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Arthritis & Rheumatism (Arthritis Care & Research) Vol. 47, No. 3, June 15, 2002, pp 266 –274 DOI 10.1002/art.10454 © 2002, American College of Rheumatology

ORIGINAL ARTICLE

Factors of Importance for Work Disability in Women With Fibromyalgia: An Interview Study GUNILLA M. LIEDBERG

AND

CHRIS M. HENRIKSSON

Objective. Fibromyalgia symptoms such as continuous pain, tiredness, hyperalgesia, and allodynia limit gainful employment. The present study examines which factors influence the decision to remain in a work role for women with fibromyalgia. This information is important for the individual and for public finances. Methods. Qualitative interviews were performed with 39 women, 19 of whom were gainfully employed and 20 who had stopped working. The transcribed interviews were analyzed and divided into categories and subcategories. Results. Four categories appear, at societal and individual levels, that were regarded as important by the women for remaining in a work role. Conclusions. The ability to remain at work depends not only on limitations in work capacity, but also on the capacity of society to adjust work environments and work tasks. More individual solutions are needed to allow women with fibromyalgia to maintain work roles. KEY WORDS. Work role; Employment; Work disability; Qualitative method.

INTRODUCTION Prolonged and widespread muscle pain is reported at a frequency of 10% in the population and is one factor of work disability in the working population (1). Continuous, widespread pain with generalized hyperalgesia and allodynia are symptoms of fibromyalgia (FM) (2). Epidemiologic studies show that the prevalence of FM is approximately 2% in the population (1,3). The diagnosis is 6 times more common in females than in males (1) and is also reported in children and adolescents (4 – 6). Some studies indicate that a certain improvement can occur in early cases (7), but usually FM symptoms that have lasted several years become permanent (8 –11). The prevalence thus increases in higher age groups and is highest in women over 60 years (1). Articles published showed that work disability varies between 25% and 50% among patients

Supported by grants from the Swedish Foundation for Health Care Sciences and Allergy Research, the Swedish ¨ stergo¨tland Rheumatism Association, and the County of O Research Fund. Gunilla M. Liedberg, MSc OT, Chris M. Henriksson, MSc OT, PhD: Linko¨ping University and University Hospital, Linko¨ping, Sweden. Address correspondence to Gunilla M. Liedberg, MSc OT, INR, Faculty of Health Sciences, 581 83 Linko¨ping, Sweden. E-mail: [email protected]. Submitted for publication April 5, 2001; accepted in revised form November 1, 2001.

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with prolonged or chronic pain conditions due to FM (9 –15). Prolonged pain conditions in muscles and joints constitute the principal causes of temporary disability pension or sickness pension in Sweden (16). Compared with other rheumatic diseases, FM is associated with the highest costs for society when the direct cost for health care, sickness benefits, and sickness pensions are included (17). Symptoms such as pain, tiredness, disrupted sleep, and muscle weakness have been shown to severely impact the everyday activities of the patient (15,18 –20) and have severe consequences for managing a work role (12,21–23). In a study by Teasell and Merskey (24), work disability did not correlate well with the severity of symptoms but did correlate with the physical demands of the workplace. However, they observed that lower socioeconomic status and disability are more frequently found in individuals with lower levels of education and lower incomes, and that chronic health conditions, lower functional status, greater limitation of daily activities, and less good health are reported more often. Disability, regardless of diagnosis, was independently associated with not being married, fewer years of schooling, lower income, not being employed, and increasing age. Another study (25) has shown that lower education level and heavy work influence the level of flexibility in work. For instance, control over the pace of work is reduced, which in turn predicts that the employee is less likely to return to work. In addition, White et al (23) highlight that heavy work earlier in life and older age have a negative influence for return to work.

Work Disability in Women With Fibromyalgia

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Table 1. Demographic characteristics of participants*

Age, years, mean (range) Pain duration years, mean (range) Employment years, mean (range) Classification of occupation Academic education Administration, service, care, and business Work with short or no formal education Hours of work 40–20 19–10

Working n ⴝ 19

Nonworking n ⴝ 20

49.5 (35–63) 12 (3–40) 25 (15–40)

48.6 (26–64) 17 (3–40) 22 (3–40)

7 8 4

8 9 3

10 9

— —

* Values are number of subjects unless indicated otherwise.

