不公叙事?
Maya Lavie-Ajayi, Ora Nakash
This chapter discusses the difficulty faced by therapists when, instead of a story of emotional problems, they are presented in the course of a professional consultation with a narrative about social injustice. The chapter includes a detailed analysis of a single intake session and subsequent post-intake interviews, taken from a large study on intakes in mental health clinics with culturally diverse populations in Israel. The client–subject of this chapter presented herself to a mental health facility, claiming a state of crisis due to the downgrading of her employment status, which she attributed to systematic corporate injustice. During the intake interview, there were a number of disagreements between the client and the therapist. While the client sought to relate a narrative of injustice, the therapist insisted on identifying an illness narrative. This chapter argues that the battle of narratives is a political battle, and highlights the political power wielded by therapists in defining diagnoses and treatment recommendations.
本章讨论了治疗师在专业咨询过程中所面临的困难,而不是情感问题的故事,而是关于社会不公正的叙述。本章详细分析了一次治疗过程和随后的治疗后访谈,这些访谈摘自一项关于以色列不同文化人群心理健康诊所治疗情况的大型研究。本章的当事人到一家精神病院就诊,声称自己处于危机状态,因为她的就业地位被降级,她认为这是公司系统性的不公正造成的。在接受面谈的过程中,来访者和治疗师之间存在许多分歧。当来访者试图将不公正的叙述联系起来时,治疗师坚持要确定疾病的叙述。本章认为,叙事之战是一场政治之战,并强调了治疗师在定义诊断和治疗建议方面所掌握的政治权力。
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引用次数: 0
Narratives in decision aids 辅助决策的叙述
Victoria A. Shaffer, B. Zikmund‐Fisher
This chapter maintains that while narratives should be used carefully in health communication, arguments in favour of their use outweigh concerns. The use of narratives in patient decision aids is controversial because of their persuasive power, ability to bias medical decisions, and tendency to proliferate the spread of misinformation. However, this chapter argues that: 1) didactic and statistical information alone are not enough to combat major public health issues; 2) narratives are also an important way that people make sense of data; and 3) narratives provide important contextual information that is essential for decision making. This chapter provides a blueprint for how narratives should be used in public health communications and discusses which narratives would be most efficacious. Finally, this chapter makes the case for a new, integrative model that respects the complementary roles of both data and narrative communications in the design of health communications.
本章认为,虽然在卫生传播中应谨慎使用叙述,但赞成使用叙述的理由大于担忧。叙述在患者决策辅助中的使用是有争议的,因为它们具有说服力,有可能使医疗决策产生偏见,并有扩散错误信息的倾向。然而,本章认为:1)仅靠教学和统计信息不足以解决重大公共卫生问题;2)叙述也是人们理解数据的重要方式;3)叙述提供了重要的上下文信息,这对决策至关重要。本章为如何在公共卫生传播中使用叙述提供了蓝图,并讨论了哪种叙述最有效。最后,本章提出了一种新的综合模式,该模式尊重数据传播和叙事传播在健康传播设计中的互补作用。
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引用次数: 1
Using illness narratives in clinical diagnosis 在临床诊断中运用疾病叙述
E. Gülich
This chapter argues that illness narratives are a suitable instrument for differential diagnosis in practice. The study discussed is based on a corpus of doctor–patient interactions, i.e., encounters with patients suffering from epileptic or non-epileptic seizures and/or anxiety disorders, and for most of whom differential diagnosis is very difficult. The basic assumption put forward here is that the types of narrative can give clues to identify the types of seizures or attacks. The focus is on the ‘methods’ patients use in verbalizing the ‘auras’ preceding the seizures and the course of the seizures or attacks themselves. In particular, it pays attention to the procedures of resolving difficulties of verbalization, which occur during the production of the narrative. It demonstrates that preferences in the choice of narrative techniques allow a distinction between patients with epileptic seizures and patients with other types of fits or with panic attacks. Finally it suggests that knowledge of recurrent narrative patterns can help to recognize the syndrome presented, on condition that the doctor encourages narrative reconstructions and listens carefully.
