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Keywords:

  • Inflammatory arthritis;
  • Rheumatoid arthritis;
  • Employment;
  • Focus groups

Abstract

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PARTICIPANTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

Objective

A qualitative study was conducted to better understand patients' perspective on their experience at work in relation to their inflammatory arthritis (IA). Objectives were to identify the problems and barriers to employment that persons with IA face at work because of arthritis, understand why these issues are problematic, and identify strategies helpful for maintaining employment.

Methods

Five focus groups were conducted with 36 employed adults with IA (75% rheumatoid arthritis) recruited from rheumatology practices and outpatient arthritis treatment programs. Script design used brainstorming techniques to identify problems and helpful strategies, and root cause analysis to capture in-depth information about underlying causes of problems. Descriptive qualitative analysis of transcripts was performed by 2 researchers independently to identify problems and organize them into topics and broad categories.

Results

Problems clustered around 4 categories: arthritis symptoms, working conditions, interpersonal difficulties at work, and emotional challenges. New insights gained included identifying fatigue as the aspect of IA most limiting employment; challenges posed by invisibility, fluctuation, and unpredictability of arthritis; complexity of interpersonal relationships at work; reluctance to disclose or draw attention to arthritis; numerous barriers to using available supports and requesting job accommodations, including fear of disclosure and concern it could be perceived by coworkers as favoritism; loss of self-efficacy at work; and many emotional challenges.

Conclusion

This research identified new issues that are meaningful to individuals working with arthritis and that deserve greater attention by professionals counseling people on employment, in intervention efforts to help maintain employment, and in arthritis employment studies.


INTRODUCTION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PARTICIPANTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

Arthritis and musculoskeletal conditions are the most common cause of work disability in Canada (1) and the US (2). In rheumatoid arthritis (RA), the prototype of inflammatory arthritis (IA), studies have demonstrated that work loss is frequent (3), occurs early (4), and has tremendous economic impact (5).

The arthritis work disability literature has focused mainly on measuring the prevalence of work disability and identifying risk factors (6). However, little has been published on the actual experience of people who have persisted in employment despite having IA. Robinson and Walters interviewed 50 employed patients with RA and identified early morning pain and stiffness and difficulty commuting as the 2 most striking barriers to employment (7). Mancuso et al, in a structured interview of 22 patients with RA, identified several challenges perceived as threats to employment and a variety of adaptations made to maintain employment (8). Two articles report on a concept mapping exercise with 1 RA sample (9, 10). These 2 studies explored what individuals thought they needed to prevent work disability and identified support from management and colleagues as the highest priority for RA. A few studies have also specifically evaluated the adaptations and coping efforts made by persons with arthritis to maintain employment (11–16). However, the perceptions of individuals with arthritis, especially their evaluation of the problems they experience while working and the causes of those problems, have not been examined in detail, as was done in the present study.

We conducted a qualitative study to better understand patients' perspective on their experience at work in relation to their IA. The specific objectives of the study were to 1) identify the problems and barriers to employment that persons with IA face at work because of their arthritis, 2) understand why these issues are problematic by exploring the underlying causes of problems identified, and 3) identify strategies that are helpful for maintaining employment. The study was conducted in the context of developing a program to help persons with IA maintain employment. Obtaining a more thorough understanding of patients' perspective on employment issues will guide the development of employment interventions that better meet people's needs.

PARTICIPANTS AND METHODS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PARTICIPANTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

Study sample.

Participants were recruited from the Mary Pack Outpatient Arthritis Treatment Program and rheumatologist private practices in Vancouver by advertisements posted in waiting areas and mailed invitations explaining the study and outlining eligibility criteria. Interested individuals contacted a research assistant who verified eligibility and informed them about the study objectives. Eligibility criteria included being employed, being age 18–65, living around Vancouver, and having IA (RA, psoriatic arthritis, ankylosing spondylitis, spondylarthritides, or systemic lupus erythematosus with significant arthritis). Diagnosis was confirmed by contacting treating rheumatologists.

Study design and methodology.

