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Patient participation from the patient's preferences, that's what counts
Örebro University, School of Health Sciences.
2018 (English)Doctoral 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.

Place, publisher, year, edition, pages
Örebro: Örebro University , 2018. , p. 95
Series
Örebro Studies in Care Sciences, ISSN 1652-1153 ; 74
Keywords [en]
Patient Participation, Patient Preferences, Measure, Content Analysis, Psychometric Evaluations, Self-Management, Long-Term Conditions
National Category
Other Health Sciences
Identifiers
URN: urn:nbn:se:oru:diva-65314ISBN: 978-91-7529-241-0 (print)OAI: oai:DiVA.org:oru-65314DiVA, id: diva2:1186334
Public defence
2018-05-04, Örebro universitet, Prismahuset, Hörsal 1, Fakultetsgatan 1, Örebro, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2018-02-28 Created: 2018-02-28 Last updated: 2018-04-10Bibliographically approved
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

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Luhr, Kristina

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