Burden of caring: Risks and consequences imposed on caregivers of those living and dying with advanced heart failure

Current Opinion in Supportive and Palliative Care

Volumn 9, Issue 1, 2015, Pages 26-30

  Strömberg, Anna ^a   Luttika, M L ^a,b  

^a LINKÖPING UNIVERSITY   (Sweden)

^b HANZE UNIVERSITY OF APPLIED SCIENCES   (Netherlands)

Author keywords

Caregiver; Heart failure; Palliative care; Support

Indexed keywords

CAREGIVER; CHRONIC DISEASE; HEART FAILURE; HUMAN; HUMAN RELATION; INTERPERSONAL COMMUNICATION; ORGANIZATION AND MANAGEMENT; PALLIATIVE THERAPY; PATIENT CARE; PSYCHOLOGY; QUALITY OF LIFE; SEVERITY OF ILLNESS INDEX; TERMINAL CARE;

ADVANCE CARE PLANNING; CAREGIVERS; CHRONIC DISEASE; COMMUNICATION; HEART FAILURE; HUMANS; INTERPERSONAL RELATIONS; PALLIATIVE CARE; QUALITY OF LIFE; SEVERITY OF ILLNESS INDEX; TERMINAL CARE;

EID: 84927712725     PISSN: 17514258     EISSN: 17514266     Source Type: Journal    
DOI: 10.1097/SPC.0000000000000111     Document Type: Review

References (38)

