Importance and satisfaction ratings on 38 key employment concerns among African American women with multiple sclerosis

Abstract

OBJECTIVE:

This article provides descriptive findings from a sub-sample of 143 female African Americans with multiple sclerosis (MS) who responded to a national survey of the employment concerns of Americans with MS. Respondents evaluated 38 employment concerns items on two dimensions, importance and satisfaction, for the purpose of identifying strengths and weaknesses in the employment policies and practices affecting the labor force participation of African American women with MS.

RESULTS:

Results revealed a unique “strength and weakness” profile of African American women with MS consisting of 16 employment strengths and 22 employment weaknesses, a combination that distinguishes this population from profiles of other MS sub-populations.

CONCLUSION:

Implications of these findings for future rehabilitation programming and research are examined.

Keywords

Multiple sclerosis employment African American women

1 Introduction

Multiple sclerosis (MS) is an immune-mediated disease that involves inflammation and demyelination in the central nervous system (CNS; Rumrill & Bishop, 2019; Multiple Sclerosis Coalition, 2015). Demyelination, or damage to the myelin sheath, results in disruption in the transmission of nerve impulses from the brain to the body via the spinal cord. MS is a chronic, often progressive disease that is marked by a wide range of symptoms, the most commonly reported being 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). Even more intrusive than the wide-ranging symptoms of MS is the unpredictable and episodic course that the disease typically follows (Kalb, 2016).

Epidemiologists describe MS as one of the most common neurological diseases in the world, with an estimated prevalence of 3 million people worldwide and 950,000 in the US (Multiple Sclerosis Coalition, 2015; NMSS, 2015; Rumrill & Bishop, 2019). Approximately 10,000 new cases of MS are diagnosed each year in the US. MS can occur at any age, but initial symptoms are most often evident during early to mid-adulthood, typically between the ages of 20 and 50 (Kalb, 2016), the period of life associated with career initiation, exploration, and establishment (Super, 1980).

Epidemiological studies have revealed higher MS prevalence rates in temperate regions of the globe than in warmer climates. Countries that have particularly high rates of MS include the United Kingdom, Canada, Germany, Denmark, Norway, Sweden, Finland, and the United States (Smith & Schapiro, 2004). Two-thirds of Americans with MS reside in the northernmost 50 percent of the general populace, with the states of Vermont and Washington reporting the highest prevalence rates (Fraser et al., 2006). MS has historically been much more common among Caucasians of European descent than among people of color, but recent studies indicate that the incidence of MS among African Americans and those of Hispanic or Latin American origin in the United States is increasing dramatically (Langer-Gould et al., 2013).

1.1 MS and employment

As Moore et al. (2013) and others (e.g., Bradley et al., 2004; Sweetland et al., 2007) have noted, work is one of the most important societal commitments. In addition to financial remuneration, employment provides opportunities for social interaction and support, access to health insurance and other forms of security, a sense of identity, and self-esteem. The onset of MS and subsequent development of disability has consistently been found to cause a significant disruption in people’s career paths. Findings from several recent population-based surveys indicate that only 40-45% of working-age Americans with MS are engaged in the labor force (Bishop et al., 2013; Julian et al., 2008; Minden et al., 2006). Further, though more than 95 percent of Americans with MS have employment histories, and 82 percent were working at the time of their diagnosis (Rumrill et al., 2015), only an estimated 20% to 30% of Americans with MS are employed 15 years after their diagnosis (Fraser et al., 2002; Roessler et al., 2007).

A considerable body of research has been committed to understanding the reasons for the high rate of unemployment among people with MS and to exploring the predictors and correlates of employment. This research has led to improved understanding of the complexity of this situation and contributed to the development of more effective vocational rehabilitation interventions. However, for all that is known about the factors associated with labor force participation among people with MS in general, the specific employment experiences and concerns of African American women with MS are not well understood.

1.2 Impact of MS on African Americans

Although MS occurs in most ethnic groups, including African Americans, Asians, and Hispanics/Latinos, it has long been documented to occur 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) contended 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 from approximately 500 multiethnic, community-dwelling participants in a Southern California health plan, Langer-Gould et al. (2013) 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 et al., 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., 2004). Naismith, Trinkhaus, and Cross (2006) reported that a more aggressive course of MS in African Americans results in earlier onset of functional limitations and earlier need for mobility-related supports or assistive technology, such as a cane or wheelchair. Further, in an analysis of nursing home residents with MS, Buchanan, Wang, Huang, and Graber (2001) found that African Americans with MS admitted to US nursing homes were an average of 6 years younger than Caucasian patients with MS at admission but had higher levels of disability.

