Perception, consequences, communication, and strategies for handling fatigue in persons with rheumatoid arthritis of working age—a focus group study
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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.
KeywordsDisability Fatigue Qualitative research Rheumatoid arthritis Work
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.
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