Insider Perspective on Employment and MS.

TitleInsider Perspective on Employment and MS.
Publication TypeJournal Article
AuthorsJohnson KL, Yorkston KM, Klasner ER, Johnson E, Amtmann D, Fraser RT
JournalInternational Journal of MS Care

Although over 95% of people with MS in various surveys have been employed at one time, at the time of the surveys (average time following MS diagnosis from 5-17 years), employment rates had dropped to approximately 25% (2), (3), (4), (5). Physical disability factors clearly play a key role in reducing access to employment, but environmental barriers and lack of accommodation in the workplace also serve as significant barriers to employment for people living with MS (8), (9), (11). Cognitive deficits have increasingly been found to be associated with higher rates of unemployment for people living with MS; at least half of the individuals living with MS will develop cognitive symptoms (6). Individuals with MS who have left employment are more likely to have cognitive deficits and are more likely to be isolated socially (6), (11). Qualitative methodology is well suited for research when we seek to understand the perspective of individuals living with health conditions. We interviewed 12 individuals with MS who are employed throughout the Pacific Northwest for a minimum of one hour. Interviews were audio taped and transcribed, and the transcription verified. Transcripts were then coded by consensus among the research team and entered into the qualitative research software package Ethnograph (12). Themes that illustrate unique experiences of individual informants and perspective shared across informants were then developed by consensus. Themes that emerged included the consistent value of work, the complex interaction between fatigue and cognitive disability, the degree to which co-worker and employer attitudes are disabling, and the frightening and disabling aspects of the unpredictability of exacerbations. Informants also reported a variety of creative, self-initiated workplace accommodations. Recommendations for health care providers include exceptional caution about recommending exit from employment or equating employment with disabling stress.

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