Employment accommodation experiences among American workers with multiple sclerosis: A mixed-method analysis

Abstract

Background

In this study we explored the employment accommodation needs and experiences of American workers with multiple sclerosis (MS). Considerable research has examined the factors that people with MS face in maintaining employment. Relatively little has focused on the accommodation experiences and needs of this population.

Objective

We explored four research questions, concerning (a) the types of vocational accommodations people with MS seek, (b) employer responses to requests, (c) how workers with MS describe their accommodation-related experiences, and (d) what advice participants would offer to other workers with MS.

Method

The research questions were addressed using a mixed-method cross-sectional survey-based design. The sample included 368 iConquerMS members who were either employed (n = 267; 72.6%) or had been employed in the past 5 years. Participants completed a web-based survey delivered through the iConquerMS web-based platform. Data analysis involved descriptive statistics and inductive thematic analysis.

Results

Most (51.3%) working participants were not using accommodations. Most participants who requested an employment accommodation received one. The most frequently used accommodations among employed participants included (a) changes in work schedules (21.72%), (b) working at home full-time (21.35%), and (c) modifications of workstation or work facilities (10.86%). Participants described barriers to accessing and maintaining accommodations.

Conclusion

This study among a large sample of working, or recently working, people with MS provides information on both the successful negotiation and the barriers faced in the employment accommodation process. The implications for vocational rehabilitation professionals are described.

Keywords

workplace accommodations multiple sclerosis vocational rehabilitation

Introduction

Employment retention is increasingly recognized as an important focus in vocational rehabilitation (VR; Krause et al., 2022; Wong et al., 2021). Workplace accommodations often play a central role in employment retention, ameliorating or eliminating barriers to job performance, job satisfaction, and career longevity (Leslie et al., 2015; Sundar, 2017). Indeed, obtaining appropriate work accommodations can be one of the most important factors in enabling an individual with a disability to maintain employment (Chiu et al., 2015; Kirk-Brown et al., 2014; Krause et al., 2022; Leslie et al., 2015; Rumrill et al., 2013; Schartz et al., 2006; Sundar, 2017).

Requesting and negotiating an employment accommodation is a complex and often challenging business and interpersonal interaction, potentially associated with significant personal, social, economic, and organizational impacts. Although VR counselors are well trained in the legal and practical elements of the accommodation process, people living and working with chronic illnesses and disabilities generally are not (Dong & Mamboleo, 2022; Leslie et al., 2015; Padkapayeva et al., 2017; Wong et al., 2021). Nor, frequently, are employers, managers, or co-workers, all of whom may be involved in or affected by the workplace accommodation process (Leslie et al., 2015; Sweetland et al., 2012; Wong et al., 2021). As Sweetland et al. (2012) suggested, it is ideal when workers and employers work in partnership with the support of a skilled and knowledgeable vocational expert who can provide education and information about accommodations and the accommodation process. This situation is not typical, however, and many workers approach the accommodation process on their own and without support (Leslie et al., 2015). This is particularly likely to be the case for workers who experience the onset of disability or chronic illness in mid-career.

In order to better assist and inform people with chronic illnesses and disabilities and their employers about effective approaches to the accommodation process, develop effective messaging about worker and employer rights in that process, and promote employment retention, research on effective practices and the experiences of workers with disabilities in the process is necessary (Sanford & Milchus, 2006; Schartz et al., 2006)). In the present study we explored the work accommodation experiences of Americans with multiple sclerosis (MS), a population that generally experiences disability-onset in mid-career and has historically experienced high rates of unemployment, early retirements, and low rates of return to work (Bishop & Rumrill, 2015; Filippi et al., 2022).

MS is a chronic, frequently progressive autoimmune condition that results in central nervous system demyelination and neurodegeneration (Vitturi et al., 2022a). It is a prevalent neurological disorder, diagnosed in over-900,000 people in the U.S. (National Multiple Sclerosis Society, 2024), and is the primary cause of non-traumatic disability among young adults in the Western world (Filippi et al., 2018). Initial symptoms are most often evident during early to mid-adulthood, with diagnoses typically made between the ages of 20 and 50. Associated with a wide range of symptoms that may impact mobility, vision, cognition, energy, and multiple other functions (Rumrill et al., 2019), MS can have significant impacts on career development and maintenance. People with MS have also been found to be relatively unlikely to engage with VR or other employment resources that may promote career retention prior to the loss of employment (Sweetland et al., 2012; Tansey et al., 2015; Vitturi et al., 2023).

Recent systematic and scoping literature reviews (Huang et al., 2022; Salter et al., 2017; Vitturi et al., 2022a) suggest that the jobless rate among people with MS in the U.S. and globally is approximately 40%, well above the rate for the general population. Time since diagnosis is strongly associated with career exit (Krause et al., 2022), with approximately 40% leaving employment in the first three years after diagnosis and between 50% and 80% within 10 years (McFadden et al., 2012; Strober, 2020). Early retirement rates among Americans with MS are approximately three times the rate in the general population (Vitturi et al., 2022a). These data underscore the importance of developing and providing effective advice and information to workers who are in the first few years of living with an MS diagnosis.

