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  • 1.
    Bala, Sidona-Valentina
    et al.
    Lund University.
    Forslind, Kristina
    Lund University.
    Fridlund, Bengt
    Jönköping University.
    Hagell, Peter
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Measuring person-centred care in nurse-led outpatient rheumatology clinics2018In: Musculoskeletal Care, ISSN 1478-2189, E-ISSN 1557-0681, Vol. 16, no 2, p. 296-304Article in journal (Refereed)
    Abstract [en]

    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.

  • 2.
    Bala, Sidona-Valentina
    et al.
    Lund University.
    Forslind, Kristina
    Lund University.
    Fridlund, Bengt
    Jönköping University.
    Samuelson, Karin
    Lund University.
    Svensson, Björn
    Lund University.
    Hagell, Peter
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Person-centred care in nurse-led outpatient rheumatology clinics: conceptualization and initial development of a measurement instrument2018In: Musculoskeletal Care, ISSN 1478-2189, E-ISSN 1557-0681, Vol. 16, no 2, p. 287-295Article in journal (Refereed)
    Abstract [en]

    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.

  • 3.
    Bala, Sidona-Valentina
    et al.
    Department of Health Sciences, Lund University.
    Samuelson, Karin
    Department of Health Sciences, Lund University.
    Hagell, Peter
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Svensson, Björn
    Section of Rheumatology at the Institution of Clinical Science, Lund University.
    Fridlund, Bengt
    Department of Health Sciences, Lund University.
    Hesselgard, Karin
    Corpporate office, Skåne Regional Council, Malmö.
    The experience of care at nurse-led rheumatology clinics2012In: Musculoskeletal Care, ISSN 1478-2189, E-ISSN 1557-0681, Vol. 10, no 4, p. 202-211Article in journal (Refereed)
    Abstract [en]

    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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