| 1. |
- Bala, Sidona Valentina, et al.
(författare)
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Living with persistent rheumatoid arthritis : A BARFOT study
- 2017
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 26:17-18, s. 2646-2656
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Tidskriftsartikel (refereegranskat)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 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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| 2. |
- Bala, Sidona-Valentina, et al.
(författare)
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Measuring person-centered care in nurse-led outpatient rheumatology clinics
- 2018
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- BACKGROUND: Person-centered care (PCC) is a key component to effective illness management and high-quality care but conceptually underdeveloped in outpatient care settings for long-term disorders such as rheumatoid arthritis (RA), and there is a lack of instruments measuring patient perceived PCC. AIM: To conceptualize and operationalize outpatient PCC as a basis for measuring patient-perceived PCC in nurse-led outpatient rheumatology clinics. DESIGN: A conceptual outpatient PCC framework was developed based on theory and patient experiences.The resulting framework was operationalizedinto items that were tested regarding their accordancewith the theoretical framework and their measurement properties according to Rasch measurement theory (RMT) using the RUMM2030 software. RESULTS: The conceptual framework comprised five intermingled domains (personalization, shared decision-making, empowerment, communication, and social environment) that were operationalized into a 24-item PCC instrument for outpatient care in rheumatology (PCCoc/rheum). RMT analyses found items to successfully map out a quantitative continuum from lower to higher PCC levels, with generally acceptable model fit and a reliability of 0.88. Three items exhibiting multidimensionality, dysfunctional response categories, and/or unexpected hierarchical ordering were omitted. The revised PCCoc/rheum showed good accordance with the conceptual framework, improved fit, functioning response categories, and no DIF; reliability was 0.86. SUMMARY AND IMPLICATIONS: We found support for the PCCoc/rheum as a conceptually based outcome measure of patient perceived PCC. Results implied minor theoretical reconsiderations, and related scale revisions improved theoretical and clinical clarity. While in need of further testing, the PCCoc/rheum has great potential as a measure of outpatient PCC from a patient perspective.
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| 3. |
- Bala, Sidona Valentina, et al.
(författare)
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Measuring person-centred care in nurse-led outpatient rheumatology clinics
- 2018
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Ingår i: Musculoskeletal Care. - : John Wiley & Sons. - 1478-2189 .- 1557-0681. ; 16:2, s. 296-304
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Tidskriftsartikel (refereegranskat)abstract
- Background: Measurement of person-centred care (PCC) outcomes is underdeveloped owing to the complexity of the concept and lack of conceptual clarity. A framework conceptualizing outpatient PCC in rheumatology nurse-led clinics has therefore been suggested and operationalized into the PCC instrument for outpatient care in rheumatology (PCCoc/rheum).Objective: The aim of the present study was to test the extent to which the PCCoc/rheum represents the underpinning conceptual outpatient PCC framework, and to assess its measurement properties as applied in nurse-led outpatient rheumatology clinics.Methods: The 24-item PCCoc/rheum was administered to 343 persons with rheumatoid arthritis from six nurse-led outpatient rheumatology clinics. Its measurement properties were tested by Rasch measurement theory.Results: Ninety-two per cent of individuals (n = 316) answered the PCCoc/rheum. Items successfully operationalized a quantitative continuum from lower to higher degrees of perceived PCC. Model fit was generally good, including lack of differential item functioning (DIF), and the PCCoc/rheum was able to separate individuals with a reliability of 0.88. The four response categories worked as intended, with the exception of one item. Item ordering provided general empirical support of a priori expectations, with the exception of three items that were omitted owing to multidimensionality, dysfunctional response categories and unexpected ordering. The 21-item PCCoc/rheum showed good accordance with the conceptual framework, improved fit, functioning response categories and no DIF, and its reliability was 0.86.Conclusion: We found general support for the appropriateness of the PCCoc/rheum as an outcome measure of patient-perceived PCC in nurse-led outpatient rheumatology clinics. While in need of further testing, the 21-item PCCoc/rheum has the potential to evaluate outpatient PCC from a patient perspective.
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| 4. |
- Bala, Sidona Valentina, et al.
