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The Cost and Benefits of Employment: A Qualitative Study of Experiences of Persons With Multiple Sclerosis Kurt L. Johnson, PhD, Kathryn M. Yorkston, PhD, Estelle R. Klasner, PhD, Carrie M. Kuehn, MA, Erica Johnson, MA, Dagmar Amtmann, PhD ABSTRACT. Johnson KL, Yorkston KM, Klasner ER, Kuehn CM, Johnson E, Amtmann D. The cost and benefits of employment: a qualitative study of experiences of persons with multiple sclerosis. Arch Phys Med Rehabil 2004;85:201-9. Objective: To attain a better understanding of the benefits and barriers faced by persons with multiple sclerosis (MS) in the workplace. Design: Qualitative research methodology comprising a series of semistructured interviews. Setting: Community-based setting. Participants: Fourteen women and 2 men with MS living in the community who were employed or recently employed at the time of interviews. Interventions: Not applicable. Main Outcome Measure: Accounts of personal experiences related to employment. Results: Four themes emerged: the cost-benefit economy of working; fatigue and cognitive changes; stress in the workplace; and accommodations made to address barriers. Although participants valued work highly, they were also aware of the cost of being employed. The consequences of unemployment or changing jobs were considered negative and appeared stressful. For persons with MS, employment had both costs and significant benefits. Accommodations in the workplace and modifications of roles and responsibilities at home made it possible for individuals to continue working. Conclusions: Health care providers must consider the complexity and timing of decisions by people with MS to continue or leave employment before recommending either action. Identifying critical periods of intervention to stabilize this costbenefit balance is a critical next step for understanding issues of employment and MS. Key Words: Disabled persons; Employment; Fatigue; Multiple sclerosis; Rehabilitation. © 2004 by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation ULTIPLE SCLEROSIS (MS) IS A DISABLING disease of the central nervous system (CNS) that affects between M 250,000 and 350,000 people living in the United States. MS

From the Department of Rehabilitation Medicine, School of Medicine, University of Washington, Seattle, WA (KL Johnson, Yorkston, Klasner, Kuehn, Amtmann); and Department of Rehabilitation Psychology and Special Education, University of Wisconsin, Madison, WI (E Johnson). Supported by the National Institute on Disability and Rehabilitation Research (grant no. H133B980017). No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the author(s) or upon any organization with which the author(s) is/are associated. Reprint requests to Kurt L. Johnson, PhD, Division of Rehabilitation Counseling, Dept of Rehabilitation Medicine, Sch of Medicine, Box 356490, University of Washington, Seattle, WA 98195, e-mail: [email protected] 0003-9993/04/8502-7979$30.00/0 doi:10.1016/S0003-9993(03)00614-2

occurs through a process of progressive demyelinization of the CNS and is usually characterized by exacerbations, which occur during initial inflammation of the myelin sheath. MS is now thought to be an autoimmune disorder that develops from a complex interaction of early exposure to multiple viruses and genetic vulnerability.1,2 Persons with MS typically present with a relapsing-remitting course. However, after 5 to 15 years on average, most experience a secondary progressive phase in which the course changes either to one that progresses continuously or to one that progresses between exacerbations.3 The diagnosis of MS is typically made when adults are in their early 20s; thus, most are of working age and in the early stages of their careers.4 In a recent survey of persons with MS in Washington State, all but 2 of the 736 respondents had graduated from high school, and 67% had at least a community college education (University of Washington National Rehabilitation Research and Training Center on Multiple Sclerosis, unpublished data, 2003). At least 90% of persons with MS have a history of employment,4 and a substantial proportion (40%) of unemployed persons with MS report that they would like to return to work.5 Factors such as higher education should afford a wider range of employment options, including jobs that are flexible with respect to physical demands and schedules. In addition, recent advances in disease-modifying drug therapies make it possible to slow the progression of the disease, thus delaying the onset of more severe disability for longer periods.6,7 Finally, availability of assistive technology8 and policy changes, such as the passage of the Americans with Disabilities Act,9 are also expected to have a positive influence on employment. Despite these positive factors, the rate of unemployed persons with MS remains high. Approximately 70% to 80% of persons with MS are unemployed 5 years after the diagnosis is made.10 Although barriers to employment include mobility problems, fatigue, and visual impairment, LaRocca et al5 reported that physical disability and demographic variables accounted for less than 14% of the statistical variance in predicting the employment status of people with MS. Researchers have identified other factors that contribute to unemployment, including cognitive impairment.11,12 Unfortunately, interventions to mediate barriers to employment have not been highly successful.13 A complex set of variables, including characteristics of the disease, and environmental and social factors, contribute to the barriers confronted by people with MS who are employed. Given the high unemployment rates and the lack of success in vocational rehabilitation interventions,13 a better understanding is needed of the problems faced by persons with MS in the workplace. Because of the complexity of the employment dilemma in MS, we have chosen qualitative research methods with which to examine the work experiences of persons with MS. This methodology allows the examination of complex phenomena within the social and environmental context in which they occur. Through qualitative inquiry, themes reflecting the experiences of persons with MS will emerge that may serve to inform subsequent revisions of intervention strategies. Arch Phys Med Rehabil Vol 85, February 2004

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EMPLOYMENT AND MULTIPLE SCLEROSIS, Johnson Table 1: Characteristics of Participants With MS

Identifier

Age (y)

Gender

Years Since Diagnosis

1 2

FT ST

58 58

F F

12 8

3

WL

39

F

4

Volunteer coordinator

4 5 6

SP PW DS

54 40 32

F F M

9 4 8

7 8 9

BL RC MR

46 51 38

F F F

16 8 16

Administrative assistant Communications specialist Doctoral student/software engineer Loan underwriter Receptionist Medical receptionist

10 11 12 13 14 15 16

GG AA EP GH PI CW GL

27 29 34 46 35 50 62

F F F F F F M

5 5 4 15 5 12 11

Store manager Administrative assistant Project manager Systems analyst Private investigator Stockbroker Insurance broker

No.