A previously published study using a questionnaire mailed to 176 women with FM, drawn from pain and rheumatology clinics at the tertiary health care level, showed that 50% were employed: 35% part time and 15% full time (15). The most common symptoms were pain, interrupted sleep, tiredness, muscle stiffness, and increased pain after muscle exertion. Eighty percent of the working women planned to continue in their work role, whereas 34% of the nonworking women felt unable to work even if more suitable work could be arranged. The majority of women with FM have limitations in their ability to work, which makes work disability a serious concern (15,21,22). Previous results (15) indicate that individual adjustments in the work situation need to be made, and that women who find a level matching their ability can continue to work and find satisfaction in their work role. Further knowledge is needed of how the women perceive factors as facilitating or hindering their opportunities to remain at work. The aim of the present study was to examine which factors women with fibromyalgia perceive as influencing their capacity to remain in a work role.

working outside the home at the time of study, type of occupation, age, and number of working hours. The working group included women working full time (40 hours) or part time (⬍40 hours). In Sweden, employed persons have the right to reduce their working hours if a physician certifies decreased work ability due to disease or illness. This allows them to work 75%, 50%, or even 25%. At the same time, they can be on partial sick leave and receive sickness benefits up to 80% of their normal wages, or a sickness pension for 70 – 80% of their previous wages. The nonworking group included women who had left the labor market due to FM and those who were on 100% long-term sickness benefits or sickness pension. The subjects were contacted by telephone, introduced to the overall purpose of the study, and invited to participate. Three declined to participate. Five women in the working group had stopped working since the last contact and thus did not fulfill participation criteria. Later, the physical examination showed that of 40 women, 39 fulfilled the criteria for FM. Data on the participants are reported in Table 1.

SUBJECTS AND METHODS

Interviews. Individual interviews (26,27) were conducted at the Pain and Rehabilitation Center by GML. An interview guide with themes had been outlined to ensure that certain areas were discussed during the interview. The themes were present or earlier employment; whether any adaptations had been made in their workplace; whether they had additional family or other responsibilities; the value attached to work; their personal strengths and weaknesses as workers; and, finally, their opinion about work in the future. The themes provided a deeper understanding of the work situation compared with the questionnaire study (15) and gave the opportunity to receive unanticipated answers. The formulation of the questions and when they were posed in the interview varied, depending on how the conversation developed. The opening question “Tell me about your present/ earlier work situation?” gave rich information and often covered or initiated many of the themes. The interview guide was used as a checklist at the end of the session to guarantee that all themes had been discussed. The inter-

A qualitative method was used in the form of interviews with an interview guide. In connection with the interview, location of pain during the past week was marked by the women on a pain mannequin. A physician at the Pain and Rehabilitation Center at the University Hospital in Linko¨ ping examined tender points to verify diagnoses according to American College of Rheumatology 1990 criteria (2). Subjects. In an earlier study (15), 176 women with FM had answered a mailed questionnaire concerning their work situations. They were asked to fill in their name and phone number if they agreed to be contacted again. Seven subjects did not answer this question, 9 did not wish to be contacted, whereas 160 subjects agreed to further contact. From the 160 women, 48 were selected, constituting a purposive sample (26). The women were divided into 2 groups according to their responses to the questionnaire. Specifically, they were asked if they were working or not

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Liedberg and Henriksson

Table 2. Overview of categories and subcategories appearing in the interviews Societal Level Values and norms Meaning of work Organized time structure Fulfillment in a work role Structural factors in society Work restructuring Finances Commuting Individual level Working conditions Physical Psychosocial Other commitments Unpaid work Social relations

views were audiotaped and varied in length from 45 to 60 minutes. The Research Ethics Committee at the Faculty of Health Sciences in Linko¨ ping approved the study. Data analysis. Three interviews were transcribed verbatim by GML and the rest by a skilled secretary. Each transcription was read through and checked against the tape by GML. Both authors read and analyzed the material to increase the trustworthiness of the analysis. The analysis contained 3 steps. First, each interview was read several times to form a general impression. Then each interview was read and identified by coding notes to structure the text into units. A coding note may consist of a sentence, several sentences, or a paragraph with similar meaning. The notes were finally classified into subcategories and compared to investigate relations and differences, building up the main categories. For this procedure, a computer program (NUD*IST) (28) designed for qualitative methodology was used. When the material had been coded and categorized, the complete interviews were reread to verify the findings. Quotations are used in the text to allow the reader to evaluate the result. In the Results section, the sign [ ] is used to make implied words explicit in a quote. A skilled Swedish-English translator translated the quotations.

RESULTS The results indicate that women with FM find the possibility of remaining in a work situation depends on a number of factors. The life situations of these women include several areas of responsibility such as family commitments, social engagements, and work. It is clear that these areas influence each other and must be seen as a whole, where work is only one part of the women’s total life situation. Four principal categories were uncovered in the interviews (Table 2). Values and norms. The meaning of work. Having a mission in life and being confirmed by others are highly val-

ued by the respondents. According to the subjects, a work role provides opportunities to experience being part of society, being a useful member, and being appreciated for what you do. A nonworking young woman aged 29 years, describes her feelings in the following way: We are taught that without work we are not worth anything . . . It is as if I exist when I get out [to work] . . . you are confirmed in some way . . . otherwise you are nobody, just a burden on others.

