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理解系统性红斑狼疮对英国南亚人群工作的影响:一项探索性定性研究。

Understanding the impact of systemic lupus erythematosus on work amongst South Asian people in the UK: An explorative qualitative study.

机构信息

Institute of Clinical Sciences, University of Birmingham, Birmingham, UK.

University Hospitals Coventry, Coventry, UK.

出版信息

Lupus. 2021 Aug;30(9):1492-1501. doi: 10.1177/09612033211022816. Epub 2021 Jun 6.

Abstract

SLE has a range of fluctuating symptoms affecting individuals and their ability to work. Although South Asian (SA) patients are at increased risk of developing SLE there is limited knowledge of the impact on employment for these patients in the UK. Understanding ethnicity and disease-specific issues are important to ensure patients are adequately supported at work. Semi-structured interviews were conducted with patients of SA origin to explore how SLE impacted on their employment. Thematic analysis was used to analyse the data which are reported following COREQ guidelines. Ten patients (8 female; 2 male) were recruited from three rheumatology centres in the UK and interviewed between November 2019 and March 2020. Patients were from Indian (n = 8) or Pakistani (n = 2) origin and worked in a range of employment sectors. Four themes emerged from the data: (1) Disease related factors; (2) Employment related factors; (3) Cultural and interpersonal factors impacting on work ability; (4) Recommendations for improvement. Patients' ability to work was affected by variable work-related support from their hospital clinicians, low awareness of SLE and variable support from their employers, and cultural barriers in their communities that could affect levels of family support received. These findings highlight the need for additional support for SA patients with SLE in the workplace.

摘要

SLE 有一系列波动的症状影响个体及其工作能力。尽管南亚 (SA) 患者患 SLE 的风险增加,但人们对这些患者在英国的就业影响知之甚少。了解种族和疾病特异性问题对于确保患者在工作中得到充分支持非常重要。对来自 SA 的患者进行了半结构化访谈,以探讨 SLE 如何影响他们的就业。使用主题分析对数据进行了分析,这些数据是根据 COREQ 指南报告的。2019 年 11 月至 2020 年 3 月期间,从英国的三个风湿病中心招募了 10 名(8 名女性;2 名男性)具有 SA 血统的患者进行访谈。患者来自印度(n=8)或巴基斯坦(n=2),从事各种就业领域。数据中出现了四个主题:(1)疾病相关因素;(2)与就业相关的因素;(3)影响工作能力的文化和人际因素;(4)改进建议。患者的工作能力受到其医院临床医生提供的可变工作相关支持、对 SLE 的低认识和雇主提供的可变支持以及其社区中的文化障碍的影响,这些障碍可能会影响所获得的家庭支持水平。这些发现强调了需要在工作场所为患有 SLE 的 SA 患者提供额外支持。

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