Lived Employment Experiences of Young Adults With Childhood- and Adult-Onset Systemic Lupus Erythematosus: A Multicenter Canadian Qualitative Study.

IF 3.7 2区 医学 Q1 RHEUMATOLOGY
Michael A Golding, Fareha Nishat, Kaitlyn A Merrill, Diane Lacaille, Umut Oğuzoğlu, Jennifer L P Protudjer, Roberta L Woodgate, Jennifer N Stinson, Christine Peschken, Zahi Touma, Lily Siok Hoon Lim
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Abstract

Objective: This study examined the lived employment experiences of young adults with childhood- and adult-onset systemic lupus erythematosus (SLE).

Methods: Participants were recruited from three Canadian lupus clinics and asked to complete semistructured, qualitative video/phone interviews. Interviews were transcribed verbatim and analyzed using thematic analysis. Participants were recruited until consolidated thematic saturation.

Results: Twenty-one participants (median age: 27 years)-14 woman, 5 men, and 2 gender-nonconforming individuals-were included. Thirty-eight percent had childhood-onset SLE. Seventy-one percent of the participants were employed, 19% were looking for work, and 10% were not working and not looking for work. Qualitative analysis revealed two themes. 1) "Maintaining control internally and externally": Participants described how the ability to exercise control over their symptoms (internally) and their job (externally) allowed them to gain and maintain employment. 2) "Tough choices: Health, then work and everything else": Participants described challenges in maintaining a balance among their health, other social responsibilities, and work because of their SLE-related limitations. Within this theme, participants also offered advice on how others could best manage the conflicting demands on their time and energy, which was summarized in a subtheme called "Recommendations for others-'take care of yourself first.'" CONCLUSION: When faced with the competing demands of their health (managing their SLE) and work, many young adults with SLE choose to prioritize their health, sacrificing their work or social responsibilities. Efforts aimed at promoting the employment success of young adults with SLE should inform individuals of these challenges and offer potential coping strategies.

儿童期和成年期系统性红斑狼疮青年的生活就业经历:一项多中心的加拿大定性研究。
目的:本研究考察了儿童期和成年期系统性红斑狼疮(SLE)青年的生活就业经历。方法:参与者从三家加拿大狼疮诊所招募,并要求完成半结构化定性视频/电话访谈。访谈内容逐字记录,并采用专题分析进行分析。参加者一直征聘到专题饱和为止。结果:21名参与者(中位年龄:27岁):14名女性,5名男性和2名性别不符合者。38%的患者患有儿童期SLE。71%的参与者有工作,19%的人在找工作,10%的人没有工作也没有找工作。定性分析揭示了两个主题:1。“保持内部和外部控制”:参与者描述了对其症状(内部)和工作(外部)进行控制的能力如何使他们获得并保持就业。2. “艰难的选择:健康,然后是工作和其他一切”:参与者描述了由于他们的健康相关限制,在保持健康、其他社会责任和工作之间的平衡方面面临的挑战。在这个主题中,与会者还就其他人如何最好地管理时间和精力的冲突需求提出了建议,这些建议被总结为一个名为“给他人的建议- ‘首先照顾好自己’”的子主题。结论:当面对健康(控制SLE)和工作的竞争需求时,许多SLE青年患者选择优先考虑健康,牺牲工作或社会责任。旨在促进年轻SLE患者就业成功的努力应该告知个体这些挑战,并提供潜在的应对策略。
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
CiteScore
9.40
自引率
6.40%
发文量
368
审稿时长
3-6 weeks
期刊介绍: Arthritis Care & Research, an official journal of the American College of Rheumatology and the Association of Rheumatology Health Professionals (a division of the College), is a peer-reviewed publication that publishes original research, review articles, and editorials that promote excellence in the clinical practice of rheumatology. Relevant to the care of individuals with rheumatic diseases, major topics are evidence-based practice studies, clinical problems, practice guidelines, educational, social, and public health issues, health economics, health care policy, and future trends in rheumatology practice.
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