Hostname: page-component-76fb5796d-9pm4c Total loading time: 0 Render date: 2024-04-29T12:44:39.348Z Has data issue: false hasContentIssue false
  • English
  • Français

Family caregiving for persons with advanced heart failure: An integrative review

Published online by Cambridge University Press:  28 May 2019

Alexandra Rae Hodson ,
Shelley Peacock  and
Lorraine Holtslander
Alexandra Rae Hodson*
Affiliation:
Faculty of Nursing, University of Regina, Saskatoon, Saskatchewan, Canada
Shelley Peacock
Affiliation:
College of Nursing, University of Saskatchewan, Saskatoon, Saskatchewan, Canada
Lorraine Holtslander
Affiliation:
College of Nursing, University of Saskatchewan, Saskatoon, Saskatchewan, Canada University of the Witwatersrand, Johannesburg, South Africa
*
Author for correspondence: Alexandra Rae Hodson, Faculty of Nursing, University of Regina, 111-116 Research Drive, Saskatoon, Saskatchewan, Canada. S7N 3R3. E-mail: alexandra.hodson@uregina.ca
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

The unique needs of caregivers of those with advanced heart failure (HF) are not effectively being met, and reports of physical and mental health challenges are common. The objective is to identify the current state of the literature related to family caregivers of persons with advanced HF, ascertain gaps that require further exploration, and provide preliminary practice recommendations based on the results.

Method

Systematic review of quantitative and qualitative literature. A search of CINAHL, Medline, EMBASE, and PubMed identified 24 articles that met inclusion criteria. Data were analyzed using the constant comparison method and coded. Thematic analysis was used to develop themes.

Result

Sixteen qualitative and seven quantitative studies met inclusion criteria. Analysis of these studies identified six key areas: (1) undertaking a journey in a state of flux, (2) gaining strength, (3) forgetting oneself along the way, (4) seeking out sources of support, (5) preparing for end of life, and (6) finding closure.

Significance of results

The healthcare system currently struggles to meet the care demands of patients with chronic conditions such as advanced HF; as such, informal caregivers are undertaking key roles in the management of symptoms and promotion of the health of those with advanced HF. When caregivers are not adequately prepared for their role, both patient and caregiver well-being is compromised; therefore, a deeper understanding of the caregiving experience could assist in identifying the cause of caregiver anxiety and result in the development of strategies to minimize its effects. Overall, this review will also contribute to improving the current practice when working with caregivers of persons with advanced HF and serve as a basis for development of evidence informed interventions in the future.

