Perceived Strengths and Weaknesses in Employment Policies and Practices among African Americans with Multiple Sclerosis

The purpose of this article is to describe key factors that influence the employment outcomes of African Americans with multiple sclerosis (MS) and recommend effective rehabilitation interventions to address those factors. To date, much of the research on MS and employment has focused on people of European descent. Very little is known about the experiences and concerns of people with MS from traditionally underrepresented racial and ethnic groups (e.g., African-Americans, Hispanics/Latinos), although evidence indicates that the incidence of MS is increasing among non-Caucasians worldwide (e.g., Langer-Gould, Brara, Beaber, & Zhang, 2013). Thus, the aim of this study was to identify high-priority employment concerns from the perspectives of a national sample of African Americans with MS whose needs for employment services and supports must be better understood by rehabilitation professionals, employers, and other stakeholders. Overview of Multiple Sclerosis MS is an immune-mediated disease that involves inflammation and demyelination in the central nervous system (CNS). Demyelination, or damage to the myelin sheath, results in disruption in the transmission of nerve impulses between the brain and the spinal cord. MS is a chronic and often progressive neurologic condition associated with a wide range of symptoms. The most commonly reported symptoms include fatigue, numbness, gait-related difficulties, spasticity, vision problems, sexual dysfunction, weakness, dizziness and vertigo, pain, bowel and bladder problems, cognitive problems, depression, and emotional changes (National Multiple Sclerosis Society [NMSS], 2015). MS is one of the most common neurological diseases in the world, with an estimated prevalence of 2.3 million people worldwide and 450,000 in the US (Multiple Sclerosis Coalition, 2014; NMSS, 2014). Approximately 10,000 new cases of MS are diagnosed each year in the US. Although MS can occur at any age, initial symptoms are most often evident during early adulthood, typically between the ages of 20 and 50 (Kalb, 2012), during the period of life associated with career initiation, exploration, and establishment (Super, 1980). Prevalence and Course of Multiple Sclerosis in African Americans Although MS occurs in most ethnic groups, including African-Americans, Asians, and Hispanics/Latinos, it definitely occurs most frequently among Caucasians in Western Europe and North America (DeLuca & Nocentini, 2011). The prevalence of MS among African Americans has historically been estimated at approximately 1 in 1,500 individuals, or about half the prevalence seen among Caucasian-Americans (Durand, 2006). Recent research suggests, however, that the prevalence of MS among African Americans may be higher than previously believed. Langer-Gould et al. (2013) suggested that the assumed lower prevalence of MS is based on dated ecological studies and research among specific populations, and they noted the absence of population-based studies comparing MS incidence rates among African-Americans, Caucasians, and Hispanics. In their analysis, based on data for approximately 500 multiethnic, community-dwelling participants in a Southern California health plan, Langer-Gould et al. found that African-American women had the highest risk of acquiring MS, and African-American men had a similar risk of MS to that of Caucasian men. Moreover, data from several investigations suggest that, compared with Caucasians, African Americans are more likely to be diagnosed with MS at a younger age, to experience a more aggressive course of MS, to have greater disability with increased disease duration, and to demonstrate a more rapid and severe cognitive decline (Avasarala, 2014; Durand, 2006; Johnson, Terrell, Sargent, & Kaufman, 2007; Kister et al., 2010; Weinstock-Guttman et al., 2003). African Americans have also been found to experience a higher incidence of certain symptoms, such as transverse myelitis, when compared to Caucasian Americans (Avasarala, 2014; Cree et al. …