liu.seSearch for publications in DiVA
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • oxford
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Supportive care for patients with heart failure and their partners: A descriptive and interventional study
Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
2010 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: Having the support of a partner is essential for both health related quality of life and survival in heart failure patients. However, caring for a patient with heart failure may affect the health related quality of life, well‐being and cause a burden for the partner. The partner is expected to be responsible for the care, which may have consequences for the heart failure patient’s long‐term health and well‐being. Further research to determine health related quality of life, well‐being, caregiver burden and needs of partners is warranted as well as studies evaluating interventions targeting patient‐partner dyads.

Aim: The overall aim was to describe how the life situation of patient‐partner dyads was influenced by heart failure and to determine the effects of an intervention of follow‐up with education and psychosocial support for patient‐partner dyads.

Design and methods: The thesis is based on three quantitative studies and one qualitative study. The first two studies were descriptive and included 135 dyads (patient‐partner) (I, II) and the randomised intervention study included a total of 155 dyads (IV). The qualitative study had a grounded theory approach. Thirteen partners were interviewed and data analysed using constant comparative method (III).

Results: Caregiver burden was perceived as moderate in 30% of the partners and the rest experienced a low caregiver burden. The patients’ physical component score of SF‐36, partners’ mental component score of SF‐36 and perceived control explained 39% of the caregiver burden (I). Patients had lower health related quality of life compared to their partners in all dimensions except in the mental health domain of SF‐36 and lower qualityadjusted life year weights compared to their partners. Mental health scores were lower in partners compared to age and gender‐matched references. All other health related quality of life scores and the quality‐adjusted life year weights were comparable between the partners and the reference group. Patients had more depressive symptoms than their partners. There was no difference in the level of perceived control or knowledge about chronic heart failure between patients and partners (II). During grounded theory analysis confirmation was identified as describing the core category of the partners’ individual needs. The core category theoretically binds together three underlying subcategories: security, rest for mind and body, and inner strength. Confirmation facilitated acceptance and improvement of mental and physical health among partners (III). At the three month follow‐up the dyad‐intervention had improved perceived control in patients, but not in the partners. There were no other significant differences in the control and intervention group with regard to the dyads’ health related quality of life and symptoms of depression. There were also no differences in the patients’ self‐care behaviour and partners’ experiences of caregiver burden (IV).

Conclusions and implications: Partners to patients with chronic heart failure are at risk of decreased mental well‐being. One third of the partners experienced a moderate caregiver burden and was therefore at a higher risk of poor mental health and decreased perceived control. During short‐term follow‐up the intervention with education and psychosocial support to dyads (patient‐partner) improved the level of perceived control in the chronic heart failure patient group. By identifying partnersʹ needs for security, rest for mind and body, and inner strength, healthcare professionals can confirm these needs throughout the caring process, from the critical care period and throughout rehabilitation at home. Interventions targeting dyads have been limited in previous research. Partners need to be prepared regarding the disease process, the daily regimen, hopes for the future and responsible care providers. They also need to be confirmed because they are vital to the patients’ recovery. Further, the effects of the intervention study should also include a long‐term follow‐up as well as an evaluation of the health‐economic perspective including direct and indirect costs of care.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press , 2010. , 71 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1181
Keyword [en]
Heart failure, cardiac surgery, caregiver burden, intervention, health related quality of life, nursing
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-56232ISBN: 978-91-7393-406-0 (print)OAI: oai:DiVA.org:liu-56232DiVA: diva2:317309
Public defence
2010-06-03, Berzeliussalen, Universitetssjukhuset, Campus US, Linköpings universitet, Linköping, 09:00 (English)
Opponent
Supervisors
Available from: 2010-05-03 Created: 2010-05-03 Last updated: 2017-07-07Bibliographically approved
List of papers
1. Do partners of patients with chronic heart failure experience caregiver burden?
Open this publication in new window or tab >>Do partners of patients with chronic heart failure experience caregiver burden?
2010 (English)In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 9, no 4, 254-262 p.Article in journal (Refereed) Published
Abstract [en]

Aim: To describe the levels and identify independent predictors of caregiver burden in partners of patients with heart failure.

Background: Care and support from a partner are important for the well-being of patients with heart failure and may potentially delay disease progression. However, caregiving may be associated with burden and stress and it is therefore important to understand which factors that influence caregiver burden. Theoretical models of caregiving describe the concept of burden as an outcome variable, including decreased well-being and health.

