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  • 1.
    Eldh, Ann Catrine
    et al.
    Division of Nursing Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden; School of Education, Health and Social Studies, Dalarna University, Falun, Sweden.
    Luhr, Kristina
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Family Medicine Research Centre, Örebro County Council, Örebro, Sweden.
    Ehnfors, Margareta
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    The development and initial validation of a clinical tool for patients' preferences on patient participation: The 4Ps2015In: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 18, no 6, p. 2522-2535Article in journal (Refereed)
    Abstract [en]

    Aims: To report on the development and initial testing of a clinical tool, The Patient Preferences for Patient Participation tool (The 4Ps), which will allow patients to depict, prioritize, and evaluate their participation in health care.

    Background: While patient participation is vital for high quality health care, a common definition incorporating all stakeholders' experience is pending. In order to support participation in health care, a tool for determining patients' preferences on participation is proposed, including opportunities to evaluate participation while considering patient preferences.

    Methods: Exploratory mixed methods studies informed the development of the tool, and descriptive design guided its initial testing. The 4Ps tool was tested with 21 Swedish researcher experts (REs) and patient experts (PEs) with experience of patient participation. Individual Think Aloud interviews were employed to capture experiences of content, response process, and acceptability.

    Results: 'The 4Ps' included three sections for the patient to depict, prioritize, and evaluate participation using 12 items corresponding to 'Having Dialogue', 'Sharing Knowledge', 'Planning', and 'Managing Self-care'. The REs and PEs considered 'The 4Ps' comprehensible, and that all items corresponded to the concept of patient participation. The tool was perceived to facilitate patient participation whilst requiring amendments to content and layout.

    Conclusions: A tool like The 4Ps provides opportunities for patients to depict participation, and thus supports communication and collaboration. Further patient evaluation is needed to understand the conditions for patient participation. While The 4Ps is promising, revision and testing in clinical practice is required.

  • 2.
    Luhr, Kristina
    Örebro University, School of Health Sciences.
    Patient participation from the patient's preferences, that's what counts2018Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Patient participation is a core element in legislation in most western countries today. From the patient’s perspective, patient participation includes respect, equality, sharing of knowledge, joint planning, and self-management. However, participation is not always experienced, and the patient’s experiences and preferences are seldom mapped.

    The general aim of this thesis was to enhance the knowledge on patient participation from the preferences of patients with long-term conditions in outpatient healthcare by evaluating a measure (The Patient Preferences for Patient Participation: the 4Ps) on patient participation and by investigating a self-management programme’s impact on patient participation.

    Qualitative evaluations of the 4Ps included Think Aloud interviews with patient experts (n = 11) and research experts (n = 10) in Study I. Psychometric evaluations were performed in Study II (n = 108) and after amendments in Study III (n = 150). Effects of the self-management programme on patient participation were investigated in a randomised controlled trial with the 4Ps as the outcome measure in Study III (n = 118), and in Study IV were influences investigated qualitatively in nine focus group interviews (n = 36).

    The 4Ps was found to be sufficiently valid and reliable. As measured with the 4Ps, patients with long-term conditions had both set preferences in and experiences of patient participation, regardless of randomised to a self-management programme or not. Qualitatively the programme was found to include patient participation and to influence self-management.

    The use of diverse methods was beneficial and complementary. The sufficiently valid and reliable 4Ps can fil the gap of a measure to map preferences for and experiences of patient participation. Patients with long-term conditions have set preferences for participation. The self-management programme can be applied to influence participation and future responsibilities.

    List of papers
    1. The development and initial validation of a clinical tool for patients' preferences on patient participation: The 4Ps
    Open this publication in new window or tab >>The development and initial validation of a clinical tool for patients' preferences on patient participation: The 4Ps
    2015 (English)In: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 18, no 6, p. 2522-2535Article in journal (Refereed) Published
    Abstract [en]

    Aims: To report on the development and initial testing of a clinical tool, The Patient Preferences for Patient Participation tool (The 4Ps), which will allow patients to depict, prioritize, and evaluate their participation in health care.

