Factors associated with requesting accommodations among people with multiple sclerosis

Abstract

BACKGROUND:

Almost one million individuals are living with multiple sclerosis (MS) in the United States with a majority being diagnosed when they are in their 20s or early stages of their careers. Employees with MS experience various job-related challenges such as high unemployment and underemployment. Accommodations assist individuals with MS to obtain and maintain employment, yet the current understanding of factors affecting decisions to request or withhold accommodations is limited.

OBJECTIVE:

This study aimed to explore barriers and facilitators of workplace accommodation requests among individuals with MS through a qualitative approach.

METHODS:

Eighty-six participants were recruited from agencies serving individuals with MS in the US. Content analysis was conducted to examine responses to one open-ended question related to their perception of barriers or facilitative strategies to request accommodations.

RESULTS:

Ten overarching themes related to barriers and facilitators for requesting accommodations were identified. Among them were three facilitators (i.e., positive work environment, employer compliance and flexibility, and employee self-advocacy and proactivity) and seven barriers (i.e., employers’ lack of knowledge of Americans with Disabilities Act and accommodations, employers’ discrimination and resistance to accommodation requests, employees’ fear/anxiety to request due to associated stigma, employees’ lack of knowledge about accommodations/disability/resources as well as inaccessible workspace).

CONCLUSIONS:

Rehabilitation professionals can educate and empower employees with MS to disclose disability and request needed accommodations. Rehabilitation professionals also can educate employers for individuals with MS about their obligations under the laws to provide accommodations and sensitize coworkers of individuals with MS regarding the disability.

Keywords

Barriers facilitators disability workplace multiple sclerosis

1 Introduction

Nearly one million people are living with multiple sclerosis (MS) in the United States [1]. MS is a chronic, unpredictable neurological disease characterized by cycles of relapses and remissions; some people with MS experience a steadily progressive course marked by a gradual decline in general health and functioning over time [2]. In general, MS is more common in areas farthest from the equator and prevalence rates differ significantly among groups living in the same geographic area notwithstanding distance from the equator [3]. Although MS has been reported in most ethnic/racial groups, studies suggest that MS is more common among Caucasians of northern European ancestry [4, 5] and among women than men [1 , 6–8] a suggestion that hormones may play a significant role in determining susceptibility to MS [3].

MS is typically diagnosed when individuals are in their early 20s right when they are beginning their careers [7, 9]. Symptoms of MS include fatigue, mobility problems, diminished strength and coordination, chronic pain, hypersensitivity to heat, visual impairments, and bowel and bladder dysfunctions, etc. [10]. Because negative perceptions of MS can invoke prejudices [11], people with MS are vulnerable to social exclusion, which in turn negatively affects their quality of life and social relationships [10, 12] as well as employment opportunities [11].

Individuals with MS are faced with various challenges in acquiring and maintaining employment [10]. For example, a higher proportion of individuals with MS report either unemployment or underemployment (e.g., reduced work participation and lower income from paid work) compared to the general population and other groups with chronic diseases such as arthritis, type-2 diabetes or depression [9 , 14]. Doogan and Playford [15] also found that individuals with MS experience some of the highest rates of unemployment among people with chronic and severe illnesses.

The loss of employment brings detrimental consequences to individuals with MS and their families with respect to negative economic and psychosocial outcomes and low healthcare utilization [9, 16]. Therefore, maintaining sustainable and meaningful employment with minimal MS-related disruptions is a necessary target for holistic MS management at policy and practice levels [17]. However, work participation decreases significantly over time with employment estimates dropping to approximately 23% –32% [18, 19]. Individuals with MS, though having strong interests to work [20], are concerned about their ability to manage work and require support with a range of work-related activities, such as disability disclosure, symptom management, and access to support and workplace accommodations [15].

