Disclosing disability in the employment setting: Perspectives from workers with multiple sclerosis

Abstract

BACKGROUND:

Individuals must disclose their disability to their employer to benefit from work accommodations. Since individuals with multiple sclerosis often have “invisible” symptoms, they must decide whether or not to disclose their diagnosis to employers and whether the perceived benefits are worth the perceived risks.

OBJECTIVE:

The purpose of this study was to identify factors that may influence the decision to disclose disability to an employer and the consequences of disclosure for participants with multiple sclerosis (MS).

METHODS:

Qualitative analysis was conducted using narratives from 8 focus groups held in three US states (South Carolina, Georgia and Ohio). All participants (N = 74) were 18 years of age or older, spoke English, and had worked after MS diagnosis, although not all were employed at the time of the study. In focus groups sessions, participants were asked “Did you decide to tell your employer about your MS? If so, how did it impact either finding or maintaining employment?”

RESULTS:

Narrative responses indicated eight themes that fell into two categories: decision to disclose and consequences of disclosure. In the category of Decision to Disclose, themes included (1) disclosing to explain, prepare, or educate, (2) general disclosure, no concerns, (3) limiting, delaying, or deciding not to disclose, and (4) unsure about future disclosure. Within Consequences of Disclosure, themes included (5) positive and supportive reactions, (6) mixed or variable reaction in the same work environment, (7) no real reaction, positive or negative, and (8) leading to termination of employment.

CONCLUSION:

Our findings shed important light on the diversity of considerations and impact on employment of disclosing disability in the workplace for those with MS and highlight the importance of individuals’ feeling that they have control over the process.

Keywords

Multiple sclerosis disclosure

1 Introduction

Multiple sclerosis (MS) affects approximately 2.3 million people worldwide, with most individuals being diagnosed between the ages of 20 and 50 during what is usually the prime of career development (Kalb, 2012; National MS Society, 2016; Super, 1980). Employment is of great importance to adult life and plays a central role in providing tangible and intangible benefits; yet, for many people with MS, career development often slows and may even stop after symptoms manifest. In fact, people diagnosed with MS report some of the highest rates of unemployment among groups of individuals with severe and chronic disabilities (Doogan & Playford, 2014). This should be of concern to health care providers, as employment is correlated with higher quality of life, well-being (Pack, Szirony, Kushner & Bellaw, 2014), and self-confidence (Johnson et al., 2004).

Research has found that, as MS progresses, there is a sharp decline in employment, with one study finding that only 20–30% of people with MS were employed 15 years after diagnosis (Fraser, Clemmons & Bennett, 2002), and less than 50% of Americans with MS are currently employed (Roessler, Rumrill, Li & Leslie, 2015). Although the reasons for changes in employment vary, the most common reasons are usually due to physical symptoms (Coyne, Boscoe, Currie, Landrian & Wandstrat, 2015), with fatigue being reported as the most disruptive of these (Cadden & Arnett, 2015; Coyne et al., 2015; Simmons, Tribe & McDonald, 2010). Other predictors of unemployment among individuals with MS include general and prospective memory difficulties (Honan, Brown & Batchelor, 2015), mobility-related symptoms, arm and hand difficulties (Simmons et al., 2010), and general cognitive deficits (Frndak et al., 2015; Kordovski et al., 2015; Simmons et al., 2010).

Although illness progression certainly plays a role in high unemployment rates, it is likely that other factors are relevant, such as negative attitudes of employers, lack of awareness of employment-related supports or rights, and failure of employers to provide reasonable accommodations (Nissen & Rumrill, 2016). The Americans with Disabilities Act (ADA) of 1990 and the ADA Amendments Act (ADAAA) of 2008 protect individuals from disability-related discrimination and require that employers grant employees with disabilities reasonable accommodations. A review of ADA Title I complaints filed with the United States Equal Employment Opportunity Commission (EEOC) revealed that individuals with MS are more likely than individuals with other disabling conditions to allege discrimination (Unger, Rumrill, Roessler & Stacklin, 2004). Frequently cited claims by people with MS included failure to provide reasonable accommodations (22.64%), inequitable terms of employment (9.98%), and harassment (7.07%).

