Maria Giulia Marini, Alessandro Braga, Chiara Lattuada, Antonietta Cappuccio, Fabio Bianco Madau
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摘要

背景:Dimensione Sollievo(缓解之维)及其 Facebook 页面是一项以患者为中心、关注慢性疼痛的社交媒体计划。该平台为用户提供了有关慢性疼痛的准确资源,并为同行互动提供了一个虚拟空间--这对于通常缺乏适当认识的病症来说是至关重要的。本研究的主要目的是分析与未满足的需求相关的内容,其次是探讨叙事医学(NM)在这种社交交流形式中的作用:采用弗兰克、克莱因曼、劳纳分类法和伯尔尼的事务分析法等主题框架,对 2020 年至 2023 年期间 Facebook 页面上的帖子、回复和评论进行了分析。此外,还研究了语言风格、语义、词频和隐喻。通过 Nvivo 软件和 Microsoft Office 工具对叙述进行了分析:用户将 Facebook 页面视为一个安全的互动空间,在这里他们找到了理解和联系,这与他们在社区外的经历不同。虽然互动一般都很简短,但围绕用户认为不公正的问题,如医疗专业人员和家人不承认他们的病情,以及在获取福利方面遇到的挑战,互动却愈演愈烈。主题分析表明,最突出的主题是疾病层面,许多叙述表达了应对困难和缺乏进展:叙事医学(NM)工具的应用凸显了患者明确的和无意识的需求,如希望被倾听和认可。本研究首次探索了叙事医学在慢性疼痛中的应用潜力。通过知情调节实施叙事医学工具可以改变疼痛管理文化,改善治疗方法,提高社区的整体体验。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Exploring the language of chronic pain stories through a Facebook page. A qualitative study on narratives and unmet needs.

Background: Dimensione Sollievo (Dimension of Relief) and its Facebook page represent a patient-centered social media initiative focused on chronic pain. This platform provides users with accurate resources on chronic pain and offers a virtual space for peer interaction - a crucial aspect for a condition often lacking proper recognition. The study's primary objective was to analyze the content in relation to unmet needs, with a secondary objective to explore the role of narrative medicine (NM) in this form of social communication.

Methods: Posts, replies, and comments from the Facebook page between 2020 and 2023 were analyzed using thematic frameworks such as Frank, Kleinmann, Launer classifications, and Berne's transactional analysis. Language styles, semantics, word frequency, and metaphors were also examined. Narratives were analyzed through Nvivo software and Microsoft Office tools.

Results: Users embraced the Facebook page as a safe space for interaction, where they found understanding and connection, unlike their experiences outside the community. While interactions were generally brief, they intensified around issues where users perceived injustices, such as the lack of recognition of their condition by medical professionals and family, and challenges in accessing benefits. Thematic analysis revealed that the most prominent theme was the dimension of disease, with many narratives expressing difficulty coping and a lack of progress.

Conclusions: The application of narrative medicine (NM) tools highlights both explicit and unconscious patient needs, such as the desire to be heard and acknowledged. This study is the first to explore NM's potential in chronic pain. Implementing NM tools through informed moderation could transform pain management culture, improving treatment approaches and enhancing the overall community experience.

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