Family Caregivers in Cancer: Roles and Challenges (PDQ®): Supportive care - Health Professional Information [NCI] - Potential Roles for the Family Caregiver
Hands-on Care Provider
Pain and symptom management is a major focus of the caregiver's role. Caregivers frequently dispense pain medication or remind the patient to take a scheduled dose, which requires making decisions about which medication to give, when to give it, and what dose to give. It often falls to the caregiver to keep records and control the technical aspects of managing pain and other symptoms.
If the patient is homebound or unable to move around with ease, the caregiver will often fill and refill medication prescriptions, try to follow medical instructions, and anticipate the need for medication refills ahead of time. In addition to managing the patient's treatment regimen, the caregiver is expected to identify and report treatment side effects or new symptoms.
As they move along the disease trajectory, cancer patients may face an array of other side effects and symptoms:
- Fatigue, drowsiness, and sleep problems have been reported in 51% to 68% of cancer patients. (Refer to the PDQ summaries on Fatigue and Sleep Disorders for more information about fatigue and sleep problems in cancer patients.)
- Nausea, vomiting, anorexia, and cachexia have been reported in 10% to 40% of patients. (Refer to the PDQ summaries on Nausea and Vomiting and Nutrition in Cancer Care for more information about nausea and vomiting, anorexia, and other nutrition needs.)
- Reports of anxiety, mood disorder, and depression are well documented in 25% to 50% of cancer patients. (Refer to the PDQ summaries on Adjustment to Cancer: Anxiety and Distress and Depression for more information about anxiety, depression, and mood disorders.)
Management of these complicated side effects frequently falls to the caregiver in the outpatient setting.
The social impact of cancer and pain can be ameliorated by social support, financial security, and stability at work. Given the increasingly chronic nature of cancer, caregivers may find that support in all of these areas erodes over time. Encouraging caregivers to network with other families and linking them with formal resources can help augment informal sources of social support. Caregivers can be encouraged to search for national caregiver groups and disease-specific organizations online.
- Caregiving in the U.S. Bethesda, Md: National Alliance for Caregiving, 2004. Also available online. Last accessed March 25, 2013.
- Glajchen M: Role of family caregivers in cancer pain management. In: Bruera ED, Portenoy RK, eds.: Cancer Pain: Assessment and Management. 2nd ed. New York, NY: Cambridge University Press, 2009, pp 597-607.
- Vachon ML: Psychosocial needs of patients and families. J Palliat Care 14 (3): 49-56, 1998.
- Ferrell BR, Rhiner M, Cohen MZ, et al.: Pain as a metaphor for illness. Part I: Impact of cancer pain on family caregivers. Oncol Nurs Forum 18 (8): 1303-9, 1991 Nov-Dec.
- Warner JE: Involvement of families in pain control of terminally ill patients. Hosp J 8 (1-2): 155-70, 1992.
- Eheman CR, Berkowitz Z, Lee J, et al.: Information-seeking styles among cancer patients before and after treatment by demographics and use of information sources. J Health Commun 14 (5): 487-502, 2009 Jul-Aug.
- Bowman KF, Rose JH, Deimling GT: Families of long-term cancer survivors: health maintenance advocacy and practice. Psychooncology 14 (12): 1008-17, 2005.
- Rose JH, Radziewicz R, Bowmans KF, et al.: A coping and communication support intervention tailored to older patients diagnosed with late-stage cancer. Clin Interv Aging 3 (1): 77-95, 2008.
- Siminoff LA, Graham GC, Gordon NH: Cancer communication patterns and the influence of patient characteristics: disparities in information-giving and affective behaviors. Patient Educ Couns 62 (3): 355-60, 2006.
- Ferrell BR, Dow KH, Grant M: Measurement of the quality of life in cancer survivors. Qual Life Res 4 (6): 523-31, 1995.
- Glajchen M: The emerging role and needs of family caregivers in cancer care. J Support Oncol 2 (2): 145-55, 2004 Mar-Apr.
- Hickok JT, Morrow GR, Roscoe JA, et al.: Occurrence, severity, and longitudinal course of twelve common symptoms in 1129 consecutive patients during radiotherapy for cancer. J Pain Symptom Manage 30 (5): 433-42, 2005.
- Surbone A, Baider L, Weitzman TS, et al.: Psychosocial care for patients and their families is integral to supportive care in cancer: MASCC position statement. Support Care Cancer 18 (2): 255-63, 2010.