Despite the severity of symptoms experienced by some African Americans with MS, educational literature and public knowledge of MS tend to focus on young and middle-aged women of European descent. Because of this, African Americans are less likely to consult with their physicians about MS and it can be harder for these patients to accept an MS diagnosis once it has been made (Loveland, 1999).

Findings from a study by Rumrill, Roessler, et al. (2016) provide a view of the perceived strengths and weaknesses in employment policies and practices and of the experiences and priorities for employment of African Americans with MS. The researchers found that, overall, African Americans identified a total of 26 out of 38 employment concerns to be strengths, including high levels of satisfaction that employees with MS: are encouraged to take control of their own lives (75.1%), are provided the same retirement benefits as other workers (74.4%), and have the same maternity and family leave options as other workers (74.3%). The same study identified 12 out of 38 employment concerns as weaknesses, including relatively low rates of satisfaction that employees with MS: are recalled from layoffs in the same manner as other workers (56.4%), know how to discuss their job accommodation needs with employers (54.7%), and are considered for other jobs in the same company if their MS prevents them from returning to their former jobs (53.3%). Further, Rumrill, Roessler, et al. (2016) found that less than one-third of African American’s with MS who responded to their survey were employed, suggesting a strong need for improvements in the policies and services designed to help African Americans with MS and other disabling conditions enter, re-enter, or stay in the workforce. Data from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry (Julian et al., 2008) corroborate this recommendation in that slightly more than 40% of the registrants were employed, and African American adults with MS were more often unemployed than Caucasian adults with MS.

1.3 Impact of MS on women

MS is two to three times more common in women than in men, a gender disparity that is found in a number of other autoimmune diseases, and the ratio of women to men who are diagnosed with the disease appears to be increasing (NMSS, 2015). Further, women with MS are significantly less likely to be employed than their male counterparts (Bishop et al., 2013; Honarmand et al., 2011; Julian et al., 2008; Minden et al., 2006). Existing research concerning the employment experiences of women with MS focuses largely on the influence of societal gender roles on women’s decisions to leave the workforce. Dyck and Jongbloed (2000) found evidence that 60% of women with MS who responded to their written survey and who had left their employment had chosen to leave the workforce because they no longer had the energy to both care for their households and continue wage labor. Roessler, Rumrill, and Timblin (2017) and O’Day (1998) echoed this finding that women with MS were more likely to leave their employment if they felt that the symptoms of their MS were rendering them incapable of caring for their families. This inability to care for the household is often experienced by women as guilt, whereas men are more likely to feel anger over their limitations resulting from MS (Loveland, 1999). Women with MS who feel that they have help at home, either from family or from paid labor, appear to be more likely to stay in the workforce. Further, flexibility in work hours has a positive impact on the ability of women with MS to stay in the workforce (Dyck & Jongbloed, 2000).

Beyond the gender roles that many women fill, there are also gender-based expectations surrounding physical appearance and perceived ability that may contribute to women with MS leaving the workforce. Some women with MS, especially those with invisible symptoms such as fatigue, withhold or are reluctant to share their diagnosis of MS with their supervisors and employers for fear of being viewed as unfit to work or of losing benefits (Moss & Dyck, 1996; Dyck & Jongbloed, 2000).

In New Zealand, research based on a full census of the population living with MS found that women with MS in more cognitively demanding jobs, such as professional, clerical, or administrative work, were most likely to leave the workforce. This stands in contrast to men with MS, who were most likely to leave jobs that required physical labor. Also of note, women in New Zealand living with MS began to evince a significantly lower employment rate than the general population at the age of 40 and above, in comparison to their male counterparts, who showed a marked increase in unemployment beginning at age 30 (Pearson et al., 2017). Roessler and Gitchel (2013) found that employed women with MS have a significantly lower confidence in both living independently and in housing affordability as compared to unemployed males with MS.

