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Abstract

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

Objective

Research points to many potential benefits of physical activity (PA) for those with arthritis. However, PA has not typically been examined within the context of other life roles. This study examined the perceptions of PA among individuals managing arthritis in addition to employment and other role demands.

Methods

Eight focus groups were conducted with 24 women and 16 men (age range 29–72 years) who were currently or recently employed (within 2 years) and had osteoarthritis or inflammatory arthritis. Participants were recruited from community newspaper advertisements, rheumatology clinics, and arthritis groups. Discussions were audiotaped and transcribed. Transcripts were analyzed using qualitative content analysis.

Results

All groups discussed the impact of arthritis on a range of PAs. Overall, participants discussed PA as positively influencing their health and well-being. Yet, several overarching themes highlighted the complexity of PA, including 1) PA as a potential cause of arthritis; 2) the reciprocal impact of arthritis on PA and PA on arthritis; 3) physical and psychological benefits and harms of PA, such as difficulty making PA decisions when living in pain or when faced with episodic symptoms; 4) perceived choices about engagement in PA (e.g., role overload); and 5) social support.

Conclusion

The relationships among work, health, and other roles were complex. Competing demands, pain, energy, episodic symptoms, support, and decisions to disclose one's illness at work influenced PA. Changes to PA not only affected physical health but also people's self-identity. PA interventions may be improved by taking into account the demands of multiple life roles.


INTRODUCTION

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

Research finds that individuals who participate in multiple life roles have better physical and psychological health ([1-3]). However, people with arthritis may be restricted in their roles as a result of their disease and symptoms such as pain and fatigue. They may give up or limit important roles and valued life activities, including employment, social activities, and leisure pursuits ([4-10]). At the same time, a number of factors have been found to ameliorate the impact of arthritis, suggesting that some strategies may help individuals continue to participate in diverse roles. Among these is physical activity (PA) ([11-15]). PA is broadly defined as body movement created by the contraction of skeletal muscles that increases energy expenditure. Exercise is a subset of PA that is typically planned and structured ([16]). Studies find that individuals with arthritis who engage in regular PA or exercise report fewer physical limitations or restrictions in their day-to-day lives ([17-20]).

Unfortunately, epidemiologic studies indicate that the majority of adults with arthritis are either sedentary or insufficiently active for health benefits ([12, 21-24]). Perceived barriers to PA include lack of time and motivation, as well as arthritis symptoms such as pain, fatigue, and other comorbid conditions ([11, 25-27]). Moreover, some research finds that PA may leave individuals at risk for aggravating arthritis symptoms or even contribute to the development of certain types of arthritis such as osteoarthritis (OA) ([13-15, 28]). This may be particularly true of occupational PA requiring prolonged squatting, kneeling, and heavy lifting ([28]).

The mixed findings related to PA and arthritis point to the need to understand PA within the broader context of people's lives and especially in terms of time-intensive, valued roles such as employment. Existing research finds that people with arthritis report difficulties balancing roles such as work, personal demands, and health ([4, 29-32]) and may report role overload and the need to make tradeoffs in order to manage these demands. People with arthritis also are more likely to limit and give up leisure activities, which may include PA rather than personal care and household or employment tasks ([30-32]). However, little is known about the perceptions that individuals with arthritis have of their PA within a framework of managing multiple roles. A qualitative study using focus groups examined these issues within the context of a larger employment study looking at managing work, life, and arthritis ([32]).

Box 1. Significance & Innovations

  • Consideration of work–life balance and role overload can inform physical activity (PA) interventions and may improve adherence to PA.
  • PA related to work demands and commuting helped many participants remain active. Greater attention to developing work place PA strategies may help those working with arthritis increase their PA levels.
  • Many individuals are not clear about the types and duration of PAs that would promote health and not aggravate arthritis. Gauging PA is particularly difficult in light of episodic and changing symptoms. Greater attention to the episodic nature of arthritis in research, education, and knowledge translation is needed.
  • Loss of identity as a physically active person was distressing for some individuals with arthritis. This psychological impact needs greater recognition in addition to the physical impact of arthritis.

PATIENTS AND METHODS

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

Participants

A telephone screening questionnaire established eligibility of the participants and included a physician diagnosis of OA or inflammatory arthritis (IA; e.g., rheumatoid arthritis, psoriatic arthritis), being currently or recently employed (in the past 2 years), and fluency with English. Participants were excluded if they had other health conditions causing physical disability (e.g., multiple sclerosis), had been injured or involved in an accident within the previous year, or were on a waiting list for surgery (e.g., joint replacement). Individuals with nondisabling comorbidities (e.g., hypertension, allergies) were not excluded, since this would have resulted in a highly unrepresentative sample.

