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Clinical Rheumatology

, Volume 32, Issue 5, pp 557–566 | Cite as

Perception, consequences, communication, and strategies for handling fatigue in persons with rheumatoid arthritis of working age—a focus group study

  • Caroline FeldthusenEmail author
  • Mathilda Björk
  • Helena Forsblad-d’Elia
  • Kaisa Mannerkorpi
  • For the University of Gothenburg Centre for Person-Centred Care (GPCC)
Original Article

Abstract

The aim of this study was to describe how persons with rheumatoid arthritis (RA) of working age experience and handle their fatigue in everyday life. Six focus group discussions were conducted focusing on experiences of fatigue in 25 persons with RA (19 women, 6 men), aged 20–60 years. The discussions were recorded, transcribed verbatim, and analyzed according to qualitative content analysis. The analyses resulted in four categories. (1) Perception of fatigue: Fatigue was experienced different from normal tiredness, unpredictable, and overwhelming. It was associated with negative emotions, changed self-image, and fears. Feelings of frustration and shame were central when the persons were forced to omit valued life activities. (2) Consequences due to fatigue: The fatigue caused changes in cognitive ability, ability to act, and overall activity pattern where the increased need for rest and sleep caused an imbalance in daily life. The participants struggled not to let the fatigue interfere with work. The fatigue also brought negative consequences for their significant others. (3) Communicating fatigue: Fatigue was difficult to gain understanding for, and the participants adjusted their communication accordingly; it was important to keep up appearances. During medical consultation, fatigue was perceived as a factor not given much consideration, and the participants expressed taking responsibility for managing their fatigue symptoms themselves. (4) Strategies to handle fatigue: Strategies comprised conscious self-care, mental strategies, planning, and prioritizing. Fatigue caused considerable health problems for persons with RA of working age: negative emotions, imbalance in daily life due to increased need for rest, and difficulties gaining understanding. This draws attention to the importance of developing new modes of care to address fatigue in RA. Person-centered care to improve balance in life may be one approach needing further investigations.

Keywords

Disability Fatigue Qualitative research Rheumatoid arthritis Work 

Notes

Acknowledgment

The authors would like to thank the persons with RA who participated in this study, Lotta Holmberg and Birgitta Stenström, research partners from the Swedish Rheumatism Association, and Gillian Asplin for proofreading. Financial support was provided by ALF at Sahlgrenska University Hospital and The Swedish Research Council.