Work accommodations positively impact the ability of persons with disabilities to obtain and maintain employment [15 , 22]. Accommodations refer to any adjustment to a job or work environment to assist a person with a disability to apply for a job, perform job duties, or enjoy equal access and benefits of employment as their counterparts without disabilities [23]. Workplace accommodations can play an important role in assisting people with disabilities to participate in the employment [22]. Generally, accommodations have the potential to equalize opportunities these individuals in job entry, job retention and job development [24, 25]. The Americans with Disabilities Act (ADA) and ADA Amendments Act of 2008 require that employers provide reasonable accommodations to people with disabilities, yet only close to a quarter of workers with newly acquired disabilities report receiving employer accommodations to help them stay at work after the onset of a disability [26]. It is important to assist individuals with disabilities to become socially included in the workplace through fostering inclusive workplace culture and providing supports and accommodations [27].

Important types of accommodations for employees with MS include flexible work schedules and hours, cool work environments, sedentary work, easy access to exits and restrooms, and adapted equipment [28 –30]. Previous studies indicate that most of the frequently requested accommodations involved little to no cost. In a study among 746 employed adult members recruited from the National Multiple Sclerosis Society, Leslie et al. [21] found that the most frequently used workplace accommodations were changes in work schedules as well as working from home part of the time, which accounted for more than one-third of the accommodations reported in this study. Other studies also report that most workers with MS used flexible work hours such as rest breaks, additional time to complete tasks, and permission to work from home [31 –33]. Most of these frequently requested accommodations involved schedule modification that rarely resulted in any cost to their employers [34]. Research has also consistently suggested that workplace accommodations are effective in helping people with MS obtain and retain employment at a considerably low cost to their employers [15 , 36].

Despite the benefits of workplace accommodations and generally the low cost of accommodations, Leslie et al. [21] reported that only about 25% of individuals with MS reported having requested accommodations. In addition, people with MS were disproportionally more likely to allege discrimination related to reasonable accommodations [7]. Most employees with MS reported that they were dissatisfied with the availability of reasonable accommodations and 72% reported that they were dissatisfied with employers’ willingness to allow part-time work from home as a reasonable accommodation [37]. Consistent with their concerns about lack of support for working from home, 59% of these workers reported that employers discourage schedule modifications in order to accommodate the effects of MS [37]. Thus, research is warranted to examine factors that may impact the request of workplace accommodations among individuals with MS. Individuals with MS experience barriers and facilitators to accommodations requests. In general, there is a lack of research related to factors affecting employees’ decisions to request workplace accommodations. The following literature review section discusses these barriers and facilitators.

1.1 Literature review

Many employees with MS report that they lack knowledge about their employment protections under such legislation as the Americans with Disabilities Act (ADA) or the Family and Medical Leave Act [37]. For example, Rumrill et al. [38] found, in a national survey of 1,924 Americans with MS, that people with MS are often dissatisfied with the employment protections provided in Title I of the ADA. Specifically, high numbers of participants from the study reported that they were dissatisfied with on-the-job-accommodations and other ADA provisions such as: discussing job accommodation needs with employers, requesting a review of their accommodation needs without fear of retaliation, understanding the employment protections of Title I of the ADA, and understanding the benefits of disclosing disability status to employers [38]. Furthermore, Sumner [39] found that employers of people with MS were more likely to approve accommodation requests related to physical mobility and vision than they were to accommodation requests for cognitive functioning and mental health issues.

Regarding barriers to accommodation requests for people with MS, two studies were identified in the literature. One was a qualitative study [40], and the other utilized mixed methods [34]. The barriers identified include employers thinking that accommodation requests were a sign that the worker could not complete essential job tasks [34, 40], employees feeling a sense of guilt that they want special treatment, employees were not knowledgeable regarding their rights and responsibilities related to disclosure of disability status under the ADA [40]. Other barriers include employees unable to identify needed workplace accommodations, discuss their accommodation needs with employers without being subjected to retaliation, and lack of evaluation of the effectiveness of accommodations that are implemented to help employees with MS overcome their functional limitations [40]. In addition, negative coworker reaction, especially to those without noticeable physical symptoms of MS could impede employees with MS to request accommodations [40]. Rumrill et al. [34] identified additional barriers such as fear of termination of employment following disclosure of the worker’s MS, employers not wanting to establish a precedent that would lead to accommodation requests by other workers, and workers did not appropriately request for on-the-job accommodations.