Procedure

To ensure a range of occupations and that those receiving fewer health services were not systematically excluded, the sample was purposive. Participants were recruited from southwestern Ontario using rheumatology and rehabilitation clinics, community newspaper advertisements, and arthritis group contacts. A focus group methodology provided information in an environment where individuals could disclose and share experiences ([33]).

Trained moderators (SAK and MAMG) led the groups using a standard set of questions (Table 1). Focus group discussions were audiotaped and transcribed verbatim (removing identifying information). Informed written consent was obtained from all participants. Ethics approval was received from the University Health Network (REB 09-0375-AE). At the end of the discussion (∼1.5 hours), the participants completed a short questionnaire.

Table 1. Focus group questions
  1. Can you tell me a bit about what it's like to work and live with arthritis?
  2. Are there aspects or circumstances in your work place, home, or personal life that make it easier or harder for you to manage your arthritis in the ways you'd like?
  3. Past research has tended to focus on how arthritis can sometimes affect people's ability to work. We'd like to look at this issue from the other direction—has working affected your ability to take care of your arthritis? If so, how? If not, why do you think not?
  4. People sometimes say that working and other roles (e.g., taking care of the home, family members) interfere with one another and can even spill over and affect a person's health. What are your comments about this “interference” or “spillover” among different areas in your life?
  5. Is there anything important that we've missed discussing? Thinking about what we've discussed, are some issues more critical or important than others?

Measures

Demographic information included age, sex, education, and income. Participants reported the type of arthritis they had and its duration, and self-reported health (poor, fair, good, very good, or excellent). Disease activity was measured with the 5-item Rheumatoid Arthritis Disease Activity Index ([34, 35]). The Profile of Mood States fatigue subscale asked the extent to which participants felt worn out, fatigued, exhausted, sluggish, and weary in the past month (range 0–4, where 0 = not at all and 4 = extremely) ([36]). A joint homunculus identified painful, swollen, or stiff joints in the last 2 weeks ([37]). Categories for employment status were full time, part time, leave of absence/short-term disability, long-term disability, unemployed (i.e., looking for work), and not employed (i.e., not looking for work). These were collapsed into full time, part time, and not in the labor force. Respondents were asked whether they were absent from work in the past 6 months due to arthritis, whether arthritis affected work tasks, if they changed jobs because of arthritis, and whether they had disclosed their condition to their employer/supervisor (no/yes). They were also asked to what extent they had control over their work schedule (range 1–5, where 1 = not at all and 5 = a great deal).

Analyses

Focus group discussions were transcribed and entered into N6 ([36, 38]), a software package for organizing and coding qualitative data. Transcripts were analyzed using qualitative content analysis, a method for systematically making inferences from text ([39, 40]). One team member (MAMG) examined the transcripts to identify broad themes and developed a preliminary coding scheme. To enhance the credibility of coding, other team members were given separate transcripts for comparison with the coding scheme. Each transcript was subsequently coded by 2 of 4 trained coders working independently. The coders met frequently to ensure consistency and transparency in coding. Descriptive statistics (e.g., percentages, means) summarized data from the questionnaire.

RESULTS

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

The 8 focus groups included 24 women and 16 men (n = 40) ranging in age from 29–72 years (mean ± SD age 55.8 ± 8.6 years) (Table 2). In keeping with sampling goals for qualitative research, the participants were diverse in terms of their education, income levels, self-reported health, and arthritis symptoms. Approximately 60% of the participants were employed full time, 46.1% reported little if any control over their work schedule, 47.2% had not disclosed their condition to their employer, 38.5% were absent in the previous 6 months because of their condition, and 27.5% had changed jobs at some point because of their disease.

Table 2. Sample characteristics (n = 40)*
 Value
  1. Values are the number (percentage) unless otherwise indicated. OA = osteoarthritis; IA = inflammatory arthritis.