Many of the women who have left work still experience sadness or grief over their lost professional identity and feel as if they have lost some of their value as humans. A woman aged 37 years, who had struggled for 8 years to return to work but finally accepted full disability pension, describes her feelings: There is nothing as terrible as not having a job. You have no social life, you get very isolated and . . . life does not feel meaningful, so to speak. Something is missing . . . it’s not natural not to work . . . it’s unnatural. That’s the meaning of life . . . just to feel that you are useful . . . that you are needed in some way.

A work role is also important because it provides social contacts. A nonworking young woman aged 26 says: To me, work means having social contacts and getting back into society again. Not living on the outside and looking in. . . . So for me it is almost only positive . . . to get out into the labor market and meet people, even if you are in pain, and even if it occasionally is an infernal ache. That does not matter . . . because it is worth it. But you have to be somewhat realistic, you cannot take just any job. . . . I have to see what I can manage . . . but I do want to get out and work.

Organized time structure. Maintaining routines and habits that structure everyday life was regarded as important by the women. Work is an important part of this organized structure. Many women mentioned that without a work role it is difficult to maintain an ordinary life pattern. One woman employed as trained home help said: “I think that it is best to keep going as long as possible. And not to sit down . . . if you quit working, you tend to sit and lie down, and that is dangerous.” According to the women, they very seldom use sick leave due to pain. Sick leave is felt to disrupt the time structure and changes their ordinary habits. A 40-year-old teacher explains: No, I haven’t been sick-listed at all during recent years. Because . . . then I do not know how long I would be sicklisted . . . it is so hard to say. Mentally it feels better to be active, even if it is very strenuous, it is . . . important to get up in the morning and prepare yourself and leave the house.

A few women have managed to maintain some activities and a structured day even if they no longer have a work role. One woman mentions that she cooks for others and assists older, lonely people. Another, in her 40s, says that she has been an elected representative in the housing area

Work Disability in Women With Fibromyalgia where she lives: “I don’t sit down . . . I keep occupied . . . I really do . . . but there is still a difference if you have a job to go to.” Fulfillment in a work role. The women describe themselves as dutiful, responsible, and loyal in their work. Many of them describe a high work rate, where many things have to be managed, and the difficulty of renouncing duties. They find it hard to leave something half completed, often do more than they can handle, and put pressure on themselves. The women have difficulties in accepting their own limitations and their new life situation. One woman describes herself as stubborn and states that she has not yet accepted her situation: “I use my reserves quite a lot . . . there is so much you want to do, you know. I don’t want to deny myself anything, or . . . I want to do things.” The women describe many of their personal characteristics as good, but they also mention how these characteristics can have negative consequences: It is the other side of the coin . . . that this endurance can turn into obstinacy that works against me . . . because I have a very high level of ambition. . . . I am too careful, . . . too precise, . . . perfectionist. . . . I take on very big tasks . . . have difficulties with limitations . . . so this stubbornness may be good. . . . It can bear me and drive me very far, but sometimes it also works against me.

Structural factors in society. Work restructuring. In recent years, the labor market has been subjected to continuous restructuring and changes. In this study, most women mention restructuring as one of the factors that have complicated their work situation. Half of the women, both working and not working, report that they have been involved in changes of work tasks or of organization at work. A decreased number of workers means that higher demands are placed on those who are left to do the work. A number of the nonemployed women in the study report that, due to rationalizations, their position either disappeared or they were expected to increase their workload to a level that they could no longer manage. Reorganization of work has also meant that previously familiar work tasks have been replaced. The new duties are sometimes more difficult to manage, provoke more pain due to work positions, such as prolonged sitting, or are more physically demanding and thus increase the pain. A woman previously in a job that involved a variety of positions and moving around has been given a new and different clerical job. She is now seriously concerned: “. . . and now we are restructuring and . . . they have put me at a computer. . . . I don’t know if I will be able to manage that.” The women report that changes in the work climate in recent years, with increased expectations of their being able to work overtime and to work at a faster pace, have caused stress in the workplace. An unemployed woman, 37 years old, previously working as an accountant describes her problems: The variations in workload in addition to stress . . . because the stress in that job got me down very much . . . because you get so stressed that you cannot get anything done . . . it just piles up.

269 The constant changes in the labor market are also significant for how the women envisage their future. Most of them who are now working expect they will still be working in the future, but some express doubts about the possibility of remaining employed. They also fear that work tasks will increase and become heavier, making work more stressful. One woman, a trained home helper, states: I say to myself, “I’ll take a few days at a time,” because you never know how it will end. And it’s getting more and more stressful. Now they plan to decrease the number of staff . . . and that won’t work, as I see it.