One related quantitative study [21] considered impeding factors for using accommodations such as type and severity of MS, number of MS symptoms and presence of cognitive impairments. Participants with progressive forms of MS significantly were more likely to report using accommodations than those reporting relapsing-remitting MS. Participants who reported higher numbers of severe MS symptoms, especially those with cognitive impairments were more likely to report using more accommodations [21]. Furthermore, quality of life was another factor with those who rated their quality of life as significantly lower were likely to use accommodations [21].

In the study among employees who had participated in a telephone and internet-based employment assistance service, “low cost” was perceived as the main reason for success of the accommodation request [34]. Request and provision of accommodation was perceived as a way of keeping a good, committed employee, and participants also thought that one’s ability in engaging in high-quality accommodation discussion was also seen as a reason for successful accommodation requests [34]. Workplace accommodations for employees with MS are most likely to occur when rehabilitation professionals work collaboratively with both the employers and the persons with MS through the provision of education and recommendations on accommodations and assistive technology [34].

People with MS face a myriad of barriers to work. As indicated earlier, accommodations can equalize opportunities for workers with MS. To improve employment outcomes for individuals with MS, it is important to identify barriers to accommodations and address them as well as facilitators and leverage on them. There is a dearth of literature regarding barriers and facilitators of workplace accommodations for people with MS. To the best of our knowledge, only one study was found in the literature [34] that included both barriers and facilitators of workplace accommodation request among individuals with MS. Although the study indicated that it utilized both qualitative and quantitative data, it tended to lean toward quantitative methods on analysis and presentation with a relatively small sample (N = 41). The aim of the present qualitative study is to explore barriers and facilitators of workplace accommodation requests among individuals with MS using a relatively large sample from multiple national agencies serving individuals with MS. The study collected rich qualitative data that lends voice to the experiences of workers with MS and adds to existing literature on the subject.

2 Methods

2.1 Participants and setting

A convenient sample of 86 participants were recruited from agencies serving individuals with MS in the US, including the National Multiple Sclerosis Society and its state and local chapters. The sample size of this qualitative study meets the sample size criteria, ranging 1–30 informants [41]. All the participants met the following eligibility criteria: (a) they needed workplace accommodation(s) in the past three months prior to participating in the survey, (b) were 18 years of age or older, and (c) self-reported MS. Among the participants, 80 (93%) self-reported as Caucasian, 3 (3.5%) as African American, 1 (1.2%) as Latinx and Native American, respectively. Seventy-one (82.6%) self-identified as female. In addition, 48 (55.8%) reported working at non-management positions while the remaining worked at various management levels (low, middle and upper management). See Table 1 for detailed demographic information.

Table 1
Demographic characteristics of the participants

Variables N Percentage (%)

Gender Female 71 82.6

Male 15 17.4

Age 18–24 1 1.2

25–34 14 16.3

35–44 11 12.8

45–54 37 43.8

55–64 19 22.1

> 65 2 2.3

Missing 2 2.3

Race Caucasian 80 93

African American 3 3.4

Latinx 1 1.2

Native American 1 1.2

Missing 1 1.2

Education High school 19 22.1

2-year college 16 18.6

4-year college 33 38.4

Masters 14 16.3

Doctorate/professional 4 4.7

Work status Working part time 28 32.6

Working full time 58 67.4

Job level Non-managerial 48 55.8

Lower-level manager 17 19.8

Middle-level manager 13 15.1

Upper-level manager 7 8.1

Missing 1 1.2

Variables		N	Percentage (%)
Gender	Female	71	82.6
	Male	15	17.4
Age	18–24	1	1.2
	25–34	14	16.3
	35–44	11	12.8
	45–54	37	43.8
	55–64	19	22.1
	> 65	2	2.3
	Missing	2	2.3
Race	Caucasian	80	93
	African American	3	3.4
	Latinx	1	1.2
	Native American	1	1.2
	Missing	1	1.2
Education	High school	19	22.1
	2-year college	16	18.6
	4-year college	33	38.4
	Masters	14	16.3
	Doctorate/professional	4	4.7
Work status	Working part time	28	32.6
	Working full time	58	67.4
Job level	Non-managerial	48	55.8
	Lower-level manager	17	19.8
	Middle-level manager	13	15.1
	Upper-level manager	7	8.1
	Missing	1	1.2