Over the past 40 years, rehabilitation researchers have identified a range of factors that, both individually and interactively, contribute to the challenges people with MS face in maintaining employment. Fatigue and cognitive symptoms of MS have consistently been identified as primary predictors of job loss (Krause et al., 2022; Strober, 2020; Vitturi et al., 2023). Mobility limitations, depression and anxiety, and disease modifying therapy (DMT) use are also frequently identified factors, as are recommendations by physicians that people stop working (Vitturi et al., 2022b). Demographic and work-environment factors, including the social and physical work environment, changing nature of social relationships at work, negative work events, and perceived or enacted stigma and discrimination also play a role (Dorstyn et al., 2019; Rumrill et al., 2013; Strober, 2020; Vitturi et al., 2023).

Although many of these most commonly-identified employment barriers may be addressed or ameliorated through workplace accommodations, researchers have only recently begun to focus on the workplace accommodation process and experiences of workers with MS. Further, while large-scale analyses of the accommodation experiences of workers with MS have recently been reported (e.g., Frndak et al., 2015; Krause et al., 2018; Leslie et al., 2015; Rumrill et al., 2013, 2020, 2021), the majority of these were based on data collected prior to 2020 and the onset of the global COVID-19 pandemic, which in the ensuing years has considerably changed the nature and form of work and accommodation in the US and globally (Bishop & Rumrill, 2021). Ongoing changes in the workforce and the overall economy make continuing research on accommodation experiences necessary. Developing effective approaches and information for workers with MS, and other mid-career-onset chronic illnesses or disabilities, is informed by such research (Leslie et al., 2015; Sanford & Milchus, 2006; Schartz et al., 2006). In the present article, we contribute to and update the existing understanding of the experiences of workers with MS through a mixed-method analysis with a large sample of employed and recently unemployed individuals with MS in the U.S., based on data collected during the COVID-19 pandemic. The twofold purpose of this study was to (a) examine the nature of requested accommodations and (b) evaluate the experiences of workers who make the accommodation requests. Specifically, the research questions were:

What types of workplace accommodations do people with MS seek from employers?

What are the results of accommodation requests in terms of percentage of employers who agree to provide on-the-job accommodations?

How do workers with MS describe their accommodation-related experiences?

What accommodation advice do workers with MS offer, based on their own experiences?

Method

Participants

The sample for this study included 368 people with MS, with a mean age of 51.05 years (SD = 11.43; range: 25–78). The mean age at MS diagnosis was 37.5 years (SD = 10.35; range: 4–68) and the average number of years since diagnosis with MS was 12.71 (SD = 9.02; range: 0–46). Most participants reported their course of MS as relapsing-remitting (71.7%); with 18.8% reporting secondary progressive MS; 6.0% primary progressive MS; and the remainder reporting clinically isolated syndrome (CIS; 2.2%), radiologically isolated syndrome (RIS; 0.5%), or not reporting (0.8%).

The majority of participants reported their sex as female (76.4%), with 13.8% reporting male and 9.8% reporting “other” or preferring not to respond. The largest percentage of the sample identified as White (80.4%), followed by Black or African American (6.5%), Hispanic or Latino (5.4%), and less than 1% each identifying with other categories of race/ethnicity. Most participants were married (63.6%) or cohabiting with a partner (2.7%), followed by never married (13.9%) and divorced (9.0%). Almost one-third reported their highest education level as bachelor's degree (32.6%), with 27.7% reporting having a master's degree, 13.0% having a doctoral degree, 4.6% an associate's degree, 1.9% a technical degree, and 6.5% having completed some college.

The majority of respondents (n = 267; 72.6%) were employed. Among the 101 unemployed participants, all of whom had been employed within the previous 5 years, 75 provided their current jobless status, based on the following response options: “disabled” (n = 30, 40%), “retired” (n = 26, 34.7%), “unemployed, looking for work” (n = 6, 8.0%), and “unemployed, not looking for work (n = 5, 6.7%). Other responses included full-time homemaker (n = 2, 2.7%), student (n = 2, 2.7%), and other (n = 4, 5.3%). Among the employed participants, the mean number of years in their current positions was 9.58 (SD = 9.78); among the unemployed participants the mean number of years in the last position held was similar (10.72 years; SD = 9.90). Two-thirds of the employed participants (67.8%) were employed full-time, 1.1% were self-employed full-time, 20.2% were employed part-time, and 6.7% self-employed part-time. To evaluate participants’ occupations, we provided a list of selected occupational classifications based on the Standard Occupational Classification (SOC) system (U.S. Bureau of Labor Statistics, 2024). Although the participants were employed across all 16 major SOC groups, the largest representations were in healthcare (13.3% of employed/6.8% of unemployed); sales/business (9.2% of employed/1.1% of unemployed); education (7.9% of employed/5.2% of unemployed); management (7.9% of employed/3.3% of unemployed); and office administration (6.5% of employed/2.4% of unemployed).