Several of the nonworking women mention that adjustments of working hours, work tasks, or the environment have not been possible. One woman employed as a nurse’s assistant expresses the attitude at her work: “. . . if I cannot manage these tasks, because they are part of my job, I shouldn’t be there.” Above all, women occupied in social work and service areas emphasize that neither work time nor assignments can be influenced in any way. They say that the workload is high for everybody, and under these circumstances it is difficult to be relieved in the work situation. A nurse’s assistant comments: “You cannot pass work over to a workmate, because they are working at full steam too.” The women declare that many employees, not only themselves, are affected by injuries. Therefore the women find it hard to distribute easier tasks to some employees only. A catering assistant states: There are so many occupational injuries and strain injuries there . . . so that doesn’t work. Because everyone wants an easier job . . . you cannot come every day and say: “my arms are aching or my back is aching today, so I can’t do the cleaning.” That is impossible.

Several women mentioned that they often had a bad conscience when they had to ask their workmates for help. They felt that their workmates could not depend on them; there was always a question as to whether they could manage their work tasks on their own and do their part of the job. A few of the women also mention that the adjustment of work tasks and working hours for one person may have a negative influence on other members of the group whose work conditions become less flexible. One woman says that this leads to tension in the work group and an unpleasant climate. Finances. The women do not generally regard finances as a driving force for continuing in a work role, even though some depend on work to earn a living. Several of the married women have been able to retain their work role by decreasing their working hours to what they can manage. They report that this has been possible because of financial support from their spouses. One married woman working 2 hours per day is very satisfied with the situation and stresses the fact that her husband’s income makes this financially possible. Single women are often more dependent on their wages because it is often their only source of income. A single widow with a low pension who owns a business with a strong customer focus states that her financial situation forces her to work more hours than she

270 really should to feel well: “But it is still the money that dominates all the time . . . you schedule more customers than you really ought to.” Commuting. Modern society is characterized by a separation of work place and residence. A number of women cite commuting between home and work as causing additional strain on their life situation. Public transportation often involves periods of waiting for connections. This adds unproductive but energy-consuming time to working hours and is experienced as a burden. In the present study, travelling time added up to 3 hours per day for some women who used public transportation. Several of the women could not use public transportation and were unable to walk even fairly short distances. They used private cars. However, this entails financial expenditures that add to an already taxed budget. Driving a car was also reported by some of the women to be impossible due to poor muscle strength and pain. This sometimes meant that women were dependent on others for transportation. Working conditions. Physical work. The importance of work posture is emphasized by many of the women and is an important factor in the work situation, especially if they cannot influence it. The women mention static and repetitive movements as impossible and give examples such as cleaning, serving at tables, handwriting, and working with elevated arms. A varied work posture is stressed as a favorable factor. The women are aware of the necessity of changing positions to counteract stiffness and increased pain, but they also stress the difficulty they have in changing behavior, despite being aware that they ought to do so. Heavy tasks, including lifting, are described as problematic in the work situation. A woman currently on sick leave, who does not see any likelihood of returning to the labor market because adjustments are difficult, describes her former work situation as a nurse’s assistant: To help somebody onto the toilet, it’s not easy to do it alone . . . you do it by yourself instead of waiting [for somebody else to help]. . . . and there was cleaning during the night, and there were patients’ clothes that needed to be done, ironing, and kitchen chores.

A young woman in her 30s describes the opposite. Despite the fact that her work is physically demanding she can manage it well because the tasks are varied. This woman has changed her work tasks from more sedentary indoor jobs to physically more active work as a gardener. She highlights the paradox in that she can manage this well despite her problems: This is heavier for the body, but I feel much better. . . . Of course I am in pain today also, but not in the same way and it feels nice, because you get physically tired from this work, and that means that you sleep better at night.

Carrying light loads can also be difficult. A nurse’s assistant describes problems with manual tasks: “. . . it’s like carrying two pints of milk. . . . I mean it’s dead heavy. . . . after five minutes you get a lot of pain. It is not actually heavy . . . but when you have this [problem], it is