Age (range 29–72 years), mean ± SD years55.8 ± 8.6
Sex 
Male16 (40.0)
Female24 (60.0)
Marital status 
Married, common law, living as married14 (35.9)
Widowed, divorced, separated9 (23.1)
Never married16 (41.0)
Education 
Secondary school or less3 (7.9)
Some postsecondary10 (26.3)
Postsecondary graduate25 (65.8)
Household income, Canadian $ 
<40,0009 (22.5)
40,000–59,9997 (17.5)
60,000–79,9998 (20.0)
≥80,00011 (27.5)
Declined to answer5 (12.5)
Self-rated health 
Poor4 (10.3)
Fair4 (10.3)
Good18 (46.1)
Very good11 (28.2)
Excellent2 (5.1)
Type of arthritis 
OA20 (50.0)
IA16 (40.0)
Both OA and IA4 (10.0)
Arthritis duration (range 1–40 years), mean ± SD years12.3 ± 9.4
No. of joints affected, mean ± SD6.1 ± 3.8
Pain (n = 39; scale 0–10, observed range 0–10), mean ± SD5.3 ± 3.0
Fatigue (scale 0–20, observed range 0–20), mean ± SD8.7 ± 6.1
Employment status 
Full time24 (61.5)
Part time11 (28.2)
Not in the labor force4 (10.3)
Control over work schedule 
Not at all/a little18 (46.1)
Somewhat4 (10.3)
Quite a bit/a great deal17 (43.6)
Arthritis affects work place tasks 
No19 (48.7)
Disclosed health condition to employer 
No17 (47.2)
Absent due to arthritis in the past 6 months 
Yes15 (38.5)
Changed job because of arthritis 
Yes11 (27.5)

All of the groups discussed the impact of their disease on a wide range of activities. Several overarching themes emerged: 1) PA as a potential cause of arthritis; 2) the reciprocal impact of arthritis on PA and PA on arthritis; 3) difficulties, potential benefits, and harms of PA; 4) making choices about PA involvement; and 5) social support. Unless otherwise noted, similar themes were raised by those with OA and IA and women and men.

Causes of arthritis

Several participants, particularly those with OA, believed that injuries sustained during PA (e.g., anterior cruciate ligament tears) or treatment for injuries (e.g., knee surgery) played a role in their acquiring arthritis. Most focused on leisure PAs, especially sports injuries. One participant stated, “I have osteoarthritis in one knee more than the other and that could also be a result of playing a lot of sports when I was young” (AK). Another said, “… if you're a very active person, especially professional athletes … they basically tell you you'll have arthritis when you get older” (CM). Other roles were not generally discussed as a contributing factor to the development of arthritis. However, frequently noted by both those with OA and IA was that different roles, e.g., employment, household tasks, caregiving, and social activities, often exacerbated their condition. Sometimes the impact was temporary and easily managed (e.g., rest). Other times, it resulted in foregoing roles: “I had to change my lifestyle because I used to be a teacher … I couldn't work sitting; it's very hard when you have children around because they don't understand” (SC).

Reciprocal impact of arthritis on PA and PA on arthritis

The previous quotations highlight that the relationship between PA and arthritis was not unidirectional. Most participants discussed both the impact of their arthritis on PA and the impact of diverse activities on their arthritis. These discussions were often complex and highlighted both positive and negative reciprocal influences of PA. For example, many participants discussed the importance of staying physically active as health promoting: “I feel like the Tin Man – that if I stop moving, I'll rust up and that will be it” (JB). Another participant remarked, “… If I want to go on working, I have to be active but if I don't work, I won't be healthy. I will be depressed, will suffer… . The work depends on my ability to work and my health depends on my work. It's a circle” (EM). At the same time, most spoke about giving up some PAs. A few individuals noted a loss of their identity as an athletic or physically active person: “… I try to swim, walk. I do Pilates. I've chosen activities that will help my arthritis … I used to play basketball, tennis, skiing… . That stuff is all gone… . It's more the comfy [activities] that are more supportive of my joints” (LZ).

Occasionally participants mentioned adding new activities to their lives: “I learned how to ski about eight years ago. I always wanted to do it and I thought I'm not going to let this get me down” (DM). When discussing PA, the participants did not limit their discussion to leisure activities. Commuting to and from work was also discussed. Many participants commented on the benefits of active commuting: “I think a lot of it is positive attitude so I make myself walk to work and I enjoy it when I come back” (EM). Some participants with physically demanding jobs noted their work could be good and bad for their arthritis. A participant working in the restaurant industry commented, “I run all day. I'm on my feet the entire time… . And actually that's helped me a lot… . I stiffen up if I'm just sitting. Then I can't do a thing” (LB). However, many group members expressed uncertainty and concern about PA. A young man newly diagnosed with rheumatoid arthritis said, “I'm at a stage where I don't know – if I … maybe if I exercise – will it make it worse? … I don't want to do this because, first of all, it's not worth the pain, because I know what I go through and I don't want to experience that pain the next morning” (RB).