Disclosures

None

References

  1. 1.
    Scott DL, Wolfe F, Huizinga TW (2010) Rheumatoid arthritis. Lancet 376(9746):1094–1108. doi: 10.1016/s0140-6736(10)60826-4 PubMedCrossRefGoogle Scholar
  2. 2.
    Wolfe F, Hawley DJ, Wilson K (1996) The prevalence and meaning of fatigue in rheumatic disease. J Rheumatol 23(8):1407–1417PubMedGoogle Scholar
  3. 3.
    Belza BL (1995) Comparison of self-reported fatigue in rheumatoid arthritis and controls. J Rheumatol 22(4):639–643PubMedGoogle Scholar
  4. 4.
    Pollard LC, Choy EH, Gonzalez J, Khoshaba B, Scott DL (2006) Fatigue in rheumatoid arthritis reflects pain, not disease activity. Rheumatol (Oxford) 45(7):885–889. doi: 10.1093/rheumatology/kel021 CrossRefGoogle Scholar
  5. 5.
    Repping-Wuts H, Fransen J, van Achterberg T, Bleijenberg G, van Riel P (2007) Persistent severe fatigue in patients with rheumatoid arthritis. J Clin Nurs 16(11C):377–383. doi: 10.1111/j.1365-2702.2007.02082.x PubMedCrossRefGoogle Scholar
  6. 6.
    Repping-Wuts H, van Riel P, van Achterberg T (2009) Fatigue in patients with rheumatoid arthritis: what is known and what is needed. Rheumatol (Oxford) 48(3):207–209. doi: 10.1093/rheumatology/ken399 CrossRefGoogle Scholar
  7. 7.
    Bergman MJ, Shahouri SS, Shaver TS, Anderson JD, Weidensaul DN, Busch RE, Wang S, Wolfe F (2009) Is fatigue an inflammatory variable in rheumatoid arthritis (RA)? Analyses of fatigue in RA, osteoarthritis, and fibromyalgia. J Rheumatol 36(12):2788–2794. doi: 10.3899/jrheum.090561 PubMedCrossRefGoogle Scholar
  8. 8.
    Escobar ME, Gerhardt C, Roesler E, Kuroda MP, Silva MB, Skare TL (2010) Anemia versus disease activity as cause of fatigue in rheumatoid arthritis. Acta Reumatol Port 35(1):24–28PubMedGoogle Scholar
  9. 9.
    van Hoogmoed D, Fransen J, Bleijenberg G, van Riel P (2010) Physical and psychosocial correlates of severe fatigue in rheumatoid arthritis. Rheumatol (Oxford) 49(7):1294–1302. doi: 10.1093/rheumatology/keq043 CrossRefGoogle Scholar
  10. 10.
    Stebbings S, Herbison P, Doyle TC, Treharne GJ, Highton J (2010) A comparison of fatigue correlates in rheumatoid arthritis and osteoarthritis: disparity in associations with disability, anxiety and sleep disturbance. Rheumatol (Oxford) 49(2):361–367. doi: 10.1093/rheumatology/kep367 CrossRefGoogle Scholar
  11. 11.
    Mancuso CA, Rincon M, Sayles W, Paget SA (2006) Psychosocial variables and fatigue: a longitudinal study comparing individuals with rheumatoid arthritis and healthy controls. J Rheumatol 33(8):1496–1502PubMedGoogle Scholar
  12. 12.
    Belza BL, Henke CJ, Yelin EH, Epstein WV, Gilliss CL (1993) Correlates of fatigue in older adults with rheumatoid arthritis. Nurs Res 42(2):93–99PubMedCrossRefGoogle Scholar
  13. 13.
    Thyberg I, Dahlstrom O, Thyberg M (2009) Factors related to fatigue in women and men with early rheumatoid arthritis: the Swedish TIRA study. J Rehabil Med 41(11):904–912. doi: 10.2340/16501977-0444 PubMedCrossRefGoogle Scholar
  14. 14.
    Riemsma RP, Rasker JJ, Taal E, Griep EN, Wouters JM, Wiegman O (1998) Fatigue in rheumatoid arthritis: the role of self-efficacy and problematic social support. Br J Rheumatol 37(10):1042–1046PubMedCrossRefGoogle Scholar
  15. 15.
    Hewlett S, Cockshott Z, Byron M, Kitchen K, Tipler S, Pope D, Hehir M (2005) Patients' perceptions of fatigue in rheumatoid arthritis: overwhelming, uncontrollable, ignored. Arthritis Rheum 53(5):697–702. doi: 10.1002/art.21450 PubMedCrossRefGoogle Scholar
  16. 16.
    Repping-Wuts H, Uitterhoeve R, van Riel P, van Achterberg T (2008) Fatigue as experienced by patients with rheumatoid arthritis (RA): a qualitative study. Int J Nurs Stud 45(7):995–1002. doi: 10.1016/j.ijnurstu.2007.06.007 PubMedCrossRefGoogle Scholar
  17. 17.
