Embodied suffering: Uncovering the illness experiences of patients with severe psoriasis.

IF 1.9 4区医学 Q2 NURSING Scandinavian Journal of Caring Sciences Pub Date : 2024-09-27 DOI:10.1111/scs.13305

Lin-Lin Lee, An-Ping Huo, Shu-Ling Chen

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Abstract

Background: The visibility of skin lesions significantly burdens people with psoriasis, leading to social hostility and numerous emotional and psychological problems. These issues adversely affect self-esteem, can result in chronic mental health challenges and cause numerous life problems. This study aimed to explore patients' long-term experiences with severe psoriasis.

Methods: A qualitative study was conducted with 20 patients with psoriasis (PASI ≥12) recruited from general and specialist dermatology practices in a regional teaching hospital in Taiwan. Interviews lasted 60-90 min and data were analysed using content analysis.

Findings: A core theme emerged: 'Embodied suffering-life worse than death'. This overarching concept comprised three interrelated themes: (i) Experiencing physical suffering, (ii) Experiencing psychological suffering and (iii) Experiencing the stigma of suffering.

Conclusion: This study highlights the holistic nature of suffering among individuals with severe psoriasis. It emphasises the need for healthcare professionals to consider the entirety of a patient's circumstances when addressing their suffering.

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体现痛苦：揭示严重银屑病患者的疾病体验。

背景：银屑病患者的皮损很容易被人看到，这给他们带来了沉重的负担，导致他们对社会产生敌意，并产生许多情绪和心理问题。这些问题会对自尊心造成负面影响，导致长期的心理健康挑战，并造成许多生活问题。本研究旨在探讨严重银屑病患者的长期经历：这项定性研究从台湾一家地区教学医院的普通和专科皮肤科诊所招募了 20 名银屑病患者（PASI ≥12）。访谈持续 60-90 分钟，采用内容分析法对数据进行分析：出现了一个核心主题："体现的痛苦--生不如死"。这一总体概念包括三个相互关联的主题：(i) 体验身体上的痛苦；(ii) 体验心理上的痛苦；(iii) 体验痛苦的耻辱感：本研究强调了严重银屑病患者痛苦的整体性。结论：本研究强调了严重银屑病患者痛苦的整体性，并强调医护人员在处理患者痛苦时需要考虑患者的整体情况。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Scandinavian Journal of Caring Sciences NURSING-

CiteScore

4.60

自引率

5.30%

发文量

期刊介绍： Scandinavian Journal of Caring Sciences is an established quarterly, peer reviewed Journal with an outstanding international reputation. As the official publication of the Nordic College of Caring Science, the Journal shares their mission to contribute to the development and advancement of scientific knowledge on caring related to health, well-being, illness and the alleviation of human suffering. The emphasis is on research that has a patient, family and community focus and which promotes an interdisciplinary team approach. Of special interest are scholarly articles addressing and initiating dialogue on theoretical, empirical and methodological concerns related to critical issues. All articles are expected to demonstrate respect for human dignity and accountability to society. In addition to original research the Journal also publishes reviews, meta-syntheses and meta-analyses.