A qualitative approach was used for data gathering. Focus group methodology was selected to use group interaction to enhance the depth of information obtained. The script design utilized Krueger's guidelines, which recommend establishing group cohesion, structuring discussion around key research questions, and building validation questions into the discussion (17). The key research questions for discussion were as follows: 1) “What makes it difficult for you to continue working while having arthritis?” and 2) “What strategies would make it easier for you to work or allow you to work longer?” For question 1, participants took turns identifying a problem. For each problem identified, the facilitator used root cause analysis (fishbone technique) (18) to explore in depth the underlying causes of the individual's problem by asking probing questions such as, “What was it about ‘x’ that was a problem for you at work?” The discussion was then opened up to the group for other participants who had experienced this problem to contribute to the discussion. Each problem was explored until no new idea was put forth. Problems and underlying causes were recorded on a flip chart. Participants were asked to prioritize identified problems by placing a total of 5 dots per person on the problems that most affected their ability to work.

At the end of each focus group, participants were asked whether the problems and underlying causes recorded on the flip chart accurately reflected their experience and whether anything important was missing. A followup meeting was held where results were presented and participants confirmed whether the analysis accurately reflected the discussion. These 2 steps combined served to verify the data, a process known as member checking (19).

A trained focus group facilitator specializing in health research (MAW) and a rheumatologist with arthritis and employment research expertise (DL) facilitated the focus groups. Focus groups were held until data saturation, when no new major issues emerged upon reviewing problems listed on the flip charts.

Descriptive qualitative analysis was used (20). Each session was audiotaped and transcribed verbatim. Transcripts were analyzed independently by 2 researchers. Researchers met regularly to compare analyses. The content of each transcript was cross-referenced with the flip-chart information recorded during focus groups. The original list of problems was revised using transcript data, adding problems missed and providing context to problems already listed. Problem lists for all focus groups were then combined, clustering all data related to a similar problem (e.g., fatigue). Problems that were very similar were merged, and related problems were grouped into topics where appropriate (e.g., interpersonal relationships with coworkers). Problems were organized into 4 broad categories. Transcript text was coded according to the final problem list developed. Illustrative quotes were selected from these data.

Participants also completed a questionnaire asking about their disease, their job, and basic demographics (Table 1). The study was approved by the University of British Columbia Behavioral Research Ethics Committee.

Table 1. Characteristics of study sample (n = 36)*
VariableValue
  • *

    Values are the number of participants (percentage) unless otherwise indicated. RA = rheumatoid arthritis; AS = ankylosing spondylitis; SLE = systemic lupus erythematosus; PsA = psoriatic arthritis.

Female sex31 (86)
Age, years 
 18–292 (6)
 30–398 (22)
 40–497 (19)
 50–5917 (47)
 ≥602 (6)
Education 
 High school diploma6 (17)
 Technical/trade/vocational college3 (8)
 Community college7 (19)
 Some university5 (14)
 University degree10 (28)
 Graduate or postgraduate training5 (14)
Arthritis diagnosis 
 RA27 (75)
 AS5 (14)
 SLE1 (3)
 PsA3 (8)
Disease duration, mean ± SD years11.4 ± 9.5 
Duration of paid employment, mean ± SD  years23.4 ± 11.7
Type of work 
 Office, clerical, and administrative10 (28)
 Management5 (14)
 Professional and technical12 (33)
 Retail/customer service3 (8)
 Manual labor1 (3)
 Arts2 (6)
 Other3 (8)
Arthritis affects ability to work 
 A great deal8 (22)
 Quite a lot4 (11)
 Noticeably15 (42)
 Hardly at all6 (17)
 Not at all3 (8)

RESULTS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PARTICIPANTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

Sample characteristics.

A total of 42 patients were interested in participating and met the eligibility criteria. Of these, 36 participated in focus groups. The remainder were unable to attend because of scheduling problems or cancelled due to work or family reasons. A total of 86% were women, and most had RA, longstanding arthritis duration, higher than average education, and worked in white-collar jobs. Sample characteristics are further described in Table 1.

Problems making it difficult to continue working.

Seventy-six problems were identified and organized into 4 broader categories: 1) symptoms and characteristics of arthritis, 2) working conditions, 3) interpersonal difficulties at work, and 4) emotional challenges. All problems are listed in Table 2 and elaboration of selected problems is presented below.