To benefit from work-related accommodations, individuals must disclose their disability to the appropriate personnel. However, persons with MS often have symptoms with no visible manifestation (Murray, 2016). These individuals must decide whether to disclose or not to disclose their diagnosis to their employers and whether the perceived benefits are worth the perceived risks. Previous research indicates that the potential prejudice and social stigma that could surface after disclosure prevent some individuals from disclosing, even though this means foregoing accommodations and support from company personnel (Baldridge & Veiga, 2006; Dyck & Jongbloed, 2000). Disclosing is seen as a high-risk strategy, and, in order to disclose, individuals feel they need support, a better understanding of how they are protected legally (Sweetland, Riazi, Cano & Playford, 2007), and education surrounding disclosure and accommodations (Doogan & Playford, 2014).

Research has shown that early disclosure plays a key role in maintaining employment and facilitating appropriate accommodations and support, with one study finding that the odds of an individual with MS remaining employed increased by 1.30 (95% confidence interval: 1.07 to 1.57) when a disclosure was made (Kirk-Brown, Van Dijk, Simmons, Bourne & Cooper, 2014). Chiu, Chan, Bishop, da Silva Cardoso, & O’Neill (2013) found that the provision of job accommodations are effective employment retention and prediction strategies among those with MS, and a qualitative study revealed that vocational rehabilitation interventions to empower individuals with MS to self-advocate and request accommodations also increase the likelihood of disclosure to maintain successful employment (Kirk-Brown & Van Dijk, 2014). Another study found that disclosure was more prevalent among those with greater physical disability (Frndak et al., 2015), seeming to highlight the role of visibility of impairment, as opposed to more invisible manifestation such as cognitive impairment, in the decision to disclose and seek accommodations. This is especially problematic given that cognitive and neuropsychological impairments are the most common symptoms associated with deterrence of labor force participation after MS (Benedict et al., 2005; Raggi et al., 2015; Strober et al., 2012).

Despite literature supporting the notion that disclosure and receipt of accommodations is associated with greater labor force participation, the decision to disclose is personal, and reasons to disclose or not to disclose are multifaceted. To improve employment outcomes, we must better understand the ramifications of disclosing an MS diagnosis in the workplace from the perspectives of those with MS. While studies have examined disclosure among those with a disability, current literature is devoid of many studies examining the subjective aspects of employment disclosure among individuals with MS. Therefore, our purpose in this study was to identify factors, as defined by those with MS, which may influence the decision to disclose one’s MS diagnosis to an employer, and to discuss potential consequences to employment resulting from a disclosure of MS. The findings lay the foundation for in-depth follow-up quantitative studies regarding both the decision to disclose and the potential consequences of disclosure (favorable or unfavorable).

2 Method

Institutional review board approval was received prior to data collection. Participant identification occurred mainly through MS advocacy organizations and support groups in three states (South Carolina, Ohio, and Georgia). Inclusion criteria were as follows: (1) 18 years of age or older; (2) English-speaking; and (3) worked at some point in time after MS diagnosis, although not necessarily employed at the time of the study.

Eight focus groups were conducted with 5 to 11 participants each, totaling 72 participants across all groups. Participant ages ranged from 20 to 81 years (M = 46.79 years; SD = 13.48) with an average age at diagnosis of 34.63 years (SD = 9.70). Time since diagnosis ranged from 0 to 44 years (M = 11.63; SD = 9.18). The majority of participants were female (79.7%), and 25.7% of participants were from racial and ethnic minority backgrounds. Over half of the sample was employed at the time of the study (57.7%), 39.4% were not, and 2.8% were retired.

2.1 Data collection procedures

Prior to the focus groups, informed consent was obtained from all participants. Each group was audio and video recorded and led by two facilitators, one who led the discussion and one who took notes. The focus groups followed a semi-structured format lasting 2–3 hours and featuring questions on the personal, environmental, and policy related factors influencing job attainment, maintenance, and advancement following onset of MS. Participants were queried about their decision to disclose their MS diagnosis to their employer within the context of the overall focus groups. The primary question associated with this study was: “Did you decide to tell your employer about your MS? If so, how did it impact either finding or maintaining employment?”

Professional transcription of focus group recordings was completed and returned to group facilitators, who noted and corrected errors. Transcripts were uploaded into NVivo10 qualitative software After reviewing the transcripts, three authors extract ed topics, themes, and patterns from the source documents.

