在工作场所披露诊断:多发性硬化症患者的视角

L. Gill, S. Hynes
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引用次数: 4

摘要

背景:早期退出劳动力市场与多发性硬化症(MS)的诊断有关,其就业保留率也低于一般人群。尽管有法律要求,但工作场所对多发性硬化症患者的平等待遇尚未实现。在工作中披露多发性硬化症是必要的,以实现住宿,使就业保留。方法:一项解释性描述性研究探讨了参与者决定披露或不披露其多发性硬化症的诊断及其对工作参与和工作关系的影响。采用半结构化访谈法收集6名参与者的数据。结果:利用反思性分析方法,从数据中确定了三个主题:(a)住宿;(b)工作场所关系;(c)平衡工作和家庭生活。参与者在透露自己的诊断时有不同的经历。研究结果支持工作场所便利的实施,包括身体、认知和结构支持。隐瞒多发性硬化症与害怕职场污名化有关。结论:信息披露是多维的、主观的。它基于个人、系统和社会因素。本研究受限于参与者人数较少,并且在主题指南的创建中没有包括利益相关者。研究结果对那些支持多发性硬化症患者继续工作的人很重要。
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Disclosing a Diagnosis in the Workplace: Perspective of People With Multiple Sclerosis
Background: Early withdrawal from the workforce is associated with a diagnosis of multiple sclerosis (MS), with employment retention rates also lower than in the general population. Despite legal requirements, equality in the workplace for people with MS has not been achieved. Disclosure of multiple sclerosis at work is essential for the implementation of accommodations enabling employment retention. Method: An interpretive descriptive study explored participants’ decision to disclose or not disclose their diagnosis of multiple sclerosis and the implications this had on work participation and working relationships. Semistructured interviews were used to collect data from 6 participants. Results: Three themes were identified, using a reflective approach to analysis, from the data: (a) Accommodations; (b) Workplace Relationships; and (c) Balancing Work and Home Life. Participants had mixed experiences of disclosing their diagnosis. Findings supported the implementation of workplace accommodations including physical, cognitive, and structural supports. Concealment of MS was associated with fear of workplace stigmatisation. Conclusion: Disclosure is multidimensional and subjective. It is based on personal, systematic, and social factors. This study was limited by the small number of participants and not including stakeholders in the creation of the topic guide. The results are important for those involved in supporting people with multiple sclerosis to remain in the workplace.
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International Journal of Disability Management
International Journal of Disability Management Social Sciences-Health (social science)
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Voraussetzungen für eine erfolgreiche Implementierung Vorteile eines gelingenden DisAbility-Managements Interrelated Factors for Return to Work of Sick-Listed Employees in Sweden Disclosing a Diagnosis in the Workplace: Perspective of People With Multiple Sclerosis Mögliche Widerstände
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