Employment Status*

No. of Follow-Up Interviews

Occupation

Elementary school teacher Elementary school teacher

Retired early Retired early

1 0

Quit job—tries to sell her own photography On disability Works 4d/wk Works PT, goes to school

1

Slow walker Walks with makeshift cane Good

1 1 0

Good Good Good

Works FT Works FT Works 4d/wk

3 2 2

Works FT Works FT Works PT Works PT Works FT On disability Retired early

0 2 2 2 1 0 0

Wheelchair Good Uses walker, wheelchair Good Good Good Slow Good Good Slow

Mobility

Abbreviations: F, female; FT, full time; M, male; PT, part time. *Full-time employment is considered as 40h/wk of employment; part-time is considered anything less than full-time.

Although formal research questions are not framed as part of phenomenologic qualitative research methodology, informal research questions certainly guided our interest and framed our study. We hoped to understand the perspectives of people with MS on their employment experiences. In particular, we hoped to learn the value of employment in their lives, what barriers they encountered in the workplace and community, and what resources they used to address these barriers. METHODS Qualitative research methods were chosen for this study because they allow for an examination of work issues from the perspective of the study participant. These methods have yielded valuable information that has been used to further theory development and shape clinical practice in several health-related fields. Phenomenologic research is a qualitative method that allows for the examination of human experience without any preconceived ideas or assumptions.14 The focus of phenomenology is the description of the experiences of persons in their everyday lives. Phenomenology allows for examination and analysis of individual experiences so that the experience is described and the meaning is revealed. It is guided by the use of subjective and first-person experience as a source of knowledge. The main theoretical premise is that the meaning of an experience can only be understood if it is presented within the context in which it occurred. Through in-depth guided interviewing, participants are asked to share stories that relate to work experiences. During a series of semistructured interviews, the participants in this study shared the information he/she felt was most crucial. In a related ongoing study, participants were followed longitudinally to identify events surrounding potential changes in employment status. Participants Sixteen persons diagnosed with MS (14 women, 2 men) were interviewed for the current study (table 1). They were Arch Phys Med Rehabil Vol 85, February 2004

recruited through the newsletter of the MS Association of King County (WA), medical center rehabilitation counselors, outpatient MS clinic nurses, and by word of mouth. Selection criteria included a diagnosis of MS, current or recent status as employed, and ability to participate in interviews at a location of the subject’s choice. Eleven of the 16 had completed at least 1 follow-up interview at the time these data were analyzed. Participants were enrolled sequentially into the study, and all completed an informed consent document approved by the institutional review board of the University of Washington. As part of the consenting process, participants were told that they could discontinue participation at any time. Interviews Interviews were conducted by teams of 2 researchers. One researcher was the primary interviewer. The other contributed to the interview when appropriate and also kept field notes that included any pertinent observations about the participant during the interview. This strategy is typical in phenomenologic qualitative research and relieves the primary interviewer from taking concurrent field notes, thus allowing full concentration on the interview. Interviews ranged in length from 60 to 90 minutes at a location that was most convenient for the participant, that is, either at the University of Washington or at the participant’s home or work setting. All interviews were audiorecorded. The interview style was unstructured and openended. The interviewers occasionally used prompts or questions to guide the participant back to the focus of the study. The purpose of the interview was carefully explained and reviewed when necessary. This explanation introduced the notion that the participant was the expert and the interviewer was interested in understanding what it was like to live and work with MS. Interviews began with broad questions such as, “Tell me what a typical workday is like for you.” The interviewer then asked questions that guided the participant to describe fully

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his/her experiences regarding work, physical and social environments, work culture, and barriers posed by MS. Questions were asked in as neutral a language as possible to minimize potential bias and presuppositions. The interviewer encouraged the participant to paint a vivid word picture and asked for further description or definition when information was vague or unclear. Analysis The recorded interviews were transcribed verbatim. Accuracy of the transcripts was verified by the appropriate interviewer, who also transcribed any portions of the interview that were difficult to understand. Data analysis was consistent with the principles outlined by Benner.14 Each member of the research team read each transcript several times to grasp the essence of the entire interview. The interviews were then reread several more times to identify ideas or opinions about working with MS. A coding system was developed that indicated the important related issues. Ethnograph software, version 5.0,a a computerized indexing system, was used to organize and code the large amount of information. As is typical in phenomenologic research, the initial codes were concrete and descriptive in nature. For example, if a participant talked about fatigue, that portion of the text was coded as “fatigue” without any interpretation of how that might relate to work. As the transcripts were reread, common themes emerged. For example, it was clear from the transcripts that most of the participants associated cognitive changes and fatigue. Both were often experienced simultaneously and had an impact on the participants’ ability to complete work-related activities. Initial coding of the interviews was completed both separately and in a group consisting of the authors. Summary descriptions of the themes presented in each interview were drafted to facilitate identification of similarities and differences. Initial themes were reviewed and discussed by the entire research group. Each author brought a unique perspective to the interviews and moved the interpretation process forward beyond any one person’s views. The trustworthiness of the analysis was enhanced by the research team’s commitment to challenge each other’s biases and to honor the perspectives of the participants. This process continued until all authors agreed that the themes accurately reflected the information provided in the interviews and addressed the general questions guiding the study about the value of employment in the subjects’ lives, what barriers they encountered in the workplace and community, and what resources they used in addressing these barriers. The findings were further validated during the follow-up interviews with the participants.14 A summary of the initial interview and the interpretation of it was reviewed with those participants who completed follow-up interviews, and they were asked to comment on the validity of our interpretations. The research team then reviewed these comments, and themes were adjusted, if necessary, to incorporate participant feedback. The remainder of the follow-up interviews focused on changes that may have occurred since the initial interview for future research. RESULTS The average age of participants was 44 years (range, 20 – 62y), and the average time since diagnosis was 8.9 years (range, 4 –16y) (table 1). Participants were divided between being currently unemployed (n⫽6), employed part-time (⬍30h/wk) (n⫽5), or employed full-time (ⱖ30h/wk) (n⫽5). Four themes emerged from the analysis: the cost-benefit econ-

