Dervish Jessica, Arfuch Victoria Mailen, Murley Chantelle, McKay Kyla A, Machado Alejandra, Wennman-Larsen Agneta, Friberg Emilie
Division of Insurance Medicine, Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden.
Psychiatry, Department of Medical Sciences, Uppsala University, Uppsala, Sweden.
Front Public Health. 2024 Feb 26;12:1331746. doi: 10.3389/fpubh.2024.1331746. eCollection 2024.
People with multiple sclerosis (PwMS) face health and social challenges of living with a chronic and potentially disabling condition. To disclose or conceal MS at work may critically affect individuals' work situation, career opportunities, and health. PwMS may experience a dilemma when assessing if the possible benefits of disclosing the diagnosis outweigh the possible risks. However, concealing in the long-term may have health implications and prevent opportunities for support and work adjustments. Few studies have examined what drives PwMS to disclose or conceal MS at work and the consequences of these ways of managing MS.
To explore the reasons PwMS report for disclosing and/or concealing their MS diagnosis in the workplace, as well as the consequences they have experienced.
A web-based survey of PwMS was conducted in 2021. All individuals aged 20-50 listed in the Swedish MS registry were invited to participate. The response rate was 52% and among these participants, 3,810 (86%) completed questions regarding workplace disclosure and/or concealment of MS. Free-text responses on these topics were analyzed using inductive content analysis.
It was common to disclose MS in the workplace (85%). Identified drivers for disclosure and concealment related to four categories: Work-related, Social, Personal and Circumstantial. Work-related drivers focused on employment or protecting one's career, and changing one's work situation versus maintaining it. Social drivers included the need for support, addressing or preventing stigma, and being considerate of others. Personal drivers were linked to moral values/personal beliefs and processing of the diagnosis. Circumstantial drivers related to involuntary or unforeseen events, timing factors, one's medical condition and external opinion/advice. Identified consequences for disclosure and concealment related to three categories: Work-life, Social, and Personal. Work-life consequences included work arrangements, and career opportunities. Social consequences were linked to MS awareness, stigma, interactions and social support, as well as dynamics of work relationships. Personal consequences involved levels of disease acceptance, and attitudes toward managing MS.
PwMS often described the question of disclosure as challenging and navigated it with caution, as both disclosure and concealment can yield favorable and unfavorable outcomes.
多发性硬化症患者（PwMS）面临着与慢性且可能致残疾病共存的健康和社会挑战。在工作中披露或隐瞒多发性硬化症可能会严重影响个人的工作状况、职业机会和健康。PwMS在评估披露诊断的潜在益处是否超过潜在风险时可能会陷入两难境地。然而，长期隐瞒可能会对健康产生影响，并阻碍获得支持和工作调整的机会。很少有研究探讨是什么促使PwMS在工作中披露或隐瞒多发性硬化症以及这些应对方式的后果。
探讨PwMS报告在工作场所披露和/或隐瞒其多发性硬化症诊断的原因，以及他们所经历的后果。
2021年对PwMS进行了一项基于网络的调查。邀请了瑞典多发性硬化症登记册中列出的所有20至50岁的个体参与。回复率为52%，在这些参与者中，3810人（86%）完成了关于工作场所披露和/或隐瞒多发性硬化症的问题。使用归纳式内容分析法对这些主题的自由文本回复进行了分析。
在工作场所披露多发性硬化症很常见（85%）。确定的披露和隐瞒的驱动因素与四类相关：工作相关、社会、个人和情境。工作相关驱动因素侧重于就业或保护自己的职业，以及改变与维持自己的工作状况。社会驱动因素包括需要支持、应对或防止污名化以及体谅他人。个人驱动因素与道德价值观/个人信念以及对诊断的处理有关。情境驱动因素与非自愿或不可预见的事件、时间因素、个人健康状况和外部意见/建议有关。确定的披露和隐瞒的后果与三类相关：工作生活、社会和个人。工作生活后果包括工作安排和职业机会。社会后果与对多发性硬化症的认识、污名化、互动和社会支持以及工作关系动态有关。个人后果涉及疾病接受程度以及对管理多发性硬化症的态度。
PwMS经常将披露问题描述为具有挑战性，并谨慎应对，因为披露和隐瞒都可能产生有利和不利的结果。
