Department of Occupation and Health, HAN University of Applied Sciences, PO Box 6960, 6503 GL, Nijmegen, The Netherlands,
J Occup Rehabil. 2014 Mar;24(1):52-67. doi: 10.1007/s10926-013-9447-8.
A qualitative study was carried out to understand how people with a slow progressive adult type neuromuscular disease (NMD) perceive employment participation.
16 paid employed persons with NMD were interviewed in open, in-depth interviews. Data were analyzed using the constant comparison method.
Four themes were identified in the analyses: (1) Experiences regarding the meaning of work; (2) Solving problems oneself; (3) Reaching a turning point; and (4) Taking into account environmental aspects. Persons with NMD highlighted benefits of staying at work as well as the tension they felt how to shape decisions to handle progressive physical hindrances in job retention. This study shows how participants at work with NMD were challenged to keep up appearances at work and at home, the tension felt around when and if to disclose, the effect of their condition on colleagues and work reorganisation challenges. Participants experienced that disclosure did not always make things better. With increasing disability participants' focus shifted from the importance of assistive products towards considerate colleague, in particular superior's willingness in supporting job retention.
Implications for health professionals might include awareness of the significant impact of changes in physical condition on employment. Timely communication and if appropriate referral to a health or occupational professional may empower employees with NMD to handle employment issues at a for themselves appropriate way. Assistive products and a supportive superior might enhance employment participation.
本研究开展了一项定性研究，旨在了解患有慢性进行性成人神经肌肉疾病（NMD）的患者如何看待参与就业。
对 16 名有偿就业的 NMD 患者进行了开放式深入访谈。使用恒定比较法对数据进行分析。
分析中确定了四个主题：（1）关于工作意义的经历；（2）自己解决问题；（3）转折点；和（4）考虑环境因素。NMD 患者强调了继续工作的好处，以及他们在保留工作时处理身体逐渐出现障碍的决策时感到的紧张。本研究表明，患有 NMD 的工作参与者面临着保持工作和家庭形象的挑战，围绕何时以及是否披露的紧张感，他们的病情对同事和工作重新组织的挑战的影响。参与者体验到披露并不总是会使事情变得更好。随着残疾程度的增加，参与者的关注点从辅助产品的重要性转移到了体贴的同事，特别是上级在支持保留工作方面的意愿。
对卫生专业人员的影响可能包括对身体状况变化对就业的重大影响的认识。及时的沟通，如果适当的话，向卫生或职业专业人员转介，可以使患有 NMD 的员工有能力以适合自己的方式处理就业问题。辅助产品和支持性上级可能会增强就业参与度。