Instrumentation

The survey instrument was a questionnaire that included 136 items and provided fixed and open response sets. Questionnaire items elicited demographic, MS, and functional data; participants’ accommodation-related experiences; and personal experiences with several aspects of employment. Demographic data, including age, gender, ethnicity, employment status, income, and marital status, and MS data (MS course, diagnosis date, and duration) were collected using a series of questions developed by iConquerMS. Several open-ended questions were also included. Items related to workplace accommodations addressed whether participants had requested accommodations, whether accommodations had been implemented by their employers, and what types of accommodations they were using if they were employed at the time of the survey.

Data for the qualitative analyses were gathered using two open-ended questions. The first asked participants to comment about their experiences regarding the accommodations process at their current or previous workplaces. Participants were also asked “Is there advice you would give to others living with MS who are making decisions about stopping or continuing work?”

Procedure

This study employed a cross-sectional, mixed-method survey design. Institutional review board approval was obtained prior to beginning data collection. The survey instrument was developed and distributed to iConquerMS members meeting the inclusion criteria (adults diagnosed with MS, currently employed or employed within the past 5 years) using the iConquerMS web-based platform. iConquerMS is a patient-powered research network with participants in all 50 U.S. states, U.S. territories, and other countries. iConquerMS users are part of a longitudinal cohort study incorporating demographic, socioeconomic, and clinical data. The participants included in the present analysis were residents of the U.S., adults (aged 18 or over) who were registered on the platform, and individuals who were employed or had been employed within the past 5-years. Study participants were entered into a drawing for gift card; twenty $50 gift cards and forty $25 gift cards were provided.

Data analysis

Data analysis procedures included both quantitative and qualitative analyses. Descriptive statistics (e.g., means, standard deviations, frequencies, and percentages) were generated as appropriate to the research questions. Statistical analyses were completed using the Statistical Package for the Social Sciences (SPSS) software, Version 29. Qualitative analysis involved an inductive thematic analysis (Braun & Clark, 2006, 2022) focusing on broad thematic patterning across the data. The responses were reviewed by the authors separately and collaboratively. The authors first individually created summaries of the data for familiarization. The responses were initially read with a broad focus to understand the general experiences of requesting accommodations for individuals with MS. The researchers individually identified similarities and specific themes. The researchers then collaboratively identified meaningful themes and subthemes and coded the themes using semantic codes to stay close to the content of the data and accurately capture participants’ experiences without providing interpretations. The codes were also created to quantify the different issues and concerns within the data. The codes were refined and systematically numbered under each theme. The researchers returned to the original data to re-code using the numbered codes (Clarke & Braun, 2012). The purpose of this return step is threefold: (1) to quantify the data (e.g., how many people discussed challenges with disclosure?) to answer the research questions, (2) to conduct a thorough review of the data to ensure that the codes created capture the experiences of the participants well, and (3) to increase the subjectivity of the data and reduce researcher interpretations of the experiences of individuals with MS.

Results

Research question 1

The first research question addressed the types of vocational accommodations participants had sought from employers. Employed and unemployed participants endorsed forms of accommodation currently used or used in their last positions, based on a list of 13 forms of accommodation (see Table 1). Among the 267 employed participants 137 (51.31%) reported no accommodation use. As indicated in Table 1, the largest proportion of those using accommodations reported using (a) changes in work schedules (21.72% of employed participants), followed by (b) working at home full-time (21.35%) and (c) modifications of workstation or work facilities (10.86%). The profile of accommodations among the 101 unemployed participants was similar. The majority (59.4%) reported using accommodations in their last position. Those using accommodations reported (a) using changes in work schedules (21.78% of unemployed participants), (b) modifications of workstation or work facilities (18.81%), (c) changes in job duties/procedures (7.92%), (d) working at home part of the time (5.94%), and (e) working at home full-time (4.95%). For both groups, the use of a driver, scribe, personal care assistant, reassignment to another position, and other accommodations were endorsed by fewer than 3%.

Table 1.

Forms of accommodation used by employed and recently unemployed participants.

Accommodation type	Employed participantsnumber (%)*	Recently employed participants
None	137 (51.3%)	42 (41.6%)
Changes in work schedules	58 (21.7%)	22 (21.78%)
Work at home all of the time	57 (21.4%)	5 (4.95%)
Modifications of workstation or work facilities	29 (10.9%)	19 (18.8%)
Work at home part of the time	22 (8.2%)	6 (5.9%)
Change in job duties/procedures	21 (7.9%)	8 (7.9%)
Extended medical leave or leave of absence	17 (6.4%)	4 (3.96%)
Modified equipment	15 (5.6%)	5 (4.95%)
Reassignment to another position	5 (1.9%)	1 (0.99%)
Driver	4 (1.5%)	3 (2.97%)
Personal care assistant	1 (0.4%)	1 (0.99%)
Reader	0 (0.0%)	0 (0.0%)
Other	7 (2.62%)	3 (2.97%)
Scribe	2 (0.75%)	2 (1.98%)

*Note: Based on 267 employed participants; 101 recently employed participants.