Finally, the experiences of women with MS regarding their interactions with physicians expose troubling biases. Loveland (1999) found that, in contrast to men, a subset of women with MS in the Baltimore area had physicians ascribe their symptoms to having a “nervous breakdown” or to their high levels of “stress.” These female patients were more likely to undergo psychiatric testing before their physicians explored a physical basis for their symptoms. In addition, Loveland (1999) found that women were more likely than men to ascribe their MS to stress or stressful events, which was then reinforced by their physicians, despite an understanding in the medical community that the cause of MS is as yet unknown.

1.4 Impact of MS on African American women

The experiences noted above regarding the interactions of physicians and their female patients with MS are exacerbated for African American women with MS. Loveland (1999) found that 30% of African American women with MS were first told that their symptoms could be, at least in part, attributed to emotional or psychological concerns, as compared with 11% of women with MS of European descent. As was true for women on the whole, African American women in that study tended to ascribe their MS to stress or stressful events, diverging from the opinion of the medical community and exposing a communication rift between predominantly white, male physicians and their African American female patients.

The limited research on African American women with MS is a stark reminder that this population is underserved and under-researched in terms of health and the impact of health on other indicators of community participation, including employment. The objective of this article is to describe high-priority issues related to the employment outcomes of female African Americans with multiple sclerosis (MS) and recommend vocational rehabilitation interventions to address those issues. Although female African Americans are a growing sub-group of people with MS, their specific employment and vocational rehabilitation experiences have not been thoroughly examined in extant research. Thus, the purpose of this study was to identify key employment concerns from the perspective of a national sample of female African Americans with MS whose needs for employment services and supports must be better understood by rehabilitation professionals, employers, and other stakeholders. The research we describe in this article represents a small contribution to what we hope will become a burgeoning field of inquiry leading to more equitable models for medical treatment, employment, and empowerment of African American women who are diagnosed with MS.

1.5 Research questions

What are the most important employment concerns from the perspectives of African American women with MS?

What are the important employment concerns with which African American women with MS are most satisfied (i.e., what are the strengths in employment policies and practices)?

What are the important employment concerns with which African American women with MS are least satisfied (i.e., what are the weaknesses in employment policies and practices)?

2 Method

Data for this study were collected as part of a larger national survey of the employment concerns of people with MS (see Rumrill et al., 2015). A sub-sample of 143 African American women with MS who were employed at the time of the survey or were previously employed (employment full time or part time; self-employed full time or part time; ever worked in the past) was drawn to answer the specific research questions for this investigation.

2.1 Participants

Among the 143 participants in the present sample, 50 were single (35.5%), 54 were living with significant others/partners or married (37.8%), and 39 were divorced, separated or widowed (27.3%). Some 48.1 percent of respondents described their communities as urban, whereas 46.6 percent lived in suburban areas and 5.3 percent resided in rural settings. The sample reported a mean age of 51.14 years (SD = 11.22 years). One hundred fifteen (81.0%) of respondents had been in paid employment at the time of their diagnosis. At the time of the survey, forty-three respondents reported full-time employment (30.1%), fourteen respondents reported part-time employment (9.8%), one respondent reported full-time self-employment (0.7%), and five respondents reported part-time self-employment (3.5%).

Twenty employed respondents (35.1%) indicated that they had requested workplace accommodations from their employers, and fourteen employed respondents (70% of those who requested accommodations) reported using workplace accommodations at the time of the survey.

The most commonly used type of workplace accommodation was changes in work schedules (used by 9.8% of employed respondents), followed in descending order of frequency by changes in job duties/procedures (7.0%), modifications of work station or company physical facilities (5.6%), working at home part of the time (4.2%), personal care assistant (3.5%), reassignment to another position (2.8%), modification of equipment (2.1%), installation of new assistive equipment (2.1%), driver (2.1%), reader (0.7%), and scribe (0.7%).

The participants in this analysis were well educated, with 96.5 percent having graduated at least from high school; 23.8 percent having attended further trade, technical, or vocational school; 37.8 percent having graduated from two or four year college; and 16.8 percent having gone on to post-graduate studies. One hundred five participants were dealing with the relapsing-remitting form of MS (74.5%). Twenty-four respondents reported that their work status had changed as a direct result of MS (40.7%) and 35 respondents reported that their work status had not changed as a direct result of MS (59.3%).

