Open Access Article
Online Exclusive Article

Symptom Experience of Family Caregivers of Patients With Cancer

Barbara A. Swore Fletcher

Marylin Dodd

Karen Schumacher

Christine Miaskowski

caregiver stress, depression, anxiety, sleep disturbance, compassion fatigue, pain experience
ONF 2008, 35(2), E23-E44. DOI: 10.1188/08.ONF.E23-E44

Purpose/Objectives: To review the literature on depression, anxiety, sleep disturbance, fatigue, and pain in family caregivers of patients with cancer in the context of the Symptom Management Model (SMM) developed at the University of California, San Francisco (UCSF).

Data Sources: Published research studies and systematic reviews from 1990-2007.

Data Synthesis: Studies of depressive symptoms in caregivers of patients with cancer were the most numerous. A limited number of studies examined anxiety, fatigue, sleep disturbance, and pain. Most studies focused on the symptom experience dimension of the UCSF SMM.

Conclusions: Based on the small sample sizes, cross-sectional nature of the studies, and lack of comparison groups, little is known about the prevalence and effects of symptoms in caregivers of patients with cancer.

Implications for Nursing: Additional research is needed to determine the prevalence, severity, and effects of symptoms on caregivers. Better descriptive, correlational studies will lead to the development of interventions to improve symptom management for this group of caregivers.

