Burden and Depression Among Caregivers of Patients With Cancer at the End of Life

Barbara A. Given

Gwen Wyatt

Charles Given

Paula R. Sherwood

Audrey G. Gift

Danielle DeVoss

Mohammad Hossein Rahbar

ONF 2004, 31(6), 1105-1117. DOI: 10.1188/04.ONF.1105-1117

Purpose/Objectives: To examine the patient and family caregiver variables that predicted caregiver burden and depression for family caregivers of patients with cancer at the end of life.

Jump to a section


    American Cancer Society. (2004). Cancer facts and figures 2004. Retrieved September 17, 2004, from http://www.cancer.org/downloads/STT/CAFF_finalPWSecured.pdf

    Aranda, S., & Hayman-White, K. (2001). Home caregivers of the person with advanced cancer: An Australian perspective. Cancer Nursing, 24, 300-307.

    Aranda, S., & Peerson, A. (2001). Caregiving in advanced cancer: Lay decision making. Journal of Palliative Care, 17, 270-276.

    Blank, J., Clark, L., Longman, A., & Atwood, J. (1989). Perceived home care needs of cancer patients and their caregivers. Cancer Nursing, 12, 78-84.

    Cameron, J., Franche, R., Cheung, A., & Stewart, D. (2002). Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer, 94, 521-527.

    Carey, P., Oberst, M., McCubbin, M., & Hughes, S. (1991). Appraisal and caregiving burden in family members caring for patients receiving chemotherapy. Oncology Nursing Forum, 18, 1341-1348.

    Chapman, K., & Pepler, C. (1998). Coping, hope, and anticipatory grief in family members in palliative home care. Cancer Nursing, 21, 226-234.

    Cleeland, C., Mendoz, T., Wang, X., Chou, C., Herle, M., Morrissey, M., et al. (1997). Assessing symptom distress in cancer patients: The M.D. Anderson Symptom Inventory. Cancer, 89, 1634-1646.

    Clipp, E., & George, L. (1993). Dementia and cancer: A comparison of spouse caregivers. Gerontologist, 33, 534-541.

    Coyle, N. (2001). Facilitating cancer pain control in the home: Opioid-related issues. Current Pain and Headache Reports, 5, 217-226.

    Ferrell, B.R., Grant, M., Chan, J., Ahn, C., & Ferrell, B.A. (1995). The impact of cancer pain education on family caregivers of elderly patients. Oncology Nursing Forum, 22, 1211-1218.

    Fortinsky, R., Kercher, K., & Burant, C. (2002). Measurement and correlates of family caregiver self-efficacy for managing dementia. Aging and Mental Health, 6, 153-160.

    Foxall, M., & Gaston-Johannson, F. (1996). Burden and health outcomes of family caregivers of hospitalized bone marrow transplant patients. Journal of Advanced Nursing, 24, 915-923.

    Gitlin, L., Belle, S., Burgio, L., Czaja, S., Mahoney, D., Gallagher-Thompson, D., et al. (2003). Effect of multicomponent interventions on caregiver burden and depression: The REACH multisite initiative at 6-month follow up. Psychology and Aging, 18, 361-374.

    Given, B., & Given, C. (1992). Patient and family caregiver reaction to new and recurrent breast cancer. Journal of the American Medical Women's Association, 47, 201-206, 212.

    Given, B., Given, C., Helms, E., Stommel, M., & DeVoss, D. (1997). Determinants of family caregiver reaction: New and recurrent cancer. Cancer Practice, 5, 17-24.

    Given, B., & Given, C.W. (1991). Family caregivers of cancer patients. In S.M. Hubbard, P. Greene, & M.T. Knobs (Eds.), Current issues in cancer nursing practice (pp. 1-9). Philadelphia: J.B. Lippincott.

    Given, B., King, S., Collins, C., & Given, C. (1988). Family caregivers of the elderly: Involvement and reactions to care. Archives of Psychiatric Nursing, 2, 281-288.

    Given, B., Kozachik, S., Collins, C., DeVoss, D., & Given, C.W. (2001). Care-giver role strain. In M. Maas, K. Buckwalter, M. Hardy, T. Tripp-Reimer, & M. Titler (Eds.), Nursing care of older adult diagnoses: Outcome and interventions (pp. 679-695). St. Louis, MO: Mosby.

    Given, B., Sherwood, P., & Given, C. (2003). Family care during active cancer care [Commissioned white paper]. Bethesda, MD: National Cancer Institute.

    Given, B., Stommel, M., Collins, C., King, S., & Given, C. (1990). Responses of elderly spouse caregivers. Research in Nursing and Health, 13, 77-85.

    Given, C., Given, B., & Stommel, M. (1994). The impact of age, treatment, and symptoms on the physical and mental health of cancer patients: A longitudinal perspective. Cancer, 74, 2128-2138.