    Nikolaus S, Bode C, Taal E, van de Laar MA (2010) New insights into the experience of fatigue among patients with rheumatoid arthritis: a qualitative study. Ann Rheum Dis 69(5):895–897. doi: 10.1136/ard.2009.118067 PubMedCrossRefGoogle Scholar
  18. 18.
    Arnett FC, Edworthy SM, Bloch DA, McShane DJ, Fries JF, Cooper NS, Healey LA, Kaplan SR, Liang MH, Luthra HS et al (1988) The American Rheumatism Association 1987 revised criteria for the classification of rheumatoid arthritis. Arthritis Rheum 31(3):315–324PubMedCrossRefGoogle Scholar
  19. 19.
    Krueger RA, Casey MA (2009) Focus groups: a practical guide for applied research. Sage Publications, Thousand Oaks, CAGoogle Scholar
  20. 20.
    Ivanoff SD, Hultberg J (2006) Understanding the multiple realities of everyday life: basic assumptions in focus-group methodology. Scand J Occup Ther 13(2):125–132PubMedCrossRefGoogle Scholar
  21. 21.
    Krishnan E, Tugwell P, Fries JF (2004) Percentile benchmarks in patients with rheumatoid arthritis: Health Assessment Questionnaire as a quality indicator (QI). Arthritis Res Ther 6(6):R505–513. doi: 10.1186/ar1220 PubMedCrossRefGoogle Scholar
  22. 22.
    Fries JF, Spitz P, Kraines RG, Holman HR (1980) Measurement of patient outcome in arthritis. Arthritis Rheum 23(2):137–145PubMedCrossRefGoogle Scholar
  23. 23.
    Kitzinger J (1994) The methodology of focus groups: the importance of interaction between research participants. Sociol Heal Illness 16(1):103–121CrossRefGoogle Scholar
  24. 24.
    Creswell JW (2007) Qualitative inquiry & research design: choosing among five approaches. SAGE, Thousand OaksGoogle Scholar
  25. 25.
    Krippendorff K (2004) Content analysis: an introduction to its methodology. Sage, Thousand Oaks, CalifGoogle Scholar
  26. 26.
    Graneheim UH, Lundman B (2004) Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 24(2):105–112. doi: 10.1016/j.nedt.2003.10.001 PubMedCrossRefGoogle Scholar
  27. 27.
    Tack BB (1990) Fatigue in rheumatoid arthritis. Conditions, strategies, and consequences. Arthritis Care Res 3(2):65–70PubMedGoogle Scholar
  28. 28.
    Trendall J (2000) Concept analysis: chronic fatigue. J Adv Nurs 32(5):1126–1131PubMedCrossRefGoogle Scholar
  29. 29.
    Gronblom-Lundstrom L (1992) Health as a measure of rehabilitation: outcome for patients with low back pain. Physiother Theor Pract 8(2):67–77CrossRefGoogle Scholar
  30. 30.
    Gustafsson B, Porn I (1994) A motivational approach to confirmation: an interpretation of dysphagic patients experiences. Theor Med 15(4):409–430PubMedCrossRefGoogle Scholar
  31. 31.
    van den Berg MH, de Boer IG, le Cessie S, Breedveld FC, Vliet Vlieland TP (2007) Most people with rheumatoid arthritis undertake leisure-time physical activity in The Netherlands: an observational study. Aust J Physiother 53(2):113–118PubMedCrossRefGoogle Scholar
  32. 32.
    Lacaille D, White MA, Backman CL, Gignac MA (2007) Problems faced at work due to inflammatory arthritis: new insights gained from understanding patients' perspective. Arthritis Rheum 57(7):1269–1279. doi: 10.1002/art.23002 PubMedCrossRefGoogle Scholar
  33. 33.
    Stamm T, Wright J, Machold K, Sadlo G, Smolen J (2004) Occupational balance of women with rheumatoid arthritis: a qualitative study. Musculoskeletal Care 2(2):101–112. doi: 10.1002/msc.62 PubMedCrossRefGoogle Scholar
  34. 34.
    Nikolaus S, Bode C, Taal E, van de Laar MA (2010) Four different patterns of fatigue in rheumatoid arthritis patients: results of a Q-sort study. Rheumatol (Oxford) 49(11):2191–2199. doi: 10.1093/rheumatology/keq210 CrossRefGoogle Scholar
  35. 35.
    Ahlmen M, Nordenskiold U, Archenholtz B, Thyberg I, Ronnqvist R, Linden L, Andersson AK, Mannerkorpi K (2005) Rheumatology outcomes: the patient's perspective. A multicentre focus group interview study of Swedish rheumatoid arthritis patients. Rheumatol (Oxford) 44(1):105–110. doi: 10.1093/rheumatology/keh412 CrossRefGoogle Scholar