3 Results

Narrative responses indicated eight themes that fell into two distinct, non-overlapping categories: decision to disclose and consequences of disclosure. In the category of Decision to Disclose, themes included (1) disclosing to explain, prepare, or educate; (2) general disclosure, no concerns; (3) limiting, delaying, or deciding not to disclose; and (4) unsure about future disclosure. Within Consequences of Disclosure, themes included (5) positive and supportive reactions; (6) mixed or variable reaction in the same work environment; (7) no real reaction, positive or negative; and (8) leading to termination of employment. Within the theme of mixed or variable reaction in the same work environment, four facets reflected different ways that participants’ reactions varied, such as providing accommodations, putting limitations on employment, questions about MS and its impact, and being treated differently. What follows is a highlight of these themes pertaining to disclosure, as perceived by those who have MS.

3.1 Decision to disclose

3.1.1 Disclosing to explain, prepare, or educate

Individuals with MS must contemplate whether the perceived benefits of disclosure are worth the perceived risks. Many participants reported that their disclosure stemmed from the desire to explain, prepare, or educate their employers or colleagues. Lucille indicated, “I knew I was gonna have to quit teaching ( ... ) But I went ahead and told my employer in May that I probably wouldn’t be comin’ back the next year. And I jus’ kinda wanted to prepare him.”

Some participants expressed that they felt they had to disclose to explain their symptoms. As stated by Marjorie:

I didn’t feel like I had a choice of disclosing because I was hit so hard, it was so obvious. I mean we’re talking days. You could count calendar days between the time I was running around, no problems whatsoever and suddenly I couldn’t walk. I mean there was no hiding this.

Similarly, Sylvia shared:

My supervisor was saying ‘You havin’ problems. Your organization, and your notes and things. You’re having a problem. We can work together on these things.’ I was like, yes, there is a little problem, whatever. So she was workin’ with me. Then she start talkin’ to me and saying, ‘Well is somethin’ going on that we need to talk about? Is there some other problem you’re havin’?’ And I didn’t want to tell her, but kept diggin’ and prying and askin’ ‘Is somthin’ ... ” So I said, ‘I didn’t wanna tell you, but I have MS. And that’s probably what’s goin’ on right now.

Several participants expressed the importance of using their disclosure as a way to educate their employers and others about what MS is, symptoms of MS, and even legal protections for people with MS. As stated by Andrea:

... that’s one thing that we need to be doing ourselves is educating the public and people that we run into as to what MS is. It’s like some people say, “Well, I don’t know what that is.” I run into people like that nearly every day, so I just feell like that we, as an individual that has this particular problem, should really vocalize and educate the few people we get around. It seem like if they don’t know what it is or don’t wanna know what it is, either way, I feel like we need to be doing a better job with that.

3.1.2 General disclosure, no concerns

Some participants acknowledged that they had no concerns or fear about disclosing their MS. Amy shared that her employer was kept abreast during the diagnostic process, so her employer knew about her MS from the beginning:

I was already employed with the same people, so they knew right from the get go, from when I first had my MRI, and then I was in the hospital. They kind of knew all along, so there was no issue. They knew pretty much as soon as I did.

Another participant, Wayne, echoed this sentiment, and stated that his employer was also with him through the whole diagnosis process, so he kept them informed of everything that was going on. Shortly after receiving her diagnosis, Ruth “went back to work and explained right away to my principal what they had found out and figured out, and he was very supportive about it.” Jan, who worked at a rehabilitation hospital, shared that she had no concerns about disclosing her diagnosis. She indicated, “I was working at a rehabilitation hospital when I was diagnosed; and I thought to myself, Well, I can share this with my boss because they will understand.” Upon disclosing, it was discovered that, despite working in a rehabilitation hospital, Jan’s employer revealed naïveté in regard to MS. Alternatively, Isaac knew his employer would not have a positive reaction to his disclosure, but, because he wanted a way out of the job, he embraced disclosure as a “ticket out of the police department.”

