SHORT REPORT
People’s Perceptions and Beliefs about their Ability to Exercise with Rheumatoid Arthritis: A Qualitative Study M. Wang MSc, BSc (Hons), MCSP, M. Donovan-Hall PhD, H. Hayward MSc, MCSP & J. Adams* PhD, MSc, DipCOT University of Southampton, Southampton, UK
*Correspondence Dr J Adams, Faculty of Health Sciences, Building 67 (Nightingale Block) University of Southampton, Highfield Campus, Southampton, SO17 1BJ, UK. Tel: +44 (0)23 8059 7979; Fax: +44 (0)23 8059 7900. Email: [email protected]
Published online 5 November 2014 in Wiley Online Library (wileyonlinelibrary.com) DOI: 10.1002/msc.1087
Introduction Engaging with exercise has health benefits. People who regularly exercise reduce their risks of illness, including heart disease, depression and anxiety (Department of Health, 2009). People with rheumatoid arthritis (RA) are less physically active than the general population (Sokka et al., 2008; van de Berg et al., 2007), with associated implications for cardiovascular disease (CVD), osteoporotic fractures and reduced joint mobility (Haugeberg et al., 2002; Hurkmanns et al., 2009; Turesson and Matteson, 2007). People engage in exercise for a variety of reasons, including perceived health benefits and social enjoyment (Ogden, 2012; Plante et al., 2010). A person’s perceptions and beliefs about exercise may determine their engagement with exercise (Whaley and Schrider, 2005). The aim of the present study was to explore the perceptions and beliefs of people with RA about engaging in exercise.
Methods Full ethical approval was gained from the University of Southampton Faculty of Health Sciences Ethics Committee. Participants were invited to take part in a focus group if they were members of the National Rheumatoid Arthritis Society, able to travel to the interview site and contribute to the focus group without the need of a translator. A qualitative, semi-structured interview schedule was used to explore the personal impact of rheumatoid 112
arthritis, the participants’ current engagement with exercise, confidence related to engaging with exercise, and factors facilitating and limiting this engagement. The focus group was conducted at the university and lasted one hour. It was facilitated by one researcher (MW), with the assistance of another (HH), who recorded the order of speakers to assist with the transcription. Discussions between the participants were audio-recorded with participants’ consent and transcribed in their entirety immediately after the interview.
Data analysis The proceedings of the focus group were transcribed verbatim and thematic analysis conducted using published guidelines (Braun and Clarke, 2006). This involved reading and re-reading the transcript to become familiar with the data. Notes were made and ideas formulated to facilitate coding. Coding was performed manually using highlighter pens. Initial codes were then placed by each comment on the transcript and each comment was transcribed onto an index card with their unique code. A table was formulated with the list of ideas, codes and comments, which could be referred to in the index file. The initial codes were collated by sorting them into potential themes using mind maps. Themes and sub-themes began to form from the data that could be supported with illustrative quotes. Musculoskelet. Care 13 (2015) 112–115 © 2014 John Wiley & Sons, Ltd.
Wang et al.
Perceptions and Beliefs about Exercising with RA
Results Twenty-seven participants were contacted and 12 responded, six of whom were unable to attend on the interview date. Four women and two men, with a mean age of 58.2 years and with a mean duration of RA of 6.9 years, were recruited. Table 1 includes participant demographics. Six main themes were identified from the data, as described below. Theme 1: The belief that RA and its symptoms can limit participation in exercise The participants perceived pain and fatigue as the main limiting factors for exercise: ‘I think the fatigue is the hardest thing; just after half an hour of exercise, you just have to sit down and have a rest.’ (P4) ‘I have pain all over my body, so how could I have done the exercises?’ (P1) Some participants felt that just having RA prevented them from participating in a formal exercise class: ‘Having RA stops me joining exercise classes’. (P4) Theme 2: Medication mediates the ability to exercise
‘I went onto the injection, which was magical; I then felt I could think about exercising again’. (P3) Theme 3: Frustration from not being able to exercise All six participants were frustrated by not being able to exercise, mainly because of their symptoms: ‘Well, I get frustrated with the pain and lack of mobility and not being able to do the things I could normally do, such as exercise’. (P4) ‘I think the most frustrating thing for me was the pain I had because of my joint problems. I thought I wouldn’t be able to do a thing such as exercise’. (P2) Theme 4: Benefits and limitations from taking exercise Each participant understood that regular exercise was beneficial: ‘It gives you a great feeling of well-being, even if it’s just the achievement of feeling that you have done it’. (P4) Two participants found gardening, housework and knitting beneficial:
Once the symptoms of RA were lessened and their medication became effective, the participants felt able to engage in exercise:
‘I do my gardening, my house work and as much as I can; I move about as much as I can’. (P1) ‘One thing I have just started to do is knitting because I find it keeps my hands active’. (P3)
‘Once they get the medication correct to your particular symptoms and body, I felt I could then exercise’. (P2);
All participants found the social interaction linked with exercising enjoyable: ‘Yes, I do enjoy it and miss it when I don’t do it. I used to get a lot out of the social side of exercise, especially tennis’. (P5)
Table 1. Demographics of participants Participant
Gender
Age
Duration of RA
One Two Three Four Five Six
Female Male Male Female Female Female
68 39 76 63 59 44
18 years 15 years 2 years 1 year and 4 months 2 years 3 years
RA, rheumatoid arthritis
Musculoskelet. Care 13 (2015) 112–115 © 2014 John Wiley & Sons, Ltd.