2.2 Procedures

This study was approved by the institutional review board (IRB) at the university of the first author. The first author contacted directors of potential agencies and provided the web link of an online survey. In addition, these agencies were asked to invite their constituencies to participate in this study through their e-newsletters and listservs. The online survey required participants to recall workplace situations in which they needed accommodations three months prior to participating in the survey. Participants indicated whether they requested or withheld accommodation(s), and whether they received the requested accommodations. The survey included demographic items (i.e., ethnicity, gender, age, education levels, work status and management levels). In addition, the survey included types and perceived cost of workplace accommodations requested or withheld. Among those who reported perceived cost of accommodations (72 out of 86), 60% of the requests did not cost anything. Thirty two percent of accommodations cost below $500, and only 8% cost more than $500. See Table 2 for the types and frequency of accommodations requested or withheld. Among all the participants, 66 (77%) requested accommodations. Participants also answered one open-ended question on their perception of workplace barriers or facilitative strategies related to requesting job accommodations. We followed ethical standards of data collection, analysis and dissemination as indicated in the IRB. All collected data were maintained in a secure, password protected computer file, and only accessible to researchers in this study. Data were analyzed and reported in aggregates without revealing participants’ individual personal information.

Table 2
Workplace accommodations requested or withheld

Accommodation type Requested = 66 Withheld = 20

N % ^* N % ^*

Assistive technology 11 16.7 4 20

Assistance by another person 3 5.0 1 5

Flexible schedule 33 50.0 11 55

Job restructuring 11 16.7 6 30

Physical alteration to office space 15 22.7 2 10

Reassignment to another job 4 6.1 2 10

Telework 6 9.1 1 5

Accommodation type	Requested = 66	Withheld = 20
Assistive technology	11	16.7	4	20
Assistance by another person	3	5.0	1	5
Flexible schedule	33	50.0	11	55
Job restructuring	11	16.7	6	30
Physical alteration to office space	15	22.7	2	10
Reassignment to another job	4	6.1	2	10
Telework	6	9.1	1	5

^*Percentages add up over 100%, as multiple accommodations can be chosen.

2.3 Data analysis

We analyzed responses to the open-ended question on barriers and facilitative strategies for accommodation requests using conventional content analysis approach [43, 44]. Conventional content analysis is used to explore an under-studied phenomenon through a systematic classification process of coding and identifying themes or patterns [44]. Among the 86 participants, 62 provided responses to the open-ended question. We removed 9 responses with unclear messages from the analysis. Thus, 53 responses were included in the qualitative analysis.

During the initial phase of data analysis, we read the responses multiple times to obtain a sense of wholeness of participants’ responses. We used a thematic approach by “doing line-by-line coding, reading between the lines, identifying concepts and thinking about all of each concept’s possible meanings as a way of ‘breaking open’ the text, recording what is learned in both codes and memos” [45]. We analyzed the open responses by jotting down our first impressions and reflection and highlighted words and phrases from the responses that seemed to capture key concepts and ideas. Next, we categorized and coded responses into different thematic groups. After the initial data coding stage, we continued the data analysis by identifying specific statements and phrases associated with barriers and facilitators of workplace accommodations being explored in the study. This process assisted to categorize the statements and codes identified in the initial phase of coding. The identified codes were organized into topics, which helped categorize phrases and statements into themes. We coded the comments independently, and compared and contrasted themes and comments under each theme. Analyst triangulating serves as a check on selective perception and illuminates blind spots in an interpretive analysis [46]. Once all the open responses were coded, we examined data within a particular code by either combining certain codes or splitting certain codes through consensus building. Discussion on coding discrepancies also provided researchers opportunities to examine personal assumptions and biases in the coding process. The data analyses continued until it became evident that extending them would produce no new information [43]. Considering the explorative nature of this study due to paucity of research in this area, we did not limit the number of responses within each theme. However, we labelled themes with four or fewer responses as explorative themes.

