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- Bergsten, Ulrika, et al.
(författare)
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“Delivering knowledge and advice” : Healthcare providers’ experiences of their interaction with patients’ management of rheumatoid arthritis
- 2011
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - Abingdon : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 6:4
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 2. |
- Bergsten, Ulrika, et al.
(författare)
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Dignity, Identity and Quality of Life – In Focus when Patients Set the Research Agenda
- 2013
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Ingår i: Annals of the Rheumatic Diseases. - London : BMJ Books. - 0003-4967 .- 1468-2060. ; 72:Suppl. 3, s. A776-A776
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Tidskriftsartikel (refereegranskat)abstract
- Background: The rheumatic diseases are usually long lasting and affect the daily life in form of pain, stiffness and fatigue. Patients' perceptions of their illness and its consequences differ to some extent from the established medical view. This also means that there could be unidentified areas of research that could be of great value for the patients. The Swedish Rheumatism Association (the national patient organization) and Research- and Development-center Spenshult decided to carry out a joint project to develop patient initiated research in order to increase knowledge and to improve the care of the rheumatic diseases.Objectives: The aim of the project was to develop and describe new research areas from a patient perspective that not had been adequately covered previously and to initiate projects that patients consider to be of importance for development of rheumatology care.Methods: A project team was formed consisting of five research partners (specially educated people with personal experience of a rheumatic disease) and a project manager. The project team used a structured method throughout the project in order to maintain focus at the patient perspective. The structured method that was used – The dialogue model – is developed with the purpose to promote the dialogue between different stakeholders such as patients and researchers. During the project there were other members of the local rheumatic association engaged in the form of focus groups. Experiences were communicated in four focus group interviews and by individuals that had experience of rheumatic disease. The material was analyzed by content analysis research method.Results: The analysis resulted in several research ideas and research areas that were important from the patient perspective. Most of them focused on the patient's dignity, identity and quality of life. The repeated theme was: How can a person maintain or improve their quality of life despite chronic illness? Persons who participated in the focus groups communicated their experiences of having a rheumatic disease and the central point was how life changes when you suffer from a chronic disease and that the “whole life” was affected to different degrees. It was also clear that there are shortcomings in health care and society in terms of providing support and assistance to the person with a rheumatic disease.Conclusions: A structured approach involving research partners and members of patient associations generated several new research ideas that now are planned to be developed further. The patient initiated research agenda complements the established medical view and could improve the knowledge and understanding of having a rheumatic disease and an opportunity to develop rheumatology care to be more person-centered.
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| 3. |
- Bergsten, Ulrika, et al.
(författare)
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Gender differences in illness perceptions and disease management in patients with gout, results from a questionnaire study in Western Sweden.
- 2023
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Ingår i: BMC musculoskeletal disorders. - 1471-2474. ; 24:1
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Tidskriftsartikel (refereegranskat)abstract
- Aims were to examine gender differences in patients with gout with regard to a) self-reported gout severity, b) illness perceptions (IP), c) impact on daily activities and Quality of Life (QoL), d) advice from healthcare professionals, e) having changed dietary- or alcohol habits.Adult patients with gout identified in primary and secondary care in Sweden between 2015 and 2017 (n = 1589) were sent a questionnaire about demographics, gout disease severity, IP (using the Brief Illness Perception Questionnaire, (B-IPQ)) and disease management. T-tests, Chi square tests, ANalysis Of VAriance (ANOVA) and linear regression models were used for gender comparisons.Eight hundred sixty-eight patients responded to the questionnaire. Women, n = 177 (20%), experienced more severe gout symptoms (p = 0.011), albeit similar frequencies of flares compared to men. Women experienced modest but significantly worse IP with regard to consequences, identity, concerns and emotional response (p < 0.05) as well as daily activities such as sleeping (p < 0.001) and walking (p = 0.042) and QoL (p = 0.004). Despite this and a higher frequency of obesity in women (38 vs 21%, P < 0.001) and alcohol consumption in men (p < 0.001), obese women had received significantly less advice regarding weight reduction (47 vs 65%, p = 0.041) compared to obese men. On the other hand, women reported having acted on dietary advice to a larger degree.Despite only modestly worse gout severity and perception, women appear to have been given less information regarding self-management than men. These gender differences should be given attention and addressed in clinical care.
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| 4. |
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| 5. |
- Bergsten, Ulrika, 1966-
(författare)
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Patients' and healthcare providers' experiences of the cause, management and interaction in the care of rheumatoid arthritis
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- 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.
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| 6. |
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| 7. |
- Bergsten, Ulrika, et al.
(författare)
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Patterns of background factors related to early RA patients' conceptions of the causes of their disease
- 2011
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Ingår i: Clinical Rheumatology. - London : Springer Science and Business Media LLC. - 0770-3198 .- 1434-9949. ; 30:3, s. 347-352
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 8. |
- Bergsten, Ulrika, et al.
(författare)
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Perception of tactile massage as a complement to other forms of pain relief in rheumatic disease
- 2005
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Ingår i: Musculoskeletal Care. - West Sussex, UK : John Wiley & Sons. - 1478-2189 .- 1557-0681. ; 3:3, s. 157-167
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To investigate how patients with rheumatic disease perceive tactile massage as a complement to other pain alleviation methods.Methods: A phenomenographic approach with semi-structured interviews was employed on a strategic sample of 14 patients with various rheumatic diseases, both inflammatory and non-inflammatory, who had been admitted to Spenshult Rheumatic Hospital.Results: Three descriptive categories with a total of nine conceptions emerged. The descriptive categories were: experiencing alleviation, experiencing trust, and gaining insight. Experiencing alleviation described how patients experience relaxation, pleasure and respite. Experiencing trust described how patients experience a sense of security, confirmation and inner peace. Gaining insight described how patients get to know themselves, see possibilities, and experience wholeness.Conclusions: When caring for patients who have a chronic illness involving considerable changes to their lives, it is important for health professionals not only to be aware of their physical needs but also to take account of the whole person. This study demonstrates the importance of offering patients a complement to conventional treatment. Tactile massage is a method that promotes a holistic view of patients with chronic pain as well as allowing them to find a new focus in terms of the disease and how they cope with it in their daily lives.
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| 9. |
- Bergsten, Ulrika, 1966-, et al.
(författare)
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“Striving for a Good Life” : The Management of Rheumatoid Arthritis as Experienced by Patients
- 2011
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Ingår i: Open Nursing Journal. - Hilversum : Bentham Science Publishers Ltd.. - 1874-4346. ; 5, s. 95-101
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Tidskriftsartikel (refereegranskat)abstract
- 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
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| 10. |
- Dehlin, Mats, et al.
(författare)
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Dr. Dehlin, et al reply.
- 2019
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Ingår i: The Journal of rheumatology. - : The Journal of Rheumatology. - 0315-162X .- 1499-2752. ; 46:11
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- It was with great interest that we read the letter from Watson and colleagues1 describing their investigation of how a primary care diagnosis of gout compares to a primary care diagnostic rule for gout and the 1977 American Rheumatism Association (ARA) classification criteria of acute arthritis of primary gout. They present positive predictive values (PPV) of 74% for the diagnostic rule and 80% for the ARA criteria.
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