The group agreed that they experienced practical barriers to engaging in exercise classes: ‘It’s getting out of bed and just getting there that can be a problem’. (P1) Two participants had stopped attending longer exercise classes: 113
Wang et al.
Perceptions and Beliefs about Exercising with RA
‘Tai Chi classes go on for so long. If I could do it sitting in a chair, I would do it because I just can’t stand up for half an hour’.. (P1) Theme 5: Fear of increasing symptoms, joint damage and infection would prevent them taking exercise Exercising on a ‘bad’ day for fear of increasing symptoms was a concern: ‘I don’t exercise if I feel fatigued or I’m having a bad day but I always take my pain killers before I do it, just so I know I am covered’. (P4) Two participants were concerned about joint damage from exercising: ‘I am always conscious about the damage I am doing to my joints if I try to exercise. Like now, I have had to have a steroid injection in my elbow and in my ankle because I have walked too much’. (P1) Four participants avoided public places such as swimming pools, for fear of catching a cold: ‘If we go swimming in a public place like a crowded swimming pool, you are highly likely to catch everything that everyone else has got, so that makes swimming quite difficult’. (P4) Theme 6: Conflict in advice from healthcare professionals could stop them exercising All participants were concerned about the conflicting information they received from health professionals regarding exercise: ‘Someone said [that] if it hurts, keep doing it as the exercise will make it better. I know if I exercised this elbow it would get worse, so I don’t understand why I have been told to continue to exercise with a swollen, painful joint.’ (P1) The participants were confused as advice on exercising was elusive: ‘When I was diagnosed, I was very concerned because nobody would give me any advice about exercise’. (P4) 114
Discussion It was evident that the participants engaged with exercise and were aware of the potential benefits, but symptoms such as pain and fatigue could prevent them from exercising, which caused frustration. It appeared that participants felt able to manage their pain, but not their fatigue, and this impacted on their perception of their ability to exercise. Although exercise has been shown to help fatigue levels (Lee et al., 2006), participants reported that the effort required to get into a routine of exercising was often too much. Not only was fear of pain while exercising a real concern, but pain was also a barrier to starting exercise. Lundgren et al. (2005) found that if a person had strong beliefs about pain and the association between pain and exercise, they would have a greater degree of fear avoidance and therefore would avoid physical activity. Discussing beliefs related to exercise initially is a reasonable place to start to try to support people with RA to engage in appropriate activity and exercise. Some participants were afraid of taking exercise in public places such as swimming pools because they thought that having RA made them more susceptible to infections. The present study revealed that the participants had received conflicting advice about exercise, and that this, in turn had affected their motivation to exercise. Exercise needs to be prescribed consistently and with a realistic aim to encourage people to engage successfully in an exercise programme. Currently, this does not appear to be the case. National Institute for Health and Care Excellence (NICE) guidelines for RA (2009) recommend that people with RA should be able to make informed choices about their care and treatments in partnership with their healthcare professionals. If people are not being given clear and consistent advice, this will make this more difficult to achieve.