Liedberg and Henriksson really heavy.” Some of the women have received technical aids such as adjustable chairs, vertically adjustable tables, and orthoses for the wrist. Other adjustments such as a change of work tasks or retraining in another job are also mentioned. However, some of the nonworking women have had bad experiences of retraining. The retraining situations did not correspond to the interests, knowledge, and capacity of the women and sometimes consisted of tasks that were too heavy. The women often indicate that their tiredness, which they relate to disturbances during sleep, is a greater problem than pain in their work situation. Tiredness affects work because the women are not able to be punctual and keep early, regular working hours. Furthermore, in some occupations, concentration difficulties can be harder to deal with than coping with pain. This is expressed, for instance, by a teacher: “. . . it takes rather a lot of energy too, because I must read it several times, it is a little bit hard to concentrate and remember things. But so far it has worked.” Psychosocial environment. According to the women, social relations at work are important for work satisfaction. When reorganizations are implemented, these relations are often disrupted, which also has significance for social support and for their decision to remain at work. The psychosocial environment influences whether the women volunteer information about their problems in the work situation. The women find it positive to have workmates who understand their problems, but they also stress the difficulties that their workmates have in understanding their illness when it is not visible. One woman, who has now left the labor market, describes her experiences: “My workmates had absolutely no understanding . . . none whatsoever. I looked healthy and there was nothing visible.” Support from superiors, who show confidence in the women’s ability to accomplish their work roles, is also valued. A woman, now retrained and working full time in a new work area, describes the importance of support for her return to work: “. . . it meant a lot to me, for my return, that he believed so much in me, this man . . . and also some of the rest of the staff.” One major factor emphasized by the women as positive and which facilitates their remaining in the work role is to reduce working hours, which means that the women can use their reduced ability and still perform a work role. One woman, now working 25% as a secretary, comments: “I do what I do and nothing more . . . because that is just enough.” Another woman points out the difficulties of reduced work hours. It is good for the body but can mean that they cannot participate in what is happening in the workplace and that social contact with workmates is diminished. The women have used regular procedures, for instance sick leave, but also strategies of their own to cope with their work situation. The purpose has been to decrease working hours. Some women, who work part time, have managed to put in a day of rest during the week to manage their work role. Another solution has been to reduce working hours and have a day off without pay, or to use holiday time with pay. A woman working part time in a regional social insurance office describes her strategy: “I

Work Disability in Women With Fibromyalgia have a day off in the middle of the week. If I feel bad, then I rest. . . . previously I used paid holiday and I have also had preventive sickness benefits . . . two days a week.” Another woman, working 75% in industry, has used opportunities available in her work to maintain her work role. She describes her strategy for managing in the work situation when she is not feeling well: Then I have used flexitime or shorter working hours, because I do not want to be sick-listed again. . . . If I should report myself sick and go home . . . then it would be like going back to zero again [and starting all over] and I don’t want to do that.

Almost half of the nonworking women state that they wish to return to a work situation. Most of the women declare that it would be necessary to decrease working hours to succeed in this and at the same time feel well. But the opportunity to decide how work should be organized is also regarded as important. A woman, an economist, wishes to work in her home, assisted by computers. That would enable her to adjust her working hours. She explains: “I would like to work with something that does not increase my pain. . . . perhaps I can work from home . . . because it will give me the opportunity to work when I feel better during the day and night.” The opportunity to influence the work situation by deciding their own work schedule is also stressed by the working women. One teacher who has managed to stay in work despite severe pain states: “I was lucky and could arrange the schedule from my . . . hidden needs . . . you don’t dare to say it out. . . .” Other commitments. Unpaid work. The women interviewed had responsibilities besides their employment. Home maintenance, raising children, and taking care of elderly relatives are all common commitments during certain phases of a woman’s life and may place varying demands on time and physical effort. Some women report responsibilities in connection with their spouse’s career, such as receiving guests in their homes and giving official dinners. One woman with a full-time leading position in her own field of work and now on early retirement states: “My husband has had a demanding job and I have had to take most of the responsibilities in the family . . . a lot of official entertainment also.” A woman in a full-time management position confirms that an important condition for her ability to remain in a work role is the changed role pattern in the family “. . . and I have a husband who takes the major share of the household responsibilities.” The women have often prioritized different areas of responsibilities where sometimes housework, but most commonly leisure activities, are neglected to be able to retain the work role. Time available for leisure is mainly used for rest to be able to work the next day. A woman in her 50s, working full time in a demanding position, states: “I have previously been an active person with a lot of activities after work but I have had to shelve all that. I have given priority to my work.” Some of the nonworking women consider a return to work impossible. They mention the conflict between different roles and the difficulties of managing both household ac-

271 tivities and work. “Like it is today? I cannot manage any longer . . . I have enough to sort out at home.” Age and health problems are also mentioned as hindrances. Social relations. Many women in this study fail in their efforts to maintain a social network. This is very obvious in some of the interviews with the women who have stopped working and thus left many of their previous opportunities for social contacts. A middle-aged woman on sickness benefit, previously working full time and with no future hope of returning to employment, comments: “I no longer have the energy to socialize with anybody and it is very seldom that we can have any contact with people, because I am just so tired.” At a certain point, the social roles outside work may also be accorded greater importance than employment. A woman with severe disability and a strong work identity has accepted a disability pension. She comments on work and her priorities: “. . . not when I feel like this . . . because then I know that even if I could work . . . then there would be nothing left . . . for my social life.” Many women observe that their problems also affect family relations. The ability to maintain a work role depends on how the family situation can be dealt with. The women stress that it is important that the family understands the situation, is prepared, and has the energy to deal with emotional reactions caused by tiredness, irritation, and limited patience at the end of a day’s work. The women also highlight the difficulty in having enough energy for both work and family. A woman in her 40s works full time in health care and emphasizes that she is very content with her work. However, she describes how the family is used as a receptacle for repressed feelings: “It is there in the family that you can really show it. Then you can admit [that things are not just good], you have to take the bad with the good.” She continues: “The family should not have to suffer, we must be able to fix this some way . . . it should run smoothly. . . . I can’t stop things at home because I work so much.” Another woman, who has now left her work role declaring that she has no capacity for work, expresses how work and illness totally dominated her life and how the family and her own needs were neglected: When I got home after 5 hours of work, I had to lie down and rest until the next period of work . . . in order to have the energy to work. I did not have the energy for anything else and it [work] took all my life. . . . it didn’t work. . . . I had no energy left for children and family. . . . you become very boring for everybody.

