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Participation in heart failure home-care: Patients’ and partners’ perspectives
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
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 [en]
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: urn:nbn:se:liu:diva-117095DOI: 10.3384/diss.diva-117095ISBN: 978-91-7519-116-4 (print)OAI: oai:DiVA.org:liu-117095DiVA: diva2:805498
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
List of papers
1. Patient participation in patients with heart failure receiving structured home care - a prospective longitudinal study
Open this publication in new window or tab >>Patient participation in patients with heart failure receiving structured home care - a prospective longitudinal study
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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
Keyword
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:nbn:se:liu:diva-114439 (URN)10.1186/s12913-014-0633-y (DOI)000348425700001 ()25519812 (PubMedID)
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
2. Heart failure patients’ descriptions of participation in structured home care
Open this publication in new window or tab >>Heart failure patients’ descriptions of participation in structured home care
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
National Category
Nursing Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:liu:diva-117089 (URN)10.1111/hex.12120 (DOI)000365046700063 ()23961912 (PubMedID)
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
3. Participation in the Care Encounter among Patients with Heart Failure Receiving Home-care
Open this publication in new window or tab >>Participation in the Care Encounter among Patients with Heart Failure Receiving Home-care
2013 (English)Manuscript (preprint) (Other academic)
Abstract [en]

Background Heart failure is a chronic condition that affects patients’ life situation. Living with heart failure 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 homecare. Prerequisites for participation may differ when receiving home-care.

Objective The aim of this study was to identify and describe participation in care encounters during home visits in heart failure home-care.

Participants and setting Seventeen patients diagnosed with heart failure, aged 63-95 years, and ten registered nurses participated. The patients received home-care from three different home-care providers in Sweden.

Methods Data from nineteen home visits was collected through observations and documented by video-recordings. The verbal communication in these video-recordings was transcribed verbatim and complemented with non-verbal communication. Data was analysed using qualitative content analysis, and the video-recordings and transcribed material were analysed in parallel.

Results We identified two themes with three and four categories respectively; (a) Participation in the care encounter is made possible by interaction, including exchange of care-related information, care-related reasoning, and collaboration, and (b) Participation in the care encounter is made possible by an enabling approach, including the patient expresses their own wishes and shows an active interest, and the nurse is committed and invites to a dialogue.

Conclusion Our findings underline that patient participation is multifaceted and that the home-care context shows good potential for patient participation as the care encounters were categorised by interaction and an enabling approach.

National Category
Nursing Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:liu:diva-117093 (URN)
Available from: 2015-04-15 Created: 2015-04-15 Last updated: 2015-04-15Bibliographically approved
4. Exploring partners’ perspectives on participation in heart failure home-care: A mixed method design
Open this publication in new window or tab >>Exploring partners’ perspectives on participation in heart failure home-care: A mixed method design
2017 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 73, no 5, 1208-1219 p.Article in journal (Refereed) Published
Abstract [en]

Previous research has shown that partners are involved in the care of patients with heart failure. The aim of this study was to gain a better understanding of the partners ‘perspectives on participation in the care for patients with heart failure receiving structured home-care. A parallel convergent mixed method design with data from interviews analyzed with content analysis and questionnaires statistically analyzed (n=15). Results were analyzed with regard to whether they were comparable and convergent, expanded the understanding, or were inconsistent. Partners scored that they were satisfied with most aspects of participation, information and contact. Qualitative findings revealed four different aspects of participation; adapting to the caring needs and illness trajectory, mastering caregiving demands, interacting with health care providers, and gaining knowledge to comprehend the health situation. Results showed confirmatory results that were convergent and expanded knowledge that gave a broader understanding of partner participation in this context.

Place, publisher, year, edition, pages
John Wiley & Sons, 2017
Keyword
Caregivers, family, heart failure, home- care, mixed method, participation
National Category
Nursing Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:liu:diva-117094 (URN)10.1111/jan.13216 (DOI)000403110000019 ()27878851 (PubMedID)
Note

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

The previous status of this publication was manuscript

Available from: 2015-04-15 Created: 2015-04-15 Last updated: 2017-06-27Bibliographically approved

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