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omy of working; fatigue and cognitive change; stress in the workplace; and accommodations to address barriers (table 2). The Cost-Benefit Economy of Working Work was highly valued by our participants; however, they described not only the benefits of work but also the costs of remaining employed. For most, the benefits outweighed the cost because they felt that work was therapeutic. The responses from those who had recently left employment were similar to those who were employed. They reflected on their value of employment and their loss associated with the transition from employment. The value of working. Participants consistently described the importance of work. For some, the financial benefits were considerable. GH (table 1) noted that, “My doctor recommended I go on long-term disability, but I’m just not ready for that. I need to work and pull in an income.” For BL, it was not just the income but also the health care benefits that were critical. “I can’t believe how expensive medicine is. I am so glad I am working and have benefits.” EP reiterated these concerns as she explained why she was afraid to leave a job she did not particularly like. “I’m afraid of losing the good health insurance coverage that I have. Also, here I have the flexibility I need during exacerbations, and I don’t know what it would be like in other jobs.” Participants’ comments about the value of work went well beyond its financial benefits. For many, work was important to their identity, self-esteem, and social contact. For example, GH reported that, “I want to do a good job, and be valuable and worthwhile. No matter how hard you try, a lot of your selfesteem is based on your work.” She commented that the value of work “ . . . has to be beyond the pay and benefit issues. You have to realize that you need to be a part of society . . . do something where you are serving other people.” Part of the important value of work was access to social networks. As MR noted, “If you lose your interaction with people, your world is going to shrink.” GH had considered working at home but concluded, “Having your peer base at work is really important. I don’t think I ever would have been comfortable working totally at home.” The cost of working. Participants described the price that they paid to maintain employment—activities outside of work had to be curtailed because of reduced energy and endurance. When asked about the economy of work, EP summed up the cost and benefit by saying, “Oh, it costs me having a life outside of work sometimes, because I am pretty much exhausted, but I actually like working.” GH also described the cost of working: “Sometimes I maybe push a little too hard and make myself worse than I would be, but I think in the long run it works for me because it keeps my spirits up.” Work is therapeutic. Participants saw work as helping them live more fully with MS. In fact, some described working as therapeutic. BL commented, “I don’t think about being tired when I’m at work, my mind is too busy to think about my legs hurting. That’s the best reason why people should work. You forget about the MS. If I am home, I get really depressed.” GH considered the alternatives of working or staying at home: “If I make myself get up and go I feel better. Lying in bed and thinking about everything that’s going wrong makes me feel worse.” MR reiterated this idea: “If you’re just focused on yourself all the time and your disability, I think you are going to get worse.” Similarly, BL described the trade-offs: “Working is good for people. Yes, you will be fatigued and have trouble walking, but you can manage it, you can survive, and you can be a good employee.” Arch Phys Med Rehabil Vol 85, February 2004

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EMPLOYMENT AND MULTIPLE SCLEROSIS, Johnson Table 2: Theme, Subthemes, and Examples of Issues Discussed by Participants Theme

The cost-benefit economy of working

Subtheme

Example Issues Discussed

The value of work

The cost of work

Fatigue and cognitive changes

Work is therapeutic Explaining fatigue: the MS perspective

Fatigue alters thinking: thinking is hard work

Fatigue as a surrogate for cognitive change

Stress in the workplace

Stress is a feeling influenced by the work environment Exceeding your resources Stress interferes with performance at work

Accommodations to address barrier

Concerns about others’ reactions Providing what is needed Work outside of workplace

Fatigue and Cognitive Changes Although participants valued work highly, they also encountered significant barriers to employment with respect to fatigue and cognitive changes, and the interaction between the 2. Explaining fatigue: the MS perspective. Most participants mentioned fatigue in describing their typical workday. When asked for more detail, they described how MS fatigue differed from ordinary fatigue. For example, ST distinguished MS fatigue as, “We [people with MS] use the word fatigue to describe it, you think tired. It’s different. Your reserves are depleted and they don’t refill, you can’t refill them.” Fatigue may not only be profound, but also unpredictable. According to DS, on some days “ . . . fatigue means not being able to get out of bed at all. Days where physically you just can’t do anything.” FT commented that fatigue dictated her lifestyle and her activities for the day were dependent on a level of fatigue that varied from day to day. She described this unpredictability: “Now I don’t think about unpredictability as far as waking up tomorrow morning with an attack. That sort of left me, but I carry the fear of am I going to be able to handle a situation, if I get tired.” For some participants, fatigue varied greatly throughout the workday. BL organized her workday over issues of fatigue. She stated, “Work is really in the morning when I have energy, it’s such a difference the energy I have in the morning when I first get to work, and then in the afternoon, it is incredible.” Several participants mentioned that their fatigue was not visible to others. BL described her increasing fatigue toward the end of the workday: “I don’t look different, I feel different.” ST felt that people didn’t appreciate her need to accommodate her fatigue when she said, “Sometimes I wish that I dragged Arch Phys Med Rehabil Vol 85, February 2004