Table 2. List of problems making it difficult to continue working
Problems
I. Symptoms and characteristics of arthritis
  Fatigue
  Pain
  Physical limitations
  Invisibility of arthritis
  Variability/fluctuations of symptoms
  Unpredictability of flares
  Unpredictability of future arthritis progression
  Problems related to disease management
    Treatment side effects interfering with work performance
    Concern about taking time off work for medical appointments
    Limited access to multidisciplinary arthritis services outside of working hours
    Lack of time/energy for comprehensive arthritis care
    Lack of information, resources, and services to help cope with arthritis on daily basis
    Lack of help from health care team for dealing with work-related issues
    Not using splints/aids/devices useful to manage arthritis at work to maintain invisibility
  Self-preserving strategies to cope with pain and fatigue limit potential for advancement, job satisfaction, and personal   fulfillment
II. Working conditions
  Lack of flexibility/control
    Lack of flexibility over work hours
    Lack of flexibility in how tasks are organized or order of tasks
    Lack of control over pace of work
    Lack of ability to take breaks or pauses when needed
    Lack of control over how the job is done
    Jobs where work is done as part of a team offer less flexibility
    Jobs with collective agreements can limit flexibility
  Demands of the job
    Physically demanding jobs
    Tasks that require use of joints affected by arthritis (job demand/arthritis limitation interaction)
    Jobs with repetitive tasks
    Prolonged sitting or standing
    Inability to get up and walk around when stiff and/or sore
    Time pressure, short timelines
  Difficulty commuting
    Increased pain and stiffness with prolonged sitting, especially in the morning
    Difficulty concentrating and dealing with traffic due to fatigue and pain raise concern regarding safety of driving own      car
    Difficulty using public transport because of increased commute time, crowded buses, need for prolonged standing
    Reluctance to use disability-designated seats due to guilt, pride, or fear of negative reactions from others due to lack of     visibility of disability
    Long commute increases fatigue at work
    Difficulty commuting limits job options (need to choose jobs close to home or move close to job; avoid jobs that require     travel for work)
  Working conditions vs job fulfillment
  Difficulty requesting and getting job accommodations
  Difficulty obtaining ergonomic modifications
  Difficulty making career changes
  Difficulty planning for future career
III. Interpersonal difficulties at work
  Interpersonal relationships with coworkers
    Dealing with negative reactions from coworkers, including resentment
    Coworkers perceiving accommodations as receiving preferential treatment
    Difficulty being absent/setting limits for arthritis, when working as part of a team
    Difficulty asking for or accepting help from coworkers
  Coworkers and employers not understanding arthritis
    Difficulty communicating with coworkers about arthritis and impact on work
    Misconceptions about arthritis in the workplace
    Lack of understanding affects empathy and support
    Feelings of mistrust and lack of acceptance by coworkers
    Fear of losing credibility
    Fear of being judged as a less valuable employee
  Reluctance to disclose information about arthritis
    Reluctance to disclose arthritis diagnosis
    Reluctance to be open about arthritis progression, flares, impact on work
    Fear of negative consequences such as job loss or discrimination
    Concern about being perceived as less valuable by employer or coworkers
    “Wearing a mask” at work to conceal symptoms of arthritis
  Barriers to using available support measures that could help at work
IV. Emotional challenges
  Fear and anxiety
  Stress
  Uncertainty about the future
  Feelings of guilt
  Sense of inadequacy
  Loss of personal fulfillment
  Sadness and depression over losses and limitations of arthritis
  Loss of self-confidence in abilities
  Feelings of dependency and helplessness
  Unwillingness to take risks
  Family-work issues
    Difficulty and stress balancing family, work demands, and disease
    Frustration from family members not understanding disease, especially fatigue
    Difficulty sharing with family fears about job loss and dependency if arthritis progresses
    Resentment from family members because no energy left over to do things
    Lack of practical and emotional support from family that would make it easier to work
  Financial concerns
    Financial insecurity regarding uncertainty of future ability to work
    Financial stress from fear of losing benefits that pay for arthritis treatment if job loss occurs
    Financial stress from fear of becoming a financial burden to family
    Loss of income due to absenteeism, working part time, taking a job of less stature
    Cost of treatment affects job choices, as benefits become criteria for job selection
    Lack of trust in dealing with disability companies

1) Symptoms or characteristics of arthritis.

Fatigue.

Although pain and physical limitation were mentioned as posing difficulties at work, it was fatigue that participants consistently identified as most limiting their ability to work. Fatigue ranked highest among problems across all focus groups (Table 3). Individuals believed that fatigue was a problem for a number of reasons. Low energy made it difficult to complete all tasks expected of them, especially with tight deadlines, or participants thought they were not always providing their best performance. Some found that fatigue interfered with their mental abilities by decreasing concentration, and others described how it affected their relationships with coworkers and clients, such as increasing irritability. Fatigue also made other arthritis symptoms, such as pain, worse.

