Meide Hanneke van der, Gorp Dennis van, van der Hiele Karin, Visser Leo
a Department of Neurology , Elisabeth-Tweesteden Hospital , Tilburg , the Netherlands.
b Department of Care Ethics , University of Humanistic Studies , Utrecht , the Netherlands.
Disabil Rehabil. 2018 Oct;40(21):2545-2552. doi: 10.1080/09638288.2017.1342278. Epub 2017 Jun 22.
The aim of this study was to gain insight into the meaning of work in the everyday lives of people with relapsing-remitting multiple sclerosis, and the barriers and facilitators to staying in work.
Nineteen employed adults diagnosed with relapsing-remitting multiple sclerosis participated in narrative interviews. All interviews were transcribed and coded for thematic analysis.
For people with relapsing-remitting multiple sclerosis, continuing to work was a precarious balancing act. Five themes influenced this balance: becoming familiar with the disease, adjusting expectations, having an understanding and realistic line manager, seeing work as meaningful life activity and strategic considerations.
People receiving a diagnosis of relapsing-remitting multiple sclerosis have to refamiliarize themselves with their own body in a meaningful way to be able to continue their work. Rehabilitation professionals can support them herein by taking into account not merely functional capabilities but also identity aspects of the body. Medication that stabilizes symptoms supports making the necessary adjustments. A trusting relationship with the line manager is vital for this adaptation process. Additionally, a match between being adequately challenged by work, while still having the capacity to meet those work demands, is needed, as is long-term financial stability. Implications for rehabilitation Rehabilitation professionals can support employees with relapsing-remitting multiple sclerosis by taking into account not merely functional capabilities but also identity aspects of the body. A trusting relationship with the line manager, including a timely disclosure of the diagnosis, is vital for people with relapsing-remitting multiple sclerosis to remain at work. For people with relapsing-remitting multiple sclerosis, there is a delicate balance between being adequately challenged by work while still having the capacity to meet work demands.
本研究旨在深入了解复发缓解型多发性硬化症患者日常生活中工作的意义，以及继续工作的障碍和促进因素。
19名被诊断为复发缓解型多发性硬化症的在职成年人参与了叙事访谈。所有访谈均进行了转录并编码以进行主题分析。
对于复发缓解型多发性硬化症患者而言，继续工作是一种不稳定的平衡行为。五个主题影响了这种平衡：熟悉疾病、调整期望、拥有理解且现实的直属上级、将工作视为有意义的生活活动以及战略考量。
被诊断为复发缓解型多发性硬化症的患者必须以有意义的方式重新熟悉自己的身体，以便能够继续工作。康复专业人员在此方面可以提供支持，不仅要考虑功能能力，还要考虑身体的身份层面。稳定症状的药物有助于做出必要的调整。与直属上级建立信任关系对这一适应过程至关重要。此外，工作提出的挑战要适度，同时员工仍有能力满足这些工作要求，并且需要长期的财务稳定。对康复的启示康复专业人员可以通过不仅考虑功能能力，还考虑身体的身份层面，来支持患有复发缓解型多发性硬化症的员工。与直属上级建立信任关系，包括及时披露诊断情况，对于复发缓解型多发性硬化症患者继续工作至关重要。对于复发缓解型多发性硬化症患者来说，在工作受到适度挑战与仍有能力满足工作要求之间存在着微妙的平衡。