Keywords

Advanced heart failureend of lifecaregiver strainfamily caregiverpalliative care
Type
Review Article
Information
Palliative & Supportive Care , Volume 17 , Issue 6 , December 2019 , pp. 720 - 734
Copyright
Copyright © Cambridge University Press 2019 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Adelman, R, Tmanova, L, Delgado, D, et al. (2014) Caregiver burden: A clinical review. Journal of the American Medical Association 311, 1052.Google Scholar
Adler, E, Goldfinger, J, Kalman, J, et al. (2009). Palliative care in the treatment of advanced heart failure. Journal of American Heart Association 120, 2597–2696.Google Scholar
Aldred, H, Gott, M, Gariballa, S (2005) Advanced heart failure: Impact on older patients and informal carers. Journal of Advanced Nursing 49(2), 116–124.Google Scholar
American Heart Association (2012) Decision making in advanced heart failure: A scientific statement from the American Heart Association. Circulation 125, 1928–1952.Google Scholar
Alonso, W, Hupcey, J, Kitko, L (2017) Caregivers’ perceptions of illness severity and end of life service utilization in advanced heart failure. Heart & Lung 46, 35–39.Google Scholar
Braannstrom, M, Ekman, I, Boman, K, 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. Scandinavian Journal of Caring Science 21(3), 338–334.Google Scholar
Brush, S, Budge, D, Alharethi, R, et al. (2010) End-of-life decision making and implementation in recipients of a destination left ventricular assist device. The Journal of Heart and Lung Transplantation 29(12), 1337–1341.Google Scholar
Buck, H, Zambroski, C, Garrison, C, et al. (2013) Everything they were discussing, we were already doing: Hospice heart failure caregivers reflect on a palliative caregiving intervention. Journal of Hospice & Palliative Nurses 15(4), 218–224.Google Scholar
Candy, B, Jones, L, Drake, R, et al. (2011) Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database Systematic Reviews 6.Google Scholar
Cho, J, Ory, MG, Stevens, AB (2016) Socioecological factors and positive aspects of caregiving: Findings from the REACH II intervention. Aging Mental Health 20(11), 1190–1201.Google Scholar
Cubbon, RM, Gale, CP, Kearney, LC, et al. (2011) Changing characteristics and mode of death associated with chronic heart failure caused by left ventricular systolic dysfunction: A study across therapeutic eras. Circulation Heart Failure 4(4), 396–403.Google Scholar
Curtis, J (2008) Palliative and end-of-life care for patients with severe COPD. European Respiratory Journal 32(3), 796–803.Google Scholar
Czaja, SJ, Sabbag, S, Lee, CC, et al. (2016) Concerns about aging and caregiving among middle-aged and older lesbian and gay adults. Aging & Mental Health 20(11), 1107–1118.Google Scholar
Davidson, PM, Abernethy, AP, Newton, PJ, et al. (2013) The caregiving perspective in heart failure: A population based study. BioMed Central Health Services Research 13, 342.Google Scholar
Day, JR, Anderson, RA, Davis, LL (2014) Compassion fatigue in adult daughter caregivers of a parent with dementia. Issues in Mental Health Nursing 35(10), 796–804.Google Scholar
DiGiacomo, M, Lewis, J, Nolan, MT, et al. (2013) Transitioning from caregiving to widowhood. Journal of Pain and Symptom Management 46(6), 817–825.Google Scholar
Doherty, L, Fitzsimons, D, McIlfatrick, S (2016) Carers' needs in advanced heart failure: A systematic narrative review. European Journal of Cardiovascular Nursing 15(4), 203–212.Google Scholar
Dracup, K, Evangelista, L, Doering, L, et al. (2004) Emotional well-being in spouses of patient with advanced heart failure. Heart and Lung 33(6), 354–361.Google Scholar
Faull, C and Taplin, S (2012) Adapting to death, dying, and bereavement. In Handbook of palliative care, 3rd ed. Faull, C, de Caestecker, S, Nicholson, A, et al. (eds.), pp. 81–92. Hoboken, NJ: John Wiley & Sons Inc.Google Scholar
Ghesquiere, A, Haidar, YM, Shear, MK (2011) Risks for complicated grief in family caregivers. Journal of Social Work End Life Palliative Care 7(2–3), 216–240.Google Scholar
Glogowska, M, Simmonds, R, McLachlan, S, et al. (2016) “Sometimes we can't fix things”: A qualitative study of health care professionals' perceptions of end of life care for patients with heart failure. BioMed Central Palliative Care 15, 3.Google Scholar
Glaser, B (1965) The constant comparative method of qualitative analysis. Social Problems 12(4), 436–445.Google Scholar
Grant, J and Graven, L (2018) Problems experienced by informal caregivers of individuals with heart failure: An integrative review. International Journal of Nursing Studies 80, 41–66.Google Scholar
Hammond-Collins, K, Peacock, S, Forbes, D, et al. (2014) In sickness and in health: Comparing the experience of husbands and wives caring for someone with dementia. Perspectives 37(3), 6–13.Google Scholar
Heart and Stroke Foundation (2015) Heart failure. Retrieved from http://www.heartandstroke.com/site/c.ikIQLcMWJtE/b.3484065/k.9224/Heart_failure.htmGoogle Scholar
Howlett, J, Chan, M, Ezekowitz, JA, et al. (2016) The Canadian Cardiovascular Society Heart Failure Companion: Bridging guidelines to your practice. Canadian Journal of Cardiology 32, 296–310.Google Scholar
Howlett, J, Morrin, L, Fortin, M, et al. (2010) End-of-life planning in heart failure: It should be the end of the beginning. Canadian Journal of Cardiology 26(3), 135–141.Google Scholar
Hupcey, J, Fenstermacher, J, Kitko, L, et al. (2010) Achieving medical stability: Wives’ experiences with heart failure. Clinical Nursing Research 19(3), 211–229.Google Scholar
Hupcey, J, Fenstermacher, J, Kitko, L, et al. (2011) Palliative needs of spousal caregivers of patients with heart failure followed up at specialized heart failure centers. Journal of Hospice & Palliative Nurse, 13(3), 142–150.Google Scholar
Hupcey, J, Kitko, L, Alonso, W (2016) Patients' perceptions of illness severity in advanced heart failure. Journal of Hospice & Palliative Nursing 18(2), 110–114.Google Scholar
