Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review
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Bui AL, Horwich TB, Fonarow GC (2011) Epidemiology and risk profile of heart failure. Nat Rev Cardiol 8(1):30–41
Pulignano G et al (2016) Atrial fibrillation, cognitive impairment, frailty and disability in older heart failure patients. J Cardiovasc Med (Hagerstown) 17(8):616–623
Lum HD et al (2016) Burdensome physical and depressive symptoms predict heart failure-specific health status over one year. J Pain Symptom Manag 51(6):963–970
Lainscak M et al (2011) Self-care management of heart failure: practical recommendations from the patient Care Committee of the Heart Failure Association of the European Society of Cardiology. Eur J Heart Fail 13(2):115–126
Riegel B et al (2009) State of the science: promoting self-care in persons with heart failure: a scientific statement from the American Heart Association. Circulation 120(12):1141–1163
Institute of Medicine (2014) Dying in America: improving quality and honoring individual preferences near the end of life. Washington, DC
Institute of Medicine (2012) Living well with chronic illness: a call for public health action. Washington, DC
Institute of Medicine (2008) Retooling for an aging America: building the health care workforce. Washington, DC.
National Academies of Sciences, E., and Medicine (2016) In: Schulz R, Eden J (eds) Families caring for an aging America. The National Academies Press, Washington, DC
National Consensus Project (2013) Clinical practice guidelines for quality palliative care. Pittsburgh, PA
Braun LT, et al. (2016) Palliative care and cardiovascular disease and stroke: a policy statement from the American Heart Association/American Stroke Association. Circulation
Kang X, Li Z, Nolan MT (2011) Informal caregivers' experiences of caring for patients with chronic heart failure: systematic review and metasynthesis of qualitative studies. J Cardiovasc Nurs 26(5):386–394
Hooker SA et al (2015) The impact of relationship quality on health-related outcomes in heart failure patients and informal family caregivers: an integrative review. J Cardiovasc Nurs 30(4 Suppl 1):S52–S63
Doherty LC, Fitzsimons D, McIlfatrick SJ (2016) Carers’ needs in advanced heart failure: a systematic narrative review. Eur J Cardiovasc Nurs 15(4):203–212
Strömberg A, Luttik ML (2015) Burden of caring: risks and consequences imposed on caregivers of those living and dying with advanced heart failure. Curr Opin Support Palliat Care 9(1):26–30
Whittingham K, Barnes S, Gardiner C (2013) Tools to measure quality of life and carer burden in informal carers of heart failure patients: a narrative review. Palliat Med 27(7):596–607
Clark AM et al (2014) Determinants of effective heart failure self-care: a systematic review of patients' and caregivers' perceptions. Heart 100(9):716–721
Buck HG et al (2015) Caregivers' contributions to heart failure self-care: a systematic review. Eur J Cardiovasc Nurs 14(1):79–89
Dunbar SB et al (2008) Family influences on heart failure self-care and outcomes. J Cardiovasc Nurs 23(3):258–265
Magid M et al (2016) The perceptions of important elements of caregiving for a left ventricular assist device patient: a qualitative meta-synthesis. J Cardiovasc Nurs 31(3):215–225
Dixon-Woods M et al (2005) Synthesising qualitative and quantitative evidence: a review of possible methods. J Health Serv Res Policy 10(1):45–53
Aggarwal B et al (2015) Factors associated with medication adherence among heart failure patients and their caregivers. J Nurs Educ Pract 5(3):22–27
Ågren S et al (2011) The influence of chronic heart failure in patient-partner dyads—a comparative study addressing issues of health-related quality of life. J Cardiovasc Nurs 26(1):65–73
Agren S, Evangelista L, Stromberg A (2010) Do partners of patients with chronic heart failure experience caregiver burden? Eur J Cardiovasc Nurs 9(4):254–262
Ågren S et al (2012) Dyads affected by chronic heart failure: a randomized study evaluating effects of education and psychosocial support to patients with heart failure and their partners. J Card Fail 18(5):359–366
