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Patient participation in patients with heart failure receiving structured home care - a prospective longitudinal study
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
Malmö University, Sweden; Skåne University Hospital, Sweden.
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences. Linnaeus University, Sweden; Ersta Skondal University of Coll, Sweden; Ersta Hospital, Sweden.
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2014 (English)In: BMC Health Services Research, ISSN 1472-6963, E-ISSN 1472-6963, Vol. 14, no 633Article in journal (Refereed) Published
Abstract [en]

Background: Patient participation is important for improving outcomes, respect for self-determination and legal aspects in care. However, how patients with heart failure view participation and which factors may be associated with participation is not known. The aim of this study was therefore to describe the influence of structured home care on patient participation over time in patients diagnosed with heart failure, and to explore factors associated with participation in care. Methods: The study had a prospective pre-post longitudinal design evaluating the influence of structured home care on participation in patients at four different home care units. Patient participation was measured using 3 scales and 1 single item. Self-care behavior, knowledge, symptoms of depression, socio-demographic and clinical characteristics were measured to explore factors associated with patient participation. Repeated measure ANOVA was used to describe change over time, and stepwise regression analyses were used to explore factors associated with patient participation. Results: One hundred patients receiving structured heart failure home care were included. Mean age was 82 years, 38 were women and 80 were in New York Heart Association functional class III. One aspect of participation, received information, showed a significant change over time and had increased at both six and twelve months. Better self-care behavior was associated with all four scales measuring different aspects of participation. Experiencing lower degree of symptoms of depression, having better knowledge, being of male sex, being of lower age, cohabiting and having home help services were associated with one or two of the four scales measuring different aspects of participation. Conclusion: Patients experienced a fairly high level of satisfaction with participation in care at baseline, and there was a significant improvement over time for participation with regard to received information after being admitted to structured home care. Higher level of patient participation was consistently associated with better self-care behavior. This study shows that patient participation may need to be further focused upon, and that the association with self-care may be interesting to target in future interventions.

Place, publisher, year, edition, pages
BioMed Central , 2014. Vol. 14, no 633
Keyword [en]
Heart failure; Home care services; Multi-disciplinary care; Patient education; Patient involvement; Patient participation; Self-care; Social support
National Category
Clinical Medicine Sociology
Identifiers
URN: urn:nbn:se:liu:diva-114439DOI: 10.1186/s12913-014-0633-yISI: 000348425700001PubMedID: 25519812OAI: oai:DiVA.org:liu-114439DiVA: diva2:791871
Note

Funding Agencies|European Commission [222954]; Linkoping University; Swedish Heart and Lung Association; Medical Research Council of Southeast Sweden; County Council of Ostergotland

Available from: 2015-03-02 Created: 2015-02-20 Last updated: 2017-12-04
In thesis
1. Participation in heart failure home-care: Patients’ and partners’ perspectives
Open this publication in new window or tab >>Participation in heart failure home-care: Patients’ and partners’ perspectives
2015 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Introduction: Patient participation is important for improving outcomes and respecting selfdetermination and legal aspects in care. Heart failure is a chronic condition that puts high demands on self-care and patient participation. Patients often need advanced care due to deterioration of their heart failure symptoms, and one option is to provide care as home-care. There is limited knowledge of how patients with heart failure and their partners view participation in home-care.

Aim: The overall aim of this thesis was to describe different perspectives of participation in structured heart failure home-care among patients with heart failure and their partners.

Methods: All patients in this thesis received structured heart failure home-care, according to a model aiming to facilitate care, where safety, participation, and gaining knowledge about the illness and treatment, are in focus. Study I had a prospective pre-post longitudinal design including 100 patients with heart failure receiving home-care. Data was collected by selfadministered questionnaires. Study II had a descriptive design. Nineteen patients receiving home-care were interviewed, and data was analysed using qualitative content analysis. Study III had a descriptive and explorative design. Data was collected by video-recorded observations of 19 home visits and analysed by qualitative content analysis. Study IV had a parallel convergent mixed-method design including 15 partners of patients receiving structured home-care. Data was collected by interviews and self-administered questionnaires. Datasets were first analysed separately and then together.

Results: Better self-care behaviour was significantly associated with all measured aspects of participation. Participation by received information increased significantly during the 12-month follow-up (I). Patients’ descriptions of participation included communication between patients and health care professionals, access to care, active involvement in care, a trustful relation with health care professionals, and options for decision-making(II). Observed care encounters revealed that participation was made possible by; (i) interaction, including exchange of care-related information, care-related reasoning, and collaboration, (ii) an enabling approach, including the patient expresses own wishes and shows an active interest, and the nurse is committed and invites to a dialogue (III). Partners scored fairly positive for their participation in care and they performed different levels of caregiving tasks. Descriptions of participation included; adapting to the caring needs and illness trajectory, mastering caregiving demands, interacting with care providers, and gaining knowledge to comprehend the health situation. The mixed-method results showed both convergent results and expanded knowledge (IV).

Conclusions: Structured heart failure home-care facilitated participation both for patients and their partners. Patient participation with regard to received information improved significantly after receiving home-care. Aspects of patient participation were consistently associated with better self-care behaviour. Patients’ and partners’ descriptions revealed many aspects of participation, and observed home visits revealed how interaction and an enabling approach underpinned participation.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2015. 81 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1449
Keyword
Heart failure; home-care; involvement; mixed-method design; participation; partner; qualitative content analysis; self-care
National Category
Nursing Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:liu:diva-117095 (URN)10.3384/diss.diva-117095 (DOI)978-91-7519-116-4 (ISBN)
Public defence
2015-05-13, Berzeliussalen, Campus US, LInköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2015-04-15 Created: 2015-04-15 Last updated: 2015-04-30Bibliographically approved

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Näsström, LenaJaarsma, TinyFranzén Årestedt, KristoferStrömberg, Anna
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Division of Nursing ScienceFaculty of Health SciencesDivision of Health, Activity and CareDepartment of Cardiology in Linköping
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