Perceptions of quality of employment outcomes after multiple sclerosis: A qualitative study

Objective: The purpose of this study was to identify quality outcomes of employment, as defined by those with MS who worked at some point following their diagnosis. Research Methods: Qualitative approach using eight focus groups at three sites (Ohio, Georgia, South Carolina) with a total of 74 participants. Inclusion criteria: (1) >18 years, (2) < 65 at time of diagnosis, (3) physical disability from MS, and (4) must have been employed after diagnosis. The majority of participants were identified through MS advocacy organizations and support groups in the three states. Results: Narrative responses fell into 14 overlapping themes grouped under the 3 broad categories of (1) Compensation, (2) Personal Well-being, and (3) Benefitting Others. Compensation included three themes: Salary; Support responsibilities and lifestyle; and Pay for health needs, including medications. Personal Well-being encompassed eight themes: Maintain health and wellness; Stress and burden; Something to do and a reason to get up; Socialization and interacting with others; Sense of purpose and direction; Pride and sense of accomplishment; Identity; and Enjoyment. Three themes were within Benefitting Others: Value added and general helping others; Providing direct help or assistance; and Inspiring others. Conclusion: The importance of work to the lives of people with MS and other disabling conditions cannot be measured by employment rate alone. Results of this study provide some encouraging evidence that people with MS view work as an important social role and as a means of staying active and retaining one's identity.