3 Results

3.1 Facilitators for requesting accommodations

Three overarching themes were identified as facilitators for requesting accommodations among people with MS: positive work environment, employer compliance and flexibility, and employee self-advocacy and proactivity.

3.1.1 Positive work environment

Six participants acknowledged the role of emp-loyer support played in accommodations requests. This support was echoed by an employee who said: . . . “employer is very accommodating - do not see any barriers in job accommodations.” Other participants indicated a combined employer support with coworker support and reported that “I feel very lucky that I had a GREAT boss that was also a friend and co-workers that were beyond belief...” and “ . . . my employers and co-workers KNOW that I have to write every instruction down, and do not get frustrated when I ask them to repeat directions.” Related to this was proactive employer behavior which made employees feel that they are valued and can easily access accommodations if they needed them. This is exemplified by a participant who said: “I do not need other accommodations right now, but my branch manager has offered to widen the entrance door if I ever need a wheelchair.” The general work environment that fostered a disability culture was also identified by a participant who said: “ . . . I work at a Center for Independent Living - since nearly all of us have a disability, requesting an accommodation is not an issue. FAR different from where I used to work. I used to work for a large US bank and it was the LEAST accommodating . . . ”

3.1.2 Employer compliance and flexibility

Five participants who received needed accommodations lauded their employers for facilitating the process. One said: “ . . . needed to accommodate fatigue and dr. appts. I mostly work from home now and work around my appointments.” Another one who received accommodation indicated “ . . . adjustable keyboard tray to reduce stress on upper body, MFC printer next to my desk- lower down for easy access.”

3.1.3 Employee self-advocacy and proactivity

Employee’s self-advocacy, personal positive and proactive attitude were identified as an explorative theme by two participants. One indicated that “In my case... a positive attitude has gotten me pretty much anything I wanted / needed (don’t go to your employer with a ‘they owe you’ attitude)... you need to show them you ‘want’ to be there, the rest takes care of itself.” One male participant was able to take proactive approach to protect his right when experience resistance from the workplace by saying: “ . . . my boss was very resistant to helping me until [sic] I mentioned ADA.”

3.2 Barriers for requesting accommodations

Seven overarching themes related to barriers for requesting accommodations among employees with MS were identified. There can be categorized into employer related (i.e., employers’ lack of knowledge of ADA/accommodations and compassion and employers’ discrimination and resistance to accommodation requests), employee related (i.e., fear/anxiety due to stigma, competency and disability identity, and lack of knowledge about accommodations/disability/resources), general work environment (i.e., inaccessible workspace) and cost.

3.2.1 Employers’ discrimination and resistance to accommodation requests

Employers were identified as a main barrier for employees with MS in their quest to request accommodations. Thirteen participants indicated this to be their main barrier. In one extreme case, a participant reported that they lost their job for requesting accommodations by saying: “ . . . when I told me employer of my disability...I was layed [sic] off. told later by another coworker/supervisor i was lated [sic] off because of medical expenses [sic].” Another participant expressed similar sentiments saying: “I have been replaced by someone with much less education, that the organization can pay less. The development of the program for this company, I felt, was a waste of time, in that I was lead [sic] to believe one thing would happen and then told another . . . ” Participants expressed frustration with their superiors who were willing to flout the law by not providing accommodations and had to be reminded by HR like one participant who indicated that “Supervisors are not at all interested in listening to issues regarding ADA and accomadations [sic] and had to be forced by HR . . . ” Another participant was forced to invoke the law in order to receive needed accommodations. The type of work was also invoked as a barrier as some employees seemed to devalue some types of workers as one participant indicate: “Not all jobs titles will let you get job accommodations. I was a school bus driver and according to the school they could not creat [sic] me a job. I was hired in as a bus driver, that was my title and job. If I could not do that job then there was no other job...” Employer type did not matter in that even those deemed to be knowledgeable of disability rights were not spared. One participant complained that “I work at a facility that ‘spcializes’ [sic] in MS care, yet I am treated poorly.”