    Background: While patient participation is vital for high quality health care, a common definition incorporating all stakeholders' experience is pending. In order to support participation in health care, a tool for determining patients' preferences on participation is proposed, including opportunities to evaluate participation while considering patient preferences.

    Methods: Exploratory mixed methods studies informed the development of the tool, and descriptive design guided its initial testing. The 4Ps tool was tested with 21 Swedish researcher experts (REs) and patient experts (PEs) with experience of patient participation. Individual Think Aloud interviews were employed to capture experiences of content, response process, and acceptability.

    Results: 'The 4Ps' included three sections for the patient to depict, prioritize, and evaluate participation using 12 items corresponding to 'Having Dialogue', 'Sharing Knowledge', 'Planning', and 'Managing Self-care'. The REs and PEs considered 'The 4Ps' comprehensible, and that all items corresponded to the concept of patient participation. The tool was perceived to facilitate patient participation whilst requiring amendments to content and layout.

    Conclusions: A tool like The 4Ps provides opportunities for patients to depict participation, and thus supports communication and collaboration. Further patient evaluation is needed to understand the conditions for patient participation. While The 4Ps is promising, revision and testing in clinical practice is required.

    Place, publisher, year, edition, pages
    Wiley-Blackwell, 2015
    Keywords
    clinical tool, content validity, instrument development, patient participation, qualitative analysis
    National Category
    Nursing
    Research subject
    Caring sciences
    Identifiers
    urn:nbn:se:oru:diva-41155 (URN)10.1111/hex.12221 (DOI)000368250300058 ()24938672 (PubMedID)2-s2.0-84955180179 (Scopus ID)
    Note

    Funding Agencies:

    Capio Research Fund, Sweden

    Family Medicine Research Centre, Örebro county council 

    Available from: 2015-01-14 Created: 2015-01-13 Last updated: 2018-09-05Bibliographically approved
    2. Patient preferences for patient participation: Psychometric evaluation of The 4Ps tool in patients with chronic heart or lung disorders
    Open this publication in new window or tab >>Patient preferences for patient participation: Psychometric evaluation of The 4Ps tool in patients with chronic heart or lung disorders
    2018 (English)In: Nordic journal of nursing research, ISSN 2057-1585, E-ISSN 2057-1593, Vol. 38, no 2, p. 68-76Article in journal (Refereed) Published
    Abstract [en]

    The Patient Preferences for Patient Participation tool (The 4Ps) was developed to aid clinical dialogue and to help patients to 1) depict, 2) prioritise, and 3) evaluate patient participation with 12 pre-set items reiterated in the three sections. An earlier qualitative evaluation of The 4Ps showed promising results. The present study is a psychometric evaluation of The 4Ps in patients with chronic heart or lung disease (n¼108) in primary and outpatient care. Internal scale validity was evaluated using Rasch analysis, and two weeks test–retest reliability of the three sections using kappa/weighted kappa and a prevalence- and bias-adjusted kappa. The 4Ps tool was found to be reasonably valid with a varied reliability. Proposed amendments are rephrasing of two items, and modifications of the rating scale in Section 2. The 4Ps is suggested for use to increase general knowledge of patient participation, but further studies are needed with regards to its implementation.