    Given, C., Given, B., Stommel, M., & Azzouz, F. (1999). The impact of new demands for assistance on caregiver depression: Tests using an inception cohort. Gerontologist, 39, 76-85.

    Given, C., Given, B., Stommel, M., Collins, C., King, S., & Franklin, S. (1992). The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Research in Nursing and Health, 15, 271-283.

    Given, C., Stommel, M., Given, B., Osuch, J., Kurtz, M., & Kurtz, J. (1993). The influence of cancer patients, symptoms, and functional states on patients, depression, and family caregivers' reaction and depression. Health Psychology, 12, 277-285.

    Given, C.W., & Given, B. (1994). The home care of a patient with cancer: The mid-life crisis. In E. Kahana, D. Biegel, & M. Wykle (Eds.), Family care-giving through the lifespan (pp. 240-261). Thousand Oaks, CA: Sage.

    Given, C.W., Given, B., Azzouz, F., Kozachik, S., & Stommel, M. (2001). Predictors of pain and fatigue in the year following diagnosis among elderly cancer patients. Journal of Pain and Symptom Management, 21, 456-466.

    Gonzalez-Salvador, M., Arango, C., Lyketsos, C., & Barba, A. (1999). The stress and psychological morbidity of the Alzheimer patient and caregiver. International Journal of Geriatric Psychiatry, 14, 701-710.

    Harris, J., Godfrey, H., Partridge, F., & Knight, R. (2001). Caregiver depression following traumatic brain injury: A consequence of adverse effects on family members? Brain Injury, 15, 223-238.

    Kozachik, S., Given, C., Given, B., Pierce, S., Azzouz, F., Rawl, S., et al. (2001). Improving depressive symptoms among caregivers of patients with cancer: Results of a randomized clinical trial. Oncology Nursing Forum, 28, 1149-1157.

    Kurtz, M., Kurtz, J., Given, C., & Given, B. (1995). Relationship of caregiver reactions and depression to cancer patients' symptoms, functional states, and depression—A longitudinal view. Social Science and Medicine, 40, 837-846.

    Kurtz, M., Kurtz, J., Stommel, M., Given, C., & Given, B. (2001). Physical functioning and depression among older persons with cancer. Cancer Practice, 9, 11-18.

    Kurtz, M., Kurtz, J., Stommel, M., Given, C.W., & Given, B. (2002). Predictors of depressive symptomatology of geriatric patients with lung cancer—A longitudinal analysis. Psycho-Oncology, 11, 12-22.

    Laizner, A., Yost, L., Barg, F., & McCorkle, R. (1993). Needs of family caregivers of persons with cancer: A review. Seminars in Oncology Nursing, 9, 114-120.

    Lyons, K., Zarit, S., Sayers, A., & Whitlatch, C. (2002). Caregiving as a dyadic process: Perspectives from caregiver and receiver. Journal of Gerontology: Series B, Psychological Sciences and Social Sciences, 57, P195-P204.

    Miaskowski, C., Kragness, L., Dibble, S., & Wallhagen, M. (1997). Differences in mood states, health status, and caregiver strain between family caregivers on oncology outpatients with and without cancer related pain. Journal of Pain and Symptom Management, 13, 138-147.

    Nieboer, A., Schulz, R., Matthews, K., Scheier, M., Ormel, J., & Lindenberg, S. (1998). Spousal caregivers' activity restriction and depression: A model for changes over time. Social Science and Medicine, 47, 1361-1371.

    Nijboer, C., Tempelaar, R., Triemstra, M., van den Bos, G., & Sanderman, R. (2001). The role of social and psychologic resources in caregiving of cancer patients. Cancer, 91, 1029-1039.

    Nijboer, C., Triemstra, M., Tempelaar, R., Mulder, M., Sanderman, R., & van den Bos, G. (2000). Patterns of caregiver experiences among partners of cancer patients. Gerontologist, 40, 738-746.

    Nijboer, C., Triemstra, M., Tempelaar, R., Sanderman, R., & van den Bos, G. (1999). Measuring both negative and positive reactions to giving care to cancer patients: Psychometric qualities of the Caregiver Reaction Assessment (CRA). Social Science and Medicine, 48, 1259-1269.

    Northouse, L., Dorris, G., & Charron-Moore, C. (1995). Factors affecting couples' adjustment to recurrent breast cancer. Social Science and Medicine, 41, 69-76.

    Northouse, L., Mood, D., Templin, T., Mellon, S., & George, T. (2000). Couples' patterns of adjustment to colon cancer. Social Science and Medicine, 50, 271-284.

    Northouse, L., & Peters-Golden, H. (1993). Cancer and the family: Strategies to assist spouses. Seminars in Oncology Nursing, 9, 74-82.