Methods: Data for this descriptive cross sectional study were collected between January 2005 and September 2008. The dependent variable consisted of the Caregiver Burden Scale total score index. Socio-demographic and clinical characteristics, health-related quality of life, symptoms of depression, perceived control, and knowledge on heart failure were included in a regression analysis to determine independent predictors of caregiver burden.

Results: The 135 partners had a mean-age of 69 years and 75% were females. Caregiver burden was perceived as medium in 30% of the partners. The patients’ Physical component score of SF-36 (p< 0.001), partners’ Mental component score of SF-36 (p< 0.001) and perceived control (p<0.01) accounted for 39% of the variance in caregiver burden.

Conclusion: Caregiver burden was lower when the mental health of the partner and the physical health of the patient were better and the partner experienced higher control over the heart disease. A partner-centered approach to educate and support partners of patients with heart failure is essential to improve the life situation for patient-partner dyads.

Place, publisher, year, edition, pages
Amsterdam, Netherlands: Elsevier, 2010
Keyword
Caregiver burden, depression, health-related quality of life, heart failure, partner, nursing 1
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-56227 (URN)10.1016/j.ejcnurse.2010.03.001 (DOI)000284683700009 ()
Available from: 2010-05-03 Created: 2010-05-03 Last updated: 2017-12-12Bibliographically approved
2. The influence of chronic heart failure in patient-partner dyads: a comparative study addressing issues of health-related quality of life
Open this publication in new window or tab >>The influence of chronic heart failure in patient-partner dyads: a comparative study addressing issues of health-related quality of life
2011 (English)In: Journal of Cardiovascular Nursing, ISSN 0889-4655, E-ISSN 1550-5049, Vol. 26, no 1, 65-73 p.Article in journal (Refereed) Published
Abstract [en]

Background: Patients with chronic heart failure (HF) and their partners face many challenges associated with heart disease. High social support in a close relationship has been found to improve survival in patients with HF. However, caring for a patient with HF may have negative effects on the health-related quality of life (HRQOL) of the partner responsible for the care. The main focus in health care is still on improving the patients’ HRQOL, but the awareness of partners’ and families’ role and situation is increasing. Therefore further studies are needed to clarify these issues and the importance of partners in relation to HRQOL of patients with HF.

Objectives: To describe and compare HRQOL, quality-adjusted life year (QALY) weights, symptoms of depression, perceived control and knowledge in patients with chronic HF and their partners and to compare HRQOL and QALY weights in the partners with an age- and gender-matched group.

Methods: Data was collected from 135 patient-partner dyads at two Swedish hospitals. Data on the reference group was collected from the same region.

Results: Patients had lower HRQOL in all dimensions (p < 0.001) except in the mental health domain and lower QALY weights compared to their partners (p < 0.001). Mental health scores were lower in partners compared to the age and gender-matched references (p < 0.001). All other HRQOL scores and the QALY weights were comparable between partners and reference group. Patients had more depressive symptoms than their partners (p < 0.001). There was no difference in the level of perceived control or knowledge about chronic HF between patients and partners.

Conclusion: Being a partner to a patient with chronic HF markedly affects the mental aspect of HRQOL. Interventions focusing on education and psychosocial support may potentially promote effective coping in partners and enhance their ability to support the patient.

Place, publisher, year, edition, pages
Aspen Publishers, 2011
Keyword
Heart failure, partner, health-related quality of life, quality-adjusted life year, knowledge
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-56228 (URN)10.1097/JCN.0b013e3181ec0281 (DOI)000285138300015 ()
Available from: 2010-05-03 Created: 2010-05-03 Last updated: 2017-12-12
3. Addressing spouses unique needs after cardiac surgery when recovery is complicated by heart failure
Open this publication in new window or tab >>Addressing spouses unique needs after cardiac surgery when recovery is complicated by heart failure
Show others...
2009 (English)In: HEART and LUNG, ISSN 0147-9563, Vol. 38, no 4, 284-291 p.Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Cardiac surgery places extensive stress on spouses who often are more worried than the patients themselves. Spouses can experience difficult and demanding situations when the partner becomes critically ill.

OBJECTIVES: To identify, describe, and conceptualize the individual needs of spouses of patients with complications of heart failure after cardiac surgery.