(författare)
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Person-centred care in nurse-led outpatient rheumatology clinics : Conceptualization and initial development of a measurement instrument
- 2018
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Ingår i: Musculoskeletal Care. - : Wiley. - 1557-0681 .- 1478-2189. ; 16:2, s. 287-295
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Tidskriftsartikel (refereegranskat)abstract
- Background: Person-centred care (PCC) is considered a key component of effective illness management and high-quality care. However, the PCC concept is underdeveloped in outpatient care. In rheumatology, PCC is considered an unmet need and its further development and evaluation is of high priority. The aim of the present study was to conceptualize and operationalize PCC, in order to develop an instrument for measuring patient-perceived PCC in nurse-led outpatient rheumatology clinics. Methods: A conceptual outpatient PCC framework was developed, based on the experiences of people with rheumatoid arthritis (RA), person-centredness principles and existing PCC frameworks. The resulting framework was operationalized into the PCC instrument for outpatient care in rheumatology (PCCoc/rheum), which was tested for acceptability and content validity among 50 individuals with RA attending a nurse-led outpatient clinic. Results: The conceptual framework focuses on the meeting between the person with RA and the nurse, and comprises five interrelated domains: social environment, personalization, shared decision-making, empowerment and communication. Operationalization of the domains into a pool of items generated a preliminary PCCoc/rheum version, which was completed in a mean (standard deviation) of 5.3 (2.5) min. Respondents found items easy to understand (77%) and relevant (93%). The Content Validity Index of the PCCoc/rheum was 0.94 (item level range, 0.87-1.0). About 80% of respondents considered some items redundant. Based on these results, the PCCoc/rheum was revised into a 24-item questionnaire. Conclusions: A conceptual outpatient PCC framework and a 24-item questionnaire intended to measure PCC in nurse-led outpatient rheumatology clinics were developed. The extent to which the questionnaire represents a measurement instrument remains to be tested.
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| 5. |
- Bala, Sidona-Valentina, et al.
(författare)
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The experience of care at nurse-led rheumatology clinics
- 2012
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Ingår i: Musculoskeletal Care. - : Wiley. - 1478-2189 .- 1557-0681. ; 10:4, s. 202-211
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: To describe how people with rheumatoid arthritis (RA) experience the care provided by Swedish nurse-led rheumatology outpatient clinics.METHODS: Eighteen adult people with a diagnosis of RA who had had at least three documented contact sessions with a nurse-led clinic were interviewed. The interviews were analysed with qualitative content analysis.RESULTS: Care was expressed in three categories: social environment, professional approach and value-adding measures. A social environment including a warm encounter, a familial atmosphere and pleasant premises was desired and contributed to a positive experience of care. The nurses' professional approach was experienced as empathy, knowledge and skill, as well as support. The care was described as person centred and competent, as it was based on the individual's unique experience of his/her disease and needs. The nurses' specialist knowledge of rheumatology and rheumatology care was highly valued. The offered care represented added value for the participants, instilling security, trust, hope and confidence. It was perceived as facilitating daily life and creating positive emotions. The nurse-led clinics were reported to be easily accessible and provided continuity of the care. These features were presented as fundamental guarantees for health care safety.CONCLUSION: The experiences emphasized the need for a holistic approach to care. In this process, the organization of care and the role and skills of the nurse should be focused on the individual's needs and perspectives. The social environment, professional approach and value-adding measures are particularly relevant for optimal care at nurse-led rheumatology outpatient clinics.
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| 6. |
- Gasser, Fredrik, et al.
(författare)
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Conceptual and empirical item hierarchies of person-centred outpatient care
- 2024
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Konferensbidrag (populärvet., debatt m.m.)abstract
- Introduction : The Person-Centred Care instrument for outpatient care (PCCoc) is a 36-item patient-reported experience measure with 4 ordered response categories, that aims to capture the degree of perceived person-centred care (PCC) from a patient perspective among persons with long-term conditions. The PCCoc is based on a framework that conceptualises outpatient PCC from lower to higher levels of perceived PCC, from personalization via shared decision-making to empowerment, where 35 of the PCCoc items are a part of the framework´s hierarchy. This study investigates to what extent empirical item responses are consistent with the hierarchical PCCoc conceptual framework among persons with long-term conditions in outpatient care. Methods : PCCoc data (322 responses) from persons with long-term psychiatric, cardiological, rheumatological or neurological conditions were analysed. The Rasch measurement model (RMM) was used to evaluate model fit and the empirical item ordering. Correspondence between the empirical and conceptually expected item hierarchies was assessed graphically and using the polyserial correlation between RMM derived item locations and their a-priori expected rank order. Result : Two items showed clear misfit to the RMM (fit residuals >4.9). The polyserial correlation between empirical item locations and the expected rank order using all 35 PCCoc items was 0.64; after removing the 2 misfitting items it was 0.71. In addition, subtests (i.e., testlets consisting of a combination of all items belonging to the respective hierarchical domain) were created to account for any local dependency. Subtest locations on the hierarchical continuum indicated good correspondence between empirical data and the conceptual hierarchy, when based on 35 as well as 33 items. Both subtests had a polyserial correlation of 0.99 between testlet locations and the expected rank order. Conclusion : The observed correspondence between empirical data and the conceptual framework indicates that the PCCoc reflects the underlying framework, and therefore can be a valuable instrument to support targeted PCC-promoting interventions.