DISCUSSION The women in this study communicate the fact that a work role is very important for their identity and self esteem. This is negatively affected when they are unable to fulfill demands expressed by themselves or the labor market. Attitudes and values about work have changed during recent decades in Sweden. Financial values have diminished, and the value of personal development and fulfillment has increased (29). This is also confirmed in the present study. A work role also helps to maintain a daily

272 structure with habits and roles and is important for quality of life. Socially acceptable routines are interpreted in terms of leaving the home during the day, maintaining regularity, and having an organized time schedule. The nonworking women in this study had difficulties in finding activities to compensate for loss of work. Wigers (30) performed a followup study after 4.5 years and found that women had found other activities instead of work. However, by being outside the work market, they lose some of their social contacts, which is mentioned by the women in the present study as very negative. A socially more isolated life may result in feelings of diminished human dignity and a less meaningful life situation, factors that in turn may lead to greater focus on their own health problems. The women describe diminished flexibility, problems with different movements and work positions, and difficulties adjusting to new and changing work tasks. Static and repetitive movements, heavy lifts, and difficult work positions should be avoided. This has been reported in more detail in other studies (12,15,31,32). Tiredness, as well as reduced muscle strength and muscle endurance, may also lead to a reduction of working hours. The result indicates that thorough analyses of work situations have to be performed. Early interventions are necessary (15,25), which is also obvious in the present study, to avoid negative consequences, such as increased pain, lower motivation, and frustration in work setting. Time for transportation between home and work should always be considered when work capacity is evaluated. In addition to physical adjustments, a supportive climate with understanding workmates and supervisors is important for work satisfaction. Adjustments are required not only at the individual level but also at higher levels in the organization. To this end, a process involving the administrative and supervisory staff is needed to change prevailing attitudes, values, and behavioral responses to persons with work disabilities. The labor market in Sweden during the 1990s has been subjected to major reorganizations, including reductions in the number of employees. These changes, experienced by the worker in terms of a more intensive work pace, have influenced women’s opportunities to maintain a work role. A faster pace means less tolerance and fewer opportunities for persons with a low work capacity. This development has influenced women, and presumably to a greater extent women with functional limitations. Lannerheim (33) shows that the most demanding factor for women in the labor market is the constant worry about being able to keep their jobs, which is interpreted as limited control over their own work situation. Decreased control over the work situation in combination with less flexibility in accepting new tasks may increase stress and thus aggravate symptoms. The tougher attitude at work described by the women in this study influences their ability to remain in a work situation. Not being able to live up to standards and expectations affects motivation, self confidence, and the will to remain at work. The ability to control one’s work situation is important for satisfaction, as is a moderate level of demand from the employer. Theorell et al (34) show in a study on workers, that the prospect of influence

Liedberg and Henriksson in a work situation has significance for health status. Persons with high psychological requirements in the work situation generally have a higher pain threshold, and also pressure themselves for longer periods. This means that persons may not listen to their bodies’ signals. When the subjects in the present study describe themselves in terms of stubbornness and not giving up, it can be interpreted as a reluctance to listen to warning signals from their bodies. This may lead to increased pain and subsequent sick leave if adjustments in the work situation are not made. Those who experience a lack of control also have lower pain thresholds and experience more pain than others, according to Theorell et al (34). In the present study, it is mainly women from service occupations who express a lack of control in their work situation, and a feeling of not being capable is obvious. The well-educated women explain that, in their positions, they have control over their hours of work. If they do not feel well, they can go home in the afternoon, rest, and complete the work tasks in the evening or during the weekend. Straaton et al (35), in a study of patients with back pain, showed that persons with higher education were more likely to return to employment, and explained this by a greater capability to influence the work situation. These persons also have greater opportunities to choose work where they can control both the pace of work and work tasks. The women in the present study explained that the ability to influence how work is scheduled and the number of working hours is a major factor for being able to remain at work. For women with meager finances, a reduction of working hours is not always feasible. This sometimes results in a situation where these women overwork, increase their pain, and eventually are totally unable to work. In this study in general, finances are not emphasized as the most important factor for continuing work. Single women, who are totally dependent on their income, mention this as a determining factor for work, thus the prospect of reducing the number of working hours decreases. When a woman works full time and also has responsibility for family and household activities, the time available for personal activities and leisure decreases. Most of the working women in this study used their free time for rest to be able to cope with their work situation, resulting in a socially restricted or even isolated life. Having a social network outside work is important for life satisfaction in order to feel that work is not everything. A balance between work, family, and leisure must be achieved for a successful rehabilitation where a work role is still part of life. A determining factor for being able to remain in a work role may also be that the responsibilities at home do not rest only with the woman. It may be necessary to redistribute tasks in a family, and ideally, the family should be involved in the rehabilitation process. A study of middle-aged and elderly women’s work and health shows that workload in the home and difficulties combining the home situation with a job were of greater significance than expected (33). Even if generalization is not the aim of this qualitative, descriptive study, it is reasonable to assume that the opinions of the women may be shared by other women with FM with similar work and family situations. The work