Limitations This work was not without limitations. The recruitment from the National Rheumatoid Arthritis Society meant that the participants consisted of proactive people with an interest in their condition. People who agree to take part in research may also have different characteristics to those who do not. However, the findings contribute data to understanding pertinent issues for people with RA engaging in exercise. Musculoskelet. Care 13 (2015) 112–115 © 2014 John Wiley & Sons, Ltd.
Wang et al.
Conclusion Our findings showed that pain and fatigue limited people’s engagement with exercise. People with RA understand the benefits of taking exercise but receive conflicting advice from healthcare professionals about what is appropriate exercise. As a result of these findings, healthcare professionals can better understand peoples’ perceptions and beliefs about their ability to exercise with RA, and utilize them for future practice.
Acknowledgements The authors would like to thank Ailsa Bosworth, Chief Director, National Rheumatoid Arthritis Society, for supporting this research and to all the participants who gave their time so willingly.
REFERENCES Braun V, Clarke V (2006). Using thematic analysis in psychology. Qualitative Research In Psychology 3: 77–101. Department of Health (2009). Be active, be healthy: A plan to get the nation moving. Available at http://wwwhealthcaretoday.co.uk/doclibrary/documents/pdf/151_be_health.pdf [Accessed 8 October 2014]. Haugeberg G, Orstavik RE, Uhlig T, Falch JA, Halse JI, Kvien TK (2002). Clinical decision rules in rheumatoid arthritis: Do they identify patients at high risk for osteoporosis? Testing clinical criteria in a population based cohort of patients with rheumatoid arthritis recruited from the Oslo Rheumatoid Arthritis Register. Annals of the Rheumatic Diseases 61: 1085–9. Hurkmanns E, van der Giesen F, Vliet Vlieland T, Schoones J, Van den Ende E (2009). Dynamic exercise programs (aerobic capacity and/or muscle strength training) in patients with rheumatoid arthritis. Cochrane Database and Systematic Review 4: CD006853.
Musculoskelet. Care 13 (2015) 112–115 © 2014 John Wiley & Sons, Ltd.
Perceptions and Beliefs about Exercising with RA
Lee OE, Jong-Im Kim DNS, Davis AHT, Kim I (2006). Effects of regular exercise on pain, fatigue and disability in patients with rheumatoid arthritis. Family and Community Health 29: 320–7. Lundgren S, Olausson A, Bergstrom G, Stenstrom C (2005). Physical activity and pain among patients with rheumatoid arthritis – A cognitive approach. Advances in Physiotherapy 7: 77–83. National Institute for Health and Care Excellence (NICE) (2009). Rheumatoid arthritis: The management of rheumatoid arthritis in adults. Available at http://www.nice. org.uk/nicemedia/pdf/CG79FullGuideline.pdf [Accessed 28 August 2014]. Ogden J (2012). Health Psychology: A Text Book (5th edn). New York, NY: Open University Press. Plante T, Madden M, Mann S, Lee G, Hardesty A, Gable N, Terry A, Kaplow G (2010). Effects of perceived fitness of exercise partner on intensity of exertion. Journal of Social Sciences 6: 50–2. Sokka T, Häkkinen A, Kautiainen H Maillefert JF, Toloza S, Mørk Hansen T, Calvo-Alen J, Oding R, Liveborn M, Huisman M, Alten R, Pohl C, Cutolo M, Immonen K, Woolf A, Murphy E, Sheehy C, Quirke E, Celik S, Yazici Y, Tlustochowicz W, Kapolka D, Skakic V, Rojkovich B, Müller R, Stropuviene S, Andersone D, Drosos AA, Lazovskis J, Pincus T, QUEST-RA Group (2008). Physical inactivity in patients with rheumatoid arthritis: Data from twenty-one countries in a cross-sectional international study. Arthritis Care and Research 59: 42–50. Turesson C, Matteson E (2007). Cardiovascular risk factors, fitness and physical activity in rheumatic diseases. Current Opinion in Rheumatology 19: 190–6. van den Berg MH, de Boer I, Ingeborg G, le Cessie, SB, Ferdinand C, Vlieland V, Theodora P (2007). Are patients with rheumatoid arthritis less physically active than the general population? Journal of Clinical Rheumatology 13: 181–6. Whaley D, Schrider A (2005). The process of adult exercise adherence: Self-perceptions and competence. Sport Psychologist 19: 148–63.