本章认为,疾病叙述是一个合适的工具,为鉴别诊断在实践中。所讨论的研究是基于医患互动的语料库,即与患有癫痫或非癫痫发作和/或焦虑症的患者的接触,对其中大多数人来说,鉴别诊断非常困难。这里提出的基本假设是,叙述的类型可以为识别癫痫发作或发作的类型提供线索。重点是患者在描述癫痫发作前的“预兆”和癫痫发作或发作本身的过程时使用的“方法”。它特别关注在叙事生产过程中出现的言语化困难的解决过程。它表明,在选择叙述技巧方面的偏好允许区分癫痫发作患者和其他类型的发作或惊恐发作患者。最后,它表明,了解反复出现的叙事模式可以帮助识别所呈现的综合症,条件是医生鼓励叙事重建并仔细倾听。
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引用次数: 0
Stories, illness, and narrative norms 故事、疾病和叙事规范
L. Hydén
Collecting illness narratives has become an established way to explore illness experiences. Often both collecting and analysing illness narratives are based on taken for granted narrative norms about how a narrative should look in order to be counted as a narrative and as researchable. Autobiographical illness stories are for instance generally supposed to be coherent and true. Many persons, especially with neurocognitive disorders, have problems living up to and adhere to these narrative norms, thus telling stories that risk being considered as non-stories or as incoherent and fragmented stories. A number of examples of conflicts between narrative norms and illness stories will be discussed. In conclusion, it is argued that researchers must use data collecting methods as well as analytical strategies that allow for alternative ways of telling stories.
收集疾病叙事已经成为一种探索疾病经历的既定方式。通常,收集和分析疾病叙述都是基于理所当然的叙述规范,即叙述应该如何被视为叙述并具有可研究性。例如,自传式疾病故事通常被认为是连贯和真实的。许多人,特别是患有神经认知障碍的人,在遵守和坚持这些叙事规范方面存在问题,因此,他们讲述的故事有可能被视为非故事或不连贯和支离破碎的故事。将讨论一些叙述规范和疾病故事之间冲突的例子。总之,研究人员必须使用数据收集方法和分析策略,允许以其他方式讲述故事。
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引用次数: 1
Engaging the vulnerable encounter 让脆弱的相遇
Chris Heape, H. Larsen, Merja Ryöppy
This chapter describes how improvised participatory theatre can be used to encourage change in professional healthcare practice. It focuses on chronic pain, with a brief example from another healthcare project. The principal interest is to demonstrate how theatre processes, for the most carried out as participatory workshops, can be used to explore and influence healthcare practice. The chapter shows how health and illness narratives can be considered temporal, improvised, and performative phenomena that are narrated to life through actual practice. The idea is that narratives of practice emerge from the dynamic, moment-to-moment, and reflexive engagement with actual practice rather than as idealized or generalized accounts about practice. The emphasis is therefore on engendering narratives of practice as a narrating-between-people in a situation as opposed to considering narratives as after-the-fact accounts.
本章介绍了如何利用即兴参与式戏剧鼓励改变专业医疗实践。它以慢性疼痛为重点,并以另一个医疗保健项目为例。本章的主要目的是展示如何利用参与式工作坊的戏剧过程来探索和影响医疗保健实践。本章展示了如何将健康和疾病叙事视为临时的、即兴的和表演性的现象,并通过实际操作将其叙述为生活。本章的观点是,实践叙事产生于对实际实践的动态、即时和反思性参与,而不是对实践的理想化或概括性描述。因此,重点在于将实践叙事作为一种情境中人与人之间的叙事,而不是将叙事视为事后的叙述。
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引用次数: 0
Illness narratives as evidence for healthcare policy 疾病叙述作为医疗保健政策的证据
S. Law, Ilja Ormel, David Loutfi, J. Lavis
Individual narratives about patient/family experiences of illness, and needs for information and support, can exert a powerful influence on policy formulation, particularly when a sensational story captures the attention of the media or general public. In this chapter, we situate the use and potential value of the narrative evidence within the messy world of policy making when trying to privilege evidence that brings diversity of voice and experiences on a topic, rather than individual stories. We explore the challenges associated with this type of experiential evidence, and the gap in translating such evidence to decision makers. We argue that both researchers and policy makers would benefit from a deeper understanding of each other’s worlds, and present examples of strategies to bridge this gap. We conclude by offering advice for policy makers regarding communication of their needs for experiential evidence, and advice for qualitative researchers regarding the translation of narrative-based findings for policy.