Ågren S et al (2015) Caregiving tasks and caregiver burden; effects of an psycho-educational intervention in partners of patients with post-operative heart failure. Heart Lung 44(4):270–275
Akbarin M, Aarts C (2013) Being a close relative of a patient with a left ventricular assist device. Eur J Cardiovasc Nurs 12(1):64–68
Aldred H, Gott M, Gariballa S (2005) Advanced heart failure: impact on older patients and informal carers. J Adv Nurs 49(2):116–124
Annema C, Luttik ML, Jaarsma T (2009) Reasons for readmission in heart failure: perspectives of patients, caregivers, cardiologists, and heart failure nurses. Heart Lung 38(5):427–434
Bahrami M et al (2014) Informational needs and related problems of family caregivers of heart failure patients: a qualitative study. J Educ Health Promot 3:113
Bahrami M et al (2014) Caregiver burden among Iranian heart failure family caregivers: a descriptive, exploratory, qualitative study. Iran J Nurs Midwifery Res 19(1):56–63
Baker K et al (2010) Caregiving for patients requiring left ventricular assistance device support. Heart Lung 39(3):196–200
Barber J, Leslie G (2015) A simple education tool for ventricular assist device patients and their caregivers. J Cardiovasc Nurs 30(3):E1–E10
Barnes S et al (2006) Characteristics and views of family carers of older people with heart failure. Int J Palliat Nurs 12(8):380–389
Bekelman DB et al (2011) Giving voice to patients' and family caregivers’ needs in chronic heart failure: implications for palliative care programs. J Palliat Med 14(12):1317–1324
Bidwell JT et al (2015) Determinants of heart failure self-care maintenance and Management in Patients and Caregivers: a dyadic analysis. Res Nurs Health 38(5):392–402
Blumenthal-Barby JS et al (2015) Assessment of patients’ and caregivers’ informational and decisional needs for left ventricular assist device placement: implications for informed consent and shared decision-making. J Heart Lung Transplant 34(9):1182–1189
Boyd KJ et al (2004) Living with advanced heart failure: a prospective, community based study of patients and their carers. Eur J Heart Fail 6(5):585–591
Boyd KJ et al (2009) Making sure services deliver for people with advanced heart failure: a longitudinal qualitative study of patients, family carers, and health professionals. Palliat Med 23(8):767–776
Brännström M et al (2007) Being a close relative of a person with severe, chronic heart failure in palliative advanced home care—a comfort but also a strain. Scand J Caring Sci 21(3):338–344
Browne S et al (2014) Patient, carer and professional perspectives on barriers and facilitators to quality care in advanced heart failure. PLoS One 9(3):e93288
Buck HG, Kitko L, Hupcey JE (2013) Dyadic heart failure care types: qualitative evidence for a novel typology. J Cardiovasc Nurs 28(6):E37–E46
Buck HG et al (2015) Exploring the relationship of patient and informal caregiver characteristics with heart failure self-care using the actor-partner interdependence model: implications for outpatient palliative care. J Palliat Med 18(12):1026–1032
Buck HG, et al. (2013) Everything they were discussing, we were already doing: hospice heart failure caregivers reflect on a palliative caregiving intervention. J Hosp Palliat Nurs 15(4)
Buck HG, Zambroski CH, Hupcey JE (2013) Assessing the response of patients and spousal/partner caregivers to a new instrument measuring dyadic heart failure care types. Eur J Cardiovasc Nurs 12(2):209–213
Bull MJ, Hansen HE, Gross CR (2000) Predictors of elder and family caregiver satisfaction with discharge planning. J Cardiovasc Nurs 14(3):76–87
Burke RE et al (2014) Caregivers' perceived roles in caring for patients with heart failure: what do clinicians need to know? J Card Fail 20(10):731–738
Burton AM et al (2012) Burden and well-being among a diverse sample of cancer, congestive heart failure, and chronic obstructive pulmonary disease caregivers. J Pain Symptom Manag 44(3):410–420
Chiang LC et al (2012) The effectiveness of telehealth care on caregiver burden, mastery of stress, and family function among family caregivers of heart failure patients: a quasi-experimental study. Int J Nurs Stud 49(10):1230–1242
