title: Living with persistent rheumatoid arthritis: a BARFOT study.
abstract: OBJECTIVE
  To describe and understand the meaning of living with persistent rheumatoid arthritis.
  
  
  BACKGROUND
  A considerable number of patients with rheumatoid arthritis live with an ongoing active and symptomatic illness despite access to potent antirheumatic treatment. There is, however, a lack of knowledge about the meaning of living with this severe long-term illness, defined as persistent rheumatoid arthritis.
  
  
  METHODS
  A descriptive design based on a hermeneutic phenomenological method was used.
  
  
  METHODS
  Ten adults with persistent rheumatoid arthritis and at least five years disease duration were interviewed. The interviews were analysed according to van Manen's method.
  
  
  RESULTS
  Living with persistent rheumatoid arthritis revealed four overall themes: an existence dominated by painful symptoms and treatment, radical changes and limitations in one's life, a continual struggle to cope with one's life and to master the illness, and a dependency on those who are close by and the world around. The lifeworld was affected to a varying extent and in various ways by the illness but also by the dependence on its treatment and care that was not experienced as sufficiently meeting needs in terms of security, access to and coordination of care as well as team and rehabilitation services.
  
  
  CONCLUSIONS
  Persistent rheumatoid arthritis and its treatment entail a radical effect on the person's life and quality of life. Current ordinary rheumatology care does not seem to meet the individual needs of the person with persistent rheumatoid arthritis in an optimal way.
  
  
  CONCLUSIONS
  A greater knowledge about and understanding of the person who lives with persistent rheumatoid arthritis is important for facilitating the development of care and the relief of suffering. A holistic alternative to conventional clinical practice, such as person-centred care, could be tested as an innovative model of care. Our findings might serve as material for educational and counselling purposes for healthcare professionals.
authors.affiliation: Department of Health Sciences, Lund University, Lund, Sweden.|Section of Rheumatology, Department of Medicine, Helsingborg Hospital, Helsingborg, Sweden.
authors.forename: Sidona-Valentina
authors.initials: SV
authors.lastname: Bala
authors.affiliation: Department of Health Sciences, Lund University, Lund, Sweden.
authors.forename: Karin
authors.initials: K
authors.lastname: Samuelson
authors.affiliation: The PRO-CARE Group, School of Health and Society, Kristianstad University, Kristianstad, Sweden.
authors.forename: Peter
authors.identifier: http://orcid.org/0000-0003-2174-372X
authors.initials: P
authors.lastname: Hagell
authors.affiliation: Department of Health Sciences, Lund University, Lund, Sweden.|School of Health and Welfare, Jönköping University, Jönköping, Sweden.
authors.forename: Bengt
authors.initials: B
authors.lastname: Fridlund
authors.affiliation: Section of Rheumatology, Department of Medicine, Helsingborg Hospital, Helsingborg, Sweden.|Section of Rheumatology at the Institution of Clinical Science, Lund University, Helsingborg, Sweden.
authors.forename: Kristina
authors.initials: K
authors.lastname: Forslind
authors.affiliation: Section of Rheumatology at the Institution of Clinical Science, Lund University, Lund, Sweden.
authors.forename: Björn
authors.initials: B
authors.lastname: Svensson
authors.affiliation: Department of Health Sciences, Lund University, Lund, Sweden.
authors.forename: Bibbi
authors.initials: B
authors.lastname: Thomé
mesh_terms: D000223:Adaptation, Psychological; D000368:Aged; D001172:Arthritis, Rheumatoid / Q000523:psychology*; D005260:Female; D066297:Hermeneutics; D006801:Humans; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D011788:Quality of Life
keywords: lived experience; persistent rheumatoid arthritis; person-centred care; phenomenology