Research question 2

The second research question was analyzed in terms of the percentage of employers who agreed to provide on-the-job accommodations for participants. Among the 234 employed participants responding to this question, 92 (39.3%) reported having ever requested an accommodation from their current employers and 79 of these (85.9%) received the requested accommodations. A similar profile was seen among the 93 unemployed participants responding to this question, with 43 (46.2%) reporting having ever requested accommodations from their last employers and 33 of these (76.7%) reporting having received the requested accommodations.

Research question 3

Data for research question 3 were gathered from an open-ended item asking participants to comment about their experiences regarding the accommodation process at their current or previous workplaces. A total of 171 participants, 104 employed participants and 67 unemployed participants, responded to this question. Of these, 94 employed and 61 unemployed participants’ comments were coded. From the 155 coded comments, 558 codes were identified. 340 codes were assigned to 94 comments from individuals currently employed; 218 codes were identified from 61 unemployed participant data points. Six themes and 28 subthemes were identified and coded (see Table 2). Krippendorff's alpha is the standard measure for calculating the interrater reliability for coded qualitative data (Hayes & Krippendorff, 2007). The flexibility of the method can account for missing and nominal data in this dataset. The inter-rater reliability was calculated using the KALPHA macro in SPSS 29.01. The inter-rater reliability between the two raters was 0.845, considered a very good agreement. The following themes and subthemes were identified.

Table 2.

Research question three qualitative data code frequency (N = 558).

Themes and subthemes	Employed	Unemployed	Total
Accommodation process/outcome
Obtained with ease	79	29	108
Obtained but process challenging	14	13	27
Denied	12	27	39
No need	10	13	23
Laid off	4	2	6
Quit	0	2	2
Accommodation type
Reduced work hours or workload	29	27	56
Remote work	46	8	54
Flexible or adjusted work schedule	27	9	36
Equipment	23	11	34
Alternative task	7	8	15
Accessibility	2	8	10
Reason for accommodation needs
Fatigue/low stamina	12	10	22
Vision	6	0	6
Mobility	3	1	4
Low immune	8	2	10
Cognitive challenge	6	2	8
Disclosure experience
Negative	14	14	28
Positive	10	7	17
Challenge type
Stigma/negative attitude	5	13	18
Employee unsure	2	4	6
Burdensome documentation	4	0	4
Time-consuming	2	1	3
Employer not knowledgeable	2	1	3
Support type
Medial	8	4	12
Legal	2	2	4
Family	2	0	2
Disability community	1	0	1

Theme 1. Accommodations request process and outcome

108 comments pertained to the ease of obtaining necessary accommodation. Most comments discussed how the process of requesting accommodations was reasonably smooth due to the employer being receptive. Individuals who perceived ease with accommodation requests also mentioned coming to an informal agreement with their supervisors and/or co-workers.

“I was just very open about my condition and invited them to ask questions about MS. They, in turn, were very accommodating and granted my request.”

27 comments reflected that, although the requested accommodation was approved, the process was difficult. Most individuals described having to go through an unnecessarily complex process – not receiving enough support with the request; receiving ‘pushback’ or resistance from employers, supervisors, and co-workers; and taking a very long time. Some also discussed challenges of maintaining the accommodations after initially receiving them.

“I had to fight several times to keep the accommodation in place.”

“Maintaining the accommodation has been difficult as I work in a small company and there is limited administrative support.”

There were 39 codes where individuals’ requests for accommodations were denied. 6 individuals reported that they were laid off due to requesting accommodations. 23 participants stated that there was no need for accommodation.

Theme 2. Accommodation types

The most requested accommodation described in the comments was remote work. Some individuals described beginning remote work because of COVID-19 and then continuing to work remotely because doing so met their ongoing needs. As employers began asking employees to return to work in person, losing remote work was cited as a challenge or a reason for quitting.

“I requested to work from home when my office mates were coming to work while sick and my immune system was medically compromised. The request was denied. I subsequently contracted the illness from my coworkers and had to call out for several days. My employer approved my request soon after.”

Two subthemes were identified within theme 2 around work hours and responsibilities. Broadly speaking, some accommodation requests were for changes in work without reducing the amount of work while others were for reducing hours or removing specific responsibilities. The former included changes to the work environment (e.g., office space nearer to the elevator or the restrooms), changes in shift schedules, or flexibility of the work hours. Also, many individuals requested accommodations to do less driving or outdoor activities (especially in the heat); some participants requested an alternative, such as replacing these activities with individually assigned office work. However, some participants reported working less or going part-time. There were more comments indicating successfully obtaining accommodations when requesting adjusted work schedules compared to accommodation requests for reduced hours (e.g., going part-time) or work responsibilities (e.g., smaller caseload).

Theme 3. Reason for accommodation needs

This theme provides further details about what accommodations were requested for which symptoms of MS. Several subthemes were also identified. Many individuals experienced exacerbated symptoms with heat and humidity. Among the more frequently requested accommodations were air conditioning for temperature regulation and working indoors, especially during summer. Other frequently requested accommodations were to have their work spaces moved closer to elevators and restrooms. Fatigue and low stamina were most associated with requesting flexible and remote work schedules. Other specific reasons identified included cognitive, vision, and mobility impairments. Equipment accommodations were often associated with these reasons and included detailed written task instructions, standing desks, and customized lighting.

