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Living with persistent rheumatoid arthritis : A BARFOT study

Bala, Sidona Valentina LU ; Samuelson, Karin LU ; Hagell, Peter LU ; Fridlund, Bengt LU ; Forslind, Kristina LU ; Svensson, Björn LU and Thomé, Bibbi LU (2017) In Journal of Clinical Nursing 26(17-18). p.2646-2656
Abstract

Aim and 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. Design: 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... (More)

Aim and 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. Design: 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. Relevance to clinical practice: 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.

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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Lived experience, Persistent rheumatoid arthritis, Person-centred care, Phenomenology
in
Journal of Clinical Nursing
volume
26
issue
17-18
pages
2646 - 2656
publisher
Wiley-Blackwell
external identifiers
  • scopus:85012303106
  • wos:000408919200013
ISSN
0962-1067
DOI
10.1111/jocn.13691
language
English
LU publication?
yes
id
3211c734-84c0-4dcc-a267-5ac609fe6d73
date added to LUP
2017-02-23 12:00:42
date last changed
2018-10-03 11:13:47
@article{3211c734-84c0-4dcc-a267-5ac609fe6d73,
  abstract     = {<p>Aim and 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. Design: 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. Relevance to clinical practice: 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.</p>},
  author       = {Bala, Sidona Valentina and Samuelson, Karin and Hagell, Peter and Fridlund, Bengt and Forslind, Kristina and Svensson, Björn and Thomé, Bibbi},
  issn         = {0962-1067},
  keyword      = {Lived experience,Persistent rheumatoid arthritis,Person-centred care,Phenomenology},
  language     = {eng},
  month        = {02},
  number       = {17-18},
  pages        = {2646--2656},
  publisher    = {Wiley-Blackwell},
  series       = {Journal of Clinical Nursing},
  title        = {Living with persistent rheumatoid arthritis : A BARFOT study},
  url          = {http://dx.doi.org/10.1111/jocn.13691},
  volume       = {26},
  year         = {2017},
}