Hostname: page-component-cd9895bd7-q99xh Total loading time: 0 Render date: 2024-12-27T01:58:35.154Z Has data issue: false hasContentIssue false
  • English
  • Français

Caregiving at the end of life: Perspectives from spousal caregivers and care recipients

Published online by Cambridge University Press:  27 February 2007

SUSAN JO ,
KEVIN BRAZIL ,
LYNNE LOHFELD  and
KATHLEEN WILLISON
SUSAN JO
Affiliation:
St. Joseph's Health System Research Network, Hamilton, Ontario, Canada
KEVIN BRAZIL
Affiliation:
St. Joseph's Health System Research Network, Hamilton, Ontario, Canada Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada Division of Palliative Care, Department of Family Medicine, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada
LYNNE LOHFELD
Affiliation:
Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada
KATHLEEN WILLISON
Affiliation:
Division of Palliative Care, Department of Family Medicine, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada School of Nursing, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada St. Joseph's Healthcare, Hamilton, Ontario, Canada
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective: The purpose of this study is to examine the perspectives of both the spousal caregiver and care recipient on the caregiving experience in home-based palliative care.

Methods: A qualitative research strategy involving home-based face-to-face interviews with older palliative care patients and their spousal caregivers was used to examine the caregiving experience.

Results: Ten spousal caregivers and care recipient dyads participated in the study. Most informal caregivers viewed caregiving as an extension of the family relationship where caregiving responsibilities evolved over time. Spousal caregivers identified many negative reactions to caregiving, such as fatigue or weariness, depression, anger and sadness, financial stresses, and lack of time. Care recipients acknowledged the emotional and financial strain and expressed concern for their spouses. Both caregivers and care recipients were appreciative of home care services although they identified the need for additional services. They also identified difficulties in communication with formal providers and poor coordination of care among the various services. Both caregivers and care recipients disclosed some challenges with informal supports, but on the whole felt that their presence was positive. Additional positive aspects of caregiving reported by spouses included strengthened relationship with their spouse and discovering emotional strength and physical abilities in managing care.

Significance of results: Health care and social service professionals need to recognize and understand both caregiver and care recipient perspectives if they are to successfully meet the needs of both members of the dyad.

Keywords

End-of-life careFamily caregiversCare recipientsQualitative interviewsHome-based palliative care
Type
Research Article
Information
Palliative & Supportive Care , Volume 5 , Issue 1 , March 2007 , pp. 11 - 17
Copyright
© 2007 Cambridge University Press

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

REFERENCES

Addington-Hall, J. & McCarthy, M. (1995). Dying from cancer: Results of a national population-based investigation. Palliative Medicine, 9, 295–305.Google Scholar
Aranda, S.K. & Hayman-White, K. (2001). Home caregivers of the person with advanced cancer: An Australian perspective. Cancer Nursing, 24, 300–307.Google Scholar
Block, S.D. (2001). Perspectives on care at the close of life. Psychological considerations, growth, and transcendence at the end of life: The art of the possible. JAMA, 285, 2898–2905.Google Scholar
Bowles, S., Fisher, R., Ross, M., & MacLean, M. (2000). A Guide to End-of-Life Care for Seniors. Ottawa: University of Ottawa.
Brazil, K., Bédard, M., Krueger, P., et al. (2005). Service preferences among family caregivers for the terminally ill. Journal of Palliative Medicine, 8, 69–78.Google Scholar
Emanuel, E.J., Fairclough, D.L., Slutsman, J., et al. (1999). Assistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patients. The New England Journal of Medicine, 341, 956–963.Google Scholar
Ferris, F.D., Balfour, H.M., Bowen, K., et al. (2002). A model to guide patient and family care: Based on nationally accepted principles and norms of practice. Journal of Pain and Symptom Management, 24, 106–123.Google Scholar
George, L.K. & Gwyther, L.P. (1986). Caregiver's well-being: A multidimensional examination of family caregivers of demented adults. The Gerontologist, 26, 253–259.Google Scholar
Hauser, J.M. & Kramer, B.J. (2004). Family caregivers in palliative care. Clinics in Geriatric Medicine, 20, 671–688.Google Scholar
Lehman, D.R., Ellard, J.H., & Wortman, C.B. (1986). Social support for the bereaved: Recipients' and providers' perspectives on what is helpful. Journal of Consulting and Clinical Psychology, 54, 438–446.Google Scholar
Lyons, K.S., Zarit, S.H., Sayer, A.G., et al. (2002). Caregiving as a dyadic process: Perspectives from caregiver and receiver. Journal of Gerontology: Psychological Sciences, 57B, 195–204.Google Scholar
McSkimming, S., Hodges, M., Super, A., et al. (1999). The experience of life-threatening illness: Patients' and their loved ones' perspectives. Journal of Palliative Medicine, 2, 173–184.Google Scholar
Payne, S., Smith, P., & Dean, S. (1999). Identifying the concerns of informal carers in palliative care. Palliative Medicine, 13, 37–44.Google Scholar
Rabow, M.W., Hauser, J.M., & Adams, J. (2004). They don't know what they don't know. JAMA, 291, 483–491.Google Scholar
Ross, M.M., MacLean, M.J., Cain, R., et al. (2002). End of life care: The experience of seniors and informal caregivers. Canadian Journal on Aging, 21, 137–146.Google Scholar
Stajduhar, K.I. (2003). Examining the perspectives of family members involved in the delivery of palliative care at home. Journal of Palliative Care, 19, 27–35.Google Scholar
Stajduhar, K.I. & Davies, B.A. (1998). Palliative care at home: Reflections on HIV/AIDS family caregiving experiences. Journal of Palliative Care, 14, 14–22.Google Scholar
Thompson, S.C., Sobolew-Shubin, A., Graham, M.A., et al. (1989). Psychosocial adjustment following a stroke. Social Science and Medicine, 28, 239–247.Google Scholar
Waldrop, D.P., Kramer, B.J., Skretny, J.A., et al. (2005). Final transitions: Family caregiving at the end of life. Journal of Palliative Medicine, 8, 623–638.Google Scholar
Wennman-Larsen, A. & Tishelman, C. (2002). Advanced home care for cancer patients at the end of life: A qualitative study of hopes and expectations of family caregivers. Scandinavian Journal of Caring Sciences, 16, 240–247.Google Scholar