METHODS: Grounded theory using a mix of systematic coding, data analysis, and theoretical sampling was performed. Spouses, 10 women and 3 men between 39 and 85 years, were interviewed.

RESULTS: During analysis, the core category of confirmation was identified as describing the individual needs of the spouses. The core category theoretically binds together three underlying subcategories: security, rest for mind and body, and inner strength. Confirmation facilitated acceptance and improvement of mental and physical health among spouses.

CONCLUSIONS: By identifying spouses needs for security, rest for mind and body, and inner strength, health care professionals can confirm these needs throughout the caring process, from the critical care period and throughout rehabilitation at home. Interventions to confirm spouses needs are important because they are vital to the patients recovery.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-20176 (URN)10.1016/j.hrtlng.2008.10.002 (DOI)
Available from: 2009-09-01 Created: 2009-08-31 Last updated: 2013-09-03Bibliographically approved
4. Dyads affected by chronic heart failure: a randomised study evaluating effects of education and psychosocial support to patients and their partners
Open this publication in new window or tab >>Dyads affected by chronic heart failure: a randomised study evaluating effects of education and psychosocial support to patients and their partners
2012 (English)In: Journal of Cardiac Failure, ISSN 1071-9164, E-ISSN 1532-8414, Vol. 18, no 5, 359-366 p.Article in journal (Refereed) Published
Abstract [en]

Background: Chronic heart failure (HF) may cause great suffering for both patients and their partners. High marital quality with sufficient emotional support has been found to influence long-term survival in patients with chronic HF. However, emotional reactions of burden, stress and depression have been found to be associated with the partner’s new role. Psychosocial support, and patients-partner education is usually not included in standard chronic HF care despite recommendations in international guidelines.

Aim: To evaluate the effects of an integrated dyad care programme with education and psychosocial support to patients with chronic HF and their partners during a post-discharge period of 3 months after acute deterioration of chronic HF.

Methods: A randomised, controlled design with a follow up assessment after 3 months was used. The dyads in the control group received care as usual. The experimental group participated in an integrated care intervention, delivered in three modules through nurse-led face-to-face counselling, a computer-based CD-ROM program and other written teaching materials.

Results: The intervention improved perceived control (P<0.05) in patients, but not in the partners. There were no other significant differences between the groups with regard to the dyads’ health related quality of life and depressive symptoms, patients’ self-care behaviour and partners’ experiences of caregiver burden.

Conclusion: This is the first major randomised study evaluating a programme focusing on the development of problem solving skills to assist the dyads in managing heart failure. The intervention significantly improved the level of perceived control in the patient group.

Keyword
Chronic heart failure, family, perceived control, quality of life, intervention, nursing
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-56231 (URN)10.1016/j.cardfail.2012.01.014 (DOI)000304078700002 ()
Note
funding agencies|Linkoping University||Swedish Research Council||Swedish Institute for Health Sciences||Heart and Lung Foundation||Heart and Lung Disease National Association||Lions Research Foundation||Health Sciences Centre||Available from: 2010-05-03 Created: 2010-05-03 Last updated: 2017-12-12Bibliographically approved

Open Access in DiVA

Supportive care for patients with heart failure and their partners : A descriptive and interventional study(668 kB)3404 downloads
File information
File name FULLTEXT01.pdfFile size 668 kBChecksum SHA-512
4d48e5acbb26a800f3da9cdd56095450246a990c3732c5ad8b234b4ada8486b0ba08f97419b73997dd5a252efee0da10ecedb66c1b3d1fbc221d03f0f552c469
Type fulltextMimetype application/pdf
Cover(101 kB)35 downloads
File information
File name COVER01.pdfFile size 101 kBChecksum SHA-512
c5de22343c0c24852d0d65e50af03443f2bb1b7684e3edcc7833eb3323e28c2ef489f041da899675e8cafe4e8415f1eac8c310a4de79976816608e948c1aee08
Type coverMimetype application/pdf

Authority records BETA

Ågren, Susanna

Search in DiVA

By author/editor
Ågren, Susanna
By organisation
Nursing ScienceFaculty of Health Sciences
Medical and Health Sciences

Search outside of DiVA

GoogleGoogle Scholar
Total: 3404 downloads
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

isbn
urn-nbn

Altmetric score

isbn
urn-nbn
Total: 3311 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • oxford
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf