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Patients' and healthcare providers' experiences of the cause, management and interaction in the care of rheumatoid arthritis
Jönköping University, School of Health Science, HHJ. Quality improvements, innovations and leadership in health care and social work.
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 [en]
Rheumatoid arthritis, patient perspective, self-management, illness perception, patient-provider interaction, provider perspective, person-centred care
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:hj:diva-16740ISBN: 978-91-85835-22-5 (print)OAI: oai:DiVA.org:hj-16740DiVA, id: diva2:457372
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
List of papers
1. Patterns of background factors related to early RA patients' conceptions of the causes of their disease
Open this publication in new window or tab >>Patterns of background factors related to early RA patients' conceptions of the causes of their disease
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2011 (English)In: Clinical Rheumatology, ISSN 0770-3198, E-ISSN 1434-9949, Vol. 30, no 3, p. 347-352Article in journal (Refereed) Published
Abstract [en]

The aim of the present study was to identify patterns of background factors related to the early RA patients' conceptions of the cause of the disease. Conceptions from a qualitative study formed the basis for the stratification of 785 patients from the Swedish EIRA study answering a question about their own thoughts about the cause to RA. Logistic regression analyses were used to explore the associations between patients' conceptions and relevant background factors: sex, age, civil status, educational level, anti-cyclic citrullinated peptide antibody (anti-CCP) and smoking habits. The results were presented as odds ratios (OR) with 95% confidence intervals (CI). A conception of family-related strain was strongly associated with being young (OR 0.50; 95% CI 0.33-0.78 for age 58-70 vs. 17-46), female (OR 0.38; 95% CI 0.25-0.60 for male vs. female) and having a high level of education (OR 2.15; 95% CI 1.54-3.01 for university degree vs. no degree). A conception of being exposed to climate changes was associated with being male (OR 1.99; 95% CI 1.24-3.22 for male vs. female), having a low level of education (OR 0.33; 95% CI 0.18-0.58 for university degree vs. no degree) and positive Anti-CCP (OR 1.72; 95% CI 1.03-2.87 for positive vs. negative Anti-CCP). Linking patients' conceptions of the cause of their RA to background factors potentially could create new opportunities for understanding the complexity of the aetiology in RA. Furthermore, this information is important and relevant in the care of patients with early RA.

Keywords
Pathogenesis, Patient perspective, Rheumatoid arthritis, Risk factors
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-14251 (URN)10.1007/s10067-010-1556-6 (DOI)000288216200006 ()20734214 (PubMedID)
Available from: 2011-01-10 Created: 2011-01-10 Last updated: 2021-04-05Bibliographically approved
2. Patients' conceptions of the cause of their rheumatoid arthritis: A qualitative study
Open this publication in new window or tab >>Patients' conceptions of the cause of their rheumatoid arthritis: A qualitative study
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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
John Wiley & Sons, 2009
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:hj:diva-9122 (URN)10.1002/msc.156 (DOI)19452494 (PubMedID)2-s2.0-70849098768 (Scopus ID)
Available from: 2009-05-27 Created: 2009-05-27 Last updated: 2020-02-25Bibliographically approved
3. "Delivering knowledge and advice": Healthcare providers' experiences of their interaction with patients' management of rheumatoid arthritis.
Open this publication in new window or tab >>"Delivering knowledge and advice": Healthcare providers' experiences of their interaction with patients' management of rheumatoid arthritis.
2011 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 6, no 4, p. -9Article in journal (Refereed) Published
Abstract [en]

Rheumatic diseases are often chronic and involve a lifetime of suffering. The focus of rheumatology care is to support patients to manage their lives and master their disease. Healthcare providers and patients have different views on the consequences of living with rheumatic diseases and patients are reporting unmet healthcare needs. There is a need to integrate providers' perspective to develop the quality of rheumatology care. The aim was to explore healthcare providers' experiences of their interaction with patients in their management of RA. Interviews with 18 providers from different clinical settings were analysed in accordance with the grounded theory method. A core category; Delivering knowledge and advice was found to be the most important task and involved providing the patient with information about the disease and appropriate forms of treatment. Healthcare providers' attitudes and patients' responses influenced the outcome of the delivery of knowledge and advice and three dimensions emerged; completed delivery, adjusted delivery and failed delivery. There were differences in the providers' experiences in their interaction with patients as well as in reflections on their role as the delivering part. There could be difficulties in the interaction when patients' expectations and preferences were not taken into account when giving advice. These findings highlight the importance of developing rheumatology care, as no provider or patient benefits if the delivery of knowledge and advice becomes a failed delivery. The healthcare organization must acknowledge the difficulties involved in the interaction with patients in their management of RA and find methods to develop a more person-centred approach to care.

Keywords
Grounded theory, healthcare provider, interaction, nursing, patient interaction, rheumatoid arthritis
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:hj:diva-16665 (URN)10.3402/qhw.v6i4.8473 (DOI)000297856100011 ()22053161 (PubMedID)
Available from: 2011-11-07 Created: 2011-11-07 Last updated: 2021-04-05Bibliographically approved
4. “Striving for a Good Life”: The Management of Rheumatoid Arthritis as Experienced by Patients
Open this publication in new window or tab >>“Striving for a Good Life”: The Management of Rheumatoid Arthritis as Experienced by Patients
2011 (English)In: Open Nursing Journal, E-ISSN 1874-4346, Vol. 5, p. 95-101Article in journal (Refereed) Published
Abstract [en]

Aim: To generate a theoretical model how patients experience their management of rheumatoid arthritis (RA) in everyday life.Method: An explorative design with the grounded theory approach was used by interviewing 16 informants with RA.Results: The generated theoretical model emerged in a core category- Striving for a good life with two categories; making use of personal resources and grasping for support from others, which formed the base of managing RA. When relating these categories together, four dimensions emerged which characterised patients’ different ways of managing RA: mastering, relying, struggling and being resigned.Discussion: The management of RA incorporated the use of personal resources and the grasping for support from others. Both self-management strategies and patients’ need of support were highlighted as aspects that were of importance when managing RA. Patients’ experiences of their need of support to manage RA give extended knowledge that is of importance for nurses and other healthcare providers. The relationship between patients and healthcare providers is always the key to a good encounter. Interventions to increase self-management in RA have to incorporate this knowledge when trying to increase patients’ self-efficacy and with their experience of support

Keywords
Rheumatoid arthritis, patient perspective, grounded theory, chronic diseases
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:hj:diva-16739 (URN)10.2174/1874434601105010095 (DOI)22135717 (PubMedID)
Available from: 2011-11-17 Created: 2011-11-17 Last updated: 2024-01-17Bibliographically approved

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