Academic journal article The Journal of Rehabilitation

Perceptions of Quality of Employment Outcomes after Multiple Sclerosis: A Qualitative Study

Academic journal article The Journal of Rehabilitation

Perceptions of Quality of Employment Outcomes after Multiple Sclerosis: A Qualitative Study

Article excerpt

The onset of multiple sclerosis (MS) typically occurs between ages 20-40, during the most active employment years (Kalb, 2016; Super, 1980). However, career development often slows or stops as MS symptoms advance. More than 90% of Americans with MS have employment histories (Nissen & Rumrill, 2016), with more than three-quarters still working at the time of diagnosis, despite the lapse between onset and diagnosis (Falvo, 2014). As the illness progresses, employment sharply declines, with only 20-30% of people with MS employed 15 years after diagnosis (Fraser, Clemmons, & Bennett, 2002) and less than 50% in the US currently employed (Roessler, Rumrill, Li. & Leslie, 2015). The majority (75%) of unemployed people with MS leave their jobs voluntarily (Roessler et al., 2015), although most believe they are able to work (Nissen & Rumrill, 2016) and would like to re-enter the workforce (Rumrill, 2015).

Despite the importance of employment, we only have a general understanding of factors related to premature exit from the labor force after the onset of MS. The majority of research focuses on attributable differences related to demographic or disease-related characteristics, with less research on environmental factors that may have policy implications. Women are significantly less likely to be employed than men (Roessler et al., 2015), and both sexes are more likely to leave the workforce if they have a working spouse (Rumrill, Hennessey, & Nissen, 2008). An inverse linear relationship has been found between employment and age (Rumrill et al., 2008).

Exacerbation and progression of physical symptoms of MS are strong predictors of job loss (Falvo, 2014). In addition to the type of symptoms experienced, Roessler, Rumrill, and Fitzgerald (2004) found that people who experience MS symptoms most or all of the time, especially if the persistent symptoms are greater in number and more severe, are more likely to be unemployed. Nearly a third of unemployed participants attribute their jobless status to physiological effects of MS (Fraser et al., 2002; Rumrill, 2015). Nearly half of unemployed respondents have cited ambulation difficulty as the primary reason for leaving the workforce, and 39% describe fatigue as the most important factor (Edgley et al., 1991). Cognitive impairment represents a significant barrier to employment (Kalb, 2016), with those reporting cognitive impairments being four times more likely to be unemployed (Roessler et al., 2015), and frequency of perceived cognitive problems is directly related to the rate of unemployment (DeLuca & Nocentini, 2011). Not surprisingly, education level and socioeconomic status (SES) are inversely related to the probability of employment (Roessler et al., 2015).

Discrimination has also been implicated in impacting the employment status of individuals with MS. Between 1992 and 2003, the United States Equal Employment Opportunity Commission received and resolved 3,669 allegations of employment discrimination from people with MS under Title I of the Americans with Disabilities Act (ADA; Unger, Rumrill, Roessler, & Stacklin, 2004). Unlawful termination was the most commonly cited form of workplace discrimination (29.9%), followed by complaints of the lack of reasonable accommodations (21.9%), terms and conditions of work (9.8%), and harassment (6.7%). Compared to complainants with other disabilities, people with MS were more likely to allege discrimination in the areas of reasonable accommodations, terms and conditions of employment, constructive discharge, and demotion. They were less likely to allege discrimination in the area of hiring and more likely to have their allegations resolved in their favor (Unger et al., 2004). More recently, Roessler et al. (2015) found that primary employment concerns were related to enforcement of the ADA, health care and health insurance coverage, and Social Security disability programs. Those with MS progress from active employment to short-term disability insurance, long-term disability insurance, and Social Security Disability Insurance (SSDI) at higher and faster rates than people with most other disabilities (Fraser, McMahon, & Danczyk-Hawley, 2004). …

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