Chung ML et al (2009) The effects of depressive symptoms and anxiety on quality of life in patients with heart failure and their spouses: testing dyadic dynamics using actor-partner interdependence model. J Psychosom Res 67(1):29–35
Chung ML et al (2010) Predictors of depressive symptoms in caregivers of patients with heart failure. J Cardiovasc Nurs 25(5):411–419
Clark AM et al (2009) Patient and informal caregivers' knowledge of heart failure: necessary but insufficient for effective self-care. Eur J Heart Fail 11(6):617–621
Clark AM et al (2008) The complex nature of informal care in home-based heart failure management. J Adv Nurs 61(4):373–383
Clark PC, Dunbar SB (2003) Family partnership intervention: a guide for a family approach to care of patients with heart failure. AACN Clin Issues 14(4):467–476
Davidson PM et al (2013) The caregiving perspective in heart failure: a population based study. BMC Health Serv Res 13:342
Delgado JF et al (2015) Health-related quality of life, social support, and caregiver burden between six and 120 months after heart transplantation: a Spanish multicenter cross-sectional study. Clin Transpl 29(9):771–780
Dionne-Odom JN, et al. (2014) Translating and testing the ENABLE: CHF-PC concurrent palliative care model for older adults with heart failure and their family caregivers. J Palliat Med
Dracup K et al (2004) Emotional well-being in spouses of patients with advanced heart failure. Heart Lung 33(6):354–361
Egerod I, Overgaard D (2012) Taking a back seat: support and self-preservation in close relatives of patients with left ventricular assist device. Eur J Cardiovasc Nurs 11(4):380–387
Etemadifar S et al (2015) Family caregivers' experiences of caring for patients with heart failure: a descriptive, exploratory qualitative study. J Nurs Res 23(2):153–161
Etemadifar S et al (2014) The effectiveness of a supportive educative group intervention on family caregiver burden of patients with heart failure. Iran J Nurs Midwifery Res 19(3):217–223
Evangelista LS et al (2002) Emotional well-being of heart failure patients and their caregivers. J Card Fail 8(5):300–305
Foebel AD, Hirdes JP, Heckman GA (2012) Caregiver status affects medication adherence among older home care clients with heart failure. Aging Clin Exp Res 24(6):718–721
Freydberg N et al (2010) “If he gives in, he will be gone...”: the influence of work and place on experiences, reactions and self-care of heart failure in rural Canada. Soc Sci Med 70(7):1077–1083
Gure TR et al (2008) Degree of disability and patterns of caregiving among older Americans with congestive heart failure. J Gen Intern Med 23(1):70–76
Harding R et al (2008) Meeting the communication and information needs of chronic heart failure patients. J Pain Symptom Manag 36(2):149–156
Holden RJ, Schubert CC, Mickelson RS (2015) The patient work system: an analysis of self-care performance barriers among elderly heart failure patients and their informal caregivers. Appl Ergon 47:133–150
Hooley PJ, Butler G, Howlett JG (2005) The relationship of quality of life, depression, and caregiver burden in outpatients with congestive heart failure. Congest Heart Fail 11(6):303–310
Hopp FP et al (2014) Go to the hospital or stay at home? A qualitative study of expected hospital decision making among older African Americans with advanced heart failure. J Gerontol Soc Work 57(1):4–23
Hunting G et al (2015) A multi-level qualitative analysis of Telehomecare in Ontario: challenges and opportunities. BMC Health Serv Res 15:544
Hupcey JE et al (2011) Palliative needs of spousal caregivers of patients with heart failure followed at specialized heart failure centers. J Hosp Palliat Nurs 13(3):142–150
Hupcey JE et al (2010) Achieving medical stability: wives’ experiences with heart failure. Clin Nurs Res 19(3):211–229
Hupcey JE, Penrod J, Fogg J (2009) Heart failure and palliative care: implications in practice. J Palliat Med 12(6):531–536
Hwang B, Fleischmann KE, Howie-Esquivel J, Stotts NA, Dracup K (2011) Caregiving for patients with heart failure: impact on patients’ families. Am J Crit Care 20(6):431–441
