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Heart failure patients’ descriptions of participation in structured home care
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
Department of Care Science, Malmö University, Sweden.
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Heart and Medicine Center, Department of Cardiology in Linköping.ORCID iD: 0000-0002-4259-3671
2015 (English)In: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 18, no 5, 1384-1396 p.Article in journal (Refereed) Published
Abstract [en]

Background

To strengthen the patient's position in health care, patient participation has been decreed in policy documents and legalizations. For patients suffering from heart failure, self-care is an important part of disease management and participation is crucial to succeed with this.

Objective

To examine how heart failure patients receiving structured home care described participation in the care.

Design

Qualitative study.

Setting and participants

Thirteen men and six women, aged between 63 and 90 years, were interviewed. The informants received structured home care at four home care units in Sweden. The interviews were analysed using qualitative content analysis.

Results

Five categories with associated subcategories describing participation in care were identified: communication between patients and health-care professionals (HCPs) including time and space for dialogue and exchange of care-related information, accessibility to care through awareness of the plan for home visits or feasibility to initiate home visits, active involvement in care by engaging in self-care and collaboration with HCPs, trustful relation with HCPs, with confidence in competence and individually adapted care, options for decision making, by making decisions or entrusting decisions.

Conclusions

Patient participation could be strengthened through structured home care. Participation was facilitated when there was a balance between the patient's own preferences to influence care and the health-care professional's actions and values and the organization of care. Barriers to participation could depend on the health-care organization, lack of continuity and confidence in HCPs.

Place, publisher, year, edition, pages
John Wiley & Sons, 2015. Vol. 18, no 5, 1384-1396 p.
National Category
Nursing Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
URN: urn:nbn:se:liu:diva-117089DOI: 10.1111/hex.12120ISI: 000365046700063PubMedID: 23961912OAI: oai:DiVA.org:liu-117089DiVA: diva2:805489
Note

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

Available from: 2015-04-15 Created: 2015-04-15 Last updated: 2017-12-04Bibliographically approved
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, LenaStrömberg, Anna

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Division of Nursing ScienceFaculty of Health SciencesDepartment of Cardiology in Linköping
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