Theme 4. Disclosure

There were 45 comments addressing disclosure, 17 of which reflected participants’ positive experiences. Positive experiences included minimal needs to disclose, favorable accommodation request outcomes, and supportive employers and co-workers.

“I worked in a company that supports people with disabilities, so I had an advantage in discussing accommodations. We discussed my new limitations, what would and would not be safe for me to continue doing, and different options for accommodations. As my MS progressed, we were able to adjust expectations and job duties as needed until I was no longer able to work.”

There were 28 individuals who reported challenges or negative experiences with disclosing MS. Most comments were about feeling anxious or fearful of disclosing the diagnosis in the workplace. Another commonly identified negative experience was needing to discuss diagnosis and accommodation needs with their direct supervisors and/or work colleagues.

“It is awkward to bring up, and I worry that [disclosure] will change their opinion of me. My current job has limited HR, so my supervisor is who I talk to about everything.”

“Disclosure was uncomfortable. I was told I could have the accommodation if my fellow employees agreed with it! They did not make it easy.”

There were 18 comments about direct experiences of discrimination and negative attitudes from employers and co-workers, and several participants specifically mentioned being laid off due to disclosing a disability.

Theme 5. Challenges associated with requesting accommodations

Several subthemes related to challenges detrimental to successful work outcomes for individuals with MS were identified. Five specific challenge types were identified. The most frequently cited challenge was the experience of negative attitudes and discrimination from employers and co-workers (n = 18). A z-score test for two population proportions indicated that those who experienced discrimination and negative attitudes were more likely to be unemployed at the time of the survey (p < 0.01). The next most common challenge identified was that employees with MS were unsure of what accommodations to ask for. Another oft-noted challenge had to do with complex and time-consuming documentation requirements and procedures. As a result of these challenges, several participants mentioned that they chose to quit their jobs, sometimes to pursue long-term disability insurance, instead of requesting accommodations.

Another subtheme related to challenges was the categorization of occupational sectors. Participants noted specific sectors and occupations where the nature of work was challenging to adapt for accommodations, compared to others where adjustments were more readily achievable. Participants often commented on challenges in requesting and obtaining accommodations when working for the federal government; in entertainment and legal industries; and as public school teachers. Issues in those industries and occupations centered on environments in which the person had to be “on” at all times, with strict deadlines and long working hours. Also, several participants mentioned that small businesses seemed to have a harder time providing appropriate accommodations than did larger employers.

“Teaching in person as a general education teacher is very demanding, and I am not sure if it is the best job for someone with a chronic illness. It is competitive, and if it is face-to-face. It is physically and cognitively demanding.”

“I tried working part-time and found it hard for small business owners to make accommodations. I finally went back to school and worked in student positions, which were extremely accommodating for the most part. Hoping future employment is within colleges or universities for this reason.”

On the other hand, employers with work cultures with better knowledge and training around disability rights and accommodations were able to provide more effective accommodations and a more positive experience for the worker.

Theme 6. Supports sought

The final theme is the crucial role of support in the process of obtaining accommodations. Participants commented on how their families (e.g., spousal or parental) support enabled them to continue their jobs despite challenges experienced at work, especially negative attitudes from co-workers and supervisors. Several participants commented on the critical role of medical and legal support's in obtaining accommodations.

“I requested a parking space closer to [my work]… my request [was denied]. [My physician] spoke to the [individual responsible], and I was given the [accessible] parking.”

“Currently, my employer has accommodated all my needs as requested by my doctor. I can now do my job with a flexible schedule that is result-oriented, and I can work from home.”

“I had an ADA lawyer on retainer due to my experience at my previous job. They have granted nearly all my accommodation requests.”

Individuals with medical and legal support appeared to obtain accommodations more frequenly and with greater ease than did those without guidance or assistance from healthcare providers and/or attorneys.

Research question 4

Ninety-one (91) participants responded to the question “Is there advice you would give to others living with MS who are making decisions about stopping or continuing work?” and 123 participant comments were coded and analyzed. From the coded comments, 16 themes were identified. The advice most frequently identified was to “work as long as possible”. This advice, identified by 15 (16.5%) participants, was generally provided without a supporting rationale. When a rationale for this advice was provided, it sometimes centered on the benefits of continuing to work:

“Continue working as long as you can. It gives you a feeling of worth, especially when your disability progresses. Money will be needed later on so keep working!”

“Continue as long as possible as you may not get another shot!”

“Stay as long as you can, for retirement and benefits.”

Other supporting rationales for staying in the workforce had to do with the negative financial and personal impacts of unemployment:

“Yes it's very hard to not work. I'm still grieving. I gave it my best shot to stay as long as possible but the fatigue and cognitive just over took me. My advice is just keep trying as long as you can.”

“Keep going as long as you can. Self-esteem is hard to maintain on disability.”