Financial Identity and self-esteem Social interaction Limitations in nonwork activities Pushing too hard Reduces focus on symptoms Lessens depression An MS definition Profound, unpredictable, and variable Invisible Fatigue affects thinking Thinking requires effort Thinking about thinking Cognitive change is frightening Cognitive change is not acceptable in the workplace A sense of apprehension People make a difference Juggling all those balls Fear of failure Worsens symptoms Stress causes exacerbations Viewed negatively by others Educating coworkers Overemphasize disability Accommodation through personal action Informal employer accommodations Conservation of energy Changing roles and activities

my foot. That way people would know that I’m not faking.” DS had difficulty on the job because those around him could not “read” his level of fatigue: “I have to perform at a certain level at my work, and some days that might be really easy, some days it might not. When I don’t perform at that level it’s not because I’m stupid. It’s not because I don’t get it. People don’t remember that.” In summary, participants with MS described a fatigue that they perceive as being different from what people without MS experience. MS fatigue can be profound, unpredictable, and variable during the day and may not be apparent to coworkers. Fatigue was not necessarily related to specific activity but often progressed throughout the day or was present when they awakened in the morning. They saw fatigue as a barrier to employment and other life activities and compensated for it by scheduling important activities earlier in the day. Fatigue alters thinking: thinking is hard work. Participants noticed that as they became fatigued, they had more difficulty with cognition. This association between fatigue and cognitive changes was described by DS: “Fatigue is like cognitive mud that I have to slog through.” MR, a receptionist, noted that, “I function better in the morning and, really, the tired starts probably about 1:00 or 1:30, and then just goes downhill from there. I just get real tired and I’m not as quick mentally. I find myself looking up more phone numbers, more directory information.” Similarly, as she became fatigued at work in the afternoon, BL reported, “There are cognitive problems. I don’t think as clearly. It doesn’t mean I can’t do my job, but I think it is a struggle; most things are a struggle.” And EP also reported that when she was fatigued, “I have trouble concentrating on what

EMPLOYMENT AND MULTIPLE SCLEROSIS, Johnson

people are saying. I have to work a little harder to think about what people are saying.” Participants described the additive effect of exerting conscious intent over previously automatic activity and additional cognitive effort to learn and to maintain vigilance and self-evaluation. This extra effort stretched diminishing cognitive resources when undertaking complex tasks at work. Coping with cognitive changes required effort and was itself fatiguing. BL was concerned that in the afternoons when she is tired, she does not think problems through and may respond impulsively. “I just have to remind myself to think before I give out an answer.” PI worried about her ability to learn new material at work. “I have cognitive changes. I struggle with what I want to say, and I have short-term memory problems and problems concentrating. I have to read things more than once or if I’m asked about it, it’s gone.” PW was frustrated by the changes in her ability to quickly grasp complex conceptual material at work. She said, “I had the ability to understand concepts, conceptually see things and understand the rationale without having to touch, feel them in the past. Now I don’t have that at all. I can’t retain the information unless I do a lot of hands-on working with the information, immediately.” And not only did she need to “think about thinking,” but she also had to expend cognitive effort on previously automatic motor activity—and this contributed to her fatigue, which in turn affected her thinking. “I think what wears me out is I have to think about walking and talking. I have to think about everything most people do spontaneously and that uses a lot of energy.” Multitasking became more difficult or impossible, as WL explained: “I am always concentrating, I cannot talk to someone and walk. I don’t look for something in my purse and walk, I am either walking or I am stopping. The same thing with talking, it’s not just automatic, I need to think about it, or I slur a lot more than I do. Natural things you should do, I have to think about in order to do.” In summary, the association between fatigue and cognitive change formed a cycle. Fatigue brought about difficulty in thinking. The cycle continued, because thinking required effort and attention that, in turn, resulted in more fatigue. This cycle had an impact on many aspects of employment, such as performing activities requiring multitasking, and required significant compensation, including vigilance. Cognitive changes are frightening. The possibility of cognitive change was frightening. Difficulty learning new material and negotiating change at work led RC to state, “My God, am I always going to be this way? Is this always going to be where I can’t function well enough physically or mentally to comprehend anything new and take it in and adjust it and make it work? Now I go into work every day and pray to God, ‘Please don’t give me anything different’.” She was frightened and felt that she could not cope even with minor changes in her job and that she might soon have to quit working. At times, the term fatigue was used as a proxy for cognitive change, perhaps because losing cognitive function is frightening or because cognitive changes are not viewed as acceptable in the workplace. BL indicated that the issue of cognitive change “scares me to death. I say I have problems because of fatigue. I wouldn’t ever want to say anything about the mind when I work in a job where I need to be sharp and have my mind alert.” In summary, fatigue in MS was described as profound, variable, and not readily understood by others in the workplace. A cycle was established when fatigue altered thinking and thinking became effortful and potentially fatiguing. Because the potential of cognitive change was frightening and/or pejorative in the workplace, the language of fatigue was substituted