3.1.3 Limiting, delaying, or deciding not to disclose

A number of participants noted that they delayed disclosure, limited the people they told, or decided not to disclose, often due to the perceived stigma or not having an understanding of their rights. According to Joy, she delayed disclosure:

I didn’t disclose it right away. There was a lot of soul searching, a lot about everything going through my head because I didn’t want to be disabled, I didn’t want people to treat me different. I wanted to know that not all my symptoms are MS. There are some days I’m tired, and it’s not my MS. I didn’t want, ‘Oh, well, that’s why she’s doing that. That’s why she’s doing this.’

Like some other participants, when she did decide to disclose, she initially limited her disclosure to a few people she trusted. Brandy recalled her decision to delay and limit disclosure:

I didn’t tell them that I had MS when I got the position. But subsequently because of doctors’ appointments, little flare-ups that I was having, I had to ... I didn’t have to; but I just felt like to avoid further questions, I needed to disclose it. And I disclosed it to my boss and her boss. And they were very compassionate ( ...).

Other participants recalled that, similar to Brandy, they delayed disclosure until after getting hired and then if they decided to disclose, did so at the appropriate time for them, be it when their symptoms worsened, when they needed accommodations, or for other reasons. A variation on this theme is that despite participants wanting to be in control of their disclosure, the choice to disclose is often taken out of their hands. Like Brandy and several other participants noted, they felt they had to disclose in order to explain their symptoms. Other participants reflected on how they limited disclosure, yet due to the person they disclosed to sharing information with other people, the participant’s MS was involuntarily disclosed to other employees at the company. As stated by Wendy:

(... ) and when there’s a new staff that’s hired, I want to ... We have a culture where everybody meets with them individually. And I want to tell them myself because everybody knows. And I get really pissed when they’ve heard already from someone because that is not their business. I just don’t like it. It’s up to me to make the decisions and not for somebody to be gossiping or whatever.

This can be a factor in a person deciding not to disclose or to delay disclosure, because he or she wants to be in control of his or her story. Some participants chose not to disclose at all. As indicated by Lillie:

When I was first diagnosed, I think I mentioned this. I was with a different company, and I made a conscious choice not to disclose because I knew what was happening. [Company Name] was a fabulous company; and they have, actually, a whole cost center for people who have long-term chronic illness and unfortunately terminal illnesses so that they keep them working. But I made a conscious choice not to say anything.

3.1.4 Unsure about future disclosure

Some participants had negative experiences upon making a choice to disclose with previous employers, which impacted their decision to disclose in future situations; on the other hand, other participants reported being unsure about future disclosure despite receiving a positive reaction to disclosing in a previous position. As stated by Gwen:

I was done wrong for disclosing it. But I also don’t want it to come back and bite me in the butt by not disclosing it. So I’m kinda at a place where I don’t know whether I should or not.

Wayne also indicated:

For future employers, it does go through my mind should I tell them up front or shouldn’t; because if a problem arises, you just want to come out of left field with it and they’re blindsided by it. So that’s always an issue if I would tell them up front or not. That I’m not sure about.

Fear of being discriminated against was also cited as a reason for not disclosing to future employers by several participants. As acknowledged by Amy:

“If I had to find another employer, I don’t know if I would tell them up front or not. I might do like Adrienne and probably wait until it becomes an issue and say, ‘Oh, by the way, I can’t come in today because of this.’ Or ‘You need to make these accommodations for me because of this.’ I think I would be afraid to be discriminated against”.

3.2 Consequences of disclosure

3.2.1 Positive and supportive reaction

Some participants were met with positive and supportive reactions to their disclosure. Roger felt that disclosing his MS diagnosis was not only positive for him but also for others with whom he worked:

Yeah, let me understand what you’re going through. And from that day forward ... Actually from the first day I worked there, if I needed time off or if I said I‘muo; just not comin’ in, there was never a question asked. Never. ... So my disclosure was a positive thing for everybody that was involved that I spoke with at that job and basically every other job that I‘vuo;e had so far. Now it’s kind of a moot point, but it was all [a] good experience.

Kimberly’s disclosure was also met by a positive reaction from co-workers:

But the people I worked with, they were very consoling, and they were empathetic, and they were caring about people at the hospital that got MS. “Oh you’ll be okay. He works. He come in, he be at the jail.” And they were very understanding about it.

Similarly, Cynthia experienced an understanding work environment upon disclosure, “And then at [Employer], thankfully, my store manager has MS also; so she was very understanding, actually kind of took me under her wing, told me about it. Thankfully, I’ve had a good experience with it.”