Johnson, A (2015) Role of district and community nurses in bereavement care: A qualitative study. British Journal of Community Nursing 20(10), 494–501.Google Scholar
Kaasalainen, S, Strachan, P, Brazil, K, et al. (2011) Managing palliative care for adults with advanced heart failure. Canadian Journal of Nursing Research 43(3), 38–57.Google Scholar
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. Journal of Cardiovascular Nursing 26(5), 386–394.Google Scholar
Kitko, LA and Hupcey, JE (2013) The work of spousal caregiving of older adults with endstage heart failure. Journal of Gerontological Nursing 39(7), 40–47.Google Scholar
Kitko, LA, Hupcey, JE, Pinto, C, et al. (2015) Patient and caregiver incongruence in advanced heart failure. Clinical Nurse Researcher 24(4), 388–400.Google Scholar
Lee, J, Sohn, BK, Lee, H, et al. (2016) Impact of behavioral symptoms in dementia patients on depression in daughter and daughter-in-law caregivers. Journal of Womens Health 26, 36–43.Google Scholar
Luttik, M, Jaarsma, T, Veeger, N, et al. (2005) For better and for worse: Quality of life impaired in HF patients as well as their partners. European Journal of Cardiovascular Nursing 4, 11–14.Google Scholar
MacKenzie, M, Buck, H, Meghani, S, et al. (2016) Unique correlates of heart failure and cancer caregiver satisfaction with hospice care. Journal of Pain and Symptom Management 51, 71–78.Google Scholar
Mårtensson, J, Dracup, K, and Fridlund, B (2001) Decisive situations influencing spouses’ support of patients with heart failure: A critical incident technique analysis. Heart & Lung 30(5), 341–350.Google Scholar
McIlvennan, C, Jones, J, Allen, L, et al. (2016) Bereaved caregiver perspectives on the end-of-life experience of patients with a left ventricular assist device. Journal of the American Medical Association: Internal Medicine 176(4), 534–538.Google Scholar
McMillan, S, Small, B, Haley, W, et al. (2013) The COPE intervention for caregivers of patients with heart failure: An adapted intervention. Journal of Hospice & Palliative Nursing 15(4), 196–206.Google Scholar
Molloy, GJ, Johnston, DW, Witham, MD (2005) Family caregiving and congestive heart failure: Review and analysis. The European Journal of Heart Failure 7(4), 592–603.Google Scholar
Murray, S, Kendall, M, Boyd, K, 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. Palliative Medicine 18, 39–45.Google Scholar
National Collaborating Center for Methods and Tools (2008) Quality assessment tool for quantitative studies. Retrieved from http://www.nccmt.ca/resources/search/14Google Scholar
Penning, MJ and Wu, Z (2016) Caregiver stress and mental health: Impact of caregiving relationship and gender. Gerontologist 56(6), 1102–1113.Google Scholar
Pinch, W (1995) Synthesis: Implementing a complex process. Nurse Educator 20, 34–40.Google Scholar
Pinquart, M, and Sorensen, S (2006) Gender differences in caregiver stressors, social resources, and health: An updated meta-analysis. The Journal of Gerontology: Psychological Sciences 61B, P33–P45.Google Scholar
Ponikowski, P, Anker, S, AlHabib, K, et al. (2014) Heart failure: Preventing disease and death worldwide. Retrieved from https://www.escardio.org/static_file/Escardio/Subspecialty/HFA/WHFA-whitepaper-15-May-14.pdfGoogle Scholar
Pressler, SJ, Gradus-Pizlo, I, Chubinski, SD, et al. (2013). Family caregivers of patients with heart failure: A longitudinal study. Journal of Cardiovascular Nursing 28(5), 417–428.Google Scholar
Public Health Agency of Canada (2013) Preventing chronic disease strategic plan 2013–2016: Canadian living healthier and more productive lives. Retrieved from http://publications.gc.ca/site/archivee-archived.html?url=http://publications.gc.ca/collections/collection_2014/aspc-phac/HP35-39-2013-eng.pdfGoogle Scholar
Saunders, M (2012) Perspectives from family caregivers receiving home nursing support. Home Healthcare Nursing 30(2):82–90.Google Scholar
Scott, L (2000) Caregiving and care receiving among a technologically dependent heart failure population. Advances in Nursing Science 23(2), 82–97.Google Scholar
Scott, L (2001) Technological caregiving: A qualitative perspective. Home Health Care Management & Practice 13(3), 227–235.Google Scholar
Selman, L, Harding, R, Beynon, T, et al. (2007) Improving end-of-life care for patients with chronic heart failure: “Let's hope it'll get better, when I know in my heart of hearts it won't.” Heart 93(8), 963–967.Google Scholar
Shah, S, Carey, I, Harris, T, et al. (2013) The effect of unexpected bereavement on mortality in older couples. American Journal of Public Health 103(6), 1140–1145.Google Scholar
Small, N, Barnes, S, Gott, M, et al. (2009) Dying, death and bereavement: A qualitative study of the views of carers of people with heart failure in the UK. BioMed Central Palliative Care 8, 6.Google Scholar
Stroebe, M, Schut, H, and Stroebe, W (2007) Health outcomes of bereavement. Lancet 370(9603), 1960–1973.Google Scholar
Tan, T and Schneider, M (2009) Humor as a coping strategy for adult-child caregivers of individuals with Alzheimer's disease. Geriatric Nursing 30(6), 397–408.Google Scholar
Thorne, S, Con, A, McGuinness, L, et al. (2004) Health care communication issues in multiple sclerosis: An interpretive description. Qualitative Health Research 14, 5–22.Google Scholar
Torraco, RJ (2005) Writing integrative literature reviews: Guidelines and examples. Human Resource Development Review 4(3), 356–367.Google Scholar
Ume, EP and Evans, BC (2011) Chaos and uncertainty: The post-caregiving transition. Geriatric Nursing 32(4), 288–293.Google Scholar
Walden, J, Dracup, K, Westlake, C, et al. (2001) Educational needs of patients with advanced heart failure and their caregivers. The Journal of Heart and Lung Transplantation 20(7), 766–769.Google Scholar
Whittemore, R and Knafl, K (2005) The integrative review: Updated methodology. Journal of Advanced Nursing 52(5), 546–553.Google Scholar