Work Disability in Women With Fibromyalgia situation has been investigated in earlier studies with mainly a quantitative approach. The present study contributes a different perspective. The women’s own perceptions of difficulties and the importance of both individual and environmental factors in society are highlighted. A qualitative interview makes it possible to obtain the women’s own opinions and comprehensions, with open questions so that the women can communicate the most important factors. The women, from different occupations and age, justified the large sample and made it possible to obtain a distribution in experience and opinions. The information from the interviews may be affected by recall bias, as a few of the women had stopped working a number of years ago. However, because leaving work has been an event of great importance for the women, this factor is probably diminished, and the interview guide served to keep the conversation focused on the work situation. The trustworthiness of the study can be confirmed by the agreement among the women, but also by the fact that the categories were found by both authors. The medical examination of the women was performed by the same physician, which assures the reliability of the diagnosis. In the present study the majority of the women want to participate in the labor market. If the necessary adjustments are made, they may be able to work for many years. Many have a long period of employment, but also long pain duration. The ability to remain at work depends not only on the person’s limitations, but also on the inability of society to adapt work environments and work tasks to the person’s capacity. The labor market of today is not designed to suit these women’s needs for flexible working hours, which contributes to the difficulties of remaining at work. An individual solution may benefit both the individual and society. Reduced working hours can be defended from a perspective of public finances, as remaining at work will be less expensive than receiving full pension (17). The importance of focusing on adjustments of the work situation is highlighted in previous studies (24,30), and the necessity of making these adjustments at an early phase is also stressed by Teasell and Finestone (25). The results in the present study clearly show that when working hours and/or work tasks are adjusted, the capability to remain in a work situation increases. An interesting area for future research is how to address this complex situation in the efforts to find individual solutions for women to remain at work. Another future study might be to follow up whether the perceptions and value of work differ in different age groups.

ACKNOWLEDGMENTS The authors thank associate professor K. G. Henriksson for performing the physical examinations and for valuable opinions, and associate professor Ann Bengtsson for comments on the manuscript.

REFERENCES 1. Wolfe F, Ross K, Anderson J, Russel IJ, Herbert L. The prevalence and the characteristics of fibromyalgia in the general population. Arthritis Rheum 1995;38:19 –28.