    Place, publisher, year, edition, pages
    Sage Publications, 2018
    Keywords
    Chronic heart failure, chronic obstructive pulmonary disease, clinical tool, instrument testing, patient participation
    National Category
    Health Sciences Nursing Other Health Sciences
    Identifiers
    urn:nbn:se:oru:diva-66035 (URN)10.1177/2057158517713156 (DOI)
    Available from: 2018-03-23 Created: 2018-03-23 Last updated: 2018-09-07Bibliographically approved
    3. Effects of a self-management program on patient participation in patients with chronic heart failure or chronic obstructive pulmonary disease: a randomised controlled trial
    Open this publication in new window or tab >>Effects of a self-management program on patient participation in patients with chronic heart failure or chronic obstructive pulmonary disease: a randomised controlled trial
    (English)Manuscript (preprint) (Other academic)
    National Category
    Other Health Sciences
    Identifiers
    urn:nbn:se:oru:diva-66492 (URN)
    Available from: 2018-04-10 Created: 2018-04-10 Last updated: 2018-04-10Bibliographically approved
    4. Patient participation during and after a self-management programme in primary healthcare: The experience of patients with chronic obstructive pulmonary disease or chronic heart failure
    Open this publication in new window or tab >>Patient participation during and after a self-management programme in primary healthcare: The experience of patients with chronic obstructive pulmonary disease or chronic heart failure
    2018 (English)In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 101, no 6, p. 1137-1142Article in journal (Refereed) Published
    Abstract [en]

    OBJECTIVE: Patient participation is facilitated by patients' ability to take responsibility for and engage in health issues. Yet, there is limited research as to the promotion of these aspects of patient participation in long-term healthcare interactions. This paper describes patient participation as experienced by patients with chronic obstructive pulmonary disease (COPD) or chronic heart failure (CHF); the aim was to describe if and how a self-management programme in primary healthcare influenced patient participation.

    METHODS: Patients who had participated in a self-management programme were interviewed in nine focus groups (36 patients). Data was analysed using qualitative content analysis.

    RESULTS: Patients described equality in personal interactions, opportunities to share and discuss, and a willingness to share and learn to facilitate patient participation in a self-management programme. Consequently, patient participation was promoted by a match between the individuals' personal traits and the context.

    CONCLUSION: Features facilitating patient participation by means of sharing and assimilating knowledge and insights should be included in self-management programmes and in the care for patients with COPD and CHF.

    PRACTICE IMPLICATIONS: A self-management programme can complement regular primary care regarding enhanced understanding of one's disease and support patient participation and the patient's own resources in self-management.

    Place, publisher, year, edition, pages
    Elsevier, 2018
    Keywords
    Chronic heart failure, Chronic obstructive pulmonary disease, Person-centered care, Patient participation, Self-management programme
    National Category
    Nursing
    Identifiers
    urn:nbn:se:oru:diva-64005 (URN)10.1016/j.pec.2017.12.020 (DOI)000432345000019 ()29290329 (PubMedID)2-s2.0-85039553404 (Scopus ID)
    Note

    Funding Agencies:

    Region Örebro County  

    Uppsala-Örebro Regional Research Council 

    Available from: 2018-01-12 Created: 2018-01-12 Last updated: 2018-09-07Bibliographically approved
  • 3.
    Luhr, Kristina
    et al.
    Örebro University, School of Health Sciences. University Health Care Research Centre.
    Eldh, Ann C.
    Division of Nursing, Department of Medical and Health Sciences, Linköping University, Sweden; Department of Public Health and Caring Sciences, Uppsala University, Sweden.
    Theander, Kersti
    Centre for Clinical Research, County Council of Värmland, Karlstad, Sweden.
    Holmefur, Marie
    Örebro University, School of Health Sciences.
    Effects of a self-management programme on patient participation in patients with chronic heart failure or chronic obstructive pulmonary disease: A randomized controlled trial2019In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 18, no 3, p. 185-193Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Self-management strategies are crucial to patients with long-term conditions and can presumably promote patient participation, given that to patients, patient participation connotes opportunities for self-care (along with being engaged in an exchange of knowledge, a phrasing of joint goals and planning of care). So far, limited attention has been given to what components support self-management and what outcomes can be achieved. An exclusive self-management programme in primary healthcare entailed assessing its influence on patient participation.

    AIM: To describe the effects of a self-management programme on preferences for, and experiences of, patient participation in patients with chronic obstructive pulmonary disease or chronic heart failure.