In descending order of frequency, the most commonly reported MS symptoms were: fatigue (reported by 88.8% of the sample), balance/coordination problems (69.2%), tingling in the extremities (59.4%), pain (58.0%), numbness (57.3%), diminished physical capability (53.1%), gait/mobility problems (53.1%), bowel/bladder dysfunction (51.0%), sleep disturbance (48.3%), cognitive impairment (47.6%), spasticity (46.9%), vision problems (39.9%), depression (39.2%), anxiety (32.2%), sexual dysfunction (23.8%), tremors (18.9%), speech problems (18.2%), and bipolar disorder (2.8%).

2.2 Instrumentation

The instrument used in the survey was a 98-item questionnaire that comprised several sub-scales and a variety of open and fixed response sets. Parts of the questionnaire used in this investigation included sections on participant demographics, work history and employment activities, illness-related variables, and 38 employment concerns items (see Rumrill et al., 2015). The 38 employment concerns items were the primary focus of this study. In responding to those items, individuals indicated whether they considered the concern to be important and whether they were satisfied that the concern was being addressed in their communities. For example, in responding to the item regarding health insurance coverage, respondents were asked, “Is it important that people with MS have adequate health insurance coverage?” and “Are you satisfied that people with MS have adequate health insurance coverage?” Other concerns items addressed such issues as wages, benefits, discrimination in hiring and retention practices of employers, employment protections under major legislation, interpersonal interactions with co-workers and supervisors, the availability and quality of vocational rehabilitation services, access to workplace accommodations, and support for planning for the future.

2.3 Procedures and data analysis

Readers interested in the instrument development, sampling, and data collection procedures used in the larger national survey from which this study’s findings were drawn are referred to Rumrill et al. (2015). Descriptive statistics such as frequencies and percentages were used to answer the three research questions. For each of the 38 employment concerns items, an Importance rating was calculated as the percentage of respondents who evaluated the item as important. In turn, each item was also assigned a Satisfaction rating that was calculated as the percentage of respondents who were satisfied with the current status of that item. An employment strength was defined as an item with a high Importance rating (i.e., greater than 60 percent) and a high Satisfaction rating (i.e., greater than 60 percent). An employment weakness was defined as an item with a high Importance rating and a low Satisfaction rating (i.e., less than 60 percent).

Table 1
Employment concerns items and their importance ratings

Item % Important

African American Women with MS ...

Are provided the same retirement benefits as other workers. 98.5%

Have adequate information about benefits such as health and disability (short and long-term) insurance. 98.5%

Receive the same on-the-job training opportunities as other workers. 98.5%

Know what to do if they encounter discrimination at work. 98.5%

Make the decision to quit or retire without being pressured or forced to do so by employers. 98.4%

Are encouraged to take control of their lives. 97.8%

Have the same opportunity for promotion as other workers. 97.7%

Have adequate health insurance coverage. 97.7%

Are evaluated based on their performance, not on assumptions about MS. 97.7%

Can expect employers to respect their privacy regarding health and disability-related information. 97.7%

Have access to adequate information about Social Security programs. 97.7%

Understand the risks and benefits of disclosing disability status to employers. 96.9%

Are made aware of employer expectations in the same way as other employees. 96.9%

Are recalled from layoffs in the same manner as other workers. 96.9%

Have access to health insurance when changing jobs or returning to a previous job. 96.2%

Have access to service providers who understand the needs of people with MS. 95.6%

Receive the same severance pay as other workers. 95.5%

Are not subjected to harassment or intimidation in the workplace because of their MS. 95.4%

Have their seniority honored in the same way as other employees. 95.3%

Know their rights regarding job-related physical examinations. 94.7%

Are treated fairly in termination or demotion decisions made by their employers. 94.6%

Understand the employment protections of Title I in the Americans with Disabilities Act as Amended (ADA). 93.8%

Understand the health insurance provisions and protections of the Affordable Care Act (i.e., Obamacare). 93.8%

Have the same maternity and family leave options as other workers. 93.2%

Have access to the full range of employment opportunities offered by their employers. 93.2%

Know how to discuss their job accommodation needs with employers. 92.5%

Can request a review of their accommodation needs without fear of retaliation. 92.4%

