对秘鲁妇女而言,纤维肌痛意味着什么?现象学研究

Consuelo Matilde Rivera-Miranda Giral , Rosa Jeuna Díaz-Manchay , Franco Ernesto León-Jiménez
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摘要

导言:纤维肌痛患者会持续感到疼痛,使人丧失工作能力。本研究的目的是描述纤维肌痛对秘鲁妇女的意义,以及纤维肌痛如何影响她们 2021 年的家庭、工作和社会生活。材料和方法本研究采用定性设计,采用现象学方法;滚雪球式抽样和理论饱和样本量;通过半结构式深度访谈对 10 名患者进行了访谈。结果共分为 12 个类别:纤维肌痛的含义、临床表现、并发症和后遗症、诊断过程、对工作的影响、对家庭生活的影响、对社会生活的影响、与医护人员接触的经历、从纤维肌痛中吸取的经验教训、教会支持以及关于纤维肌痛的神话、错误信息和偏见。结论纤维肌痛患者的经历和临床表现多种多样,家庭仍然是患者积极可靠的支持网络,但与社会和工作生活不同的是,家庭对患者缺乏主动性或同情心。根据我们的研究结果,我们期望医护人员和公众能够学习并超越 "病态 "或 "寻求关注者",从而改善患者的生活质量。
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What it means to live with fibromyalgia for Peruvian women: A phenomenological study

Introduction

Patients with fibromyalgia experience pain at a constant and incapacitating pace. It is still a complex entity yet to be fully understood but meanwhile affects patients in every aspect of their lives.

Objective

The purpose of this study is to describe what living with fibromyalgia means for Peruvian women and how it affects their family, work, and social lives in 2021.

Materials and methods

The study has a qualitative design with a phenomenological approach; snowball sampling and theoretical saturation sample size; 10 patients were interviewed through semi-structured in-depth interviews. An ideographic and a nomothetic analysis were conducted, divergences and convergences in the statements were sought and units of analysis were obtained.

Results

There were 12 categories: meaning of fibromyalgia, clinical picture, complications and sequelae, diagnostic process, impact on work, impact on family life, impact on social life, experience with health personnel, lessons learned from fibromyalgia, ecclesiastical support, and myths, misinformation, and prejudices about fibromyalgia.

Conclusion

The experiences and the clinical picture are diverse, the family remains an active and reliable support network for patients, unlike social and work lives, where there is a lack of initiative or empathy towards patients. In light of our findings, we expect healthcare workers and the public in general to learn and see beyond “just histrionics” or “attention seekers” and thus improve the patient's quality of life.

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