Jump to a section


    Buysse, D. J., Reynolds, C. F., II, Monk, T. H., Berman, S. R., & Kupfer, D. J. (1989). The Pittsburgh Sleep Quality Index: A new instrument for psychiatric practice and research. Psychiatry Research, 28(2), 193-213.
    Campbell, L. C., Keefe, F. J., McKee, D. C., Edwards, C. L., Herman, S. H., Johnson, L. E., et al. (2004). Prostate cancer in African Americans: Relationship of patient and partner self-efficacy to quality of life. Journal of Pain and Symptom Management, 28(5), 433-444.
    Carter, P. A. (2002). Caregivers' descriptions of sleep changes and depressive symptoms. Oncology Nursing Forum, 29(9), 1277-1283.
    Carter, P. A. (2003). Family caregivers' sleep loss and depression over time. Cancer Nursing, 26(4), 253-259.
    Carter, P. A. (2006). A brief behavioral sleep intervention for family caregivers of persons with cancer. Cancer Nursing, 29(2), 95-103.
    Carter, P. A., & Chang, B. L. (2000). Sleep and depression in cancer caregivers. Cancer Nursing, 23(6), 410-415.
    Cho, M. H., Dodd, M. J., Lee, K. A., Padilla, G., & Slaughter, R. (2006). Selfreported sleep quality in family caregivers of gastric cancer patients who are receiving chemotherapy in Korea. Journal of Cancer Education, 21(1, Suppl.), S37-S41.
    Clark, P. C. (2002). Effects of individual and family hardiness on caregiver depression and fatigue. Research in Nursing and Health, 25(1), 37-48.
    Clavarino, A. M., Lowe, J. B., Carmont, S. A., & Balanda, K. (2002). The needs of cancer patients and their families from rural and remote areas of Queensland. Australian Journal of Rural Health, 10(4), 188-195.
    Cliff, A. M., & MacDonagh, R. P. (2000). Psychosocial morbidity in prostate cancer: II. A comparison of patients and partners. BJU International, 86(7), 834-839.
    Cooper, C., Balamurali, T. B., & Livingston, G. (2007). A systemic review of the prevalence and covariates of anxiety in caregivers of people with dementia. International Psychogeriatrics, 19(2), 175-195.
    Cooper, C., Balamurali, T. B., Selwood, A., & Livingston, G. (2007). A systematic review of intervention studies about anxiety in caregivers of people with dementia. International Journal of Geriatric Psychiatry, 22(3), 181-188.
    Dodd, M., Janson, S., Facione, N., Faucett, J., Froelicher, E. S., Humphreys, J. C., et al. (2001). Advancing the science of symptom management. Journal of Advanced Nursing, 33(5), 668-676.
    Ferrell, B. R., Dow, K. H., & Grant, M. (1995). Measurement of the quality of life in cancer survivors. Quality of Life Research, 4(6), 523-531.
    Ferrell, B. R., Grant, M., Borneman, T., Juarez, G., & ter Veer, A. (1999). Family caregiving in cancer pain management. Journal of Palliative Medicine, 2(2), 185-195.
    Flaskerud, J. H., Carter, P. A., & Lee, P. (2000). Distressing emotions in female caregivers of people with AIDS, age-related dementias, and advanced-stage cancers. Perspectives in Psychiatric Care, 36(4), 121-130.
    Gaston-Johansson, F., Lachica, E. M., Fall-Dickson, J. M., & Kennedy, M. J. (2004). Psychological distress, fatigue, burden of care, and quality of life in primary caregivers of patients with breast cancer undergoing autologous bone marrow transplantation. Oncology Nursing Forum, 31(6), 1161-1169.
    Given, B., & Given, C. W. (1992). Patient and family caregiver reaction to new and recurrent breast cancer. Journal of the American Medical Women's Association, 47(5), 201-206.
    Given, C. W., Stommel, M., Given, B., Osuch, J., Kurtz, M. E., & Kurtz, J. C. (1993). The influence of cancer patients' symptoms and functional states on patients' depression and family caregivers' reaction and depression. Health Psychology, 12(4), 277-285.
    Hagedoorn, M., Buunk, B. P., Kuijer, R. G., Wobbes, T., & Sanderman, R. (2000). Couples dealing with cancer: Role and gender differences regarding psychological distress and quality of life. Psycho-Oncology, 9(3), 232-242.
    Happe, S., & Berger, K. (2002). The association between caregiver burden and sleep disturbance in partners of patients with Parkinson's disease. Age and Ageing, 31(5), 349-354.
    Hosaka, T., & Sugiyama, Y. (2003). Structured intervention in family caregivers of the demented elderly and changes in their immune function. Psychiatry and Clinical Neurosciences, 57(2), 147-151.
    Iconomou, G., Viha, A., Kalofonos, H. P., & Kardamakis, D. (2001). Impact of cancer on primary caregivers of patients receiving radiation therapy. Acta Oncologica, 40(6), 766-771.