Are treated fairly by employers in the hiring process. 91.8%

Have access to assistive technology resources needed for work. 91.7%

Are evaluated no more frequently than other workers. 91.5%

Can expect employers to respond to their accommodation needs in a timely manner. 91.0%

Are given references from past employers based on work performance, not on disability status. 90.4%

Have physical access to workplace facilities. 90.2%

Are considered for other jobs in the same company if their MS prevents them from returning to their former jobs. 89.3%

Have opportunities for job training or retraining. 85.0%

Have their qualifications for employment and advancement fairly evaluated by employers. 83.1%

Are asked interview questions related to job tasks and personal qualifications rather than to health and disability matters. 74.2%

Are expected, by their physicians and significant others, to remain employed after diagnosis. 61.9%

Item	% Important
African American Women with MS ...
Are provided the same retirement benefits as other workers.	98.5%
Have adequate information about benefits such as health and disability (short and long-term) insurance.	98.5%
Receive the same on-the-job training opportunities as other workers.	98.5%
Know what to do if they encounter discrimination at work.	98.5%
Make the decision to quit or retire without being pressured or forced to do so by employers.	98.4%
Are encouraged to take control of their lives.	97.8%
Have the same opportunity for promotion as other workers.	97.7%
Have adequate health insurance coverage.	97.7%
Are evaluated based on their performance, not on assumptions about MS.	97.7%
Can expect employers to respect their privacy regarding health and disability-related information.	97.7%
Have access to adequate information about Social Security programs.	97.7%
Understand the risks and benefits of disclosing disability status to employers.	96.9%
Are made aware of employer expectations in the same way as other employees.	96.9%
Are recalled from layoffs in the same manner as other workers.	96.9%
Have access to health insurance when changing jobs or returning to a previous job.	96.2%
Have access to service providers who understand the needs of people with MS.	95.6%
Receive the same severance pay as other workers.	95.5%
Are not subjected to harassment or intimidation in the workplace because of their MS.	95.4%
Have their seniority honored in the same way as other employees.	95.3%
Know their rights regarding job-related physical examinations.	94.7%
Are treated fairly in termination or demotion decisions made by their employers.	94.6%
Understand the employment protections of Title I in the Americans with Disabilities Act as Amended (ADA).	93.8%
Understand the health insurance provisions and protections of the Affordable Care Act (i.e., Obamacare).	93.8%
Have the same maternity and family leave options as other workers.	93.2%
Have access to the full range of employment opportunities offered by their employers.	93.2%
Know how to discuss their job accommodation needs with employers.	92.5%
Can request a review of their accommodation needs without fear of retaliation.	92.4%
Are treated fairly by employers in the hiring process.	91.8%
Have access to assistive technology resources needed for work.	91.7%
Are evaluated no more frequently than other workers.	91.5%
Can expect employers to respond to their accommodation needs in a timely manner.	91.0%
Are given references from past employers based on work performance, not on disability status.	90.4%
Have physical access to workplace facilities.	90.2%
Are considered for other jobs in the same company if their MS prevents them from returning to their former jobs.	89.3%
Have opportunities for job training or retraining.	85.0%
Have their qualifications for employment and advancement fairly evaluated by employers.	83.1%
Are asked interview questions related to job tasks and personal qualifications rather than to health and disability matters.	74.2%
Are expected, by their physicians and significant others, to remain employed after diagnosis.	61.9%

Note. The importance of employment concerns was ordered in descending order.

3 Results

As per the first research question, researchers began the present analysis by considering the Importance ratings that respondents assigned to each item. All 38 items had Importance ratings of at least 60% and 36 of the 38 items had Importance ratings of at least 80 percent. Table 1 lists the 38 employment concerns items in descending order of Importance ratings.

The second research question covered the perceived strengths in employment policies and practices from the vantage point of African American women with MS. Defining a strength as an item with an Importance rating of at least 60 percent and a Satisfaction rating of at least 60 percent, the researchers identified a total of 16 employment related strengths. The most prominent employment strength was “they are encouraged to take control of their lives” (83.5% Satisfaction). Other relatively highly endorsed employment strengths were “are provided the same retirement benefits as other workers” (75.0% Satisfaction) and “have the same maternity and family leave options as other workers” (75.0% Satisfaction). On the low end, the most modest of the employment strengths was “have access to assistive technology resources needed for work” (60.2% Satisfaction).

