Johnson Kurt L, Yorkston Kathryn M, Klasner Estelle R, Kuehn Carrie M, Johnson Erica, Amtmann Dagmar
Department of Rehabilitation Medicine, School of Medicine, University of Washington, Seattle, WA 98195, USA.
Arch Phys Med Rehabil. 2004 Feb;85(2):201-9. doi: 10.1016/s0003-9993(03)00614-2.
To attain a better understanding of the benefits and barriers faced by persons with multiple sclerosis (MS) in the workplace.
Qualitative research methodology comprising a series of semistructured interviews.
Community-based setting.
Fourteen women and 2 men with MS living in the community who were employed or recently employed at the time of interviews.
Not applicable.
Accounts of personal experiences related to employment.
Four themes emerged: the cost-benefit economy of working; fatigue and cognitive changes; stress in the workplace; and accommodations made to address barriers. Although participants valued work highly, they were also aware of the cost of being employed. The consequences of unemployment or changing jobs were considered negative and appeared stressful. For persons with MS, employment had both costs and significant benefits. Accommodations in the workplace and modifications of roles and responsibilities at home made it possible for individuals to continue working.
Health care providers must consider the complexity and timing of decisions by people with MS to continue or leave employment before recommending either action. Identifying critical periods of intervention to stabilize this cost-benefit balance is a critical next step for understanding issues of employment and MS.
更好地了解多发性硬化症（MS）患者在工作场所面临的益处和障碍。
采用定性研究方法，包括一系列半结构化访谈。
基于社区的环境。
14名患有MS的女性和2名男性，他们居住在社区，在接受访谈时已就业或最近就业。
不适用。
与就业相关的个人经历描述。
出现了四个主题：工作的成本效益经济；疲劳和认知变化；工作场所的压力；以及为克服障碍所做的调整。尽管参与者高度重视工作，但他们也意识到就业的成本。失业或换工作的后果被认为是负面的，而且似乎压力很大。对于患有MS的人来说，就业既有成本也有显著的好处。工作场所的调整以及家庭中角色和责任的改变使个人能够继续工作。
医疗保健提供者在建议MS患者继续就业或离职之前，必须考虑他们做出决定的复杂性和时机。确定稳定这种成本效益平衡的关键干预时期是理解就业与MS问题的关键下一步。