Hwang B et al (2010) Family caregiving for patients with heart failure: types of care provided and gender differences. J Card Fail 16(5):398–403
Imes CC et al (2011) Descriptive study of partners’ experiences of living with severe heart failure. Heart Lung 40(3):208–216
Jones J et al (2015) The future as a series of transitions: qualitative study of heart failure patients and their informal caregivers. J Gen Intern Med 30(2):176–182
Joo H et al (2015) Cost of informal caregiving for patients with heart failure. Am Heart J 169(1):142–48.e2
Kaholokula JK et al (2008) Pacific Islanders' perspectives on heart failure management. Patient Educ Couns 70(2):281–291
Karmilovich SE (1994) Burden and stress associated with spousal caregiving for individuals with heart failure. Prog Cardiovasc Nurs 9(1):33–38
Kirkpatrick JN et al (2015) Caregivers and left ventricular assist devices as a destination, not a journey. J Card Fail 21(10):806–815
Kitko LA, Hupcey JE (2013) The work of spousal caregiving of older adults with end-stage heart failure. J Gerontol Nurs 39(7):40–47
Kitko LA et al (2013) Caring for a spouse with end-stage heart failure through implantation of a left ventricular assist device as destination therapy. Heart Lung 42(3):195–201
Kitko LA et al (2015) Patient and caregiver incongruence in advanced heart failure. Clin Nurs Res 24(4):388–400
Lee CS et al (2015) Patterns and predictors of patient and caregiver engagement in heart failure care: a multi-level dyadic study. Int J Nurs Stud 52(2):588–597
Levin JB et al (2014) Health literacy and heart failure management in patient-caregiver dyads. J Card Fail 20(10):755–761
Liljeroos M et al (2014) Perceived caring needs in patient-partner dyads affected by heart failure: a qualitative study. J Clin Nurs 23(19–20):2928–2938
Löfvenmark C et al (2013) Evaluation of an educational programme for family members of patients living with heart failure: a randomised controlled trial. J Clin Nurs 22(1–2):115–126
Lum HD et al (2014) Caregiving in heart failure: relationship quality is associated with caregiver benefit finding and caregiver burden. Heart Lung 43(4):306–310
Luttik ML et al (2007) Living with heart failure: partner perspectives. J Cardiovasc Nurs 22(2):131–137
Luttik ML et al (2009) Quality of life in partners of people with congestive heart failure: gender and involvement in care. J Adv Nurs 65(7):1442–1451
Luttik ML et al (2007) Caregiver burden in partners of heart failure patients; limited influence of disease severity. Eur J Heart Fail 9(6–7):695–701
Luttik ML et al (2005) For better and for worse: quality of life impaired in HF patients as well as in their partners. Eur J Cardiovasc Nurs 4(1):11–14
Lyons KS et al (2015) A dyadic approach to managing heart failure with confidence. J Cardiovasc Nurs 30(4 Suppl 1):S64–S71
Malik FA, Gysels M, Higginson IJ (2013) Living with breathlessness: a survey of caregivers of breathless patients with lung cancer or heart failure. Palliat Med 27(7):647–656
Marcuccilli L et al (2014) Family caregivers' inside perspectives: caring for an adult with a left ventricular assist device as a destination therapy. Prog Transplant 24(4):332–340
Mårtensson J et al (2003) Living with heart failure: depression and quality of life in patients and spouses. J Heart Lung Transplant 22(4):460–467
McIlvennan CK et al (2015) Decision-making for destination therapy left ventricular assist devices: implications for caregivers. Circ Cardiovasc Qual Outcomes 8(2):172–178
McMillan SC, et al. (2013) The COPE intervention for caregivers of patients with heart failure: an adapted intervention. J Hosp Palliat Nurs 15(4)
Molloy GJ et al (2006) Effects of an exercise intervention for older heart failure patients on caregiver burden and emotional distress. Eur J Cardiovasc Prev Rehabil 13(3):381–387
Molloy GJ et al (2008) Using the demand-control model of job strain to predict caregiver burden and caregiver satisfaction in the informal caregivers of heart failure patients. Br J Health Psychol 13(Pt 3):401–417
Moore C (2010) The impact of family functioning on caregiver burden among caregivers of veterans with congestive heart failure. J Fam Soc Work 13(5):451–462