Some items of strength are notable for having the smallest differences between their Importance and Satisfaction ratings. For instance, only a 2.90 percent difference existed between the Importance rating and Satisfaction rating for “are expected, by their physicians and significant others, to remain employed after diagnosis.” Other relatively low differences between the ratings were found for “are encouraged to take control of their lives” (14.30%) and “are asked interview questions related to job tasks and personal qualifications rather than to health and disability matters” (18.30%). Table 2 presents the 16 strength items in descending order of their Satisfaction ratings.

Table 2
Employment strengths

Items % Satisfied

Are encouraged to take control of their lives. 83.5%

Are provided the same retirement benefits as other workers. 75.0%

Have the same maternity and family leave options as other workers. 74.8%

Are made aware of employer expectations in the same way as other employees. 73.0%

Receive the same on-the-job training opportunities as other workers. 72.1%

Have access to service providers who understand the needs of people with MS. 71.3%

Receive the same severance pay as other workers. 69.9%

Have their seniority honored in the same way as other employees. 67.9%

Are given references from past employers based on work performance, not on disability status. 65.8%

Have adequate health insurance coverage. 65.5%

Have access to adequate information about Social Security programs. 65.5%

Can expect employers to respect their privacy regarding health and disability-related information. 64.5%

Are evaluated no more frequently than other workers. 64.5%

Have access to health insurance when changing jobs or returning to a previous job. 62.4%

Have physical access to workplace facilities. 61.9%

Have access to assistive technology resources needed for work. 60.2%

Items	% Satisfied
Are encouraged to take control of their lives.	83.5%
Are provided the same retirement benefits as other workers.	75.0%
Have the same maternity and family leave options as other workers.	74.8%
Are made aware of employer expectations in the same way as other employees.	73.0%
Receive the same on-the-job training opportunities as other workers.	72.1%
Have access to service providers who understand the needs of people with MS.	71.3%
Receive the same severance pay as other workers.	69.9%
Have their seniority honored in the same way as other employees.	67.9%
Are given references from past employers based on work performance, not on disability status.	65.8%
Have adequate health insurance coverage.	65.5%
Have access to adequate information about Social Security programs.	65.5%
Can expect employers to respect their privacy regarding health and disability-related information.	64.5%
Are evaluated no more frequently than other workers.	64.5%
Have access to health insurance when changing jobs or returning to a previous job.	62.4%
Have physical access to workplace facilities.	61.9%
Have access to assistive technology resources needed for work.	60.2%

Note. The employment strength items were ordered in descending order of satisfaction rating.

The third research question addressed respondents’ perceived weaknesses in employment policies and practices. Defining an employment weakness as an item with an Importance rating of at least 60 percent and a Satisfaction rating of less than 60 percent, the researchers identified 22 such items. The most prominent employment weakness was “they are considered for other jobs in the same company if their MS prevents them from returning to their former jobs”(49.1% Satisfaction). Also of note, 34 of the 38 items had more than 20% differences between their Importance and Satisfaction ratings, and 9 items had more than 40% differences. For instance, a 40.20 percent difference existed between Importance and Satisfaction ratings for “are considered for other jobs in the same company if their MS prevents them from returning to their former jobs,” a 42.40 percent difference existed for “have adequate information about benefits such as health and disability (short and long-term) insurance,” and a 43.20 percent difference existed for “are treated fairly in termination or demotion decisions made by their employers.” Table 3 presents the weakness items in descending order of their Satisfaction ratings.