Difficulties, potential benefits, and harms of PA

The complexity and concerns expressed in discussions about the reciprocal influences between arthritis and PA left many participants uncertain whether PA was good or bad for them when they have arthritis. This was a prominent discussion point across the groups. Many participants experienced both benefits to and negative consequences of PA. In particular, the experience of pain when active or after activity moderated PA decisions for many individuals. Most participants reported engaging in some exercise, but were not sure what activities to do: “I joined a fitness gym and I tried doing certain exercises [and] that was hard on the knees and it was very painful… . I don't know if that's the way to go” (NC). A participant with OA asked others in the group, “My doctor told me that swimming is very good for people with arthritis. Is it true?” (FA). Types of activities that might be helpful and the potential benefit of PA in relieving or aggravating arthritis pain made PA decisions difficult.

Another factor that moderated some participants' PA decisions was episodic and unpredictable arthritis symptoms. The intermittent nature of symptoms for individuals sometimes made it hard to gauge whether changes in PA were needed and created uncertainty about their potential positive or negative consequences. An individual with IA reported, “It's very, very hard because … depending on what else has happened that day, whether you slept well or not the night before … I don't know where that limit is because it's always shifting” (TS). One member expressed it as a balancing act: “I find I've got to keep a delicate balance between exercise – I exercise too much and it hurts – if I don't exercise at all it hurts” (MC). We also heard from someone with OA, “… you never know how to gauge your pain … if I feel my body's not right I work out more, I exercise more. I do more leg strengthening exercise like squats and I feel better two days later” (NE). In a few instances, individuals decided to forgo exercise altogether: “… I won't exercise. I exercise and I have to lie in bed for two weeks. So I don't do it anymore” (MF).

Choices about engagement in PA

The joints affected by arthritis, fatigue, and perceived role overload were additional moderating factors influencing whether participants engaged in PA and the type, amount, and frequency of activity. A participant with knee OA commented, “Oh I can ride a bike for three hours and you know, and go swimming … or go skating and play hockey – the whole game. But as soon as someone says ‘let's go for a walk….’ It's the last thing I want to do because it hurts too much …” (SR). An individual with IA affecting her feet said, “Yeah, I've given up – I don't go to the gym anymore. Because of my feet there's not much use… . Walking itself is not so bad, but I can do that without paying the gym money … I used to dance, ballet, jazz, everything. Forget it …” (BT). Finally, one participant noted, “I had to give up everything, all sports. I used to play tennis and ski and everything else. And I don't do that anymore. I can't. I can't hang on to a racquet. I can't just start and stop with the knees” (AS).

The factors most discussed in the groups after joint pain were fatigue and perceived role overload. Most participants reported fatigue related to their disease, especially but not exclusively those with IA. Moreover, many respondents reported fatigue as a result of the many roles they were trying to juggle. As a result, despite recognizing the importance of PA, it was considered optional or discretionary compared to essential roles such as work and family. One participant stated, “I know when I get home, my kids are going to want to play soccer and the last thing I want to do is get up and do anything … the pain is worse as you go on through your day” (EC). Another individual acknowledged, “My life has changed so much. I gained a lot of weight. I used to practice a lot of sports. I have 4 kids so I work hard. I have a big house, too. Today I do about 10% of what I used to do and I'm always tired and in pain” (AC). A working parent commented, “I'm always on my feet all day so I find I'm so tired and I try to [exercise] … but I don't get much time because then my daughter wants me… . I'm up again [early] doing lunches and off to work, so I don't get much time” (SR).

In order to deal with limited time and energy, many participants made tradeoffs. One person stated, “I found that it was very difficult to keep gardening … I've had to choose … where I put my energy, and I know that some days I feel that all I've done is work, so that's kind of a bummer” (LH). Another participant commented, “I just don't have enough time to look after myself properly… . I have long hours… . So it's sort of playing in that world [employment] and yet dealing with this [arthritis]. Anyway, with all the stuff that I have to do to keep myself propped up to go to work every day and come home and sleep – that's it … it's that question of balance again” (MO). One participant summarized, “It's hard to plan and then face a lot of disappointment because you have to cancel. You have to make a choice. It's like – okay, I have to go to work tomorrow” (SJ).

Effective social support

An important facilitator of PA and a strategy that helped some participants “stay in the game” was having social support. One individual noted, “I think if you've got encouragement from your family as well, that helps. Yeah, just keep going” (CC). One group member reported having a very active sibling who acted as a support and role model: “We're all very active; we became a lot closer because of that thing [arthritis]” (NY). Another person reported about her husband, “And one of his best friends actually has the same kind of arthritis that I have and he does Iron Man [triathlon]. He's done seven of them… . I think, man, if you guys can do that …” (LH).

