Hostname: page-component-586b7cd67f-t8hqh Total loading time: 0 Render date: 2024-11-23T19:16:27.226Z Has data issue: false hasContentIssue false
  • English
  • Français

Cancer family caregivers during the palliative, hospice, and bereavement phases: A review of the descriptive psychosocial literature

Published online by Cambridge University Press:  15 August 2011

Anna-Leila Williams  and
Ruth McCorkle
Anna-Leila Williams*
Affiliation:
Norris Cotton Cancer Center, Dartmouth Hitchcock Medical Center, Lebanon, New Hampshire
Ruth McCorkle
Affiliation:
Yale University School of Nursing, New Haven, Connecticut
*
Address correspondence and reprint requests to: Anna-leila Williams, 131 Clifford Street, Hamden, CT 06517. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Because caregiving to an adult with cancer is a dynamic process, a caregiver's perceived burden and psychosocial concerns may be different at different phases of the patient's disease. There is evidence of escalation in caregiver anxiety, depression, and psychological distress as the patient's functional status declines and as the patient nears death. The purpose of this review was to organize the literature in a meaningful way that can potentially capture the unique needs of caregivers to patients receiving palliative and/or hospice care, and caregivers who are in the post-death bereavement phase.

Method:

A systematic review was conducted. Major databases were searched for non-intervention descriptive studies that included psychosocial variables of family caregivers to adults with cancer during the palliative, hospice, or bereavement phases.

Results:

The 19 studies reviewed were conducted in six countries and varied considerably by samples, outcome measures, methodologies, and analytic approaches. Despite limiting to the palliative, hospice, and bereavement phases, inconsistent results were found for key variables, such as age, gender, and relationship to the patient. When patient–caregiver dyad analysis was conducted, with rare exception, there was mutuality between the patient's condition and the caregiver's response. Across the 19 studies, 89 unique instruments were used, almost half of which were study specific with no psychometric testing reported.

Conclusions/significance of research:

As a direct consequence of assuming the caregiver role, cancer family caregivers in the palliative, hospice, and bereavement phases are at increased risk for physical and mental morbidity. Often, the psychological burden of the caregiver exceeds that of the critically ill patient. It is possible that distressed caregivers have a deleterious influence on patient well-being. This review demonstrates the need to develop research standards, especially regarding measurement instruments, so that caregiver research can mature and interventions can be developed to support family caregivers.

Keywords

CancerFamily caregiverPalliative careHospiceBereavement
Type
Review Articles
Information
Palliative & Supportive Care , Volume 9 , Issue 3 , September 2011 , pp. 315 - 325
Copyright
Copyright © Cambridge University Press 2011