Table 3

Employment weaknesses

Items	% Satisfied
Have their qualifications for employment and advancement fairly evaluated by employers.	59.5%
Make the decision to quit or retire without being pressured or forced to do so by employers.	59.1%
Are expected, by their physicians and significant others, to remain employed after diagnosis.	59.0%
Know their rights regarding job-related physical examinations.	58.6%
Are not subjected to harassment or intimidation in the workplace because of their MS.	58.4%
Have opportunities for job training or retraining.	58.1%
Are evaluated based on their performance, not on assumptions about MS.	57.4%
Have adequate information about benefits such as health and disability (short and long-term) insurance.	56.1%
Are asked interview questions related to job tasks and personal qualifications rather than to health and disability matters.	55.9%
Understand the employment protections of Title I in the Americans with Disabilities Act as Amended (ADA).	55.5%
Have the same opportunity for promotion as other workers.	55.5%
Can expect employers to respond to their accommodation needs in a timely manner.	55.3%
Have access to the full range of employment opportunities offered by their employers.	54.4%
Can request a review of their accommodation needs without fear of retaliation.	54.4%
Are treated fairly by employers in the hiring process.	53.5%
Know how to discuss their job accommodation needs with employers.	53.5%
Understand the risks and benefits of disclosing disability status to employers.	53.2%
Understand the health insurance provisions and protections of the Affordable Care Act (i.e., Obamacare).	51.8%
Are treated fairly in termination or demotion decisions made by their employers.	51.4%
Are recalled from layoffs in the same manner as other workers.	51.4%
Know what to do if they encounter discrimination at work.	51.3%
Are considered for other jobs in the same company if their MS prevents them from returning to their former jobs.	49.1%

Note. The employment weakness items were ordered in descending order of satisfaction rating.

4 Discussion

In comparing the African American women with MS in this investigation to the overall sub-group of women with MS from the original survey data (Rumrill, Li, et al., 2016), we find that participants in the present study identified four items of strength that were not strengths among women with MS in general. These items are: “have adequate access to health insurance coverage,” “have access to adequate information about Social Security programs,” “have access to health insurance when changing jobs or returning to a previous job,” and “have access to assistive technology resources needed for work.” These items largely revolve around satisfaction with health care and public benefits.

Although, based on the present definition, having adequate health insurance coverage and access to health insurance when changing jobs or returning to a previous job are identified as employment strengths, there is a notable gap in terms of importance (over 96%) and satisfaction (below 66%) in terms of these aspects of employment. Recent data from the Kaiser Family Foundation’s Women’s Health Policy group noted that, although approximately 60% of working-aged US women received their health coverage from their own or their spouses’ employers in 2017, women of color, along with low-income and immigrant women, are at greater risk of being uninsured (Kaiser Family Foundation, 2018). Further, uninsured women frequently report having inadequate access to healthcare, receive a lower standard of healthcare, have lower use of preventive health services, and are less likely to report having a regular doctor (Kaiser Family Foundation, 2018). Additionally, access to health care and health insurance, as well as culturally-based self-care practices, are important in disease management among African Americans (Becker, Gates, & Newsom, 2004). In the present sample of African American women with MS, the results appear to reflect the critical importance for this population of access to health care and health insurance through employment.

The present sample of African American women with MS also identified four weaknesses that differed from the overall sub-group of women with MS. These items are: “ have their qualifications for employment and advancement fairly evaluated by employers,” “are expected, by their physicians and significant others, to remain employed after diagnosis,” “are not subjected to harassment or intimidation in the workplace because of their MS,” and “are asked interview questions related to job tasks and personal qualifications rather than to health and disability matters.” These items suggest a troubling possibility that the triple-disadvantagement of race, gender, and disability make African American women with MS feel particularly susceptible to harassment and discrimination in the workplace.

Recent research highlights the details of this triple-disadvantagement. For example, Parker and Funk (2017) reported (a) that women in the US are significantly more likely to report having experienced discrimination in employment than men, (b) that a majority of African American adults report having been discriminated against in employment because of their race, and (c) that 53% of employed African American women say they have experienced at least one type of gender discrimination at work, compared to 40% of white and Hispanic women. Further, according to Rumrill, Roessler, McMahon, Hennessey, and Neath (2007), women with MS are more susceptible to workplace harassment and intimidation compared to men with MS. More recently, Roessler, Rumrill, Li, and Leslie (2015) indicated that minority group members with MS and women with MS may be less likely to secure and maintain employment due to social barriers.

The interaction among race, gender, and disability can influence workplace climate (Shaw et al., 2012). Such interactive effects of multiple stigmatizing identities may present more difficulties for African American women with MS in employment. Female African American employees with MS may feel that others have lower expectations of them to remain in the workplace, paired with lower expectations of their workplace performance if they do remain.

