| 1. |
- Sallinen, Merja, et al.
(författare)
-
Fatigue, worry and fear : life events in the narratives of women with fibromyalgia
- 2012
-
Ingår i: Health Care for Women International. - : Informa UK Limited. - 0739-9332 .- 1096-4665. ; 33:5, s. 473-494
-
Tidskriftsartikel (refereegranskat)abstract
- In this article we explored narrated life stories of 20 women with a long history of fibromyalgia to reach a deeper understanding of how people interpret the causes and consequences of different life events and illness experiences. Based on narrative analysis, we identified three model narratives that illustrate the different life courses of women with fibromyalgia. In addition, we described a counternarrative that questions fibromyalgia as a chronic disease. In this narrative study, we give insights to the invisible symptoms and unheard experiences that are associated with fibromyalgia and to the ongoing discussion on the etiology and maintenance of fibromyalgia.
|
|
| 2. |
- Bennett, Sarah E., et al.
(författare)
-
Assessing acceptability and identifying barriers and facilitators to implementation of the EULAR recommendations for patient education in inflammatory arthritis : a mixed-methods study with rheumatology professionals in 23 European and Asian countries
- 2022
-
Ingår i: Annals of the Rheumatic Diseases. - : BMJ Publishing Group Ltd. - 0003-4967 .- 1468-2060. ; 81:10, s. 1348-1357
-
Tidskriftsartikel (refereegranskat)abstract
- Objectives: To disseminate and assess the level of acceptability and applicability of the European Alliance of Associations for Rheumatology (EULAR) recommendations for patient education among professionals in rheumatology across Europe and three Asian countries and identify potential barriers and facilitators to their application. Methods: A parallel convergent mixed-methods design with an inductive approach was used. A web-based survey, available in 20 different languages, was distributed to health professionals by non-probability sampling. The level of agreement and applicability of each recommendation was assessed by (0-10) rating scales. Barriers and facilitators to implementation were assessed using free-text responses. Quantitative data were analysed descriptively and qualitative data by content analysis and presented in 16 categories supported by quotes. Results: A total of 1159 completed the survey; 852 (73.5%) were women. Most of the professionals were nurses (n=487), rheumatologists (n=320), physiotherapists (n=158). For all recommendations, the level of agreement was high but applicability was lower. The four most common barriers to application were lack of time, lack of training in how to provide patient education, not having enough staff to perform this task and lack of evaluation tools. The most common facilitators were tailoring patient education to individual patients, using group education, linking patient education with diagnosis and treatment and inviting patients to provide feedback on patient education delivery.Conclusions: This project has disseminated the EULAR recommendations for patient education to health professionals across 23 countries. Potential barriers to their application were identified and some are amenable to change, namely training patient education providers and developing evaluation tools. © Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.
|
|
| 3. |
- Jones, Bethan, et al.
(författare)
-
Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis : a mixed-methods study with patients’ perspectives
- 2022
-
Ingår i: RMD Open. - London : BMJ Publishing Group Ltd. - 2056-5933. ; 8:1
-
Tidskriftsartikel (refereegranskat)abstract
- Objectives: To explore patients’ agreement andreasons for agreement or disagreement with the EULAR recommendations for patient education (PE) for people with inflammatory arthritis (IA). Methods: This mixed-method survey collected data using snowball sampling. The survey had been translated into 20 languages by local healthcare professionals, researchers and patient research partners. It explored the degree towhich patients with IA agreed with each recommendationfor PE (0=do not agree at all and 10=agree completely)and their rationale for their agreement level in free text questions. Descriptive statistics summarised participants’ demographics and agreement levels. Qualitative contentanalysis was used to analyse the free text data. Sixteen subcategories were developed, describing the reasons foragreement or disagreement with the recommendations,which constituted the categories. Results: The sample comprised 2779 participants(79% female), with a mean (SD) age 55.1 (13.1) yearsand disease duration 17.1 (13.3) years. Participants strongly agreed with most recommendations (median10 (IQR: 9–10) for most recommendations). Reasonsfor agreement with the recommendations included thebenefit of using PE to facilitate collaborative care andshared decision making, the value of flexible and tailored PE, and the value of gaining support from other patients.Reasons for disagreement included lack of resources for PE, not wanting informa tion to be tailored by healthcare professionals and a reluctance to use telephone-basedPE. Conclusion: The EULAR recommendations for PE havebeen disseminated among patients with IA. Overall, agreement levels were very high, suggesting that they reflect patients’ preferences for engaging in collaborative clinical care and using PE to facilitate and supplement their own understanding of IA. Reasons for not completely agreeing with the recommendations can inform implementation strategies and education of healthcare professionals. © Author(s) (or their employer(s)) 2022.
|
|
| 4. |
- Ndosi, Mwidimi, et al.