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People’s Perceptions and Beliefs about their Ability to Exercise with Rheumatoid Arthritis: A Qualitative Study M. Wang MSc, BSc (Hons), MCSP, M. Donovan-Hall PhD, H. Hayward MSc, MCSP & J. Adams* PhD, MSc, DipCOT University of Southampton, Southampton, UK
*Correspondence Dr J Adams, Faculty of Health Sciences, Building 67 (Nightingale Block) University of Southampton, Highfield Campus, Southampton, SO17 1BJ, UK. Tel: +44 (0)23 8059 7979; Fax: +44 (0)23 8059 7900. Email: [email protected]
Published online 5 November 2014 in Wiley Online Library (wileyonlinelibrary.com) DOI: 10.1002/msc.1087
Introduction Engaging with exercise has health benefits. People who regularly exercise reduce their risks of illness, including heart disease, depression and anxiety (Department of Health, 2009). People with rheumatoid arthritis (RA) are less physically active than the general population (Sokka et al., 2008; van de Berg et al., 2007), with associated implications for cardiovascular disease (CVD), osteoporotic fractures and reduced joint mobility (Haugeberg et al., 2002; Hurkmanns et al., 2009; Turesson and Matteson, 2007). People engage in exercise for a variety of reasons, including perceived health benefits and social enjoyment (Ogden, 2012; Plante et al., 2010). A person’s perceptions and beliefs about exercise may determine their engagement with exercise (Whaley and Schrider, 2005). The aim of the present study was to explore the perceptions and beliefs of people with RA about engaging in exercise.
Methods Full ethical approval was gained from the University of Southampton Faculty of Health Sciences Ethics Committee. Participants were invited to take part in a focus group if they were members of the National Rheumatoid Arthritis Society, able to travel to the interview site and contribute to the focus group without the need of a translator. A qualitative, semi-structured interview schedule was used to explore the personal impact of rheumatoid 112
arthritis, the participants’ current engagement with exercise, confidence related to engaging with exercise, and factors facilitating and limiting this engagement. The focus group was conducted at the university and lasted one hour. It was facilitated by one researcher (MW), with the assistance of another (HH), who recorded the order of speakers to assist with the transcription. Discussions between the participants were audio-recorded with participants’ consent and transcribed in their entirety immediately after the interview.
Data analysis The proceedings of the focus group were transcribed verbatim and thematic analysis conducted using published guidelines (Braun and Clarke, 2006). This involved reading and re-reading the transcript to become familiar with the data. Notes were made and ideas formulated to facilitate coding. Coding was performed manually using highlighter pens. Initial codes were then placed by each comment on the transcript and each comment was transcribed onto an index card with their unique code. A table was formulated with the list of ideas, codes and comments, which could be referred to in the index file. The initial codes were collated by sorting them into potential themes using mind maps. Themes and sub-themes began to form from the data that could be supported with illustrative quotes. Musculoskelet. Care 13 (2015) 112–115 © 2014 John Wiley & Sons, Ltd.
Wang et al.
Perceptions and Beliefs about Exercising with RA
Results Twenty-seven participants were contacted and 12 responded, six of whom were unable to attend on the interview date. Four women and two men, with a mean age of 58.2 years and with a mean duration of RA of 6.9 years, were recruited. Table 1 includes participant demographics. Six main themes were identified from the data, as described below. Theme 1: The belief that RA and its symptoms can limit participation in exercise The participants perceived pain and fatigue as the main limiting factors for exercise: ‘I think the fatigue is the hardest thing; just after half an hour of exercise, you just have to sit down and have a rest.’ (P4) ‘I have pain all over my body, so how could I have done the exercises?’ (P1) Some participants felt that just having RA prevented them from participating in a formal exercise class: ‘Having RA stops me joining exercise classes’. (P4) Theme 2: Medication mediates the ability to exercise
‘I went onto the injection, which was magical; I then felt I could think about exercising again’. (P3) Theme 3: Frustration from not being able to exercise All six participants were frustrated by not being able to exercise, mainly because of their symptoms: ‘Well, I get frustrated with the pain and lack of mobility and not being able to do the things I could normally do, such as exercise’. (P4) ‘I think the most frustrating thing for me was the pain I had because of my joint problems. I thought I wouldn’t be able to do a thing such as exercise’. (P2) Theme 4: Benefits and limitations from taking exercise Each participant understood that regular exercise was beneficial: ‘It gives you a great feeling of well-being, even if it’s just the achievement of feeling that you have done it’. (P4) Two participants found gardening, housework and knitting beneficial:
Once the symptoms of RA were lessened and their medication became effective, the participants felt able to engage in exercise:
‘I do my gardening, my house work and as much as I can; I move about as much as I can’. (P1) ‘One thing I have just started to do is knitting because I find it keeps my hands active’. (P3)
‘Once they get the medication correct to your particular symptoms and body, I felt I could then exercise’. (P2);
All participants found the social interaction linked with exercising enjoyable: ‘Yes, I do enjoy it and miss it when I don’t do it. I used to get a lot out of the social side of exercise, especially tennis’. (P5)
Table 1. Demographics of participants Participant
Gender
Age
Duration of RA
One Two Three Four Five Six
Female Male Male Female Female Female
68 39 76 63 59 44
18 years 15 years 2 years 1 year and 4 months 2 years 3 years
RA, rheumatoid arthritis
Musculoskelet. Care 13 (2015) 112–115 © 2014 John Wiley & Sons, Ltd.