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

Andrews, S.C. (2001). Caregiver burden and symptom distress in people with cancer receiving hospice care. Oncology Nursing Forum, 28, 1469–1474.Google ScholarPubMed
Bradley, E.H., Prigerson, H., Carlson, M.D., et al. (2004). Depression among surviving caregivers: Does length of hospice enrollment matter? American Journal of Psychiatry, 161, 2257–2262.CrossRefGoogle ScholarPubMed
Cameron, J., Franche, R., Cheung, A., et al. (2002). Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer, 94, 521–527.CrossRefGoogle ScholarPubMed
Deeken, J.F., Taylor, K.L., Mangan, P., et al. (2003). Care for the caregivers: A review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. Journal of Pain & Symptom Management, 26, 922–953.CrossRefGoogle ScholarPubMed
Dumont, S., Turgeon, J., Allard, P., et al. (2006). Caring for a loved one with advanced cancer: Determinants of psychological distress in family caregivers. Journal of Palliative Medicine, 9, 912–921.CrossRefGoogle ScholarPubMed
Fenix, J.B., Cherlin, E.J., Prigerson, H.G., et al. (2006). Religiousness and major depression among bereaved family caregivers: A 13-month follow-up study. Journal of Palliative Care, 22, 286–292.CrossRefGoogle ScholarPubMed
Gaugler, J.E., Hanna, N., Linder, J., et al. (2005). Cancer caregiving and subjective stress: A multi-site, multi-dimensional analysis. Psycho-Oncology, 14, 771–785.CrossRefGoogle ScholarPubMed
Gilbar, O. & Ben-Zur, H. (2002). Bereavement of spouse caregivers of cancer patients. American Journal of Orthopsychiatry, 72, 422–432.CrossRefGoogle ScholarPubMed
Given, B., Wyatt, G., Given, C., et al. (2004). Burden and depression among caregivers of patients with cancer at the end of life. Oncology Nursing Forum, 31, 1105–1117.CrossRefGoogle ScholarPubMed
Given, B.A., Given, C.W. & Kozachik, S. (2001). Family support in advanced cancer. CA: A Cancer Journal for Clinicians, 51, 213–231.Google ScholarPubMed
Goldstein, M., Concato, J., Fried, T., et al. (2004). Factors associated with caregiver burden among caregivers of terminally ill patients with cancer. Journal of Palliative Care, 20, 38–43.CrossRefGoogle ScholarPubMed
Grov, E., Dahl, A., Moum, T., et al. (2005). Anxiety, depression, and quality of life in caregivers of patients with cancer in late palliative phase. Annals of Oncology, epub, 1–7.Google ScholarPubMed
Grov, E.K., Fossa, S.D., Tonnessen, A., et al. (2006). The caregiver reaction assessment: Psychometrics, and temporal stability in primary caregivers of Norwegian cancer patients in late palliative phase. Psycho-Oncology, 15, 517–527.CrossRefGoogle ScholarPubMed
Grunfeld, E., Coyle, D., Whelan, T., et al. (2004). Family caregiver burden: Results of a longitudinal study of breast cancer patients and their principal caregivers. Canadian Medical Association Journal, 170, 1795–1801.CrossRefGoogle ScholarPubMed
Hagedoorn, M., Buunk, B.P., Kuijer, R.G., et al. (2000). Couples dealing with cancer: Role and gender differences regarding psychological distress and quality of life. Psycho-Oncology, 9, 232–242.3.0.CO;2-J>CrossRefGoogle ScholarPubMed
Haley, W.E., LaMonde, L.A., Han, B., et al. (2001). Family caregiving in hospice: Effects on psychological and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. Hospice Journal – Physical, Psychosocial, & Pastoral Care of the Dying, 15, 1–18.Google ScholarPubMed
Harding, R., Higginson, I.J. & Donaldson, N. (2003). The relationship between patient characteristics and carer psychological status in home palliative cancer care. Supportive Care in Cancer, 11, 638–643.CrossRefGoogle ScholarPubMed
Hayman, J., Langa, K., Kabeto, M., et al. (2001). Estimating the cost of informal caregiving for elderly patients with cancer. Journal of Clinical Oncology, 19, 3219–3225.CrossRefGoogle ScholarPubMed
Hudson, P. (2004). Positive aspects and challenges associated with caring for a dying relative at home. International Journal of Palliative Nursing, 10, 58–65.CrossRefGoogle ScholarPubMed
Iconomou, G., Vagenakis, A.G. & Kalofonos, H.P. (2001). The informational needs, satisfaction with communication, and psychological status of primary caregivers of cancer patients receiving chemotherapy. Supportive Care in Cancer, 9, 591–596.CrossRefGoogle ScholarPubMed