关于患者/家庭疾病经历的个人叙述以及对信息和支持的需求,可以对政策制定产生强大的影响,特别是当一个耸人听闻的故事引起媒体或公众的注意时。在本章中,我们将叙述性证据的使用和潜在价值置于混乱的政策制定世界中,当我们试图赋予证据特权时,这些证据会带来关于一个主题的多样性声音和经验,而不是单个故事。我们探讨了与这类经验证据相关的挑战,以及将这些证据转化为决策者的差距。我们认为,研究人员和政策制定者都将受益于对彼此世界的更深入了解,并提出了弥合这一差距的策略示例。最后,我们为政策制定者提供了关于沟通他们对经验证据需求的建议,并为定性研究人员提供了关于将基于叙述的发现转化为政策的建议。
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引用次数: 0
Changes in authenticity 真实性的变化
E. Miller, A. Fleischmann
The use of medications for attention deficit hyperactivity disorder (ADHD) has been strongly debated because medications may alter the individual’s sense of authenticity. This chapter examines online forums that include young people’s experiences with ADHD medications, their sense of control over medication use, and the drugs’ effects on their sense of authenticity. It discusses the analysis of four Internet forums dedicated to ADHD issues using an ethnographic-discursive approach, and demonstrates that the results suggest there are two types of competing narratives—those of the young people, who express doubts about taking medications due to their effect on various psychological characteristics and especially on their sense of authenticity, and those of professionals, who uphold the medical perspective that regardless of the medications’ effects they are still the best option for treating ADHD. It covers how the clash between these two competing narratives resonates a more general struggle of people with disabilities for their rights. Finally, it discusses how social media echoes the struggle between individuals with disabilities and the establishment’s view of ADHD as a medical condition which should be treated accordingly, even at the cost of losing the individual’s authenticity.
使用药物治疗注意力缺陷多动障碍(ADHD)一直备受争议,因为药物可能会改变个人的真实感。这一章检查了在线论坛,包括年轻人对多动症药物的经历,他们对药物使用的控制感,以及药物对他们真实性的影响。它讨论了四个专门讨论多动症问题的互联网论坛的分析,使用了民族志话语的方法,并表明结果表明有两种相互竞争的叙述:一种是年轻人,他们对服用药物表示怀疑,因为它们对各种心理特征的影响,尤其是对他们的真实性的影响;另一种是专业人士。他们坚持医学观点,不管药物的效果如何,它们仍然是治疗多动症的最佳选择。它涵盖了这两种相互竞争的叙述之间的冲突如何引起残疾人争取权利的更普遍斗争的共鸣。最后,它讨论了社交媒体是如何回应残疾人士和机构之间的斗争的,他们认为ADHD是一种医学疾病,应该得到相应的治疗,即使以失去个人的真实性为代价。
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引用次数: 0
Illness narratives in practice 实践中的疾病叙事
G. Lucius-Hoene, M. Breuning, C. Helfferich
Illness narratives—first-person stories about experiences with illness—have become highly popular as research data and as practical instruments, and are used and exploited in many health-related contexts. However, their epistemological properties and problems concerning the relation of their content to events and realities are often neglected when these stories are taken as direct representations of what happened. This chapter exposes why the reflection of these properties and their relation to their use in research or practical contexts is crucial. It expands on three different approaches of handling the epistemological and methodical questions: a ‘naturalistic’ approach, an experiential approach, and a performative approach. Each approach demands different criteria and guidelines to deal with the questions of truth or authenticity as well as with the observance of their context of origin according to the purposes users have in mind.