1. Stewart S, MacIntyre K, Hole DJ, et al. More 'malignant' than cancer? Five-year survival following a first admission for heart failure. Eur J Heart Fail 2001; 3:315-322.
2. McMurray JJ, Adamopoulos S, Anker SD, et al. ESC guidelines for the diagnosis and treatment of acute and chronic heart failure 2012: The Task Force for the Diagnosis and Treatment of Acute and Chronic Heart Failure 2012 of the European Society of Cardiology. Developed in collaboration with the Heart Failure Association (HFA) of the ESC. Eur J Heart Fail 2012; 14:803-869.
3. Brännstrom M, Ekman I, Norberg A, et al. Living with severe chronic heart failure in palliative advanced home care. Eur J Cardiovasc Nurs 2006; 5:295- 302.
4. Ekman I, Cleland JG, Swedberg K, et al. Symptoms in patients with heart failure are prognostic predictors: insights from COMET. J Card Fail 2005; 11:288-292.
5. Patel H, Shafazand M, Schaufelberger M, Ekman I. Reasons for seeking acute care in chronic heart failure. Eur J Heart Fail 2007; 9 (6-7):702-708.
6. Yu DS, Lee DT, Kwong AN, et al. Living with chronic heart failure: A review of qualitative studies of older people. J Adv Nurs 2008; 61:474-483.
7. Shafazand M, Schaufelberger M, Lappas G, et al. Survival trends in men and women with heart failure of ischaemic and nonischaemic origin: data for the period 2003 from the Swedish Hospital Discharge Registry. Eur Heart J 2009; 30:671-678.
8. Clark AM, Spaling M, Harkness K, et al. Determinants of effective heart failure self-care: A systematic review of patients' and caregivers' perceptions. Heart 2014; 100:716-721. This is an important review determining factors influencing self-care.
9. Buck HG, Harkness K, Wion R, et al. Caregivers' contributions to heart failure self-care: A systematic review. Eur J Cardiovasc Nurs 2014. [Epub ahead of print] This review addresses caregivers' contribution to self-care.
10. Ohman M, Soderberg S. The experiences of close relatives living with a person with serious chronic illness. Qual Health Res 2004; 14:396-410.
11. Rees J, O'Boyle C, MacDonagh R. Quality of life: impact of chronic illness on the partner. J R Soc Med 2001; 94:563-566.
12. Martensson J, Dracup K, Canary C, Fridlund B. Living with heart failure: depression and quality of life in patients and spouses. J Heart Lung Transplant 2003; 22:460-467.
13. Luttik ML, Jaarsma T, Veeger NJ, van Veldhuisen DJ. For better and for worse: quality of life impaired in HF patients as well as in their partners. Eur J Cardiovasc Nurs 2005; 4:11-14.
14. Pihl E, Jacobsson A, Fridlund B, et al. Depression and health-related quality of life in elderly patients suffering from heart failure and their spouses: A comparative study. Eur J Heart Fail 2005; 7:583-589.
15. Agren S, Evangelista L, Strö mberg A. Do partners of patients with chronic heart failure experience caregiver burden? Eur J Cardiovasc Nurs 2010; 9:254-262.
16. Luttik M, Jaarsma T, Veeger N, et al. Caregiver burden in partners of heart failure patients; limited influence of disease severity. Eur J Heart Fail 2007; 9:695-701.
17. Kitko LA, Hupcey JE. The work of spousal caregiving of older adults with endstage heart failure. J Gerontolog Nurs 2013; 39:40-47.
18. Pressler SJ, Gradus-Pizlo I, Chubinski SD, et al. Family caregivers of patients with heart failure: A longitudinal study. J Cardiovasc Nurs 2013; 28:417-428.
19. Jones J, Nowels C, Sudore R, et al. The future as a series of transitions: qualitative study of heart failure patients and their informal caregivers. J Gen Intern Med 2014. [Epub ahead of print].
20. Buck HG, Zambroski CH, Hupcey JE. Assessing the response of patients and spousal/partner caregivers to a new instrument measuring dyadic heart failure care types. Eur J Cardiovasc Nurs 2013; 12:209-213.
21. Buck HG, Kitko L, Hupcey JE. Dyadic heart failure care types: qualitative evidence for a novel typology. J Cardiovasc Nurs 2013; 28:E37-E46. This is a new interesting approach determining a typology of patient-partner dyads.
22. Whittingham K, Barnes S, Gardiner C. Tools to measure quality of life and carer burden in informal carers of heart failure patients: A narrative review. Palliat Med 2013; 27:596-607.
23. Chung ML, Lennie TA, Mudd-Martin G, et al. Depressive symptoms in patients with heart failure negatively affect family caregiver outcomes and quality of life. Eur J Cardiovasc Nurs 2014; pii: 1474515114535329. [Epub ahead of print].
24. Bahrami M, Etemadifar S, Shahriari M, Farsani AK. Caregiver burden among Iranian heart failure family caregivers: A descriptive, exploratory, qualitative study. Iran J Nurs Midwifery Res 2014; 19:56-63.
25. Etemadifar S, Bahrami M, Shahriari M, Farsani AK. The effectiveness of a supportive educative group intervention on family caregiver burden of patients with heart failure. Iran J Nurs Midwifery Res 2014; 19:217-223.
26. Piamjariyakul U, Smith CE, Russell C, et al. The feasibility of a telephone coaching program on heart failure home management for family caregivers. Heart Lung 2013; 42:32-39.
27. Kitko LA, Hupcey JE, Pinto C, Palese M. Patient and caregiver incongruence in advanced heart failure. Clini Nurs Res 2014. This study addresses a new area namely incongruence in patients with heart failure and their careers.
28. Kitko LA, Hupcey JE, Gilchrist JH, Boehmer JP. Caring for a spouse with endstage heart failure through implantation of a left ventricular assist device as destination therapy. Heart Lung 2013; 42:195-201.
29. Lum HD, Lo D, Hooker S, Bekelman DB. Caregiving in heart failure: relationship quality is associated with caregiver benefit finding and caregiver burden. Heart Lung 2014; 43:306-310.
30. Humphrey L, Kulich K, Deschaseaux C, et al. The Caregiver Burden Questionnaire for Heart Failure (CBQ-HF): face and content validity. Health Qual Life Outcomes 2013; 11:84. This is a new caregiver burden instrument.
31. 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; 28:245-255.
32. Davidson PM, Abernethy AP, Newton PJ, et al. The caregiving perspective in heart failure: A population based study. BMC Health Serv Res 2013; 13:342.
33. Browne S, MacDonald S, May CR, et al. Patient, carer and professional perspectives on barriers and facilitators to quality care in advanced heart failure. PLoS One 2014; 9:e93288.
34. Garland EL, Bruce A, Stajduhar K. Exposing barriers to end-of-life communication in heart failure: An integrative review. Can J Cardiovasc Nurs 2013; 23:12-18.
35. Dionne-Odom JN, Kono A, Frost J, et al. Translating and testing the ENABLE: CHF-PC concurrent palliative care model for older adults with heart failure and their family caregivers. J Palliat Med 2014; 17:995-1004.
36. Buck HG, Zambroski CH, Garrison C, McMillan SC. Everything they were discussing, we were already doing': hospice heart failure caregivers reflect on a palliative caregiving intervention. J Hosp Palliat Nurs 2013; 15:218-224.
37. Burke RE, Jones J, Ho PM, Bekelman DB. Caregivers' perceived roles in caring for patients with heart failure: what do clinicians need to know? J Card Fail 2014; 20:731-738.
38. Enguidanos S, Portanova J. The provision of home-based palliative care for those with advanced heart failure. Curr Opin Support Palliat Care 2014; 8:4-8.