    METHODS: A randomized controlled trial with a six session intervention programme, including phrasing of individual action plans and group discussions on the patients' issues. The intervention group ( n=59) received standard care and the self-management programme, and the control group ( n=59) received standard care only. Data was collected at baseline and at three months and 12 months after the intervention started, using the Patient Preferences for Patient Participation (the 4Ps) measure.

    RESULTS: No significant differences were found within the groups, or between the groups, in preferences and experiences of patient participation, either in summary score or at an item level.

    CONCLUSION: A self-management group programme led by trained primary healthcare staff in primary care did not serve as means to influence patients' experience of patient participation in the care of their long-term condition. Further studies are needed in regard to what facilitates patient participation in this setting and beyond.

  • 4.
    Luhr, Kristina
    et al.
    Örebro University, School of Health Sciences. University Health Care Research Center, Region Örebro County, Örebro, Sweden.
    Eldh, Ann Catrine
    School of Education, Health and Social Studies, Dalarna University, Falun, Sweden; Department of Medical and Health Sciences, Linköping University, Linköping, Sweden.
    Nilsson, Ulrica
    Örebro University, School of Health Sciences.
    Holmefur, Marie
    Örebro University, School of Health Sciences.
    Patient preferences for patient participation: Psychometric evaluation of The 4Ps tool in patients with chronic heart or lung disorders2018In: Nordic journal of nursing research, ISSN 2057-1585, E-ISSN 2057-1593, Vol. 38, no 2, p. 68-76Article in journal (Refereed)
    Abstract [en]

    The Patient Preferences for Patient Participation tool (The 4Ps) was developed to aid clinical dialogue and to help patients to 1) depict, 2) prioritise, and 3) evaluate patient participation with 12 pre-set items reiterated in the three sections. An earlier qualitative evaluation of The 4Ps showed promising results. The present study is a psychometric evaluation of The 4Ps in patients with chronic heart or lung disease (n¼108) in primary and outpatient care. Internal scale validity was evaluated using Rasch analysis, and two weeks test–retest reliability of the three sections using kappa/weighted kappa and a prevalence- and bias-adjusted kappa. The 4Ps tool was found to be reasonably valid with a varied reliability. Proposed amendments are rephrasing of two items, and modifications of the rating scale in Section 2. The 4Ps is suggested for use to increase general knowledge of patient participation, but further studies are needed with regards to its implementation.

  • 5.
    Luhr, Kristina
    et al.
    Örebro University, School of Health Sciences.
    Eldh, Ann Catrine
    Linköping University, Sweden; Uppsala University, Uppsala, Sweden.
    Theander, Kersti
    Centre for Clinical Research, County Council of Värmland, Karlstad, Sweden.
    Holmefur, Marie
    Örebro University, School of Health Sciences.
    Effects of a self-management program on patient participation in patients with chronic heart failure or chronic obstructive pulmonary disease: a randomised controlled trialManuscript (preprint) (Other academic)
  • 6.
    Luhr, Kristina
    et al.
    Örebro University, School of Health Sciences. University Health Care Research Center, Region Örebro County, Örebro, Sweden.
    Holmefur, Marie
    Örebro University, School of Health Sciences.
    Theander, Kersti
    Centre for Clinical Research, County Council of Värmland, Karlstad, Sweden.
    Eldh, Ann Catrine
    Division of Nursing, Department of Medical and Health Sciences, Linköping University, Linköping, Sweden; Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
    Patient participation during and after a self-management programme in primary healthcare: The experience of patients with chronic obstructive pulmonary disease or chronic heart failure2018In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 101, no 6, p. 1137-1142Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Patient participation is facilitated by patients' ability to take responsibility for and engage in health issues. Yet, there is limited research as to the promotion of these aspects of patient participation in long-term healthcare interactions. This paper describes patient participation as experienced by patients with chronic obstructive pulmonary disease (COPD) or chronic heart failure (CHF); the aim was to describe if and how a self-management programme in primary healthcare influenced patient participation.