3.2.2 Employers’ lack of knowledge of ADA/accommodations and compassion

One employer related explorative theme that was identified as they navigated employment accommodations was employers’ lack of knowledge of ADA/accommodations and compassion. Three participants indicated that this was a barrier for them. One specifically said that “HR might be aware of their legal responsiblities [sic] with respect to ADA, but my principal and assistant were not aware . . . ” Regarding this, another participant said identified both lack of compassion and knowledge of ADA as this: “Lack of compassion and knowledge with the ADA Act when communication and providing accommadations [sic] . . . ” One female participant indicated that she was categorically denied accommodation by reporting that “I was told that RN do not have light duty, and that they could not put me into another position . . . .”

3.2.3 Employees’ fear/anxiety due to associated stigma

Nine participants indicated fear stemming from their personal feeling about how they will be perceived by their employers and coworkers as well as their own personal anxieties and nervousness. One specifically indicated fear of losing their job possibly based on past experiences thus: “ . . . the fear of losing your job. when I told me employer of my disability . . . ” Another participant indicated that what they felt like admitting a loss in requesting accommodations by saying “Personal feeling of weakness, facing the reality that my body at it’s younger age cannot continue to . . . ” One participant felt that they were not being very confident of engaging in the process by saying: “Tentative attitude; not being assertive as your own advocate; fear of being turned down or belittled.”

3.2.4 Employees lack of knowledge and competency on accommodation requests

Lack of knowledge about disability and available resources and competency to accommodation requests was another theme identified by six participants. One participant said “not knowing what i am entitled to, ive been working for many years at same co 50 hrs a week . . . ” One indicated lack of knowledge of disability insurance thus: “not noing about disabitey insurance [sic] . . . ” One Another participant indicated that: “Understanding when I would require an accommodation and coming to grips with the fact that I have a disability . . . ” and another said that “ . . . Main barriers is not knowing where to get help in finding appropriate accommodations.”

3.2.5 Non-Inclusive and inaccessible work environment

The general work environment (i.e., non-inclusive and inaccessible workspace) was another theme identified by seven participants of the study as a barrier for employees with MS to request accommodations. One participant indicated a macro level barrier by invoking lack of union support that borders a subtle political lament by saying: “In this economy, any excuse to get rid of a teacher is a good excuse... In addtion [sic] my union should be able support my job accommodation request, but teacher unions are also under attack.” One participant indicated employer preference regarding priorities when it came to accommodation provision by saying that:

. . . the a/c was broken in multiple facilities at the company–the company chose to fix the larger ones that would help for more people first, instead of the one at my building where i’d specifically requested it because of my condition

Other participants seemed to provide suggestion on what they thought would constitute a good workspace such as one who wrote may be indicative of lack of accessibility at work using statements like “RESTROOM ON ALL FLOORS”, “More places are accessible thse [sic] days, but many are still inaccessible . . . ”, and “office space away from from [sic] elevator.” One participant thought there was lack of coordination of the process which feel like it complicated things for the individual by summing their experience as “Too many persons involved therefore follow through sometimes difficult as is coordination of service.”

3.2.6 Invisibility of disability

The invisible nature of MS was identified as an explorative theme as a barrier for disability disclosure and accommodation requests by four participants. One participant noted that “People can’t see my pain, so they assume that I’m fine. They don’t feel that I need special accomodations [sic] because I look well.” Another one noted that: “ . . . cognitive issues are the most frustrating-because they are not ‘visible’...” Another participant thought that their coworkers misconstrued the intentions of accommodations by says that “A lot of the other workers/student thought it unfair that I received the accommodations. Many people did not believe there was anything ‘wrong’ with me.” Finally, another one had this to say regarding invisibility of MS:

I had to disclose my MS in order to get my office partners to turn down the air to an acceptable level. Now, all my colleagues know that I have MS. It was irritating that this is how they found out, because we kept our office too hot . . . .