3.2.2 No real reaction – positive or negative

In some instances, participants felt the reaction to their disclosure was neither positive nor negative; in fact, there may have been no real reaction at all. April described how working in the medical field appeared to neutralize the reaction of co-workers to her disclosure:

I didn’t have any problems. Because it’s different with the medical field. There were numerous surgeons, so they knew what MS was. So they were like... I said nothing, I don’t need anything. I don’t need anything. We’re cool.

Jan, who also worked in a hospital, expected an understanding reaction from her boss but received a slightly surprising impartial reaction, “And she said, ‘Well you don’t have an MS personality!’ I still don’t know what that means. They were just ... They were kind of stupid.”

3.2.3 Mixed or variable reactions

Within the theme of mixed or variable reactions, a few variations were apparent. Some employers reacted by providing accommodations , as Kurt shared:

So my boss knew, and he made accommodations, if any were necessary, as far as if I needed to sit down, if I was at a conference and I was on my feet for too long. He made accommodations for me to sit down.

At times, attempts to provide accommodations resulted in putting limitations on employment , as Charlotte explained:

... after falling in front of him so many times, I had to finally tell him. Then he became more accommodating too. “Okay Charlotte, do you really feel good to go to Seattle for a week? Or do you...” He started making... But sometimes that became offensive because I don’t need you to adjust my schedule because you don’t think I can do it. Let me adjust it. That’s how I felt. I never said anything like that because I was, like, any help he can give me was fine. But there was never anything that was done concrete.

Lee felt that limitations on employment were partially due to co-workers and clients:

Yeah, I think my bigger problem was clients, having people know I had MS. Once it got pretty obvious I had MS, I didn’t... My referrals went down substantially because, whether they know whether I was able to do it or not, they just figured that people don’t put... “Hey, he has MS, so he’s done.” Or something like that. So my practice changed from being in the courtroom as much. So that was not an employer thing; that was relationship with my clients and other lawyers in other firms who would refer.

Some participants were overlooked for job promotions, which Maria related to having disclosed her MS diagnosis:

... I disclosed as I needed to later. So everybody around me (my colleagues and my superiors) knew what my situation was. So when I applied for the full-time position that opened up, I discovered later that I was the unanimous candidate at the search committee to get the job. I had the better student evaluations. I just did well. My interview was better; all that stuff. And I didn’t get the job because the dean of the college chose the other candidate and did not have to give a reason. So there’s that nagging feeling of well, what was it. If I was superior on merits, why didn’t I get it?

Questions about MS and its impact were a frequent consequence. Nicole shared:

Sometimes they think, “Oh, there’s nothin’ wrong with her.” Just like all of us sittin’ around here right now. Somebody walk in, they would, “Oh, these people are fine,” until they get up and start movin’. So it’s [laughter]. They come in here, and “Oh, these people are okay.” [laughter] But they do be whispering and saying “Oh, there’s nothin’ wrong with her; she’s just faking, puttin’ on,” something like that.

Kurt had a similar experience:

I can’t believe this. I don’t believe this. I think he’s lying.” You know, like this can’t be so. People say that he’s sick, he doesn’t have the energy to do this, he can’t get up, he can’t go to work. This isn’t true. He’s pullin’ my leg.” So some people don’t really believe you.

A few participants noted that this questioning type of reaction stemmed from the invisibility of MS, as Brandy explained, “Because it’s not an open, visible disability, there’s so many people that say, “Oh, there’s nothin’ wrong with that person.”

Finally, within the theme of mixed and variable reactions, several participants felt they were treated differently after disclosure.

Paulette:Everyone was just very careful around me, and they was ... I would come by, they would just stop talking. ... I went to personnel but it wasn’t like to the point where they didn’t wanna sit with me or anything like that. It was just that my illness, I guess, maybe they maybe was trying to be very careful or they chose what kind of words to say when they talked with me or offered helping me. Things like that.

Hannah:I know that some of my teacher friends, the people, I wouldn’t call them ‘friends,’ but the people I teach with, I can tell that they kind of give you that look like “Ooooh, here she comes.” They just kind of give you like “Oh yeah, oh that’s right; she has MS.” Like it’s not really that big of a deal.