  36. 36.
    Katz P, Morris A, Gregorich S, Yazdany J, Eisner M, Yelin E, Blanc P (2009) Valued life activity disability played a significant role in self-rated health among adults with chronic health conditions. J Clin Epidemiol 62(2):158–166. doi: 10.1016/j.jclinepi.2008.06.002 PubMedCrossRefGoogle Scholar
  37. 37.
    Finan PH, Okun MA, Kruszewski D, Davis MC, Zautra AJ, Tennen H (2010) Interplay of concurrent positive and negative interpersonal events in the prediction of daily negative affect and fatigue for rheumatoid arthritis patients. Heal Psychol 29(4):429–437. doi: 10.1037/a0020230 CrossRefGoogle Scholar
  38. 38.
    Hewlett S, Chalder T, Choy E, Cramp F, Davis B, Dures E, Nicholls C, Kirwan J (2011) Fatigue in rheumatoid arthritis: time for a conceptual model. Rheumatol (Oxford) 50(6):1004–1006. doi: 10.1093/rheumatology/keq282 CrossRefGoogle Scholar
  39. 39.
    Hewlett S, Ambler N, Almeida C, Cliss A, Hammond A, Kitchen K, Knops B, Pope D, Spears M, Swinkels A, Pollock J (2011) Self-management of fatigue in rheumatoid arthritis: a randomised controlled trial of group cognitive-behavioural therapy. Ann Rheum Dis 70(6):1060–1067. doi: 10.1136/ard.2010.144691 PubMedCrossRefGoogle Scholar
  40. 40.
    Evers AW, Kraaimaat FW, van Riel PL, de Jong AJ (2002) Tailored cognitive-behavioral therapy in early rheumatoid arthritis for patients at risk: a randomized controlled trial. Pain 100(1–2):141–153PubMedCrossRefGoogle Scholar
  41. 41.
    Ekman I, Swedberg K, Taft C, Lindseth A, Norberg A, Brink E, Carlsson J, Dahlin-Ivanoff S, Johansson IL, Kjellgren K, Liden E, Ohlen J, Olsson LE, Rosen H, Rydmark M, Sunnerhagen KS (2011) Person-centered care—ready for prime time. Eur J Cardiovasc Nurs. doi: 10.1016/j.ejcnurse.2011.06.008
  42. 42.
    McDonald HN, Dietrich T, Townsend A, Li LC, Cox S, Backman CL (2012) Exploring occupational disruption among women after onset of rheumatoid arthritis. Arthritis Care Res (Hoboken) 64(2):197–205. doi: 10.1002/acr.20668 CrossRefGoogle Scholar
  43. 43.
    Gignac MA, Sutton D, Badley EM (2007) Arthritis symptoms, the work environment, and the future: measuring perceived job strain among employed persons with arthritis. Arthritis Rheum 57(5):738–747. doi: 10.1002/art.22788 PubMedCrossRefGoogle Scholar
  44. 44.
    de Croon EM, Sluiter JK, Nijssen TF, Kammeijer M, Dijkmans BA, Lankhorst GJ, Frings-Dresen MH (2005) Work ability of Dutch employees with rheumatoid arthritis. Scand J Rheumatol 34(4):277–283. doi: 10.1080/03009740510018615 PubMedCrossRefGoogle Scholar
  45. 45.
    Mancuso CA, Paget SA, Charlson ME (2000) Adaptations made by rheumatoid arthritis patients to continue working: a pilot study of workplace challenges and successful adaptations. Arthritis Care Res 13(2):89–99PubMedCrossRefGoogle Scholar
  46. 46.
    Greenwood J, Parsons M (2002) The evaluation of a clinical development unit leadership preparation program by focus group interviews—part I: positive aspects. Nurse Educ Today 22(7):527–533PubMedGoogle Scholar

Copyright information

© Clinical Rheumatology 2012

Authors and Affiliations

  • Caroline Feldthusen
    • 1
    • 2
    Email author
  • Mathilda Björk
    • 1
    • 3
  • Helena Forsblad-d’Elia
    • 1
  • Kaisa Mannerkorpi
    • 1
    • 2
  • For the University of Gothenburg Centre for Person-Centred Care (GPCC)
  1. 1.Department of Rheumatology and Inflammation research, Institute of Medicine, Sahlgrenska AcademyUniversity of GothenburgGothenburgSweden
  2. 2.Department of Physical and Occupational TherapySahlgrenska University HospitalGothenburgSweden
  3. 3.Department of Rehabilitation, School of Health SciencesJönköping UniversityJönköpingSweden

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