title: How do women with lupus manage fatigue? A focus group study.
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).
  
  
  CONCLUSIONS
  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.affiliation: Department of Rheumatology, Herlev and Gentofte University Hospital, Kildegårdsvej 28, 2900, Hellerup, Denmark. anne_villadsen@hotmail.com.
authors.forename: Anne Ørnholt
authors.initials: AØ
authors.lastname: Kier
authors.affiliation: The University Hospitals Centre for Health Care Research (UCSF), Copenhagen University Hospital Rigshospitalet, Department 9701, Blegdamsvej 9, 2100, Copenhagen, Denmark.|Department of Public Health, University of Copenhagen, Øster Farimagsgade 5, 1014, Copenhagen, Denmark.
authors.forename: Julie
authors.initials: J
authors.lastname: Midtgaard
authors.affiliation: National Research Centre for the Working Environment, Lersø Parkallé 105, 2100, Copenhagen, Denmark.
authors.forename: Karin Sørig
authors.initials: KS
authors.lastname: Hougaard
authors.forename: Anja
authors.initials: A
authors.lastname: Berggreen
authors.affiliation: Department of Rheumatology, Herlev and Gentofte University Hospital, Kildegårdsvej 28, 2900, Hellerup, Denmark.
authors.forename: Gunhild
authors.initials: G
authors.lastname: Bukh
authors.affiliation: Department of Rheumatology, Herlev and Gentofte University Hospital, Kildegårdsvej 28, 2900, Hellerup, Denmark.
authors.forename: Renata Baronaite
authors.initials: RB
authors.lastname: Hansen
authors.affiliation: Department of Rheumatology, Herlev and Gentofte University Hospital, Kildegårdsvej 28, 2900, Hellerup, Denmark.
authors.forename: Lene
authors.initials: L
authors.lastname: Dreyer
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D003718:Denmark; D019468:Disease Management; D005221:Fatigue / Q000209:etiology / Q000503:physiopathology*; D005260:Female; D017144:Focus Groups; D006801:Humans; D007407:Interviews as Topic; D008180:Lupus Erythematosus, Systemic / Q000150:complications* / Q000503:physiopathology; D008875:Middle Aged; D036301:Qualitative Research; D011788:Quality of Life; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires
keywords: Fatigue; Focus group; Management; Patient representatives; SLE; Salutogenesis