Many participants giving this advice added secondary advice, which was coded as a separate theme, identified by 9 participants (9.9%): Communicate needs for resources and accommodations with employer (or HR, manager, or supervisor).

“Talk to supervisor or manager and see if you can get accommodations in job or can you transfer to a different position.”

“Talk to your supervisor about your condition and explain what MS is and what you need to continue to work.”

“Communicate with your supervisor as soon as you recognize possible limitations.”

Ten participants (11%) recognized the individual nature of the decision to continue working or not, and advised people to “do the best thing for you”:

“I would advise anyone to do what was best for them and make sure they consider the long-term outcome as well, I was depressed when I could no longer work. Until I finally found a part time job working with kids and I started feeling better about myself.

“Try to do the best thing for your health.”

Disclosure advice was provided by 12 participants (13.2%). The advice was mixed, comprising three perspectives: The more frequent advice was to disclose MS to one's employer (and seek resources/accommodations), but others recommended not disclosing, and a third perspective was to disclose only after seeking advice and guidance.

“Discuss how you are feeling early on with disclosure of your diagnosis. Ask for advice from HR or supervisors as to what accommodations may be available. I didn’t realize until I left how exhausted I had become and feel if I had advice and consultation earlier I may have been able to continue working.”

“I advise full disclosure. It removes the stress of ‘keeping a secret.’”

“Talk to your supervisor about your condition and explain what MS is and what you need to continue to work. Share your information with coworkers but only until MS related conditions manifest and impact your work.”

“Personally I found the effort to honestly disclose my disease status and needs drastically reduced my stress and allowed most of my energy going towards my work and not wasted in worry. I stayed employed for extra years as a result of less stress.”

“I do not recommend telling your coworkers, bosses, supervisors, HR, or anyone in your workplace about your diagnosis and/or symptoms…It is no one's business! MS is one of those diseases that is the most misunderstood. The last thing you need is to be treated differently because you do not feel well.”

“Don't ever disclose your diagnosis at work, No matter what the law says, the company will use it against you ASAP to get rid of you.”

“Before discussing MS diagnosis, talk to someone at the National Multiple Sclerosis Society or other MSers about whether to reveal diagnosis or to request accommodation.”

“Call the MS SOCIETY first. Get advice.”

Twelve participants (12.2%) recommended that people “listen to your body” in making this decision, and not continue if the stress of working becomes too much.

“Don't underestimate the toll that the stress of continuing to work is having on your disease and take care of yourself and your health!”

“Listen to your body. Don't wait too long and let job affect your health.”

“Don't wait so long to make the decision to stop working that you start put your health at risk.”

The next most frequently shared advice concerned financial planning, suggested by nine participants (9.9%) who emphasized the importance of financial planning and saving for post-work life. Related advice included the importance of learning your legal rights, mentioned by seven participants (7.7%), and becoming familiar with disability and retirement benefits before leaving work, suggested by six participants (6.6%). Other themes addressed exploring the option of working from home (5.5%), finding fulfilling part-time work or volunteering after leaving work (5.5%), seeking less stressful work (4.4%), talking to family about the decision (3.3%), self-advocacy (3.3%), communicating with physician about decision (2.2%), seeking continuing education (2.2%), and MS self-management (2.2%).

Discussion

This study contributes to the ongoing understanding of the accommodation experiences of individuals with MS in the workplace by providing a large-scale mixed-method analysis focusing on participants’ experiences with the request process, outcomes, types of accommodations, challenges in disclosure and requesting accommodations, and the support sought during the process – all following the onset of the COVID-19 pandemic in 2020/2021. The results highlighted several key findings that bear discussion here.

In terms of the types of accommodations requested, in both the quantitative and qualitative findings, the most frequently requested accommodation involved changes in work schedules, working at home, and modifications of workstation or work facilities. This prevalence in request type is consistent with the recent systematic review by Vitturi and colleagues (2023) and other large studies and reviews (e.g., (Leslie et al., 2015; Wong et al., 2021) in which the most frequently identified requests were for reduction in work hours or increased flexibility in scheduling. Vitturi et al. (2023) also highlighted the extent to which adverse workplace or physical work environmental conditions may interact with MS symptoms and influence this request. Requests and allowances to work at home appear to be slightly more prevalent in the present sample than in the Vitturi et al. review. However, that review primarily included pre-COVID-19 studies, and the higher rate in the present results likely represents the broader post-COVID-19 pandemic trend in the workforce and changing employer attitudes about transitioning to work-at-home (Smite et al., 2023). We expect that the pandemic has irrevocably changed the nature of work and employers’ perspectives regarding how and where work can be done. Flexible work stations and work-from-home arrangements have often been cited as important considerations for workers with MS (Rumrill et al., 2013), but COVID-19 has rendered such arrangements universal design strategies rather than disability-specific accommodations. If people without disabilities can benefit from an accommodation like virtual work, then workers with MS are able to avail themselves of that option without having to make disability-specific accommodation requests, which can, by their very nature, be stigmatizing and stressful (Leslie et al., 2015).