When comparing the African American women with MS who comprised this study’s sample to the total sub-group of African Americans with MS from the original survey data (Rumrill, Roessler, et al., 2016), there were 10 items of weakness in the present study that were not identified as weaknesses among African Americans with MS in general. The five items with the largest discrepancies, ranging from 4.5 to 7.5 percentage points in their Satisfaction ratings, are: “ are evaluated based on their performance, not on assumptions about MS,” “are not subject to harassment or intimidation in the workplace because of their MS,” “understand the employment protections of Title I in the Americans with Disabilities Act as Amended (ADA),” “have the same opportunity for promotion as other workers,” “ have adequate information about benefits such as health and disability (short and long-term) insurance,” and “understand the risks and benefits of disclosing disability status to employers.” Again, these items highlight increased concern about harassment and other forms of discrimination in the workplace for African American women with MS. These differentiated weaknesses also indicate a problematic lack of information provided to this study’s respondents in comparison to African Americans with MS in general. MS-related variables (e.g., fatigue, mobility difficulties, cognitive impairment) and sociodemographic factors (e.g., gender, race/ethnicity, age, educational level) contribute to work-related difficulties in people with MS (Lunde et al., 2014; Roessler et al., 2015; Strober et al., 2012). Beyond MS-related and sociodemographic factors, people with MS are at increased risk for experiencing additional employment discrimination, including failure in providing reasonable accommodations, promotion delay, and differential work standards (Roessler et al., 2011). African American females with MS may experience the interactive effects of workplace discrimination given their multiple disadvantaging identities. This highlights the need for future research to examine factors influencing employment in African American women with MS, which can inform organizational practices in the workplace and clinical practices for healthcare providers and rehabilitation counselors. For instance, employers can provide disability awareness training, foster positive supervisor-employee relationships, and cultivate a positive and welcoming workplace culture (Von Schrader et al., 2014). Such steps may help African American women with MS to experience an increased sense of belonging and confidence in the workplace.

Healthcare providers and rehabilitation counselors can help by ensuring that African American women with MS have the information and resources necessary to address both work climate and work function barriers, including developing in workers the techniques and accommodations needed to compensate for work task difficulties (Cadden & Arnett, 2015), which can assist African American women with MS in securing and maintaining their jobs.

4.1 Limitations

Limitations of the present study included the relatively small sample size, researchers’ exclusive reliance on self-report data, the low survey return rate in the larger survey from which this study’s participants were extracted and collateral threats to external validity, and the restricted range of responses to the 38 employment concerns items due to the dichotomous (yes/no) scaling of Importance and Satisfaction ratings. Readers should also note that findings from this study of African American women with MS are not intended to be generalized to other countries due to vast global differences in (a) the policies and practices that govern healthcare, human services, and workforce development and (b) the roles and treatment of women and members of diverse racial and ethnic groups.

5 Conclusion

The purpose of this article was to describe the highest priority strengths and weaknesses in existing employment policies and services as identified by a national sample of African American women with MS. A total of 38 employment concerns were considered in this investigation, 16 of which were revealed as employment strengths and 22 of which were found to be employment weaknesses. The low rate of labor force participation among this study’s participants and the relatively high number of employment weaknesses underscore the need for continued improvements in the employment-related supports designed to help African American women with MS overcome the triple disadvantage that is posed by their gender, ethnicity, and disability status. By understanding the most prominent employment concerns of African American women with MS, as well as promoting education among health care professionals and engaging in advocacy to support labor force participation, rehabilitation professionals can help the American economy capitalize on the talents and expertise of the growing population of African American women with MS, who are well-trained, experienced, and productive workers with much to contribute to society.

Author note

This research was funded partly through a Health Care Delivery and Policy Research grant from the National Multiple Sclerosis Society, New York, NY. The authors wish to thank the National Multiple Sclerosis Society, its participating chapters, and the study participants for their support and assistance with this research. This research was also supported by the Vocational Rehabilitation Technical Assistance Center on Targeted Communities grant (H264F150003) from the Department of Education. However, the ideas, opinions, and conclusions expressed do not necessarily represent the policy of the Department of Education, and endorsement by the Federal Government should not be assumed. Preparation of this article was also partly funded by the United States Department of Labor, Office of Disability Employment Policy in the amount of $2.5 million under Cooperative Agreement No. OD-32548-18-75-4-21. This document does not necessarily reflect the views or policies of the U.S. Department of Labor, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government.

Conflict of interest

None to report.

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