Murray SA et al (2004) Exploring the spiritual needs of people dying of lung cancer or heart failure: a prospective qualitative interview study of patients and their carers. Palliat Med 18(1):39–45
Negarandeh R et al (2015) The relationship between perceived life changes and mental health in family caregivers of patients with heart failure who referred to Rajaei Cardiovascular Medical and Research Center, Tehran. Int J Community Based Nurs Midwifery 3(4):283–291
Pattenden JF, Roberts H, Lewin RJ (2007) Living with heart failure; patient and carer perspectives. Eur J Cardiovasc Nurs 6(4):273–279
Piamjariyakul U et al (2013) The feasibility of a telephone coaching program on heart failure home management for family caregivers. Heart Lung 42(1):32–39
Piamjariyakul U et al (2012) Part 2: enhancing heart failure home management: integrated evidence for a new family caregiver educational plan. Appl Nurs Res 25(4):246–250
Piamjariyakul U et al (2012) Part I: heart failure home management: patients, multidisciplinary health care professionals and family caregivers’ perspectives. Appl Nurs Res 25(4):239–245
Piamjariyakul U et al (2015) Caregiver coaching program effect: reducing heart failure patient rehospitalizations and improving caregiver outcomes among African Americans. Heart Lung 44(6):466–473
Piette JD et al (2008) Improving heart failure self-management support by actively engaging out-of-home caregivers: results of a feasibility study. Congest Heart Fail 14(1):12–18
Piette JD et al (2015) A randomized trial of mobile health support for heart failure patients and their informal caregivers: impacts on caregiver-reported outcomes. Med Care 53(8):692–699
Pressler SJ et al (2013) Family caregivers of patients with heart failure: a longitudinal study. J Cardiovasc Nurs 28(5):417–428
Quinn C, Dunbar SB, Higgins M (2010) Heart failure symptom assessment and management: can caregivers serve as proxy? J Cardiovasc Nurs 25(2):142–148
Retrum JH, Nowels CT, Bekelman DB (2013) Patient and caregiver congruence: the importance of dyads in heart failure care. J Cardiovasc Nurs 28(2):129–136
Ross L, Austin J (2015) Spiritual needs and spiritual support preferences of people with end-stage heart failure and their carers: implications for nurse managers. J Nurs Manag 23(1):87–95
Sanford J et al (2011) A process of decision making by caregivers of family members with heart failure. Res Theory Nurs Pract 25(1):55–70
Saunders MM (2012) Perspectives from family caregivers receiving home nursing support: findings from a qualitative study of home care patients with heart failure. Home Healthc Nurse 30(2):82–90
Saunders MM (2010) Working and caregiving: a comparison of employed and unemployed caregivers of older heart failure patients. Holist Nurs Pract 24(1):16–22
Saunders MM (2009) Indicators of health-related quality of life in heart failure family caregivers. J Community Health Nurs 26(4):173–182
Saunders MM (2008) Family caregiver support and hospitalizations of patients with heart failure. Home Healthc Nurse 26(10):624–632
Saunders MM (2008) Factors associated with caregiver burden in heart failure family caregivers. West J Nurs Res 30(8):943–959
Schwarz KA, Dunphy G (2003) An examination of perceived stress in family caregivers of older adults with heart failure. Exp Aging Res 29(2):221–235
Schwarz KA, Elman CS (2003) Identification of factors predictive of hospital readmissions for patients with heart failure. Heart Lung 32(2):88–99
Schwarz KA et al (2008) Telemonitoring of heart failure patients and their caregivers: a pilot randomized controlled trial. Prog Cardiovasc Nurs 23(1):18–26
Scott LD (2000) Caregiving and care receiving among a technologically dependent heart failure population. ANS Adv Nurs Sci 23(2):82–97
Sebern M, Riegel B (2009) Contributions of supportive relationships to heart failure self-care. Eur J Cardiovasc Nurs 8(2):97–104
Sebern MD, Woda A (2012) Shared care dyadic intervention: outcome patterns for heart failure care partners. West J Nurs Res 34(3):289–316
Shahriari M et al (2013) Effects of a family support program on self-care behaviors in patients with congestive heart failure. Iran J Nurs Midwifery Res 18(2):152–157