The group agreed that they experienced practical barriers to engaging in exercise classes: ‘It’s getting out of bed and just getting there that can be a problem’. (P1) Two participants had stopped attending longer exercise classes: 113
Wang et al.
Perceptions and Beliefs about Exercising with RA
‘Tai Chi classes go on for so long. If I could do it sitting in a chair, I would do it because I just can’t stand up for half an hour’.. (P1) Theme 5: Fear of increasing symptoms, joint damage and infection would prevent them taking exercise Exercising on a ‘bad’ day for fear of increasing symptoms was a concern: ‘I don’t exercise if I feel fatigued or I’m having a bad day but I always take my pain killers before I do it, just so I know I am covered’. (P4) Two participants were concerned about joint damage from exercising: ‘I am always conscious about the damage I am doing to my joints if I try to exercise. Like now, I have had to have a steroid injection in my elbow and in my ankle because I have walked too much’. (P1) Four participants avoided public places such as swimming pools, for fear of catching a cold: ‘If we go swimming in a public place like a crowded swimming pool, you are highly likely to catch everything that everyone else has got, so that makes swimming quite difficult’. (P4) Theme 6: Conflict in advice from healthcare professionals could stop them exercising All participants were concerned about the conflicting information they received from health professionals regarding exercise: ‘Someone said [that] if it hurts, keep doing it as the exercise will make it better. I know if I exercised this elbow it would get worse, so I don’t understand why I have been told to continue to exercise with a swollen, painful joint.’ (P1) The participants were confused as advice on exercising was elusive: ‘When I was diagnosed, I was very concerned because nobody would give me any advice about exercise’. (P4) 114
Discussion It was evident that the participants engaged with exercise and were aware of the potential benefits, but symptoms such as pain and fatigue could prevent them from exercising, which caused frustration. It appeared that participants felt able to manage their pain, but not their fatigue, and this impacted on their perception of their ability to exercise. Although exercise has been shown to help fatigue levels (Lee et al., 2006), participants reported that the effort required to get into a routine of exercising was often too much. Not only was fear of pain while exercising a real concern, but pain was also a barrier to starting exercise. Lundgren et al. (2005) found that if a person had strong beliefs about pain and the association between pain and exercise, they would have a greater degree of fear avoidance and therefore would avoid physical activity. Discussing beliefs related to exercise initially is a reasonable place to start to try to support people with RA to engage in appropriate activity and exercise. Some participants were afraid of taking exercise in public places such as swimming pools because they thought that having RA made them more susceptible to infections. The present study revealed that the participants had received conflicting advice about exercise, and that this, in turn had affected their motivation to exercise. Exercise needs to be prescribed consistently and with a realistic aim to encourage people to engage successfully in an exercise programme. Currently, this does not appear to be the case. National Institute for Health and Care Excellence (NICE) guidelines for RA (2009) recommend that people with RA should be able to make informed choices about their care and treatments in partnership with their healthcare professionals. If people are not being given clear and consistent advice, this will make this more difficult to achieve.