Although support from family for participation in PA was often noted, support from others in roles such as employment was more complex. As noted earlier, approximately half of our participants noted that they had decided not to disclose their arthritis at work. Not only did these individuals not receive support from others to manage physically demanding activities at work, they often tried to hide difficulties with activities from others. This may have exacerbated fatigue in individuals (i.e., they would not make changes to their work routine and activities) and may have contributed to having little energy for activities outside of their jobs. One participant commented, “I found it difficult when I started doing the job here… . I'm working 50-hour weeks. I'm really tired, but I'm lucky I have good support at home… . If I could do anything I'd shorten my hours a bit” (ML). A young male participant stated, “I only tell people that I'm friends with. Other than that, you don't want other people to know that you're weak… . I don't want to be seen as weak, can't do this, can't do that. Especially on the job” (RB).

DISCUSSION

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

By recruiting employed participants to discuss arthritis within the context of work and other roles, we were able to explore PA in participants' everyday lives, adding new insights and themes related to the perceived benefits and difficulties of PA when living with a chronic, disabling disease. Research in the area of PA and exercise has been mostly compartmentalized, i.e., many interventions are based on structured exercise programs and report health outcomes for older arthritis populations ([41, 42]). A strength of this study included gaining novel perspectives about PA across different types of arthritis, ages, and job demands. Findings highlight that most individuals were aware of the benefits of PA and many valued it in their life. Yet, avoiding additional harm and gauging PA in light of unpredictable and episodic symptoms of pain, fatigue, and other role demands made PA decisions difficult and complex.

Several participants, mostly those with OA, believed that PA played a causal role in their developing arthritis and felt that PA or physically demanding work could exacerbate their disease. Previous research on PA has generally emphasized the benefits of activity and has not always addressed potential drawbacks such as injuries or increased pain. Moreover, studies have typically ignored changes in symptoms and the difficulties individuals have in gauging how to respond to or modify their levels of PA. This study highlights that these perceptions are important barriers to PA that need to be assessed in future research. Interventions also need to find ways to help participants tailor their PA in light of changing pain, energy, and fears of exacerbating arthritis.

Comments by participants indicated that PA had meaning for some individuals that went beyond its health benefits. They reported that forgoing PA was a source of distress and signaled a loss to their identity ([43]). Studies have found that the ability to satisfactorily replace valued activities with new ones is related to positive psychological health ([31, 44]). As such, this study points to the need for increased attention to helping individuals regain or replace activities in ways that will be viewed as maintaining or enhancing identity. To sustain PA, it is not enough to discuss the health benefits of exercise; it is necessary to consider broader lifestyle preferences and goals.

Role overload from juggling the demands of arthritis, employment, and personal life resulted in reports of fatigue and was an important barrier to PA across all of the groups. Many participants emphasized that sustaining employment was threatened by their arthritis and, as such, jobs were given priority over leisure activities. This was particularly true for middle-aged participants, who often had young children at home and multiple role demands that were physically exhausting. Future research needs to devote greater attention to potential age differences and the needs of individuals at different life phases related to PA. Despite role demands, individuals recognized their energy limits and tried to find other ways to be active. One interesting finding was that many individuals valued PA in the work place and active commuting (e.g., walking to work). Currently, there is increasing attention to work place interventions to help people sustain employment ([45-48]). Incorporating ways to remain physically active while at work may be a novel way to improve the quality of life of people with arthritis and address their role priorities.

Also important to PA was support. Studies have found that social support is related to increased adherence to exercise programs ([49, 50]). Themes raised in this research focused less on supportive comments by family and more on instrumental help with tasks such as housework that could free up time and energy to engage in PA. Comments also noted that support from work colleagues potentially could be important to PA, but was complex, with many individuals being unwilling to disclose arthritis difficulties at work.

Limitations of this study need to be acknowledged. Although the mixed diagnosis and employment experiences enriched the discussion of PA decision making, the sample was small and may not have captured all of the themes relevant to PA. The focus group methodology also made it difficult to fully examine some factors that may impact PA levels. For example, facilitators did not ask about past PA levels, activity preferences, and gender, which could have shed additional light on PA decisions. These factors need additional attention in research with larger and more diverse samples. Nonetheless, this study adds to our understanding of the complexity of PA decisions in light of changing symptoms and competing life roles. It highlights areas for new research and measurement and provides guidance of issues important to address in interventions addressing PA and employment sustainability.

AUTHOR CONTRIBUTIONS

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

All authors were involved in drafting the article or revising it critically for important intellectual content, and all authors approved the final version to be published. Dr. Gignac 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 conception and design. Kaptein, Backman, Badley, Lacaille, Beaton, Hofstetter, Gignac.

Acquisition of data. Kaptein, Gignac.

Analysis and interpretation of data. Kaptein, Backman, Beaton, Gignac.

REFERENCES

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