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for cognitive change by some. The cycle of fatigue and cognitive changes was seen by participants as having a significant impact on their employment. They reported using a variety of compensatory strategies to reduce the impact of the changes, but these same strategies also exacted a price in terms of effort. In particular, several participants noted their fear that they would not be able to compensate successfully if there were major changes in their job duties or if they changed employment. Stress in the Workplace Participants frequently commented on stress and its relation to employment. Three subthemes emerged: a feeling influenced by the environment, exceeding one’s resources, and interfering with performance at work. Stress is a feeling influenced by the work environment. Stress was described as a feeling or sense of apprehension. PW suggested, “It’s not panic, but the feeling that I can’t get this together, I’m going to forget something.” Although stress was an internal state, participants related stress to factors in the environment, especially people. When discussing changes in the stressfulness of her work environment, BL stated, “I think people make a difference, the most difference actually.” PI indicated that her job was stressful because of her perception of the social conventions of her clients, “The attorneys we work with, particularly the defense attorneys, can be pretty demanding . . . they lack social skills; they can be very abrupt and aggressive and sometimes rude and patronizing, condescending, so that is stressful for me to deal with.” Exceeding one’s resources. Participants described situations that previously would not have been stressful as becoming problematic because of diminished cognitive and physical resources. CW indicated that stress once made her job as a financial consultant “enjoyable.” She stated, “There was a time that I could easily do my job to make order out of chaos. Let me at it. That is just what I enjoyed most, to organize things and whip it into shape, and leave just really happy at the end of the day.” She left her job when fatigue and cognitive changes occurred, and she no longer had the resources to perform her job. She described when stress changed from enjoyable to aversive as being “the point at which I simply did not have the energy to gather my wits about me. It was too hard to think. I couldn’t juggle all of those balls anymore, and I realized what would happen if I dropped this one.” PI also described a situation when being overwhelmed by work activities was stressful. She stated, “Sometimes when I am by myself and my caseload is very busy, I am so overwhelmed I get stressed out and anxious, anxious to the point of paralysis fright, I can’t do my work.” Stress interferes with performance at work. In all but a few situations, participants indicated that stress decreased their effectiveness at work. GL commented that stress made his symptoms worse: “When I get stressed I can’t talk very well. I talk like I am drunk. I can’t walk very well. It makes the MS worse immediately.” SP described a challenging cycle of cognitive changes and stress. “It’s kind of like a round-robin effect, the more stress there is the more confused I get, and the more confused I get the more that stresses me.” Others suggested that they attempted to avoid stress in the belief that it may lead to an exacerbation. GH believed that stresses “ . . . would bring on an attack, and I would be less functional than I am now.” DS changed to a less stressful job: “I don’t work as a teaching assistant anymore. That actually was causing quite a lot of stress and made my MS worse.” Participants also reported that, independent of their own perceptions about stress, supervisors and coworkers believed Arch Phys Med Rehabil Vol 85, February 2004

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that aspects of their employment were stressful and that this stress was harmful to the participants. This paternalistic presumption, although well intended, disrupted the career development of several participants. GH told of an incidence in which her supervisor made assumptions about the negative consequences of stress—assumptions not shared by GH. She reported, My supervisor told me, ‘I am afraid that sometimes I hold back putting your name out there for promotion, because I worry about the toll stress would take on you.’ She totally respects my work, but she was concerned because of my MS that the stress would be too much for me. So she didn’t consider me for promotion, or even inform me, and I would have been the best one for two of those jobs, and should have been promoted. These were promotions GH would have valued, and she believed that she could have easily performed the duties. Several participants indicated that they had been advised to leave work because of the potential adverse consequences of stress. CW indicated that, at the time of her diagnosis, her physician told her, “If you can’t take two naps a day and avoid all stress, go home.” Another participant, FT, was told by her physician, “You are not doing yourself any good pushing to the limits like you are, and you need to get out of teaching.” When his physician advised him to sell his business to reduce stress, GL remembers thinking, “I first said, ‘Give me a break,’ but he proved it to me.” All of these individuals worked for several years after being advised by their physicians to leave work. Accommodations to Address Barriers Participants described a variety of social and physical barriers they anticipated or confronted at work. These ranged from concerns about discrimination by employers and overemphasis on disability by employers and coworkers to inaccessible physical environments. They also described the actions they and their employers took to accommodate their needs. Finally, they discussed the accommodations they had made in their personal lives to continue working. Concern about the reactions of others. The decision about whether to disclose her MS to employers and coworkers was not straightforward for AA because of the potential reactions of others. She stated, “It’s nice to think that people don’t discriminate, but they do. I always used to be ashamed of it or scared to tell somebody, because it is very much my problem—it’s my deal.” BL described clearly the insidious consequences: “I think basically you get stereotyped and they see you as your ailment and they don’t see you for yourself.” Disclosure was not as simple as telling the supervisor that one had MS. EP observed that it required ongoing effort, and the turnover of coworkers and supervisors magnified the problem. She stated, “I just don’t feel like training a new manager about my MS every 6 months. It’s just not worth it.” PI reported that because of how she thought her employer responded to the initial disclosure, she no longer discussed MS issues with her supervisor, although she required significant accommodations. She said, “I just try to hide MS from my boss. I feel like I am being penalized for my disability. My boss reneged on a promise to give me a partnership a couple of years ago. I always wonder if it isn’t because she doesn’t want a partner who is disabled.” Uncertainty about how others will evaluate MS and keeping boundaries between personal and work issues were important to RC. She said, “I move real slow and one day the president saw me and asked if I was okay, and I said it was a back pain. I wasn’t going to stop and say, ‘Tell you what, let’s talk about Arch Phys Med Rehabil Vol 85, February 2004

MS.’ I just didn’t feel like it was an important thing to tell the president of the company.” AA described a similar strategy with respect to an episode of severe fatigue when she missed a week of work. “When I was fatigued in December, I just said I had a cold. It is just so much easier than trying to explain. People know about colds. Colds are real. But if I say I’m tired, people think that, well, everyone is tired.” Cognitive changes were particularly difficult to disclose, perhaps because employers may have more difficulty accommodating cognitive changes than changes in physical function. PI illustrated this difficulty when she said, “Right after I was diagnosed, my employer said that any workstation modifications that I needed she would be willing to make for me, but I think she has no understanding of the cognitive-type things I am going through.” As MR noted, even changes in mobility are generalized. “Now people will probably think it has gotten worse when I start bringing the wheelchair into work, but I’m still able to do everything.” Providing what is needed. Several participants avoided use of any accommodations except their own assertiveness. For example, GH stated that, “If I really need something, I will let you know and you don’t have to make a big show of finding something for me, or giving me a seat. I use the walls for balance, so I don’t use my cane. I just do what I have to do.” She subscribes to the “just live with it” strategy and sees that as less intrusive than using accommodations. To avoid disclosure, DS used clever conversational tricks to compensate for his changes in vision. He said: I used to work as a teaching assistant quite a bit, and I’d write stuff on the board and I couldn’t see it. If someone asked me . . . ‘What does that say?’ I’d have to sort of trick them into pointing me to where on the board. This was all prior to [my] actually coming out with the disease. I tried to keep it a secret as long as possible. Setting up routine schedules, making the day predictable, and allowing for rest breaks were cited by many participants as simple, practical, and useful strategies for managing fatigue and cognitive changes at work. For example, BL noted, “I have a routine about how and when I do things. It makes me faster. I don’t forget as much.” MR reported, “I do a morning break, but I tack my afternoon break on to lunch so I can really rest.” PI, who had difficulty learning new material, planned in advance so that she could accommodate the extra effort required to do her job. “In preparation for interviews, I read and re-read material so I can remember what the pertinent issues are.” Most of the workplace accommodations that involved the employer were arrived at informally by mutual agreement. At her work, GH reported: They were saying, whatever you need. You can work half a day, and sometimes you may come in and then go home if you’re fatigued. Or, you can call and say ‘I’m not coming in at all.’ There was no formal agreement. If I get up in the morning and I’m just not doing real well, I can turn on my computer they bought me and connect to my e-mail. The accommodation BL needed was simply a modification of her schedule. “I come in early in the morning and try not to stay late. I manage the work and the work gets done. It may be on my schedule, but it gets done.” Some jobs are inherently flexible and accommodations are a natural part of that flexibility. PW described the accommodations in her work, “Everybody is aware of my condition, that I have MS. They’re very accommodating, and again since a lot of stuff I do is desktop publishing, incorporating, setting up