    Oberst, M., & Scott, D. (1988). Post-discharge distress in surgically treated cancer patients and their spouses. Research in Nursing and Health, 11, 223-233.

    Oberst, M., Thomas, S., Gass, K., & Ward, S. (1989). Caregiving demands and appraisal of stress among family caregivers. Cancer Nursing, 12, 209-215.

    Radloff, L. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385-401.

    Radloff, L., & Teri, L. (1986). Use of the Center for Epidemiological Studies-Depression Scale with older adults. Clinical Gerontologist, 5, 119-136.

    Raveis, V., Karus, D., & Siegel, K. (1998). Correlates of depressive symptomatology among adult daughter caregivers of a parent with cancer. Cancer, 83, 1652-1663.

    Sales, E. (1991). Psychological impact of the phase of cancer on the family: An updated review. Journal of Psychological Oncology, 9(4), 1-18.

    Sales, E., Schulz, R., & Beigel, D. (1992). Predictors of strain in families of cancer patients: A review of the literature. Journal of Psychosocial Oncology, 10(2), 1-26.

    Sarna, L. (1993). Correlates of symptom distress in women with lung cancer. Cancer Practice, 1, 21-28.

    Sarna, L. (1998). Effectiveness of structured nursing assessment of symptom distress in advanced lung cancer. Oncology Nursing Forum, 25, 1041-1048.

    Sarna, L., & Brecht, M. (1997). Dimensions of symptom distress in women with advanced lung cancer: A factor analysis. Heart and Lung, 26, 22-30.

    Sarna, L., & McCorkle, R. (1996). Burden of care and lung cancer. Cancer Practice, 4, 245-251.

    Schulz, R., O'Brien, A., Bookwala, J., & Fleissner, K. (1995). Psychiatric and physical morbidity effects of dementia caregiving: Prevalence, correlates, and causes. Gerontologist, 35, 771-791.

    Schulz, R., & Williamson, G. (1991). A 2-year longitudinal study of depression among Alzheimer's caregivers. Psychology and Aging, 6, 569-578.

    Schumacher, K. (1996). Reconceptualizing family caregiving: Family-based illness care during chemotherapy. Research in Nursing and Health, 19, 261-271.

    Schumacher, K., Dodd, M., & Paul, S. (1993). The stress process in family caregivers of persons receiving chemotherapy. Research in Nursing and Health, 16, 395-404.

    Siegel, K., Raveis, V., Houts, P., & Mor, V. (1991). Caregiver burden and unmet needs. Cancer, 68, 1131-1140.

    Siegel, K., Raveis, V., Mor, V., & Houts, P. (1991). The relationship of spousal caregiver burden to patient disease and treatment-related conditions. Annals of Oncology, 2, 511-516.

    Song, L., Biegel, D., & Mulligan, S. (1997). Predictors of depressive symptomatology among lower social class caregivers of persons with chronic mental illness. Community Mental Health Journal, 33, 269-286.

    Stommel, M., Given, B., Given, C., & Collins, C. (1995). The impact of frequency of care activities on the division of labor between primary caregivers and other care providers. Research on Aging, 17, 412-433.

    Stommel, M., Given, B., & Given, C.W. (2002). Depression and functional status as predictors of death among cancer patients. Cancer, 29, 2719-2727.

    Stommel, M., Given, C., & Given, B. (1990). Depression as an overriding variable explaining caregiver burden. Journal of Aging and Health, 2, 81-102.

    Stommel, M., Wang, S., Given, C.W., & Given, B. (1992). Confirmatory Factor Analysis (CFA) as a method to assess measurement equivalence. Research in Nursing and Health, 15, 399-405.

    Toseland, R., Blanchard, C., & McCallion, P. (1995). A problem solving intervention for caregivers of cancer patients. Social Science and Medicine, 40, 517-528.

    Vitaliano, P., Russo, J., Young, H., Teri, L., & Maiuro, R. (1991). Predictors of burden in spouse caregivers of individuals with Alzheimer's disease. Psychology and Aging, 6, 392-402.

    Weitzner, M., Haley, W., & Chen, H. (2000). The family caregiver of the older cancer patient. Hematology/Oncology Clinics of North America, 14, 269-281.

    Weitzner, M., McMillan, S., & Jacobsen, P. (1999). Family caregiver quality of life: Differences between curative and palliative cancer treatment settings. Journal of Pain and Symptom Management, 17, 418-428.

    Weitzner, M., Moody, L., & McMillan, S. (1997). Symptom management issues in hospice care. American Journal of Hospital Palliative Care, 14, 190-195.

    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.

    Wyatt, G., Friedman, L., Given, C., & Given, B. (1999). A profile of bereaved caregivers following provision of terminal care. Journal of Palliative Care, 15, 13-25.