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为何如此忧郁?(或者我该说为何如此脸红?)认识银屑病对患者及其家庭成员的情感影响:一项定性研究。

Why so Blue? (Or Should I Say Red?) Recognizing the Emotional Impact of Psoriasis on Patients and Family Members: A Qualitative Study.

作者信息

Snyder Ashley M, Taliercio Vanina L, Rich Bianca E, Brandenberger Adelheid U, Webber Lisa B, Beshay Abram P, Biber Joshua E, Hess Rachel, Rhoads Jamie Lw, Secrest Aaron M

机构信息

Department of Dermatology, University of Utah, Salt Lake City, UT, USA.

Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA.

出版信息

J Psoriasis Psoriatic Arthritis. 2022 Apr;7(2):60-66. doi: 10.1177/24755303211069335. Epub 2022 Feb 11.

Abstract

Psoriasis is a chronic skin condition with significant effects on quality of life, including impacts on emotional health. However, these experiences are not always addressed in clinic visits, despite their potential for significant effects on daily life. This study is part of a larger project on the effects of psoriasis on quality of life. The current information was analyzed separately because the amount of information on emotional impacts mentioned by participants was so significant that it warranted a separate analysis to thoroughly assess these experiences. To describe emotional consequences of psoriasis for patients and their family members. This project was conducted at an academic medical center in Utah. Experiences were discussed in interviews and focus groups with 25 patients and 11 family members. Thematic analysis was used to determine themes and subthemes. This study sheds light on the damaging effects of psoriasis on emotional well-being, illustrating the challenges patients face from internal conflict, consequences for family members trying to cope with psoriasis in a loved one, and judgment from others who do not understand psoriasis and its challenges. Living with psoriasis leads to emotional consequences that may be left unaddressed in clinic visits, yet these experiences contribute significantly to quality of life. The stories told through this study can help clinicians understand how to identify and address emotional concerns to improve care for psoriasis patients and, as a result, improve quality of life for both patients and their families.

摘要

银屑病是一种慢性皮肤病,对生活质量有重大影响,包括对情绪健康的影响。然而,尽管这些经历可能对日常生活产生重大影响,但在临床就诊时并不总是得到关注。本研究是关于银屑病对生活质量影响的一个更大项目的一部分。由于参与者提到的情绪影响信息数量如此之多,以至于有必要进行单独分析以全面评估这些经历,因此对当前信息进行了单独分析。目的是描述银屑病对患者及其家庭成员的情绪影响。该项目在犹他州的一家学术医疗中心进行。通过与25名患者和11名家庭成员进行访谈和焦点小组讨论来探讨相关经历。采用主题分析法来确定主题和子主题。本研究揭示了银屑病对情绪健康的破坏性影响,说明了患者面临的来自内心冲突的挑战、试图应对亲人银屑病的家庭成员所面临的后果,以及来自不了解银屑病及其挑战的其他人的评判。患有银屑病会导致情绪后果,而这些后果在临床就诊时可能未得到解决,但这些经历对生活质量有重大影响。通过本研究讲述的故事可以帮助临床医生了解如何识别和解决情绪问题,以改善对银屑病患者的护理,从而提高患者及其家人的生活质量。

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本文引用的文献

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Psoriasis and Risk of Mental Disorders in Denmark.丹麦的银屑病与精神障碍风险。
JAMA Dermatol. 2019 Jun 1;155(6):745-747. doi: 10.1001/jamadermatol.2019.0039.

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