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meetings, and doing things like that, a lot of that I can do from home. I don’t need to be at work.” Accommodations, including assistive devices, address fatigue and can have unanticipated benefits. For example, BL observed: I do use an electric wheelchair at work that I got through the DVR (a state department of vocational rehabilitation). I am always far away from the restroom, and it just takes so much energy to walk, so that helps quite a bit. I use that as much as I can. It is a very nice electric chair, it’s very nice and professional looking, which I wanted, and they have given me a bigger cubicle to accommodate the chair. The accommodation process can invite problem-solving assistance from others. BL, reporting on a satisfying experience with the building manager at her work, said: It’s very cool. When the occupational therapist brought the chair to me and I was trying it out, just practicing, the manager of the building saw me. I was saying, maybe I could attach it to the bicycle rack. But he thought it is such a nice chair and it would have gotten so dirty. So they built a little cupboard for me in the garage, which is really nice, and put doors on it and a lock on it. On the other hand, GH wanted to be sure that accommodations did not alter the expectation that she fully perform her job: “I don’t want any special exceptions made for me, I would never want my employer to keep me employed if I wasn’t pulling weight. That’s the kind of thing I’d get worried about, it’s like— don’t keep me on just because I’ve been here fifteen years and you feel bad that I have MS.” Accommodations in life outside the workplace. Conservation of energy was an important issue. Participants described the changes in their activities and roles in their lives at home that were necessary to maintain employment. GG found that she needed to make a number of compromises at home to succeed at work: “I have now said, look, I can’t do everything, I can’t do the laundry, the dishes and clean the house when I get home from work. After I’ve been gone for 111⁄2 hours, I am thoroughly exhausted. I need to get my rest or else I am a mess, just an utter mess the next day.” This involved not only household chores, but also her social life. She reported: Before, I would go out—I would get drunk, I would go out with my friends, go into work, you know, the house would be a pit, would go play a softball game, the laundry room would have inches of dirt on the floor, and it didn’t bother me. Now, I go to bed at ten, hopefully, I try to have everything more organized, because the more organized the less stress or the less chaos is in my life. For those with families, such as RC, changes in roles were necessary. She stated: Around the house, my husband helps out a lot. We divvied up what I can do and what I can’t do. He’ll do the vacuuming and the sweeping, he hands me items to dust, and then he does the main dusting. We kind of work together on that. Now cooking, I might start the meal, I’ll do the chopping, I’ll stand and do stuff, and then if it’s stuff that needs to be flipped or turned, then I’ll sit down and he’ll finish it off and serve it up. RC also needed to learn to communicate more clearly about her needs. “Before I had MS, I would never want to ask someone for help. But you learn, if I am going to continue on this, I have to ask for help.” In summary, our participants faced a number of social and physical barriers in the workplace. Disclosure and dialogue with supervisors about their MS was complicated by frequent changes in personnel and concern about the potential impact that the reactions of others might have on current and future

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employment. For some, managing fatigue and cognitive changes in the workplace was accomplished by using simple and practical accommodations that conserved energy and maximized productivity when the person was feeling his/her best. For others, changing roles outside the workplace by asking for help from others allowed them to maintain their work effort while also managing their fatigue. DISCUSSION We began our inquiry to gain a better understanding of the issues related to low levels of employment of people with MS. We hoped to learn from study participants the value of employment in their lives, the barriers they encountered in the workplace and community, and the strategies and resources they used to address these barriers. Their insights confirmed the complexity of employment issues in MS and provided some possible explanations of the high unemployment rates of persons with MS. Although participants valued work highly, they were also aware of the cost of maintaining employment. Viewing employment as a cost-benefit economy brings an appreciation of the delicate balance that must be maintained to ensure success in the workplace. The balance can be upset by several factors, including change in the symptoms of the disease, daily variability in levels of energy and cognition, and stressors and barriers in the workplace. Maintaining the balance may require a series of effective accommodations in the workplace initiated by the individual alone or in collaboration with the employer. Failure to maintain the balance may explain partly the high unemployment rates of persons with MS. Participants also provided clear insights into the interaction between fatigue and cognitive change and confirmed observations in the research literature.15 A cycle was described in which fatigue resulted in difficulty in thinking, problems in thinking led to increased mental effort and vigilance, which in turn led to more fatigue. This cycle created a formidable barrier to employment because fatigue and cognitive change are variable, somewhat unpredictable, and invisible to others in the workplace. One could speculate that this invisible but vicious cycle makes accommodations difficult and thus may contribute to lack of success in maintaining employment. Participants frequently associated stress with situations in the workplace. Although stress was described as an internal feeling associated with being overwhelmed and apprehensive, this feeling was influenced by factors such as those encountered in the work environment. Some participants viewed stress as clearly undesirable because they associated it with a worsening of symptoms. Participants attempted to make accommodations to challenging situations through personal actions and informal agreements with employers. The themes of stress and accommodation are consistent with a literature that is rich with descriptions of stress and disability16,17 and stress and coping in MS.18-20 Under the general stress and coping model, stress does not arise from a particular event or situation, but rather reflects a person’s appraisal of that situation as exceeding his/her resources, and that stress is only negative when that person’s appraisal presumes threat to the individual. Schontz stated, “Actions in response to stress are determined by appraisals, not by the stress agent or by mental activity alone.”16 Some participants in our study reported that they had previously thrived on stress related to various activities at work; they found that it now interfered with their work performance. Others reported that as they anticipated interpersonal interactions, tasks requiring multitasking, and other activities at work, they were fearful of failure, the stress was aversive, and they appraised this experience as threatening. Clearly, cognitive changes and fatigue influence appraisal. Arch Phys Med Rehabil Vol 85, February 2004