疾病叙事——关于患病经历的第一人称故事——已经成为非常流行的研究数据和实用工具,并在许多与健康相关的环境中被使用和利用。然而,当这些故事被视为对所发生事件的直接表征时,它们的认识论性质和关于其内容与事件和现实的关系的问题往往被忽视。本章揭示了为什么这些属性的反映及其在研究或实际环境中的使用关系是至关重要的。它扩展了处理认识论和方法问题的三种不同方法:“自然主义”方法,经验方法和行为方法。每一种方法都需要不同的标准和准则来处理真实或真实的问题,并根据用户所考虑的目的遵守其起源背景。
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引用次数: 2
Retelling one’s life story—how narratives improve quality of life in chronic language impairment 复述一个人的生活故事——叙述如何提高慢性语言障碍患者的生活质量
S. Corsten, Friedericke Hardering
Recent research in the field of narrative-based medicine has investigated the effectiveness of using illness narratives to stimulate coping processes. This chapter examines the utilization of the narrative approach in treating persons with aphasia—a neurological language disorder—many of whom experience reduced social participation and a change in identity. Although life-story work can support processes of sense-making, only a few studies use a biographic–narrative approach in aphasic patients due to their impaired language abilities. The chapter describes an adapted biographic-narrative intervention developed to assist with identity renegotiation and social participation. In order to show the benefits associated with the intervention and how the participants’ sense of self changed through the approach, the chapter examines a study with 27 aphasic people. It covers how the findings provide foundations for future work using biographic–narrative interventions to influence quality of life and identity renegotiation in people with chronic diseases.
最近在基于叙事的医学领域的研究已经调查了使用疾病叙事来刺激应对过程的有效性。本章探讨了叙事方法在治疗失语症患者中的应用,失语症是一种神经语言障碍,其中许多人经历了社会参与减少和身份改变。虽然生活故事的工作可以支持理解的过程,但由于失语症患者的语言能力受损,只有少数研究使用传记叙事的方法。本章描述了一种改编的传记叙事干预,旨在帮助身份重新谈判和社会参与。为了展示与干预相关的好处,以及参与者如何通过这种方法改变自我意识,本章检查了一项对27名失语症患者的研究。它涵盖了这些发现如何为未来的工作提供基础,使用传记叙事干预来影响慢性病患者的生活质量和身份重新协商。
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引用次数: 1
Understanding and using health experiences to improve healthcare—examples from the United Kingdom 理解和利用卫生经验改善卫生保健——来自英国的例子
L. Hinton, L. Locock, S. Ziebland
This chapter explores the variety of ways in which people’s narrative accounts of their health experiences can be harnessed to inform practice, service development, and health policy, as well as a more traditional research agenda. The case has been made that collecting data on patient experience as an activity in isolation is not enough. Health experiences should be used to improve care. But what are the most effective ways to achieve this? This chapter presents examples of projects conducted in the United Kingdom where patient narratives collected as part of the Healthtalk project (www.healthtalk.org) were used for health service improvement. Examples include secondary analysis, and co-design projects using experience based co-design and an accelerated approach to co-design.
本章探讨了人们对其健康经历的叙述可以用来为实践、服务发展和卫生政策以及更传统的研究议程提供信息的各种方式。有人认为,孤立地收集患者经验数据是不够的。卫生经验应用于改善护理。但实现这一目标的最有效方法是什么?本章介绍了在联合王国开展的一些项目的例子,这些项目将作为健康对话项目(www.healthtalk.org)的一部分收集的病人叙述用于改善保健服务。例子包括二次分析,以及使用基于经验的协同设计和加速协同设计方法的协同设计项目。
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引用次数: 1
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Illness Narratives in Practice: Potentials and Challenges of Using Narratives in Health-related Contexts
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