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Patients' conceptions of the cause of their rheumatoid arthritis: A qualitative study
Jönköping University, School of Health Science, HHJ. Quality improvements, innovations and leadership in health care and social work.
Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. Quality improvements, innovations and leadership in health care and social work.
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2009 (English)In: Musculoskeletal Care, ISSN 1478-2189, E-ISSN 1557-0681, Vol. 7, no 4, p. 243-255Article in journal (Refereed) Published
Abstract [en]

Background: Patients' perspective of the causes and consequences of rheumatoid arthritis (RA) can conflict with that of healthcare professionals and lead to misunderstanding, difficulties in management and a poorer outcome. Objectives: The aim of this study was to describe the variation in how patients' conceive the cause of their RA.Methods: An open written question from the Epidemiological Investigation of Rheumatoid Arthritis (EIRA) study, aimed at patients recently diagnosed with RA, was answered by 38 strategically selected patients during 2003 and analysed using the phenomenographic approach.Results: Two descriptive categories and six concepts emerged: the category 'consequences beyond personal control' comprised not having a clue, being exposed to climatic change, being genetically exposed and unexpected effects of events; the category 'overloaded circumstances' involved work and family-related strain. Consequences beyond personal control implied that the patients could not prevent the disease and expressed their lack of understanding as to why they contracted it. Overloaded circumstances were described as strained situations that were both work and family related and could be influenced by the patient.Conclusions: The patient's perspective of the cause of their RA includes aspects that complement the current pathogenetic models and should therefore be considered in the management of the disease. When dealing with rheumatic diseases, it is necessary to be aware of the patient's perspectives in order to new management strategies. In addition to epidemiological studies, further studies of patients' own experience are needed in order to achieve a more tailored care model.

Place, publisher, year, edition, pages
2009. Vol. 7, no 4, p. 243-255
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:hj:diva-9122DOI: 10.1002/msc.156PubMedID: 19452494OAI: oai:DiVA.org:hj-9122DiVA, id: diva2:219425
Available from: 2009-05-27 Created: 2009-05-27 Last updated: 2017-12-13Bibliographically approved
In thesis
1. Patients' and healthcare providers' experiences of the cause, management and interaction in the care of rheumatoid arthritis
Open this publication in new window or tab >>Patients' and healthcare providers' experiences of the cause, management and interaction in the care of rheumatoid arthritis
2011 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Aim: The overall aim of this thesis was to explore and describe patients’ and healthcare providers’ experiences of the causes, management and interaction in the care of rheumatoid arthritis (RA). Method: The thesis is based on four studies. Studies I and II contain data from an epidemiologic project involving patients who were recently diagnosed with RA. The patients answered an open-ended question about their conception of the cause of their RA (Study I). Qualitative data from 38 patients were analysed using the phenomenographic approach in order to identify variation in conceptions. The results of Study I formed the basis for categorizing the conceptions of 785 patients in the search for patterns of background factors (Study II). Study III aimed to explore how patients experienced their management of RA in everyday life. Data were collected by interviews with 16 patients and analysed according to Grounded Theory (GT). In study IV, the aim was to explore healthcare providers’ experiences of their interaction with patients’ management of RA. Data were collected by interviews with 18 providers representing different professions and analysed using GT. Findings:  Patients’ conceptions of the cause of their RA revealed new aspects from the patient perspective that can complement pathogenetic models. Two descriptive categories emerged: consequences beyond personal control and overloaded circumstances, which included six categories of conceptions (Study I). The most common conceptions of the cause of RA were unexpected effects of events followed by work and family-related stress (Study II). Background factors that influenced the conceptions of the cause were age, sex and educational level. Patient management of RA involved using personal resources together with grasping for support from others in their striving for a good life. When linking these aspects together, four ways of management emerged: mastering, struggling, relying and being resigned (Study III). Healthcare providers’ experiences of their interaction with patients’ management shed light upon the important issue of delivering knowledge and advice. The providers’ attitudes constituted one cornerstone and patients’ responses the other. The providers reported that the interaction led to different outcomes: completed delivery, adjusted delivery and failed delivery. Conclusions: The findings contribute new knowledge from both patients’ and healthcare providers’ perspectives, which could be used to develop a more person-centred approach in rheumatology care. Person-centred care involves taking patients’ beliefs and values into account in addition to creating a trusting relationship between patient and provider. A successful person-centred approach requires an organisation that supports the person-centred framework.

Place, publisher, year, edition, pages
Jönköping: School of Health Sciences, 2011. p. 77
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 23
Keywords
Rheumatoid arthritis, patient perspective, self-management, illness perception, patient-provider interaction, provider perspective, person-centred care
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:hj:diva-16740 (URN)978-91-85835-22-5 (ISBN)
Public defence
2011-12-09, Forum Humanum, Hälsohögskolan, Jönköping, 10:30 (Swedish)
Opponent
Supervisors
Available from: 2011-11-17 Created: 2011-11-17 Last updated: 2011-11-17Bibliographically approved

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