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The model of stress and coping also suggests that adaptive responses or accommodations are not directly related to the level of arousal produced by the stress agent.16 Rather, an inverted U function is proposed.16 Low levels of stress are associated with few adaptive responses, whereas extremely high levels of stress are so disorganizing that adaptive responses are ineffective. Presumably, as fatigue, cognitive changes, and concern about the reactions of others escalate, tolerance for stimulus conditions changes. Depletion of cognitive and energy resources may lead to perceived stress that in turn cannot be handled effectively because of diminished resources. Adaptive responses by the individual or accommodations in the psychosocial and physical environment must be flexible to disrupt and or contain escalating appraisal of stress. Results of this study suggest that accommodations that limit the costs and maximize the benefits of employment are needed. Maintenance of the balance may require the strategic implementation of accommodations. This study has significant implications for persons with MS, their family members, employers, and rehabilitation professionals. First and foremost, although physicians and employers presumed that employment is stressful and therefore would adversely affect the progression of MS for participants, our subjects noted that while employment is indeed stressful, the consequences of unemployment are also stressful. These consequences include poverty, lack of health care benefits, loss of professional identity, social isolation, increased focus on pain and disability, and a perceived risk of exacerbation. Furthermore, participants reported that they used a wide range of compensatory strategies to mediate or limit the negative impact of stressful factors at work, and to maximize their performance in the face of fatigue and cognitive changes. It is imperative that rehabilitation professionals consider the complexity of decisions by people with MS to continue employment. We recognize that some will need to stop working because they can no longer do their job or because they prefer to expend their limited energy in other areas. Referrals to a rehabilitation counselor familiar with disability and employment issues may help persons with MS in their consideration of the costs and benefits of employment. A second issue for rehabilitation professionals is related to the timing of departure from employment. Participants in this study described exacerbations as frightening. In many cases, most or all function is recovered after an exacerbation, but the exacerbation itself may be appraised as quite threatening and stressful. During this time, problem solving, particularly problems about employment, is likely to be least effective. Unfortunately, under these circumstances, persons may also be more compliant with, or vulnerable to, advice from experts about actions they should take. We recommend that given the importance of employment to participants in this study and to society, the best practice would be for health care providers and others to encourage persons with MS who are experiencing an exacerbation to wait before making important decisions about continuing employment. In previous research,21,22 early interventions with accommodation were not effective because many people with MS declined to participate in employment projects, and many of those who did were reluctant to disclose their needs for accommodations in the workplace. No consistently successful strategy to assist people with MS to apply personal and systems accommodations has been demonstrated. The participants in this study reported significant disability but were often able to compensate sufficiently to maintain employment, which they valued. One characteristic of the accommodations they describe is that they are structural—that is, the accommodations Arch Phys Med Rehabil Vol 85, February 2004

anticipated functional changes in mobility, fatigue, and cognition; contained those changes; and thus moderated stress and the impact of functional limitations on performance. For example, by beginning work several hours before her coworkers, one participant was able to capitalize on her “best times,” when she could concentrate on and learn complex material and complete significant volumes of work. When her coworkers arrived, as she began to fatigue, she would focus on tasks requiring less attention and effort. By the afternoon, when her cognitive abilities would decline, she performed routine jobs and went home early. This “structural” accommodation clearly depends on the employer’s flexibility. Our participants reported that they feared having to change jobs. They had learned compensation techniques in the job to which they are accustomed but were afraid they could not learn a new job. In fact, several participants who had performed competently in higher-level jobs found that they were unable to succeed at new jobs or could only perform adequately at lower-level jobs. Again, the importance of maintaining current employment is clear, if that is the desired outcome with respect to the economy of effort and money. Based on concerns expressed by the participants that they could not successfully transition into new work activities or a new job, it appears that it may be difficult for people with MS who have left employment to reenter the job market. This is certainly consistent with the high unemployment rates that have been reported among a relatively well-educated, younger population, most of whom have histories of employment. Adaptations may need to be timed appropriately before, rather than during, periods of crisis. Success in the workplace may involve the development of approaches to manage stress. Too often, interventions for stress management come during periods of crisis and take the form of advice such as, “If you can’t avoid stress at work, stay at home.” However, the caution to “take it easy” and not “overdo” may be counterproductive, leading to limitations in activity that are out of proportion to the level of impairment.23,24 Further, premature retirement may impose a new set of financial and social stresses on individuals with MS. In fact, limiting one’s activity might actually leave people more vulnerable to stress.25 A critical next step in understanding issues of employment and MS would be the identification of critical periods when intervention in the workplace could stabilize the delicate cost-benefit economy of employment. Limitations of Study Because qualitative research represents the inductive, hypothesis-seeking step of inquiry, it is never appropriate to generalize the results beyond the participants. Neither is it appropriate to presume that the entire breadth of any particular participant was reported during their interviews. No sampling method was used here; rather, subjects who were either employed or recently employed and were willing to talk with interviewers were recruited. This was a fairly well-educated group of participants who worked at jobs where they had some control over the circumstances of their employment such that they could compensate for their functional limitations. Had we interviewed persons who worked at other kinds of jobs, such as day care or patient care coordinator, who presumably have less opportunity to shift tasks and schedules, we might well have learned of less successful applications of compensatory strategies. But the intent of qualitative research is to inform the next step, and we believe the participants provided valuable insight into their experiences that can influence the development of, for example, surveys with which to gain a broader understanding of issues related to employment for people with MS.