    Jensen, S., & Given, B. A. (1991). Fatigue affecting family caregivers of cancer patients. Cancer Nursing, 14(4), 181-187.
    Jepson, C., McCorkle, R., Adler, D., Nuamah, I., & Lusk, E. (1999). Effects of home care on caregivers' psychosocial status. Image-The Journal of Nursing Scholarship, 31(2), 115-120.
    Kim, Y., Duberstein, P. R., Sorensen, S., & Larson, M. R. (2005). Levels of depressive symptoms in spouses of people with cancer: Effects of personality, social support, and caregiving burden. Psychosomatics, 46(2), 123-130.
    Kozachik, S. L., Given, C. W., Given, B. A., Pierce, S. J., Azzouz, F., Rawl, S. M., et al. (2001). Improving depressive symptoms among caregivers of patients with cancer: Results of a randomized clinical trial. Oncology Nursing Forum, 28(7), 1149-1157.
    Kurtz, M. E., Given, B., Kurtz, J. C., & Given, C. W. (1994). The interaction of age, symptoms, and survival status on physical and mental health of patients with cancer and their families. Cancer, 74(7, Suppl.), 2071-2078.
    Kurtz, M. E., Kurtz, J. C., Given, C. W., & Given, B. A. (1995). Relationship of caregiver reactions and depression to cancer patients' symptoms, functional states and depression—A longitudinal view. Social Science and Medicine, 40(6), 837-846.
    Kurtz, M. E., Kurtz, J. C., Given, C. W., & Given, B. A. (2004). Depression and physical health among family caregivers of geriatric patients with cancer—A longitudinal view. Medical Science Monitor, 10(8), CR447-CR456.
    Kurtz, M. E., Kurtz, J. C., Given, C. W., & Given, B. A. (2005). A randomized, controlled trial of a patient/caregiver symptom control intervention: Effects on depressive symptomatology of caregivers of cancer patients. Journal of Pain and Symptom Management, 30(2), 112-122.
    Kuzu, N., Beser, N., Zencir, M., Sahiner, T., Nesrin, E., Ahmet, E., et al. (2005). Effects of a comprehensive educational program on quality of life and emotional issues of dementia patient caregivers. Geriatric Nursing, 26(6), 378-386.
    Langer, S., Abrams, J., & Syrjala, K. (2003). Caregiver and patient marital satisfaction and affect following hematopoietic stem cell transplantation: A prospective, longitudinal investigation. Psycho-Oncology, 12(3), 239-253.
    Larson, P. J., Carrieri-Kohlman, V., Dodd, M., Douglas, M., Faucett, J., Froelicher, E. S., et al. (1994). A model for symptom management. Image—The Journal of Nursing Scholarship, 26(4), 272-276.
    Matthews, B. A. (2003). Role and gender differences in cancer-related distress: A comparison of survivor and caregiver self-reports. Oncology Nursing Forum, 30(3), 493-499.
    McCurry, S. M., Logsdon, R. G., Vitiello, M. V., & Teri, L. (1998). Successful behavioral treatment for reported sleep problems in elderly caregivers of dementia patients: A controlled study. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 53(2), 122-129.
    McKibbin, C. L., Ancoli-Israel, S., Dimsdale, J., Archuleta, C., von Kanel, R., Mills, P., et al. (2005). Sleep in spousal caregivers of people with Alzheimer's disease. Sleep, 28(10), 1245-1250.
    McNair, D. M., Lorr, M., & Droppleman, L. F. (1992). POMS manual (3rd ed.). San Diego, CA: Educational and Industrial Testing Service.
    Miaskowski, C., Kragness, L., Dibble, S., & Wallhagen, M. (1997). Differences in mood states, health status, and caregiver strain between family caregivers of oncology outpatients with and without cancer-related pain. Journal of Pain and Symptom Management, 13(3), 138-147.
    Mizuno, E., Hosak, T., Ogihara, R., Higano, H., & Mano, Y. (1999). Effectiveness of a stress management program for family caregivers of the elderly at home. Journal of Medical and Dental Sciences, 46(4), 145-153.
    Moalosi, G., Floyd, K., Phatshwane, J., Moeti, T., Binkin, N., & Kenyon, T. (2003). Cost-effectiveness of home-based care versus hospital care for chronically ill tuberculosis patients, Francistown, Botswana. International Journal of Tuberculosis and Lung Disease, 7(9, Suppl. 1), S80-S85.
    National Alliance for Caregiving & AARP (2004). Caregiving in the U. S. Retrieved August 30, 2005, from
    Nijboer, C., Tempelaar, R., Triemstra, M., van den Bos, G. A., & Sanderman, R. (2001). The role of social and psychologic resources in caregiving of cancer patients. Cancer, 91(5), 1029-1039.
    Nijboer, C., Triemstra, M., Tempelaar, R., Sanderman, R., & van den Bos, G. A. (1999). Determinants of caregiving experiences and mental health of partners of cancer patients. Cancer, 86(4), 577-588.