(författare)
-
Validation of the educational needs assessment tool as a generic instrument for rheumatic diseases in seven European countries
- 2014
-
Ingår i: Annals of the Rheumatic Diseases. - London : BMJ Books. - 0003-4967 .- 1468-2060. ; 73:12, s. 2122-2129
-
Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: To validate the educational needs assessment tool (ENAT) as a generic tool for assessing the educational needs of patients with rheumatic diseases in European Countries.METHODS: A convenience sample of patients from seven European countries was included comprising the following diagnostic groups: ankylosing spondylitis, psoriatic arthritis, systemic sclerosis, systemic lupus erythematosus, osteoarthritis (OA) and fibromyalgia syndrome. Translated versions of the ENAT were completed through surveys in each country. Rasch analysis was used to assess the construct validity of the adapted ENATs including differential item functioning by culture (cross-cultural DIF). Initially, the data from each country and diagnostic group were fitted to the Rasch model separately, and then the pooled data from each diagnostic group.RESULTS: The sample comprised 3015 patients; the majority, 1996 (66.2%), were women. Patient characteristics (stratified by diagnostic group) were comparable across countries except the educational background, which was variable. In most occasions, the 39-item ENAT deviated significantly from the Rasch model expectations (item-trait interaction χ(2) p<0.05). After correction for local dependency (grouping the items into seven domains and analysing them as 'testlets'), fit to the model was satisfied (item-trait interaction χ(2) p>0.18) in all pooled disease group datasets except OA (χ(2)=99.91; p=0.002). The internal consistency in each group was high (Person Separation Index above 0.90). There was no significant DIF by person characteristics. Cross-cultural DIF was found in some items, which required adjustments. Subsequently, interval-level scales were calibrated to enable transformation of ENAT scores when required.CONCLUSIONS: The adapted ENAT is a valid tool with high internal consistency providing accurate estimation of the educational needs of people with rheumatic diseases. Cross-cultural comparison of educational needs is now possible. © 2013 BMJ Publishing Group Ltd & European League Against Rheumatism.
|
|
| 5. |
- Ritschl, Valentin, et al.
(författare)
-
Educational readiness among health professionals in rheumatology: low awareness of EULAR offerings and unfamiliarity with the course content as major barriers-results of a EULAR-funded European survey
- 2023
-
Ingår i: RMD Open. - : BMJ PUBLISHING GROUP. - 2056-5933. ; 9:2
-
Tidskriftsartikel (refereegranskat)abstract
- BackgroundOngoing education of health professionals in rheumatology (HPR) is critical for high-quality care. An essential factor is education readiness and a high quality of educational offerings. We explored which factors contributed to education readiness and investigated currently offered postgraduate education, including the European Alliance of Associations for Rheumatology (EULAR) offerings.Methods and participantsWe developed an online questionnaire, translated it into 24 languages and distributed it in 30 European countries. We used natural language processing and the Latent Dirichlet Allocation to analyse the qualitative experiences of the participants as well as descriptive statistics and multiple logistic regression to determine factors influencing postgraduate educational readiness. Reporting followed the Checklist for Reporting Results of Internet E-Surveys guideline.ResultsThe questionnaire was accessed 3589 times, and 667 complete responses from 34 European countries were recorded. The highest educational needs were professional development, prevention and lifestyle intervention. Older age, more working experience in rheumatology and higher education levels were positively associated with higher postgraduate educational readiness. While more than half of the HPR were familiar with EULAR as an association and the respondents reported an increased interest in the content of the educational offerings, the courses and the annual congress were poorly attended due to a lack of awareness, comparatively high costs and language barriers.ConclusionsTo promote the uptake of EULAR educational offerings, attention is needed to increase awareness among national organisations, offer accessible participation costs, and address language barriers.
|
|