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CONCLUSIONS Participants in this study reported a strong belief that participating in employment was valuable with respect to selfimage, meaningful activity, and economic security. Fatigue and cognitive changes had a significant impact on their perceived effectiveness at work and their abilities to use compensatory strategies. Fatigue and cognitive changes were often linked and, when combined with social and environmental variables, proved to be stressful. Although some participants reported they had previously thrived on stress, at the time of interviews participants perceived stress to be threatening. Furthermore, although participants had encountered health care providers who advised them that employment was stressful and should be discontinued, they argued that unemployment is also stressful. They reported a number of accommodations that helped them to manage stress on the job. We conclude that working, when it is feasible to do so, may be highly valued by many people with MS. In addition, the line between employment and unemployment may be fragile and early intervention is appropriate to help preserve one’s employment status. Finally, we recommend additional research for a better understanding of the issues related to participation in employment of people with MS. References 1. Boyden KM. The pathophysiology of demyelination and the ionic basis of nerve conduction in multiple sclerosis: an overview. J Neurosci Nurs 2000;32:49-53, 60. 2. Herndon RM. Pathology and pathophysiology. In: Burkes JS, Johnson KP, editors. Multiple sclerosis: diagnosis, medical management, and rehabilitation. New York: Demos; 2000. p 35-45. 3. Molyneux P, Kappos L, Polman C, et al. The effect of interferon beta-1b treatment on MRI measures of cerebral atrophy in secondary progressive multiple sclerosis. European Study Group on Interferon beta-1b in secondary progressive multiple sclerosis. Brain 2000;123(Pt11):2256-63. 4. LaRocca N, Hall H. Multiple sclerosis program: a model for neuropsychiatric disorders. New Dir Ment Health Serv 1990;45: 49-64. 5. LaRocca N, Kalb R, Scheinberg L, Kendall P. Factors associated with unemployment of patients with multiple sclerosis. J Chronic Dis 1985;38:203-10. 6. Comi G, Colombo B, Martinelli V. Prognosis-modifying therapy in multiple sclerosis. Neurol Sci 2000;21(4 Suppl 2):S893-9. 7. Weinstock-Guttman B, Jacobs LD. What is new in the treatment of multiple sclerosis. Drugs 2000;59:401-10.

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8. Cook AM, Hussey SM. Assistive technologies: principles and practice. St. Louis: Mosby; 1995. 9. Americans with Disabilities Act. 42 USC §12101–12213 (1990). 10. Kornblith AB, LeRocca NG, Baum HM. Employment in individuals with multiple sclerosis. Int J Rehabil Res 1986;9:155-65. 11. Rao SM, Leo GJ, Ellington L, Nauertz T, Bernardin L, Unverzagt F. Cognitive dysfunction in multiple sclerosis: II. Impact on employment and social functioning. Neurology 1991;41:692-6. 12. Beatty WW, Blanco CR, Wilbanks SL, Paul RH. Demographic, clinical and cognitive characteristics of multiple sclerosis patients who continue to work. J Neurol Rehabil 1995;9:167-73. 13. Johnson K, Amtmann D, Yorkston K, Klasner E, Kuehn D. Medical, psychological, social, and programmatic barriers to employment for people with multiple sclerosis: a review of the literature. J Rehabil. In press. 14. Benner P. Interpretive phenomenology. Thousands Oak: Sage; 1994. 15. Krupp LB, Elkins LE. Fatigue and declines in cognitive functioning in multiple sclerosis. Neurology 2000;55:934-9. 16. Schontz F. The psychological aspects of physical illness and disability. New York: MacMillan; 1975. 17. Lazarus R, Folkman S. Stress, appraisal, and coping. New York: Springer; 1984. 18. Kroencke DC, Denney DR. Stress and coping in multiple sclerosis: exacerbation, remission and chronic subgroups. Mult Scler 1999;5:89-93. 19. Gulick EE. Emotional distress and activities of daily living functioning in persons with multiple sclerosis. Nurs Res 2001;50:14754. 20. Pakenham K. Adjustment to multiple sclerosis: application of stress and coping model. Health Psychol 1999;18:383-92. 21. Rumrill PD, Steffen J, Kaleta K. Job placement interventions for people with multiple sclerosis. Work 1996;6:167-75. 22. Rumrill PD. Project Alliance Final performance report. New York: National Multiple Sclerosis Society; 1996. 23. Stuifbergen AK, Roberts GJ. Health promotion practices of women with multiple sclerosis. Arch Phys Med Rehabil 1997; 78(12 Suppl 5):S3-9. 24. Joy JE, Johnston RB. Multiple sclerosis: current status and strategies for the future. Washington (DC): Natl Acad Pr; 2001. 25. Schwartz CE, Foley FW, Rao SM, Bernardin LJ, Lee H, Genderson MW. Stress and course of disease in multiple sclerosis. Behav Med 1999;25:110-6. Supplier a. Scolari, Sage Publications Software Inc, 2455 Teller Rd, Thousand Oaks, CA 91320.

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