273 2. Wolfe F, Smythe HA, Yunus MB, Bennet RM, Bombardier C, Goldenburg DL, et al. The American College of Rheumatology 1990 criteria for the classification of fibromyalgia: report of the Multicenter Criteria Committee. Arthritis Rheum 1990;33: 160 –72. 3. Raspe H, Baumgartner C. The epidemiology of the fibromyalgia syndrome (FMS): different criteria— different results. J Musculoskel Pain 1993;1:149 –52. 4. Buskila D, Press J, Gedalia A, Klein M, Neumann L, Sukenik S. Assessment of nonarticular tenderness and prevalence of fibromyalgia in children. J Rheumatol 1993;20:368 –70. 5. Reid GJ, Lang BA, McGrath PJ. Primary juvenile fibromyalgia: psychological adjustment, family functioning, coping, and functional disability. Arthritis Rheum 1997;40:752– 60. 6. Clark P, Burgos-Vargas R, Medina-Palma C, Lavielle P, Marina FF. Prevalence of fibromyalgia in children: a clinical study of Mexican children. J Rheumatol 1998;25:2009 –14. 7. Granges G, Zilko P, Littlejohn GO. Fibromyalgia syndrome: assessment of the severity of the condition 2 years after diagnosis. J Rheumatol 1994;21:523–9. 8. Norregaard J, Bulow PM, Prescott E, Jacobsen S, DanneskioldSamso¨ B. A four-year follow-up study in fibromyalgia: relationship to chronic fatigue syndrome. Scand J Rheumatol 1993;22:35– 8. 9. Henriksson CM. Long-term effects of fibromyalgia on everyday life: a study of 56 patients. Scand J Rheumatol 1994;3: 36 – 41. 10. Bengtsson A, Ba¨ ckman E, Lindblom B, Skogh T. Long-term follow-up of fibromyalgia patients: clinical symptoms, muscular function, laboratory tests—an eight-year comparison. J Musculoskel Pain 1994;2:67– 80. 11. Kennedy M, Felson DT. A prospective long-term study of fibromyalgia syndrome. Arthritis Rheum 1996;39:682–5. 12. Henriksson C, Burckhardt C. Impact of fibromyalgia on everyday life. A study of women in the USA and Sweden. Disabil Rehabil 1996;18:241– 8. 13. Turk DC, Okifuji A, Sinclair JD, Starz TW. Pain, disability, and functioning in subgroups of patients with fibromyalgia. J Rheumatol 1996;23:1255– 62. 14. White KP, Harth MH. The occurrence and impact of generalized pain. Baillieres Best Pract Res Clin Rheumatol 1999;13: 379 – 89. 15. Henriksson C, Liedberg G. Factors of importance for work disability in women with fibromyalgia. J Rheumatol 2000;27: 1271– 6. 16. Yearbook of Health and Medical Care 2000. Accessed February 10, 2000. URL: www.sos.se. 17. Jonsson J, Husberg M. Samha¨ llsekonomiska kostnader fo¨ r reumatologiska sjukdomar. Linko¨ ping University Center for Medical Technology Assessment (CMT) Rapport; 1999. p. 5. (In Swedish) 18. Henriksson C, Gundmark I, Bengtsson A, Ek A-C. Living with fibromyalgia— consequences for everyday life. Clin J Pain 1992;8:138 – 44. 19. Henriksson C. Living with continuous muscular pain—patient perspectives. I. Encounters and consequences. Scand J Caring Sci 1995;9:67–76. 20. Henriksson C. Living with continuous muscular pain—patient perspectives. II. Strategies for daily life. Scand J Caring Sci 1995;9:77– 86. 21. White KP, Harth M, Teasell RW. Work disability evaluation and the fibromyalgia syndrome. Semin Arthritis Rheum 1995; 24:371– 81. 22. Wolfe F, Potter J. Fibromyalgia and work disability: is fibromyalgia a disabling disorder? Rheum Dis Clin North Am 1996;22:369 –91. 23. White KP, Speechly M, Harth M, Ostbye T. Comparing selfreported function and work disability in 100 community cases of fibromyalgia syndrome versus controls in London, Ontario. Arthritis Rheum 1999;42:76 – 83. 24. Teasell RW, Merskey H. Chronic pain disability in the work place. Pain Forum 1997;6:228 –38.

274 25. Teasell RW, Finestone HM. Socioeconomic factors and work disability: clues to managing chronic pain disorders. Pain Res Manage 1999;4:89 –92. 26. Patton MQ. Qualitative evaluation and research methods. 2nd ed. Newbury Park (CA): Sage Publications; 1990. 27. Kvale S. Interviews—an introduction to qualitative research interviewing. Thousand Oaks (CA): Sage Publications; 1996. 28. Qualitative Solutions & Research Pty Ltd. QSR NUDⴱIST. Melbourne, Victoria (Australia): Qualitative Solutions & Research; 1997. 29. Johansson G, Isaksson K, Sjo¨ berg A. Drivkrafter fo¨ r arbete: Attityder och va¨ rderingar i arbetskraften. [Swedish] Rapport till Arbetspolitiska kommitte´ n. Februari; 1996. 30. Wigers S. Fibromyalgia outcome: The predictive values of symptom duration, physical activity, disability pension, and critical life events—a 4.5 year prospective study. J Psychosom Res 1996;41:235– 43. 31. Waylonis GW, Ronan PG, Gordon C. A profile of fibromyalgia

Liedberg and Henriksson

32.

33.

34.

35.

in the occupational environment. Am J Phys Med Rehabil 1994;73:112–5. Henriksson KG, Ba¨ ckman E, Henriksson C, de Laval JH. Chronic regional muscular pain in women with precis manipulation work: a study of pain characteristics, muscle function, and impact on daily activities. Scand J Rheumatol 1996;25: 213–23. Lannerheim L. Middle aged and elderly women’s health and work environment—a model and intervention. In: Kumashiro M, editor. Paths to productive aging: proceedings. London: Taylor & Francis; 1995. p. 45–51. Theorell T, Nordemar R, Miche´ lsen H, Stockholm Music I Study Group. Pain thresholds during standardized psychological stress in relation to perceived psychosocial work situation. J Psychosom Res 1993;37:299 –305. Straaton KV, Maisiak R, Wrigley JM, Fine PR. Musculoskeletal disability, employment and rehabilitation. J Rheumatol 1995;22:505–13.