Kim, Y., Baker, F., Spillers, R.L., et al. (2006a). Psychological adjustment of cancer caregivers with multiple roles. Psycho-Oncology, 15, 795–804.CrossRefGoogle ScholarPubMed
Kim, Y., Loscalzo, M.J., Wellisch, D.K., et al. (2006b). Gender differences in caregiving stress among caregivers of cancer survivors. Psycho-Oncology, 15, 1086–1092.CrossRefGoogle ScholarPubMed
Kris, A.E., Cherlin, E.J., Prigerson, H., et al. (2006). Length of hospice enrollment and subsequent depression in family caregivers: 13-month follow-up study. American Journal of Geriatric Psychiatry, 14, 264–269.CrossRefGoogle ScholarPubMed
Kurtz, M., Kurtz, J., Given, C., et al. (2004). Depression and physical health among family caregivers of geriatric patients with cancer––A longitudinal view. Medical Science Monitor, 10, CR447–CR456.Google ScholarPubMed
Kurtz, M.E., Kurtz, J.C., Given, C.W., et al. (1997). Predictors of post bereavement depressive symptomatology among family caregivers of cancer patients. Supportive Care in Cancer, 5, 53–60.CrossRefGoogle Scholar
Matthews, B.A. (2003). Role and gender differences in cancer-related distress: A comparison of survivor and caregiver self-reports. Oncology Nursing Forum Online, 30, 493–499.CrossRefGoogle ScholarPubMed
McCorkle, R., Siefert, M.L., Dowd, M.F., et al. (2007). Effects of advanced practice nursing on patient and spouse depressive symptoms, sexual function, and marital interaction after radical prostatectomy. Urologic Nursing, 27, 65–77.Google ScholarPubMed
Mellon, S., Northouse, L.L. & Weiss, L.K. (2006). A population-based study of the quality of life of cancer survivors and their family caregivers. Cancer Nursing, 29, 120–131.CrossRefGoogle ScholarPubMed
Northouse, L.L., Mood, D., Kershaw, T., et al. (2002). Quality of life of women with recurrent breast cancer and their family members. Journal of Clinical Oncology, 20, 4050–4064.CrossRefGoogle ScholarPubMed
Oberst, M.T. & Scott, D.W. (1988). Postdischarge distress in surgically treated cancer patients and their spouses. Research in Nursing & Health, 11, 223–233.CrossRefGoogle ScholarPubMed
Oberst, M.T., Thomas, S.E., Gass, K.A., et al. (1989). Caregiving demands and appraisal of stress among family caregivers. Cancer Nursing, 12, 209–215.CrossRefGoogle ScholarPubMed
Payne, S., Smith, P. & Dean, S. (1999). Identifying the concerns of informal carers in palliative care. Palliative Medicine, 13, 37–44.CrossRefGoogle ScholarPubMed
Pearce, M.J., Singer, J.L. & Prigerson, H.G. (2006). Religious coping among caregivers of terminally ill cancer patients: Main effects and psychosocial mediators. Journal of Health Psychology, 11, 743–759.CrossRefGoogle ScholarPubMed
Proot, I.M., Abu–Saad, H.H., ter Meulen, R.H., et al. (2004). The needs of terminally ill patients at home: Directing one's life, health and things related to beloved others. Palliative Medicine, 18, 53–61.CrossRefGoogle ScholarPubMed
Sherif, T., Jehani, T., Saadani, M., et al. (2001). Adult oncology and chronically ill patients: Comparison of depression, anxiety and caregivers' quality of life. Eastern Mediterranean Health Journal, 7, 502–509.CrossRefGoogle ScholarPubMed
Weitzner, M.A., McMillan, S.C. & Jacobsen, P.B. (1999). Family caregiver quality of life: Differences between curative and palliative cancer treatment settings. Journal of Pain & Symptom Management, 17, 418–428.CrossRefGoogle ScholarPubMed
Williamson, G., Shaffer, D. & Schulz, R. (1998). Activity restriction and prior relationship history as contributors to mental health outcomes among middle-aged and older spousal caregivers. Health Psychology, 17, 152–162.CrossRefGoogle ScholarPubMed
Wyatt, G.K., Friedman, L., Given, C.W., et al. (1999). A profile of bereaved caregivers following provision of terminal care. Journal of Palliative Care, 15, 13–25.CrossRefGoogle ScholarPubMed
Yost, L., McCorkle, R., Buhler–Wilkerson, K., et al. (1993). Determinants of subsequent home health care nursing service use by hospitalized patients with cancer. Cancer, 71, 3304–3312.3.0.CO;2-D>CrossRefGoogle Scholar