3.2.7 Perceived cost of accommodations

The exploratory theme of perceived cost of providing accommodations was the other theme that was identified as a barrier among two participants. One participant called it a “funding is the issue;” while the other said it seemed to indicate that accommodations do not have to be costly as some employers may think: “ . . . It’s important to note that not all accommodations are costly . . . ”

4 Discussion

This study aimed to investigate the barriers and facilitators in the process of accommodation requests among individuals with MS. The role of employer support cannot be overemphasized. In the present study, some employers played a positive role in the accommodation process through compliance with the provisions of Title I of the ADA and were flexible with employees with MS in their pursuit for accommodations. This finding is contrary to past studies such as those of employers for employees with MS who were more likely to be subjects of ADA Title I complaints [7] and those employers lacked awareness of and sensitivity to the needs of people with MS, especially regarding the implementation of workplace accommodations [15]. Furthermore, some employees showed that they had developed self-advocacy and were proactive in seeking accommodations from employers. Leslie at al. [21] identified self-advocacy as one of the attributes of employees with MS that needs to be explored for its potential impact on workplace accommodation use and effectiveness. These changes were positive and exciting, and could be attributed to the efforts from rehabilitation professionals and employers in enhancing their disability and accommodation knowledge and awareness as well as employees’ own self-advocacy in the workplace.

Findings of the study also show that some employees with MS lacked knowledge about accommodations, disability issues and available resources at their place of work. The findings in the current study seemed to validate the results of Rumrill et al. [21]. Rumrill et al. [21] found that people with MS are often dissatisfied with the employment protections set forth in Title I of the ADA such as knowing how to discuss their job accommodation needs with employers. These employees with MS may need education and empowerment by rehabilitation professionals to enhance knowledge of accommodation and other resources and understand the benefits of disclosing disability status to their employers and requesting needed accommodations.

Participants also indicated that they faced fear and personal anxiety that prevented them from requesting accommodations. This fear stemmed from the stigma associated with their request for accommodations. These findings mirror those of [40] in that employees with MS feel a sense of guilt that they want special treatment, which hinders them from requesting accommodations that otherwise would enable them to participate fully in employment. Rehabilitation professionals may need to work with workers with MS to help them reduce MS related stigma and be proactive in seeking needed accommodations.

Employers were also found to be involved in taking discriminatory actions against workers and were resistant in providing their employees needed accommodations. Similarly, employers lacked knowledge of ADA, accommodations and compassion. Workers with MS face unfair discrimination in the workplace such as unlawful termination and layoff, failure to provide reasonable accommodations, unfair terms and conditions of employment, and harassment among others [7]. Rehabilitation professionals may also need to work with such employers to teach and remind them about ADA and its provisions as well as benefits of providing accommodations to employees with MS and to the workplace. Specifically, rehabilitation counselors can perform a valuable role through their advocacy efforts to influence employer attitudes and stereotypes [47].

Both employers and coworkers were found to lack the knowledge related to the invisible nature of MS. This lack of knowledge may lead to insensitivity, microinsults and microaggressions [48]. Rehabilitation professionals should work with both employers and employees to educate and sensitize them about the effects of such overt/covert actions in request of workplace accommodations and pursuit for career goals for employees with MS. This is consistent with past research that shows that workplace accommodations for employees with MS are successful when rehabilitation professionals work collaboratively with both the employers and the persons with MS in such endeavors [34, 42].

