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Special Topic: Caregiving

Caregiving in Heart Failure

Chung, Misook L. PhD, RN, FAHA, FAAN

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The Journal of Cardiovascular Nursing: 5/6 2020 - Volume 35 - Issue 3 - p 229-230
doi: 10.1097/JCN.0000000000000696
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Heart failure (HF) affects the lives of patients as well as their family members, who are a fundamental source of support for patients. During the last 2 decades, researchers have increasingly given attention to caregivers of patients with HF worldwide. In 2014, the National Institute of Nursing Research addressed the significance of the science of caregiving.1 Since then, each year about 100 articles related to caregiving in HF have been published by researchers worldwide. In this special caregiving issue of the Journal of Cardiovascular Nursing, we selected 7 articles that address unique gaps in caregiving science in HF globally from Italy, China, Taiwan, Jordan, Canada, and the United States.

In the science of caregiving in HF, one primary focus of researchers is accumulating evidence about how caregivers contribute to the outcomes of patients with HF. The contribution of family caregivers is evident in improving patient HF management by supporting direct and indirect self-care activities2 and improving clinical outcomes, including reducing readmission and mortality for patients with HF.3,4 Evidence of the caregiver contribution is limited for vulnerable patients with HF who are older and have cognitive impairment or multiple comorbidities. Dr Agarwal, in this special issue, presents findings of the association between cognitive impairment and 30-day readmission in 232 older (>70 years) patients with HF in America. The authors also present the effects of education for family caregivers at discharge on reducing patient readmission. By creating a practical system for family caregivers to engage in discharge education, the authors demonstrate a reduction in risk of readmission in vulnerable patients with HF. Dr Tulloch et al describe the development of a comprehensive support resource for informal caregivers at patient discharge at the University of Ottawa Heart Institute, Canada, and discuss the challenges and their recommendations for developing such programs elsewhere. Healthcare providers should provide adequate information on HF management to meet the need of patients and caregivers. Dr Ashour et al, in this special issue, examined perceived learning needs among patients with HF, caregivers, and nurses in Jordan and present intriguing findings of discrepancies in the level of importance of information.

Despite evidence of the importance of caregiver contributions to the outcomes of patients,2 unfortunately many family caregivers are not knowledgeable about HF management and are unprepared to provide such care when they step into the caregiving role. Commonly, family members who are closer to the patient (eg, spouse or partner) or are simply available become primary caregivers. Lack of training and education or poor health literacy can be a challenge to family caregivers in providing physical and emotional support to patients. An ongoing issue in the science of caregiving in HF is whether caregiver qualifications to provide care influence the outcomes of patients with HF. Caregiver preparedness, which is defined as the ability to take on both the physical and emotional needs of the care recipients, has been associated with outcomes of caregivers in other chronic diseases, but not in HF. In this special issue, Dr Vellone and his colleagues present findings of how caregiver preparedness influences caregiver contributions to patients' self-care and whether caregivers' confidence mediates the association in a secondary data analysis of 323 caregivers of patients with HF in Italy. Researchers also report difficulty in assessing and quantifying caregivers' contributions due to the limited availability of reliable and valid instruments. Dr Vellone and his colleagues developed the Caregiver Contribution to Self-Care of HF Index in 2013.5 In this caregiving issue, Dr Vellone and his colleagues present the results of testing the psychometric properties of the second version of the Caregiver Contribution to Self-Care of HF Index (29 items). The uniqueness of this version is that the Situation-Specific Theory of Caregiver Contribution to HF Self-care drove the item modification.

There is substantial research demonstrating that family caregivers commonly report a sense of burden and emotional distress associated with caregiving responsibility.6,7 Dr Fan et al, in this special issue, add findings of the associations between the caregivers' reaction to caregiving in HF and their psychological distress (ie, depressive symptoms and anxiety) in 231 caregivers of patients with HF in China. Researchers also begin to add evidence that such negative experiences of caregiving can contribute to not only their own well-being but also the outcomes of patients. In a recent meta-analysis of 15 studies, Dr Bidwell et al found that only 4 studies reported significant associations between caregiver strain and clinical outcomes (eg, hospitalization, mortality, and time to events) of patients with HF.8 Later, Dr Bidwell et al reported inconsistent evidence for the effects of caregiver strain on clinical events in the secondary analysis of Italian caregivers.9 In this special issue, Dr Bidwell and her colleagues present additional findings of the association of caregivers' strain (assessed using the Bakas Caregiving Outcome Scale) and events of HF hospitalizations/emergency visits or all-cause mortality over 8 months in 92 American patient-caregiver dyads.

There is a growing literature on the science of caregiving worldwide, but there are still gaps that must be addressed for improvement in research in caregiving in HF. The articles in this issue provide potential solutions to improve outcomes of caregivers as well as patients with HF and caregivers.


1. Grady PA, Gullatte M. The 2014 National Nursing Research Roundtable: the science of caregiving. Nurs Outlook. 2014;62(5):362–365.
2. Buck HG, Harkness K, Wion R, et al. Caregivers' contributions to heart failure self-care: a systematic review. Eur J Cardiovasc Nurs. 2015;14(1):79–89.
3. Chung ML, Lennie TA, Riegel B, Wu JR, Dekker RL, Moser DK. Marital status as an independent predictor of event-free survival of patients with heart failure. Am J Crit Care. 2009;18(6):562–570.
4. Dunbar SB, Clark PC, Quinn C, Gary RA, Kaslow NJ. Family influences on heart failure self-care and outcomes. J Cardiovasc Nurs. 2008;23(3):258–265.
5. Vellone E, Riegel B, Cocchieri A, et al. Validity and reliability of the caregiver contribution to self-care of heart failure index. J Cardiovasc Nurs. 2013;28(3):245–255.
6. Chung ML, Pressler SJ, Dunbar SB, Lennie TA, Moser DK. Predictors of depressive symptoms in caregivers of patients with heart failure. J Cardiovasc Nurs. 2010;25(5):411–419.
7. Pinquart M, Sorensen S. Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. J Gerontol B Psychol Sci Soc Sci. 2003;58(2):P112–P128.
8. Bidwell JT, Lyons KS, Lee CS. Caregiver well-being and patient outcomes in heart failure: a meta-analysis. J Cardiovasc Nurs. 2017;32(4):372–382.
9. Bidwell JT, Vellone E, Lyons KS, et al. Caregiver determinants of patient clinical event risk in heart failure. Eur J Cardiovasc Nurs. 2017;16(8):707–714.
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