Table 3. Five most important problems making it difficult to continue working*
Ranking of problemsGroup 2Group 3Group 4Group 5
  • *

    Numbers in parentheses represent number of dots placed next to each problem listed, as part of the dot-placing exercise to prioritize problems, as described in the Participants and Methods section. Titles differ from problems listed in Table 2 because they represent topics listed on flip charts during focus groups. Prioritization of problems was not done with the first focus group because of lack of time.

1Fatigue (13)Fatigue (17)Fatigue (36)Fatigue (31)
2Pain (11)Uncertainty about future (6)Flexibility over work (9)Dealing with coworker's anger and resentment (11)
3Family: lack of understanding (8)Unpredictability of disease (5)Financial consequences (5)Wearing a mask (8)
4Range of motion (5)[Need for] flexible work arrangements (5)Loss of fulfillment, depression, dependency (5)[Need for] a supportive work environment (4)
5Unpredictability of symptoms (5), life/work balance (5)Lack of information (4)[Need to] educate employers (3), invisible disability (3), keeping up with performance (3)Stress at work (4)

Some participants explained how, due to fatigue, they turned down additional responsibilities, special projects, training opportunities, and promotions. They noted that although this strategy helped preserve energy, it was often at the expense of job satisfaction, career advancement, and personal fulfillment. Many participants described having no energy left at the end of the day for anything outside of work, thus affecting their quality of life beyond work (Table 4, quote 1).

Table 4. Examples of participant quotes reflecting problems
ProblemQuote no.Quote
Fatigue1.“I think the fatigue goes outside the work environment. I use all of the energy I have for my work and there is nothing left for my family or my friends. I have no life.”
 2.“I didn't understand how fatigue was affecting me because the physical part of the disease is easy—you hurt, you know and that is visible. I can't pick something up today. But the fatigue part you don't even realize it. It is sort of a quiet, silent thing that happens to you and you sit back at the end of the day and you think—I could have done that better, why didn't I do that? And you try to understand why and what has affected you … you don't understand it. You don't know how to deal with it. I think that is one of the real weaknesses of the medical treatment.”
 3.“My coworkers, the clients that I work for that know me really well—if they ask me—gee can you move this monitor to the other computer? I just simply say—no I can't, I have arthritis. And that is not a problem … people understand. But when you say—no, I can't make that meeting, I am tired I have to go home….”
Invisibility of arthritis4.“And I don't think they understand the tiredness aspect of it because you look fine. You look well, and that is part of the problem at work and everywhere. People look at me and—I am sure they are thinking: What is she complaining about? She looks fine, she's not sick.”
Fluctuating nature and unpredictability of arthritis5.“I was great for 4 years and then I flared so badly I could barely walk to work or write. Lifting up a pencil was killing me. So you could be going along and everything is on track and then everything just falls apart.”
 6.“For me that is an area I am worried about the disease. I haven't had it very long … I really don't have very severe symptoms. But one of the things I wanted to do was go back to university and do a complete career change, which I probably never will do. I wanted to become a veterinarian and then I started worrying about what my hands would be like in 10 years time.”
Commuting7.“I will go back to the commute. When I am on the sky train and it is packed and I can't get a seat—people will never give me a seat—and I have too much pride to say—do you think I could sit down? Sometimes I am standing all the way to New West and I am ready to pass out from pain … My husband said we are going to get you a cane so people can see that something is wrong….”
Working conditions vs job fulfillment8.“The other financial difficulty is having to take a job of lesser stature that doesn't allow you to fulfill your life goals … it was pretty brainless and I just didn't have it in me to do anything more. Even though I had goals that were much higher, I had to compromise with the kind of work that I was doing.”
Dealing with negative perceptions of coworkers 9.   10.“My boss will come up to me and say—ok you have been working at home too many days people are saying something.” “Sometimes for me because I work for a big company—my immediate work group they are really great but somebody from another department on another floor doesn't necessarily know my situation and it is like—it is tough sometimes when these people say—what is wrong with you?—I have got arthritis. Well how come you can come in at 10:00?”
Coworkers and employers having misconceptions about arthritis11.“And it is known as an illness for old people for some reason. So in my case when I tell someone I have arthritis they will look at me like—yeah right. We don't feel trust. It seems like you are lying all the time and you are coming up with excuses.”
Reluctance to disclose information about arthritis12.“As of late, I have found that, you know, that I am thinking more that I do need to be cautious about telling my employer about how bad I am getting because I have noticed on the job posting now that they have this line that says, must be physically able to do job.”
 13.“It is a double-edged sword though. I was trying to get a job with a very good company and they required you to do a physical before you could be hired and the doctor who did the physical actually phoned them and told them not to hire me … I was only 28 at the time and I thought—is this what I am going to face the rest of my life? So then I was scared to tell anyone. So when I went into the interview, it was a big secret and even when I was on my probation period. I didn't even put medical slips through or anything. Now I am more open about it.”
“Wearing a mask” at work14.“You feel you have to put up a good front. One time my manager said to me something about—you are not feeling very well are you? and I go—No, but how can you tell? Oh … It is really tough sometimes putting up that front.”
 15.“That needing to put up a front all the time for me it is pride and the alternative to admit I can't do it all. It is very hard. Having been in a very big job for 20 years and to suddenly realize I can't do it.”
Guilt and sadness16.“I find that fatigue brings on guilt. I am not a good employee, why would they keep me hired?”
 17.“I don't get irritable because I love what I do. But when I need to rest my main feeling is feeling sad that I am losing that time for me. I don't feel guilty, but I feel really sad.”
Depression18.“It was devastating for me and it threw me into a real depression when I was told—you are either full-time or not at all. That was the most devastating thing they could have possibly said to me and it really knocked me to the sixth. They are just beginning to come around…. When I am sort of saying—can I return part-time and hopefully build up? They are just beginning to consider it.”
Loss of personal fulfillment outside of work19.“So quality of life changes, and I know I am at the point now where essentially there is work, and that's it. There is not a lot left for anything outside of work. So then the question becomes, well, if I go and put all my energy into work, what kind of life have I got? On the other hand if I wasn't working, what kind of life do I have? So it's a toss up of making those choices.”

Some participants described difficulty identifying fatigue as the source of their problems, attributing fatigue to their disease or being able to accept fatigue as a legitimate reason for not doing things. For many participants, fatigue was the symptom least helped by medications, and they did not know what to do to improve or manage it. Fatigue was also perceived by participants as least well understood and accepted by coworkers (Table 4, quotes 2 and 3).

Invisibility of arthritis.

Arthritis, for the most part, is a nonvisible disability. Although this was perceived as an advantage when individuals did not want to reveal their arthritis, it also prevented others from seeing problems, and therefore others did not understand and/or had less empathy. This was particularly true for fatigue, but also for pain (Table 4, quote 4).

Fluctuating nature and unpredictability of arthritis.

Participants expressed concern that fluctuations in their ability to perform work tasks, due to day-to-day variation in symptoms, affected their credibility with coworkers or supervisors. Unpredictable arthritis flares and symptom fluctuations posed difficulties in planning work and often made individuals hesitant to accept future work commitments because of difficulty anticipating symptoms and fear of not meeting commitments. Not knowing how their arthritis will progress over time also made long-term future planning difficult (Table 4, quotes 5 and 6).

Problems related to disease management.

Many participants believed they were not taking care of their arthritis as well and comprehensively as they would like, for reasons outlined in Table 2.

2) Working conditions.

Working conditions that were identified as problems are self-explanatory and are listed in Table 2.

Commuting.

Commuting to and from work was a major problem for many participants. Rich discussion ensued about why commuting was a problem (see Table 2) and how this limited job options (Table 4, quote 7).

Working conditions versus job fulfillment.

Choosing a job with working conditions suited to arthritis was a priority in job choice, sometimes at the expense of career advancement, salary, or personal job satisfaction. Some participants described taking jobs they were overqualified for to have better work conditions (Table 4, quote 8).

3) Interpersonal difficulties at work.

Interpersonal relationships were important sources of problems and stress for some participants, but not others. Interpersonal relationships with coworkers often posed more difficulty than with employers. Persons with jobs involving a team, or where others depended on the output of their work, reported the most interpersonal problems. Decreased work performance during arthritis flares and strategies used to deal with arthritis, such as setting limits or taking time off, affected their coworker's work, which led to resentment in some cases (Table 4, quotes 9–10).