    Pal, P. K., Thennarasu, K., Fleming, J., Schulzer, M., Brown, T., & Calne, S. M. (2004). Nocturnal sleep disturbances and daytime dysfunction in patients with Parkinson's disease and in their caregivers. Parkinsonism and Related Disorders, 10(3), 157-168.
    Passik, S. D., & Kirsh, K. L. (2005). A pilot examination of the impact of cancer patients' fatigue on their spousal caregivers. Palliative and Supportive Care, 3(4), 273-279.
    Piper, B. F., Dibble, S. L., Dodd, M. J., Weiss, M. C., Slaughter, R. E., & Paul, S. M. (1998). The revised Piper Fatigue Scale: Psychometric evaluation in women with breast cancer. Oncology Nursing Forum, 25(4), 677-684.
    Radloff, L. S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1(3), 385-401.
    Raveis, V. H., Karus, D. G., & Siegel, K. (1998). Correlates of depressive symptomology among adult daughter caregivers of a parent with cancer. Cancer, 83(8), 1652-1663.
    Rossi Ferrario, S., Zotti, A. M., Massara, G., & Nuvolone, G. (2003). A comparative assessment of psychological and psychosocial characteristics of cancer patients and their caregivers. Psycho-Oncology, 12(1), 1-7.
    Sato, R., Kanda, K., Anan, M., & Watanuki, S. (2002). Sleep EEG patterns and fatigue of middle-aged and older female caregivers providing routine nighttime care for elderly persons at home. Perceptual and Motor Skills, 95(3, Pt. 1), 815-829.
    Schumacher, K., Dodd, M. J., & Paul, S. M. (1993). The stress process in family caregivers of persons receiving chemotherapy. Research in Nursing and Health, 16(6), 395-404.
    Secker, D. L., & Brown, R. G. (2005). Cognitive behavioural therapy (CBT) for carers of patients with Parkinson's disease: A preliminary randomised controlled trial. Journal of Neurology, Neurosurgery, and Psychiatry, 76(4), 491-497.
    Segrin, C., Badger, T., Dorros, S. M., Meek, P., & Lopez, A. M. (2007). Interdependent anxiety and psychological distress in women with breast cancer and their partners. Psycho-Oncology, 16(7), 634-643.
    Sherwood, P. R., Given, B. A., Given, C. W., Schiffman, R. F., Murman, D. L., Lovely, M., et al. (2006). Predictors of distress in caregivers of persons with a primary malignant brain tumor. Research in Nursing and Health, 29(2), 105-120.
    Smith, M. C., Ellgring, H., & Oertel, W. H. (1997). Sleep disturbances in Parkinson's disease patients and spouses. Journal of the American Geriatrics Society, 45(2), 194-199.
    Stetz, K. M., & Brown, M. (2004). Physical and psychological health in family caregiving: A comparison of AIDS and cancer caregivers. Public Health Nursing, 21(6), 533-540.
    Teel, C. S., & Press, A. N. (1999). Fatigue among elders in caregiving and non-caregiving roles. Western Journal of Nursing Research, 21(4), 498-514.
    Toseland, R. W., Blanchard, C. G., & McCallion, P. (1995). A problem solving intervention for caregivers of cancer patients. Social Science and Medicine, 40(4), 517-528.
    Tuinstra, J., Hagedoorn, M., Van Sonderen, E., Ranchor, A., Van den Bos, G. A., Nijboer, C., et al. (2004). Psychological distress in couples dealing with colorectal cancer: Gender and role differences and intracouple correspondence. British Journal of Health Psychology, 9(Pt. 4), 465-478.
    Walsh, S. M., Martin, S. C., & Schmidt, L. A. (2004). Testing the efficacy of a creative-arts intervention with family caregivers of patients with cancer. Journal of Nursing Scholarship, 36(3), 214-219.
    Wilcox, S., & King, A. C. (1999). Sleep complaints in older women who are family caregivers. Journals of Gerontology Series B: Psychological Sciences and Social Sciences Advanced Nursing, 54(3), 189-198.
    Williamson, G. M., & Schultz, R. (1995). Activity restriction mediates the association between pain and depressed affect: A study of younger and older adult cancer patients. Psychological Aging, 10(3), 369-378.
    Williamson, G. M., Shaffer, D. R., & Schultz, R. (1998). Activity restriction and prior relationship history as contributors to mental health outcomes among middle-aged and older spousal caregivers. Health Psychology, 17(2), 152-162.
    Wilson, H. S. (1989). Family caregiving for a relative with Alzheimer's dementia: Coping with negative choices. Nursing Research, 38(2), 94-98.
    Woods, R. T., Wills, W., Higginson, I. J., Hobbins, J., & Whitby, M. (2003). Support in the community for people with dementia and their carers: A comparative outcome study of specialist mental health service interventions. International Journal of Geriatric Psychiatry, 18(4), 298-307.