Limitations This work was not without limitations. The recruitment from the National Rheumatoid Arthritis Society meant that the participants consisted of proactive people with an interest in their condition. People who agree to take part in research may also have different characteristics to those who do not. However, the findings contribute data to understanding pertinent issues for people with RA engaging in exercise. Musculoskelet. Care 13 (2015) 112–115 © 2014 John Wiley & Sons, Ltd.
Wang et al.
Conclusion Our findings showed that pain and fatigue limited people’s engagement with exercise. People with RA understand the benefits of taking exercise but receive conflicting advice from healthcare professionals about what is appropriate exercise. As a result of these findings, healthcare professionals can better understand peoples’ perceptions and beliefs about their ability to exercise with RA, and utilize them for future practice.
Acknowledgements The authors would like to thank Ailsa Bosworth, Chief Director, National Rheumatoid Arthritis Society, for supporting this research and to all the participants who gave their time so willingly.
REFERENCES Braun V, Clarke V (2006). Using thematic analysis in psychology. Qualitative Research In Psychology 3: 77–101. Department of Health (2009). Be active, be healthy: A plan to get the nation moving. Available at http://wwwhealthcaretoday.co.uk/doclibrary/documents/pdf/151_be_health.pdf [Accessed 8 October 2014]. Haugeberg G, Orstavik RE, Uhlig T, Falch JA, Halse JI, Kvien TK (2002). Clinical decision rules in rheumatoid arthritis: Do they identify patients at high risk for osteoporosis? Testing clinical criteria in a population based cohort of patients with rheumatoid arthritis recruited from the Oslo Rheumatoid Arthritis Register. Annals of the Rheumatic Diseases 61: 1085–9. Hurkmanns E, van der Giesen F, Vliet Vlieland T, Schoones J, Van den Ende E (2009). Dynamic exercise programs (aerobic capacity and/or muscle strength training) in patients with rheumatoid arthritis. Cochrane Database and Systematic Review 4: CD006853.
Musculoskelet. Care 13 (2015) 112–115 © 2014 John Wiley & Sons, Ltd.
Perceptions and Beliefs about Exercising with RA
Lee OE, Jong-Im Kim DNS, Davis AHT, Kim I (2006). Effects of regular exercise on pain, fatigue and disability in patients with rheumatoid arthritis. Family and Community Health 29: 320–7. Lundgren S, Olausson A, Bergstrom G, Stenstrom C (2005). Physical activity and pain among patients with rheumatoid arthritis – A cognitive approach. Advances in Physiotherapy 7: 77–83. National Institute for Health and Care Excellence (NICE) (2009). Rheumatoid arthritis: The management of rheumatoid arthritis in adults. Available at http://www.nice. org.uk/nicemedia/pdf/CG79FullGuideline.pdf [Accessed 28 August 2014]. Ogden J (2012). Health Psychology: A Text Book (5th edn). New York, NY: Open University Press. Plante T, Madden M, Mann S, Lee G, Hardesty A, Gable N, Terry A, Kaplow G (2010). Effects of perceived fitness of exercise partner on intensity of exertion. Journal of Social Sciences 6: 50–2. Sokka T, Häkkinen A, Kautiainen H Maillefert JF, Toloza S, Mørk Hansen T, Calvo-Alen J, Oding R, Liveborn M, Huisman M, Alten R, Pohl C, Cutolo M, Immonen K, Woolf A, Murphy E, Sheehy C, Quirke E, Celik S, Yazici Y, Tlustochowicz W, Kapolka D, Skakic V, Rojkovich B, Müller R, Stropuviene S, Andersone D, Drosos AA, Lazovskis J, Pincus T, QUEST-RA Group (2008). Physical inactivity in patients with rheumatoid arthritis: Data from twenty-one countries in a cross-sectional international study. Arthritis Care and Research 59: 42–50. Turesson C, Matteson E (2007). Cardiovascular risk factors, fitness and physical activity in rheumatic diseases. Current Opinion in Rheumatology 19: 190–6. van den Berg MH, de Boer I, Ingeborg G, le Cessie, SB, Ferdinand C, Vlieland V, Theodora P (2007). Are patients with rheumatoid arthritis less physically active than the general population? Journal of Clinical Rheumatology 13: 181–6. Whaley D, Schrider A (2005). The process of adult exercise adherence: Self-perceptions and competence. Sport Psychologist 19: 148–63.
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