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The costs and benefits of employment: A qualitative study of experiences of individuals living with multiple sclerosis


Johnson KL, Yorkston KM, Klasner ER, Kuehn CM, Johnson E, Amtmann D



Publication Info:

Archives of Physical Medicine and Rehabilitation, 85(2):201-9


OBJECTIVE: To attain a better understanding of the benefits and barriers faced by persons with multiple sclerosis (MS) in the workplace.
DESIGN: Qualitative research methodology comprising a series of semistructured interviews.
SETTING: Community-based setting.
PARTICIPANTS: Fourteen women and 2 men with MS living in the community who were employed or recently employed at the time of interviews.
INTERVENTIONS: Not applicable.
MAIN OUTCOME MEASURE: Accounts of personal experiences related to employment.
RESULTS: 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.
CONCLUSIONS: 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.

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