Small N et al (2009) Dying, death and bereavement: a qualitative study of the views of carers of people with heart failure in the UK. BMC Palliat Care 8:6
Sneed NV, Finch NJ, Leman RB (1994) The impact of device recall on patients and family members of patients with automatic implantable cardioverter defibrillators. Heart Lung 23(4):317–322
Trivedi RB et al (2012) Examining the interrelatedness of patient and spousal stress in heart failure: conceptual model and pilot data. J Cardiovasc Nurs 27(1):24–32
Vellone E et al (2014) Effects of self-care on quality of life in adults with heart failure and their spousal caregivers: testing dyadic dynamics using the actor-partner interdependence model. J Fam Nurs 20(1):120–141
Vellone E et al (2015) The key role of caregiver confidence in the caregiver’s contribution to self-care in adults with heart failure. Eur J Cardiovasc Nurs 14(5):372–381
Walden JA et al (2001) Educational needs of patients with advanced heart failure and their caregivers. J Heart Lung Transplant 20(7):766–769
Whittingham K, Pearce DE (2011) Carer support from a community-based heart specialist nurse service. Br J Nurs 20(21):1388–1393
Wingham J et al (2015) Needs of caregivers in heart failure management: a qualitative study. Chronic Illn 11(4):304–319
Yeh PM, Bull M (2012) Use of the resiliency model of family stress, adjustment and adaptation in the analysis of family caregiver reaction among families of older people with congestive heart failure. Int J Older People Nursing 7(2):117–126
Young LE et al (2010) Families and heart transplantation: reversing the trajectory of end stage heart disease. Can J Cardiovasc Nurs 20(2):6–17
Bozkurt Zincir S et al (2014) Burden and depressive symptoms associated with adult-child caregiving for individuals with heart failure. ScientificWorldJournal 2014:641817
Harding R et al (2008) Meeting the communication and information needs of chronic heart failure patients. J Pain Symptom Manag 36(2):149–156
Bakas T et al (2006) Psychometric testing of the revised 15-item Bakas Caregiving Outcomes Scale. Nurs Res 55(5):346–355
Burton AM et al (2008) Predictors of well-being in bereaved former hospice caregivers: the role of caregiving stressors, appraisals, and social resources. Palliat Support Care 6(2):149–158
Institute N.A.f.C.a.A.P.P (2015) Caregiving in the U.S. Washington DC
Schulz KF et al (2010) CONSORT 2010 statement: updated guidelines for reporting parallel group randomised trials. BMJ 340:c332
Chan AW et al (2013) SPIRIT 2013 statement: defining standard protocol items for clinical trials. Ann Intern Med 158(3):200–207
Hoffmann TC et al (2014) Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. BMJ 348:g1687
National Quality Forum (2006) A national framework and preferred practices for palliative and hospice care quality: a consensus report. National Quality Forum: Washington, DC
Payne S, EAPC Task Force on Family Carers (2010) White paper on improving support for family carers in palliative care: part 1. Eur J Palliat Care 17(5):238–245
Mozaffarian D et al (2016) Heart disease and stroke statistics-2016 update: a report from the American Heart Association. Circulation 133(4):e38–e60
Dionne-Odom JN, et al. (2015) Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: outcomes from the ENABLE III randomized controlled trial. J Clin Oncol
Sun V et al (2015) Effectiveness of an interdisciplinary palliative care intervention for family caregivers in lung cancer. Cancer 121(20):3737–3745
Parikh RB, et al. (2016) Scalable principles of community-based high-value care for seriously ill individuals: diamonds in the rough. Healthc (Amst)
Kamal AH, Dionne-Odom JN (2016) A Blue Ocean strategy for palliative care: focus on family caregivers. J Pain Symptom Manag 51(3):e1–e3
Heidenreich PA et al (2013) Forecasting the impact of heart failure in the United States: a policy statement from the American Heart Association. Circ Heart Fail 6(3):606–619
Roth DL, Fredman L, Haley WE (2015) Informal caregiving and its impact on health: a reappraisal from population-based studies. Gerontologist 55(2):309–319