Brandy:You kind of feel like... I kind of started to feel like people shussssssh (whispering) a little bit, or “She’s the one with that disability.” There was kind of the stigma. I don’t know if it was discriminatory or to the level of what legally discrimination would qualify, but there definitely was stigma attached to the disability.

3.2.4 Leading to termination of employment

The final theme within Consequences of Disclosure encompasses the unfortunate reality of termination occurring just after disclosure of an MS diagnosis or when physical symptoms began to require further accommodations. For Sylvia, termination occurred soon after disclosure, “And she fired me not even a month after I told her I had MS.” Colin had a similar experience:

They just chopped you right off. That’s how I felt. I got the call, they told me to come up and get the truck, turn it in, and go, and this and that and the other, and thank you very much, and we’ll start the processing on disability and we’ll consider all these other things. ... I had told ’em because I was being honest; and I just felt like all of a sudden, just choomp. “You’re outta the truck.

Rebecca felt the need to disclose because her physical symptoms were beginning to interfere with extraneous work duties and was met with an unfortunate response:

I told my last boss in 2005 because, in the music business, we don’t work just 9 to 5. A lot of stuff happens after 5 p.m., and you’re expected to be there. And I just told her I was getting weaker, I was feeling weaker, and I was having bladder issues and balance and things like that. So I told her that there will be times where I wouldn’t physically be able to go out after work. But during the work hours I would be here from 10 to 7 and doing the best that I could and doing everything that I could do or whatever. But a month later, that’s when I was laid off.

4 Discussion

Qualitative studies are an underutilized methodology for eliciting the perspectives of participants in a rather open-ended format to lay the foundation for new areas of discovery. We utilized qualitative design to explore issues around employment for people with MS, with several key findings emerging related to disclosure. The two most central issues arising from this study were the importance of the decision to disclose and the consequences of disclosure. Without question, the two general categories are related, as perceptions of the consequences and evaluation of the work environment play an important role in the decision to disclose.

The diversity of approaches to disclosure was reflected in the broad range of themes, with some individuals choosing to disclose as a way of explaining or educating employers and others limiting their disclosure or deciding not to disclose to employers at all. Still others had no concerns about disclosing. Also among the themes was an uncertainty about future disclosure that was not necessarily related to a specific consequence. These findings clearly demonstrate the need for using theoretically relevant frameworks from which to study such decisions.

The integrated behavioral model (IBM) that builds upon early work with the theory of reasoned action (Ajzen, 1991; Ajzen & Fishbein, 1980; Montano & Kasprzyk, 2008) schematically identifies three basic factors related to the intention to perform a behavior (in this case, disclosure) and the relationship of the behavioral intention with the actual behavior (e.g., do the individuals follow through and disclose). Several of the participants’ responses appear to reflect the parameters in the IBM model: (1) attitude toward the behavior (e.g., what are my thoughts regarding disclosure?); (2) subjective norm (e.g., the value others place on disclosure and what they have heard from others with MS); and (3) perceived control (e.g., Do I really have a choice as to whether to disclose?).

Other theories may also be useful to guide the development of future research, such as the role conflict theory that predicts the importance of having hidden disabilities, as is often the case with MS, and how that relates to competing roles. From this perspective, those with hidden disabilities may have more difficulty because of balancing the expectations as a healthy person versus those required to accommodate the disability. So individuals whose disability is not readily apparent may choose to limit, delay, or not disclose all together, whereas those with obvious significant symptoms have had no choice but to disclose. The extent of disclosure may be important, such that individuals may disclose some things more readily than others, rather than just an overall diagnosis of MS which may not have specific meaning to employers (i.e., explaining, preparing, or educating employers).

Findings from this study reveal an equally wide range of observations related to the consequences of disclosure, being highly favorable for some yet very negative for others. Seeing others disclose may have encouraged individuals to disclose, yet some participants felt negative outcomes as a result. Others had neutral reactions. The work environment appeared important, but not necessarily as straightforward as might be anticipated. For instance, those in health care sometimes thought that the diagnosis would be more readily accepted, yet the actual experiences were much less favorable.