Coworkers and employers not understanding what it is like to live with arthritis was a problem experienced by most participants. Others perceiving participants' fatigue as just being tired, being lazy, or lacking motivation and interest in the job was one of the most important misconceptions reported. Lack of understanding affected empathy, and participants were concerned that it may also affect their credibility (Table 4, quote 11).

Reluctance to disclose information about arthritis was an important issue that emerged in all focus groups. Whereas some participants had been with an employer for many years, felt supported, and were comfortable talking about their arthritis, many participants had not informed their employer they had arthritis, or were reluctant to disclose the extent of their arthritis, its progression, or when they were experiencing flares (Table 4, quote 12). Disclosing was an issue not only with employers, but also with coworkers and clients. Underlying participants' reluctance to disclose information was a fear of adverse consequences, mainly future work loss, and fear of discrimination in job promotion, being less valued as a worker, stigmatization, and having to deal with negative coworker reactions (Table 4, quote 13). Reluctance to disclose information about arthritis was an important barrier to using available supports, both visible aids (such as splints, ergonomic modifications, elevators, or button-activated doors) and support measures such as taking sick time they were entitled to or requesting job accommodations.

A label of “wearing a mask” was given to this effort at hiding arthritis and pretending everything was fine even when experiencing symptoms, thus maintaining the invisibility of arthritis (Table 4, quote 14). Participants believed there were advantages, such as avoiding negative reactions of others, helping career advancement, maintaining a positive and healthy self-image, and having a greater sense of control. However, some stated that it came at the expense of self-care and of obtaining support or help from others, that it limited ability to ask for accommodations, and that maintaining this image was stressful and consumed a lot of energy at work (Table 4, quote 15).

Other barriers to using available supports at work, in addition to fear of disclosure and maintaining invisibility, included fear of inviting resentment from coworkers who could perceive receiving job accommodations as receiving preferential treatment. Many participants expressed their preference for solutions that benefited all workers rather than singled them out, but high cost and widespread implementation make such recommendations problematic. Participants were often unaware of support measures and resources available to them. They were concerned about cost to employers. Underlying this was a fear of job loss if they became costly employees. Emotional barriers included unwillingness to accept help, impact on self-image (sense of dependency, inadequacy), feelings of guilt, and fear of “using up” all support available to them and having nothing left if their arthritis became worse.

4) Emotional challenges.

Several emotional issues emerged in the context of discussing problems at work. Many fears have already been discussed above. Uncertainty about future progression of arthritis was a source of fear and anxiety for many. Some explained how it made planning for the future or engaging in career changes difficult. Guilt was a major emotional challenge for some. Underlying feelings of guilt was a sense of inadequacy from not being able to meet their usual standard of performance, from absenteeism, and from not having enough energy for family after work (Table 4, quote 16). Some described feeling guilty about how pain and fatigue made them more irritable and impatient in their relationships at work and at home. Others expressed sadness for what they were giving up (Table 4, quote 17), including depression from the losses and limitations of their disease (Table 4, quote 18), and loss of personal identity and fulfillment from limiting their social life and personal activities outside of work. They described continuing working at the high cost of giving up everything else (Table 4, quote 19).

Many participants expressed that having arthritis had resulted in loss of self-confidence in their abilities at work and feelings of inadequacy. Although these were crucial issues for those who experienced them, they were not a problem for others. All participants emphasized how being employed was important to their emotional and physical well-being, despite difficulties encountered. Emotional challenges regarding family, work issues, and financial concerns are listed in Table 2.

Helpful strategies to continue working.

A wide range of solutions to employment problems were identified (Table 5). Flexible work arrangements ranked highest overall (first/second in all groups). Jobs with flexibility allowed individuals to consider their arthritis when planning their tasks and workday, allowing them to better manage their symptoms and improving their ability to perform their work. This was described as a win-win situation for all, improving employee well-being and work productivity.