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| 7. |
- Gasser, Fredrik, et al.
(författare)
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Further development and evaluation of a questionnaire targeting person-centred outpatient care for persons with long-term conditions
- 2023
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Ingår i: Journal of Patient-Reported Outcomes. - : Springer International Publishing AG. - 2509-8020. ; 7:1, s. 1-10
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Tidskriftsartikel (refereegranskat)abstract
- AIM: To further develop the Person-Centred Care instrument for outpatient care (PCCoc), evaluate its user-friendliness and content validity, and to explore its basic psychometric properties in various outpatient settings for adults with long-term conditions. BACKGROUND: Person-centred care (PCC) has been identified as a key factor to provide high-quality care. However, there is still a lack of instruments that are based on a clearly defined framework for PCC for persons with long-term conditions in an outpatient context. The PCCoc is a patient-reported experience measure under development aiming to fill this gap. METHODS: First, the 35-item PCCoc was reviewed and further developed in collaboration with a user-council. Second, the revised 36-item PCCoc was tested among persons receiving outpatient care for various long-term conditions. A total of 179 persons with long-term conditions from four different specialties participated in the study. User-friendliness and content validity were assessed through structured interviews and relevance ratings of each item. Content validity index (CVI) for individual items (I-CVI) and for the overall scale (S-CVI) were calculated, and basic psychometric properties of the PCCoc using classical test theory were explored. RESULTS: It took a median of 8 min for participants to complete the PCCoc. The majority found items easy to understand, response categories distinct and that no important areas were missing. Results from the CVI analyses suggested that participants found the content of the PCCoc relevant (I-CVI range 0.82-1, S-CVI = 0.95). All psychometric properties examined were satisfactory (e.g., item-total correlations, 0.45-0.75; Cronbach's alpha, 0.96; test-retest stability, 0.83). CONCLUSION: The PCCoc was considered user-friendly and relevant by the intended users, and its psychometric properties were satisfactory. This implies that the PCCoc can be a valuable instrument for evaluating and developing PCC in outpatient care for persons with long-term conditions. However, further studies of the PCCoc are needed to establish its measurement properties in various outpatient settings.
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| 8. |
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| 9. |
- Olsson, Mia, et al.
(författare)
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Evaluating person-centered care in neurological outpatient care : a mixed-methods content validity study
- 2024
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Ingår i: BMC Nursing. - : BioMed Central Ltd.. - 1472-6955. ; 23:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Person-centered care (PCC) is gaining increased attention. PCC concerns the whole person behind the disease and can improve care for people with long-term conditions such as multiple sclerosis (MS) and Parkinson’s disease (PD). However, there is a lack of tools to assess PCC from the patients’ perspective, particularly in outpatient care. The Person-Centered Care instrument for outpatient care (PCCoc) is an instrument under development with the intention to fill this gap. The aim of this study was to test the user-friendliness and content validity of the PCCoc as experienced by persons with MS and PD in neurological outpatient care. Methods: Twenty persons with MS or PD completed the 35-item PCCoc followed by an interview regarding the instrument’s intelligibility and ease of use to assess its user-friendliness. Participants then rated the relevance of each item. These ratings were used to calculate the content validity index (CVI) for individual items (I-CVI) and for the overall scale (S-CVI). Results: It took a median of 5 min for participants to complete the PCCoc. Instrument instructions were found clear, items easy to understand, and response categories distinct. No important missing areas were reported. I-CVI values ranged between 0.75 and 1, and S-CVI was 0.96. Conclusions: We found support for the user-friendliness and content validity of the PCCoc among persons with MS and PD, suggesting that the PCCoc can be useful for evaluating and developing PCC in neurological outpatient care. Further testing in broader contexts, including psychometric testing, is warranted to establish its usefulness.
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