The qualitative exploration complemented the quantitative responses by providing detailed information on the types of accommodations participants sought. In the qualitative results, remote work emerged as the most frequently requested accommodation, with some individuals transitioning to remote work due to the COVID-19 pandemic and finding it beneficial to continue remotely even after restrictions were lifted. For individuals with MS who face increased susceptibility to serious illness resulting from COVID-19 or Long COVID syndrome (Bishop & Rumrill, 2021), the remote work option may be an essential accommodation. Flexible work schedules also emerged as a particularly effective accommodation, aligning with previous research indicating the importance of work flexibility in facilitating successful employment for individuals with MS (De Dios Pérez et al., 2023; Marck et al., 2020). Participants also underscored the imperative of instituting comprehensive accommodations tailored to address the intricate challenges attendant to MS within employment environments. For example, fatigue and low stamina were prevalent issues among respondents, leading to requests for flexible and remote work schedules. Previous studies have shown that fatigue is a major factor influencing individuals with MS to leave the workforce (Li et al., 2020; Schiavolin et al., 2013). Similarly, heat sensitivity emerged as a significant concern among participants. Many participants reported exacerbated symptoms in hot and humid conditions, highlighting the need for accommodations such as air conditioning for temperature regulation and the option to work indoors, particularly during the summer months. This issue may become increasingly important if current global warming trends continue.

The results of the second research question concerning the percentage of employers who agreed to provide on-the-job accommodations were also generally consistent with prior research. The percentage of the sample requesting accommodations (approximately 40% of currently employed and 45% of recently employed) is slightly higher than that reported by Leslie et al. (2015; 25.7%) but the high rate of receiving the requested accommodation (85.9% and 76.7% respectively) is similar (87.7%). As suggested by Leslie et al., it is concerning and surprising that despite the high rate of accession, a relatively small proportion of workers appear to request accommodations.

In the qualitative responses, most respondents described a relatively smooth process when requesting accommodations, attributing this ease to their employers’ receptiveness. These individuals often emphasized the importance of open communication about their condition, which facilitated understanding and support from supervisors and colleagues. According to Van der Hiele et al. (2016), effective communication between employers and employees is essential in establishing and maintaining accommodations. Additionally, strategies such as direct and explicit communication, regular check-ins, and fostering a welcoming workplace environment are ways in which employers can ensure that employees with disabilities are not only accommodated but also valued in the workplace (Sundar, 2017). Such is the emphasis of Roessler and Rumrill's (2018) Win-Win Approach to Workplace Accommodations,” a plain-language brochure published by the National Multiple Sclerosis Society that guides workers with MS in the process of identifying and requesting workplace accommodations from their employers. Conversely, a notable proportion of respondents faced difficulties despite generally obtaining accommodations. This group highlighted obstacles encountered during the request process, including complexity, lack of support, and resistance from employers or colleagues. These challenges not only prolonged the accommodation process but also created ongoing difficulties in maintaining approved accommodations. These challenges frequently arose from significant differences in how employers and employees perceive accommodations, along with limited employer awareness and understanding of accommodations, stigma attached to accommodations and accommodation requests, and cost-related concerns that influence their provision in the workplace (McLaughlin et al., 2004; Schur et al., 2014).

Challenges faced by individuals with MS when requesting accommodations in the workplace included negative attitudes and stigma, uncertainty about accommodation requests, lack of employer knowledge about MS and accommodations, and time consuming and complex documentation procedures. One of the most prominent challenges identified was the prevalence of negative attitudes and discrimination from employers. This is consistent with the existing literature (Dong & Mamboleo, 2022; Sundar, 2017). Participants expressed concerns regarding disability anti-discrimination laws and the specifics of reasonable accommodations (Sweetland et al., 2007). Due to employers’ lack of familiarity with the ADA, accommodations, and empathy, employees with MS often encounter discrimination in the workplace such as failure to provide reasonable accommodations and unfair terms and conditions of employment (Rumrill et al., 2005).

Another challenge identified in the qualitative results was a lack of clarity among individuals with MS regarding what accommodations to request, indicating the need for enhanced guidance and resources for both employees and employers. Employers’ lack of knowledge of ADA/accommodations remains a challenge in requesting accommodations (Rumrill et al., 2005). Rumrill et al. (2013) reported that individuals with MS frequently express dissatisfaction with the employment safeguards outlined in Title I of the ADA, particularly regarding their ability to communicate their accommodation needs effectively to employers, highlighting the need for education and empowerment provided by rehabilitation professionals to improve their understanding of accommodations and available resources. Here we commend readers’ attention to the Job Accommodation Network (JAN, 2024), a widely used online and toll-free telephone technical assistance center that annually assists more than 2 million people with disabilities, rehabilitationists, employers, and other individuals with all aspects of the workplace accommodation process.