    METHODS: Patients who had participated in a self-management programme were interviewed in nine focus groups (36 patients). Data was analysed using qualitative content analysis.

    RESULTS: Patients described equality in personal interactions, opportunities to share and discuss, and a willingness to share and learn to facilitate patient participation in a self-management programme. Consequently, patient participation was promoted by a match between the individuals' personal traits and the context.

    CONCLUSION: Features facilitating patient participation by means of sharing and assimilating knowledge and insights should be included in self-management programmes and in the care for patients with COPD and CHF.

    PRACTICE IMPLICATIONS: A self-management programme can complement regular primary care regarding enhanced understanding of one's disease and support patient participation and the patient's own resources in self-management.

  • 7.
    Theander, Kersti
    et al.
    Department of Nursing, Faculty of Health Science and Technology, Karlstad University, Karlstad, Sweden; Primary Care Research Unit, County Council of Värmland, Karlstad, Sweden.
    Hasselgren, Mikael
    Örebro University, School of Medicine, Örebro University, Sweden. Primary Care Research Unit, County Council of Värmland, Karlstad, Sweden.
    Luhr, Kristina
    Family Medicine Research Centre, Örebro County Council, Örebro, Sweden.
    Eckerblad, Jeanette
    Department of Social and Welfare Studies, Faculty of Health Sciences, Linköping University, Linköping, Sweden.
    Unosson, Mitra
    Department of Social and Welfare Studies, Faculty of Health Sciences, Linköping University, Linköping, Sweden.
    Karlsson, Ingela
    Department of Nursing, Faculty of Health Science and Technology, Karlstad University, Karlstad, Sweden.
    Symptoms and impact of symptoms on function and health in patients with chronic obstructive pulmonary disease and chronic heart failure in primary health care2014In: The International Journal of Chronic Obstructive Pulmonary Disease, ISSN 1176-9106, E-ISSN 1178-2005, Vol. 9, p. 785-794Article in journal (Refereed)
    Abstract [en]

    Background: Patients with chronic obstructive pulmonary disease (COPD) and chronic heart failure (CHF) seem to have several symptoms in common that impact health. However, methodological differences make this difficult to compare.

    Aim: Comparisons of symptoms, impact of symptoms on function and health between patients with COPD and CHF in primary health care (PHC).

    Method: The study is cross sectional, including patients with COPD (n=437) and CHF (n=388), registered in the patient administrative systems of PHC. The patients received specific questionnaires - the Memorial Symptom Assessment Scale, the Medical Research Council dyspnea scale, and the Fatigue Impact Scale - by mail and additional questions about psychological and physical health.

    Results: The mean age was 70 +/- 10 years and 78 +/- 10 years for patients with COPD and CHF respectively (P=0.001). Patients with COPD (n=273) experienced more symptoms (11 +/- 7.5) than the CHF patients (n=211) (10 +/- 7.6). The most prevalent symptoms for patients with COPD were dyspnea, cough, and lack of energy. For patients with CHF, the most prevalent symptoms were dyspnea, lack of energy, and difficulty sleeping. Experience of dyspnea, cough, dry mouth, feeling irritable, worrying, and problems with sexual interest or activity were more common in patients with COPD while the experience of swelling of arms or legs was more common among patients with CHF. When controlling for background characteristics, there were no differences regarding feeling irritable, worrying, and sexual problems. There were no differences in impact of symptoms or health.

    Conclusion: Patients with COPD and CHF seem to experience similar symptoms. There were no differences in how the patients perceived their functioning according to their cardinal symptoms; dyspnea and fatigue, and health. An intervention for both groups of patients to optimize the management of symptoms and improve function is probably more relevant in PHC than focusing on separate diagnosis groups.

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