Table 5. Strategies helpful for maintaining employment and barriers to implementation of strategies
Strategies and barriers
I. Helpful strategies
  Flexible work arrangements
  Need for ergonomic equipment to adapt work to arthritis
  Ergonomic assessment by a professional knowledgeable about arthritis
  Counseling assistance to change to jobs or careers more suitable to arthritis
  Assistance with asking for and getting job accommodations
  Education for employer and coworkers about arthritis
  Policy changes to support employers to make workplace modifications
  Advocacy and support to improve work conditions for people with arthritis
  Early diagnosis and proper treatment of arthritis
  Providing information about treatment options and about living with arthritis
  Making health care services more accessible outside working hours
  Wellness programs in the workplace
II. Barriers to implementing strategies
  Barriers to ergonomic modifications
    Lack of knowledge about how to assess ergonomic needs
    Lack of knowledge about which solutions are appropriate for arthritis
    Lack of information about process to obtain ergonomic assessment
    Lack of information about resources to pay for them
    Need to legitimize the need to employers and coworkers
    Obtaining proper documentation from health care professional
    Concern about having professional come to workplace for fear of visibility
    Recommendations from ergonomist not well suited to arthritis, preference for occupational therapist assessment
  Not wanting to be perceived by coworkers as receiving preferential treatment
  Concern about becoming costly to the employer
  Self-conscious about using visible aids for fear of stigmatization at work
  Challenges making career changes to adapt job to arthritis
    Difficulty knowing how to find jobs suited to arthritis
    Lack of awareness about how to find vocational rehabilitation services
    Lack of resources for retraining
    Age as a limitation in making a career change
    Lack of fulfillment from changing to a job that you are overqualified for

Ergonomic modifications also ranked high and were described as helpful in improving ability to perform tasks and reducing symptoms. However, most participants had experienced difficulties obtaining modifications. Individuals thought that an ergonomic assessment by a professional would be helpful in overcoming identified barriers (Table 5). Some expressed preference for assessment by an occupational therapist over an ergonomist, because of better arthritis knowledge. Many expressed concern about an assessment at the workplace, wanting to maintain invisibility. Other barriers to implementing potentially helpful strategies were also identified (Table 5).

DISCUSSION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PARTICIPANTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

We conducted focus groups to better understand the perspective of persons with arthritis regarding problems they encounter at work due to their IA, in order to guide intervention efforts aimed at helping them maintain employment. This research emphasizes new issues important to employed persons with IA not previously identified in studies of risk factors for work loss.

Participants identified fatigue as the aspect of arthritis most limiting them at work and ranked fatigue as the most important problem. This contrasts with the literature on risk factors for work loss, which emphasizes pain and functional limitation. Because of misconceptions about arthritis-related fatigue and because it is not visible, fatigue was poorly understood and accepted by some of the participants themselves, their coworkers, and their employers. Individuals expressed frustration at not knowing what to do to improve or manage their fatigue at work. Improving awareness about the fatigue associated with arthritis is needed, fatigue should be addressed in work counseling or employment interventions, self-management strategies to help individuals deal with fatigue should be recommended, and medications effective at reducing fatigue are required. Other studies have confirmed that fatigue is an important challenge to continued employment (8) or associated with adverse work outcomes (21). Fatigue also predicted role conflict in a study of arthritis-work spillover (22) and had a great impact on unpaid work for mothers with RA (23). Outside the arthritis literature, fatigue at work is increasingly recognized as an important issue. Fatigue is common (22% of employees report fatigue) and associated with psychological distress, absenteeism, and future job loss (24–26). Thus, fatigue at work is not a problem solely for persons with arthritis.

The invisible, fluctuating, and unpredictable nature of arthritis also posed important problems at work. Previous arthritis research also identified unpredictability as an important source of stress in people's lives (27–30), including at the workplace (22, 31). This suggests a need to help people plan ahead despite uncertainty and develop safety nets to mitigate potential future difficulties.

Analogous problems were identified in multiple sclerosis where symptom unpredictability was found to impact career self-efficacy, reducing individuals' confidence that they can exercise control over their job situation and make necessary changes to remain employed (32). Similarly, our participants with IA clearly described feelings akin to loss of self-efficacy at work, including loss of self-confidence in their abilities at work, sense of inadequacy, and fear of not being able to influence work outcomes. These results emphasize the importance of enhancing self-efficacy at work, just as self-efficacy for arthritis self-management has been recognized as beneficial (33–38), using techniques that enhance people's confidence in their ability to make changes at and outside of work that allow them to continue working.