In terms of the advice that participants would give to those living with MS who are making decisions about stopping or continuing work, the themes were generally consistent with the most frequently described experiences but added depth through personal experiences. It is also interesting that some contrasting advice was evident. Although no single advice was offered by a majority of the respondents, the advice to work as long as possible was most frequently provided. The responses pointed to the personal, financial, and health benefits of employment. Advice on disclosure was mixed, reflecting the dual experiences of participants in response to disclosure. Under the ADA and ADAAA, disclosure is essentially a requirement for requesting accommodations, however it was clear that participants had had mixed experiences with the process. The importance of making an informed disclosure, based on advice from a knowledgeable source, and awareness of one's legal rights were highlighted. Ultimately, the fact is that the decision is complex and personal, and the advice to listen to one's body (i.e., pay attention to the effects of work-related stress, symptoms, and ongoing capacity to function in the work role) and to do what is best for the individual was clear across several themes. Finally, the combined importance of financial planning and awareness of disability benefits and retirement programs were clearly emphasized.

VR implications

For vocational rehabilitation (VR) professionals, several implications can be gleaned from this study. First, as has previously been observed in this population (e.g., Leslie et al., 2015), most workers who requested accommodations received them. Approximately half of the employed respondents were currently using accommodations and over 85% of employed workers and 76% of unemployed workers who had requested accommodations had received them. This suggests the importance of encouraging people working with MS to seek accommodations; the old adage “all you have to do is ask” might apply given the high rate of accession people with MS experience following accommodation requests. It is well-established that receipt of needed accommodations allows valued employees to maintain their employment. Knowledge of the relatively high rate of success may be fortifying and should be highlighted in direct customer service with people with MS.

Equally clear, however, is that many individuals with MS, and many employers for that matter, would benefit from resources and information on the legal and practical issues involved, including how and to whom to make a request, and how to respond. Because relatively few workers with MS apply for services through state VR agencies prior to the loss of employment (Tansey et al., 2015), finding routes to make this information available at the right time to those still employed is paramount. Specifically, these would include helping workers to be aware of their legal rights, effective approaches to requesting accommodations and discussing same with co-workers, and resources on appropriate and effective accommodations for the situation (e.g., through the Job Accommodation Network (JAN, 2024) and the ADA Centers National Network (ADAta.org; Roessler & Rumrill, 2018). Understanding where people with MS seek and find relevant resources is an important direction for further study. In the interim, distributing accommodation and career-decision making information and resources that are written for consumers (plain-language summaries, lay summaries) through national and state associations, support groups, patient registries, and directed through medical settings should be prioritized. Effective messaging to employers about the financial and business benefits of retaining valued employees, and correcting employer misunderstanding and misapprehension about accommodation costs, is also critical (Strauser, 2021). This is clearly a role and responsibility for VR professionals. The aforementioned Win-Win brochure, JAN, the ADA Centers National Network, and the National MS Society are recommended as valuable resources to bring greater awareness of the accommodation process to workers with MS and employers.

Limitations

This study had several limitations that affect the generalizability of the findings. These include the fact that the data were based on self-reports. The data collection method may reflect sampling bias, as participants were members of a specific registry, had the opportunity for receipt of incentives, and were an English-speaking convenience cohort. The inclusion of only American workers with MS in this analysis suggests that the results may not generalize outside the U.S. As Leslie et al. (2015) noted, it is likely that differences in employer and worker attitudes, cultural expectations, and relevant employment laws may lead to different results in other countries.

Conclusion

The decision of whether to continue to work when living with MS is a personal and complex one, often influenced by considerations of health, financial stability, social and personal identity, and family and social support. For those who wish to continue working, or face financial pressure to do so, work accommodations may be critically important factors. As the nature of work and the labor market continue to rapidly evolve, it is important to continue to evaluate the experiences of workers with disabilities with the accommodation process in order to provide relevant, timely, and effective supports and information. In this study we explored the experiences of a large sample of workers with MS related to workplace accommodations using a mixed-method approach. The results suggest that the majority of workers with MS who request accommodations receive accommodations, but many struggle with the process for a variety of reasons and a considerable percentage (15% to 25% in the present analysis) are denied requested accommodations. Moreover, many who receive accommodations find it difficult to maintain them. The qualitative results provide important details about the experiences of people with MS in the disclosure and accommodation request process. The need for clear, plain-language, and targeted information and resources for both employers and workers with MS remains clear, and the present findings inform the development and delivery of these resources. This study provides both advice from workers with MS and implications for VR professionals in their efforts to address this important and evolving issue.

Footnotes

Acknowledgements

The authors would like to acknowledge the support and assistance of the members and staff of iConquerMS, without whose assistance the study could not have been completed.

Ethics statement

The University of Wisconsin-Madison Education and Social/Behavioral Science Institutional Review Board (IRB) conducted a review of this study and the study was determined to meet the federal criteria for exemption. IRB number: 2021-0638-CP002.

Informed consent

All participants reviewed an IRB-approved consent form (University of Wisconsin-Madison Minimal Risk Research IRB; IRB number: 2021-0638-CP002) and provided informed consent to participate in this study.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The authors acknowledge and thank Norman L. and Barbara M. Berven for financial support for this research. Support for this research was also provided by the University of Wisconsin–Madison, Office of the Vice Chancellor for Research and Graduate Education, with funding from the Wisconsin Alumni Research Foundation (AAD7927).

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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