4.1 Implications

There are multiple implications of the current study for practice and for future research. First, the decision to disclose MS in the workplace is deeply personal, with substantial variations in individual approaches and outcomes (Nissen & Rumrill, 2016). Because the current study is from the perspective of those with MS, we can preliminarily conclude that the quality of the experience, positive or negative, is strongly reflected in their attitudes about disclosing and their evaluations of the consequences. We do not know the extent to which the results of disclosure may relate to other characteristics of the person, such as job performance or work habits, that are unrelated to MS. Information about the ADA and the protections it offers can be beneficial. The need for information and technical assistance regarding implementation and enforcement of the ADA was a major employment concern among respondents in a recent national survey of more than 1,900 Americans with MS (Rumrill, Roessler, Li, Daly & Leslie, 2015).

4.2 Methodologic considerations and future research

The convenience nature of the sample may limit the generalizability of the findings. Although utilization of the National MS Society for outreach to and enrollment of participants is commonplace (Bishop & Rumrill, 2015; Rumrill et al., 2015), including participants identified through clinical facilities may result in a broader, and possibly more representative spectrum of participants which would be of benefit in future research. Of particular consideration is the extent that engagement with the National MS Society may have increased awareness of ADA protections in a way that may not be reflected among those without those connections and support.

The sample size is actually a strength (n = 72) given the qualitative nature of the study. These results are not intended to be generalized to the broader population of people with MS; rather, these results are offered to provide a framework for further study of disclosure of disability in the workplace. Other limitations are inherent in qualitative methodology, such as establishing construct validity and possible inaccuracies due to transcribing and coding a large volume of narrative data. Further studies using both qualitative and quantitative research methods are needed to develop a thorough understanding of the impact of disclosure in the workplace, including the factors involved in making disclosure decisions and the circumstances under which disclosure leads to favorable rather than unfavorable consequences.

Another limitation is that disclosure was only a partial focus of the data collection groups. Therefore, it is a starting place for generating new knowledge and forms a basis for future follow-up studies, both qualitative and quantitative, even though it did not have the detail or depth of exploration that would be the case if this were the sole focus of the study.

Several types of future research are indicated. First, there is a need for additional qualitative research building upon this study for which disclosure was only one component. Additional research could specifically lay the foundation for quantitative instrument development. Second, we need to develop measures of disclosure that are valid and that cut across disabling conditions. Disclosures may vary in many meaningful ways, including the extent of disclosure, what types of things people choose to disclose, and to whom. Third, consistent with the discussion on different theoretical orientations, we need to invoke theory to better understand the parameters used in making decisions regarding disclosure and the ultimate disclosure behaviors that result. Earlier studies clearly suggest the benefit of disclosure, no doubt related in part to the provision of needed accommodations (Doogan & Playford, 2014; Frndak et al., 2015; Kirk-Brown et al., 2014), yet many individuals choose not to disclose. Familiarizing themselves with these findings will allow counselors and individuals with disabilities to better understand the processes by which disclosure decisions are typically made and to facilitate sound decisions. Fourth, additional research is needed on the circumstances when disclosure leads to favorable versus unfavorable outcomes, and how accommodations that come from disclosure may mediate these relationships. It is only through persistent efforts that we will more fully be able to measure disclosure, the circumstances of its occurrence, and its outcomes. This knowledge will allow us to better understand how to promote disclosure as a means of enhancing employment outcomes

5 Conclusion

Because the diagnosis of MS often occurs among individuals who are in the prime of their work lives, how they think about and handle disclosure within the employment context can greatly impact social, participatory, financial, and psychological outcomes. Of particular consideration is the degree of time as well as personal identity and investment that is often associated with full-time employment and the impact of having (or not having) a supportive, accommodating environment that promotes the most positive outcomes. While the decision to disclose is and must remain an individual one, the consequences of disclosure can and should be regulated and enforced to a greater extent. In particular, results highlight the importance of continuing to disseminate the information, policies, and accommodations that are available to support and enhance employment for individuals with MS and all disabilities to a wider audience and in more effective ways.

Conflict of interest

None to report.

Footnotes

Acknowledgments

The contents of this paper were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research, NIDILRR grant number 90RT5035 (formerly H133B130011). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this paper do not necessarily represent the policy of NIDILRR, ACL, HHS, and you should not assume endorsement by the Federal Government.

In memory of Dr. David Gray, consultant, colleague, and friend, who contributed to the development of this research.

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