Our findings emphasize the magnitude of the problem of disclosure at work. We previously found that 22% of workers do not mention their arthritis at the workplace (12). Disclosure issues go beyond simply mentioning one's arthritis and relate to how open people are about their arthritis at work. Deciding whether to disclose is often difficult, and requires careful weighing of pros and cons because of potential negative impact on future job security and advancement. However, not disclosing prevents people from accessing measures that could help them remain employed and benefiting from support at work. Assistance from vocational counselors or social workers would be beneficial for those struggling with this decision by helping them evaluate trade-offs and discussing how, when, who, and how much to tell. Concern with disclosure also has implications for interventions. Some individuals may prefer off-site over at-the-workplace interventions that could draw attention to their arthritis.

Interpersonal relationships at work were a major challenge for some participants. Relationships with coworkers often seemed more difficult than with employers, especially for individuals working in teams, or where others depended on the output of their work. Fear of resentment from coworkers and of being perceived as receiving preferential treatment were important barriers to using available support measures or requesting job accommodations. Support from coworkers and employers has been identified as an important determinant of work stress and disability (15, 39–41) and a priority for persons with RA (9, 10). When making recommendations to assist people at work, health professionals must take into consideration individuals' degree of openness about their arthritis, the complexity of interpersonal relationships at work, and emotional issues and other barriers to using available supports. They must also be aware of some individuals' resistance to solutions that will make their arthritis more visible, draw attention to their arthritis, or single them out in the workplace. This would improve compliance with recommendations and avoid unexpected adverse effects.

Although commuting had previously been identified as an employment barrier (4, 7, 8, 41), our root cause analysis provided additional insight on why commuting poses problems. This provides an argument in support of transportation assistance for persons with physical disabilities and for flexible workplace policies allowing work from home or flexible hours that facilitate commuting.

Our study also illustrates the difficulties people experience in obtaining ergonomic modifications and job accommodations and in making career changes. Similarly, it has been shown that individuals with arthritis rarely obtain job accommodations (11) or use vocational services (4, 42–44). Given that ergonomic modifications (4), job accommodations (14, 15), and job retention vocational counseling (45) have been associated with a reduced risk of work disability, there is a need for greater involvement of ergonomists (or occupational therapists) and vocational counselors in the multidisciplinary care for persons with IA.

Addressing employment issues was identified by our participants as an important unmet need in health services available to individuals with arthritis, consistent with other studies (8, 43). People rarely mention employment problems to health professionals, because these problems are not seen as the responsibility of anyone in particular. Employment and participation in valued life activities should be regularly assessed by health professionals, such as performing functional assessments, to identify problems at work, help find solutions, and inform people of available resources.

Our study has some limitations. The findings are limited to the experiences of a small number of participants, as expected of qualitative studies. Our sample included mostly persons with RA with prolonged disease and work experience. Therefore, the findings may not reflect challenges unique to persons with other forms of IA, with new-onset arthritis, or who recently entered the workforce. Individuals with lower education and jobs in retail, manual labor, and trade sectors were also underrepresented. Therefore, our findings may not adequately reflect challenges faced in jobs with higher physical demands and lower flexibility/control. When interpreting the results of this study, it is important to recognize the high variability of experiences across participants. Some issues were very important to some participants, yet not to others. This likely relates to differences in disease, fit between disease restrictions and job demands, and contextual differences at and outside of work. This variability poses challenges for the design of employment studies.

In conclusion, our focus group results provide new insights into the work problems experienced by persons with IA that have important implications for professionals counseling people on employment issues, for the design of employment interventions, and for future research on employment and arthritis. Professionals and programs assisting individuals with IA at work need to address fatigue, recognize challenges posed by the invisible, fluctuating, and unpredictable nature of arthritis, and use strategies that enhance self-efficacy at work. They also need to consider the complexity of interpersonal relationships at work, the reluctance of many people to disclose or draw attention to their arthritis, and other barriers to using available support measures or requesting job accommodations. Our findings illustrate that employment issues are inadequately addressed by health professionals and draw attention to an unmet need in health services for persons with IA.

AUTHOR CONTRIBUTIONS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PARTICIPANTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

Dr. Lacaille had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study design. Lacaille, White, Backman, Gignac.

Acquisition of data. Lacaille, White.

Analysis and interpretation of data. Lacaille, White, Backman, Gignac.

Manuscript preparation. Lacaille, White, Backman, Gignac.

Statistical analysis. Lacaille.

REFERENCES

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PARTICIPANTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES