Anne Ørnholt Kier1, Julie Midtgaard2,3, Karin Sørig Hougaard4, Anja Berggreen, Gunhild Bukh5, Renata Baronaite Hansen5, Lene Dreyer5. 1. Department of Rheumatology, Herlev and Gentofte University Hospital, Kildegårdsvej 28, 2900, Hellerup, Denmark. anne_villadsen@hotmail.com. 2. The University Hospitals Centre for Health Care Research (UCSF), Copenhagen University Hospital Rigshospitalet, Department 9701, Blegdamsvej 9, 2100, Copenhagen, Denmark. 3. Department of Public Health, University of Copenhagen, Øster Farimagsgade 5, 1014, Copenhagen, Denmark. 4. National Research Centre for the Working Environment, Lersø Parkallé 105, 2100, Copenhagen, Denmark. 5. Department of Rheumatology, Herlev and Gentofte University Hospital, Kildegårdsvej 28, 2900, Hellerup, Denmark.
Abstract
OBJECTIVE: Half of patients with systemic lupus erythematosus (SLE) consider fatigue to be the most disabling disease symptom. To develop and promote strategies to prevent and control fatigue, this study aimed to describe how women with SLE manage the experience of fatigue. METHODS: Four focus groups were conducted with 27 women with SLE, and data were analyzed by means of framework analysis. Two patient representatives with SLE were part of the investigator team. RESULTS: The analysis revealed three main themes (i.e., learning how to be open about fatigue, learning to listen to the body, and learning to accept fatigue) and six sub-themes (i.e., the search for recognition, legitimization, planning and prioritizing, the body's limits and self-indulgence, adjusting life to comply with resources, and acceptance of dependence). CONCLUSION: Fatigue is the controlling element in everyday life of women with SLE. Patients try to integrate fatigue into their everyday lives by attempting to control it and meet the challenges of structure and planning. This study indicates a need for clinicians to acknowledge patients' fatigue, including supporting patients' own resources, offering information, and conversation about fatigue, as well as involving patients' relatives.
OBJECTIVE: Half of patients with systemic lupus erythematosus (SLE) consider fatigue to be the most disabling disease symptom. To develop and promote strategies to prevent and control fatigue, this study aimed to describe how women with SLE manage the experience of fatigue. METHODS: Four focus groups were conducted with 27 women with SLE, and data were analyzed by means of framework analysis. Two patient representatives with SLE were part of the investigator team. RESULTS: The analysis revealed three main themes (i.e., learning how to be open about fatigue, learning to listen to the body, and learning to accept fatigue) and six sub-themes (i.e., the search for recognition, legitimization, planning and prioritizing, the body's limits and self-indulgence, adjusting life to comply with resources, and acceptance of dependence). CONCLUSION:Fatigue is the controlling element in everyday life of women with SLE. Patients try to integrate fatigue into their everyday lives by attempting to control it and meet the challenges of structure and planning. This study indicates a need for clinicians to acknowledge patients' fatigue, including supporting patients' own resources, offering information, and conversation about fatigue, as well as involving patients' relatives.
Authors: M P T de Wit; S E Berlo; G J Aanerud; D Aletaha; J W Bijlsma; L Croucher; J A P Da Silva; B Glüsing; L Gossec; S Hewlett; M Jongkees; D Magnusson; M Scholte-Voshaar; P Richards; C Ziegler; T A Abma Journal: Ann Rheum Dis Date: 2011-01-20 Impact factor: 19.103
Authors: Bernadet Sutanto; Davinder Singh-Grewal; H Patrick McNeil; Sean O'Neill; Jonathan C Craig; Julie Jones; Allison Tong Journal: Arthritis Care Res (Hoboken) Date: 2013-11 Impact factor: 4.794
Authors: Rory C Monahan; Liesbeth Jj Beaart-van de Voorde; Jeroen Eikenboom; Rolf Fronczek; Margreet Kloppenburg; Huub Am Middelkoop; Gisela M Terwindt; Nic Ja van der Wee; Tom Wj Huizinga; Gerda M Steup-Beekman Journal: Lupus Date: 2021-03-28 Impact factor: 2.911