4.1 Limitations

This study has several limitations. First, the convenient samples in this study may not be representative of the working population of individuals with MS. A majority of participants in this study were Caucasian female with a relatively high education level, indicating these findings cannot be generalized to other groups. Second, the high percentage of participants requested accommodation in this study should be taken with caution. Since this study is conducted online, participants who had more positive experiences in workplace accommodation might be more likely to participate in the study, while people with negative experiences might opt out of the study. Future research should intentionally oversample participants who withheld their accommodation requests. Third, no response rate was estimated as recruitment was conducted online through snowball sampling. Finally, individuals with no or limited internet and computer access might be excluded from this online survey study. Thus, caution should be taken in interpreting the results.

4.2 Implications for practice

Findings from this study have practical implications. The findings from this study show that employees with MS lacked knowledge about accommodations, disability issues as well as the available resources at their place of work. Similarly, employees with MS faced fear and personal anxiety that prevented them from requesting accommodations. These findings call for education and empowerment by rehabilitation professionals of these employees with MS so they can understand the benefits that accrue from timely disclosing of disability status to employers and requesting needed accommodations. Furthermore, these employees may need education on how to deal with their fears and personal anxieties related to requesting accommodations. Rehabilitation professionals may train these workers by holding disability informational seminars/webinars and provide education from tools like those by the Job Accommodation Network (JAN). In addition, rehabilitation professionals should provide knowledge about the employment environment and the needs of employers. This will allow employees to understand their obligation and rights in the workplace, and enable them to participate in employment without hindrance posed by the effects of MS. Considering the high prevalence of MS among females, rehabilitation professionals should provide additional supports as female employees with MS may face additional workplace challenges due to the intersectionality of gender and disability. For example, facilitation of focus groups for female employees with MS may help them recognize challenges and their support systems, and empower them to take appropriate actions to protect their rights at the workplace.

The employers were also found to lack knowledge of ADA, accommodations and were not compassionate enough to the accommodation needs of workers with MS. These findings may indicate the need for rehabilitation professionals to work collaboratively with employers for individuals with MS to educate them about ADA provisions as well as the benefits of providing accommodations to employees with MS as well as to the workplace. Finally, results indicate that both employers and coworkers tended to lack the knowledge related to the invisible nature of MS. We suggest that rehabilitation professionals work with employers to hold joint or separate sensitivity trainings related to disabilities with the aim of empowering them to be proactive in supporting employees with MS. For example, employers may receive specific trainings on disability awareness and sensitivity which can benefit employers on issues such as “Who are people with disabilities? What are visible vs. hidden disabilities? [49].

4.3 Implication for research

Considering the scarcity of research in the field of workplace accommodations for people with MS, quantitative studies using large national samples need to be conducted to examine constructs identified in the current explorative research. Employees’ perceived competency, knowledge and perceived workplace support and barriers are identified as key factors. Thus, future research may consider using relevant theoretical frameworks such as Social Cognitive Theory to examine the impact of self-efficacy and outcome expectation and workplace dynamics on employees’ decision to request and use accommodations. Future research may also consider examining outcomes of workplace accommodations on work such as job satisfaction and job performance through longitudinal studies.

Because the present study was conducted online, participants who had more positive experiences in workplace accommodation were more likely to participate in the study. People with negative experiences might have opted out of the study. Future research in this area should intentionally oversample participants to ensure that those who withhold their accommodation requests are included in such studies.

5 Conclusion

Individuals with MS face a myriad of long-term employment, economic, and psychosocial related issues. It is important that these workers are supported through the provision of job accommodations to improve their employment outcomes such as through identifying barriers and facilitators of accommodation requests and leveraging on them. The present study revealed several facilitators and barriers for request of accommodations among employees with MS. It is important that rehabilitation professionals, employers and workers with MS and their coworkers work together to eliminate barriers to accommodations for this population and foster an inclusive work environment for them.

Footnotes

Acknowledgments

The authors would like to extend their thanks to Ms. Pamela Sirota for her assistance in converting the references and citations in this manuscript to Vancouver style.

Conflict of interest

The authors certify that they have no conflict of interest with an organization or entity with any financial interest, or non-financial interest in the subject matter or materials discussed in this manuscript.

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