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Family Caregivers in Cancer: Roles and Challenges (PDQ®)

  • Last Modified: 02/21/2014

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Potential Roles for the Family Caregiver

Decision Maker
Advocate
Communicator
Hands-on Care Provider
Social Support

Caregivers of cancer patients are expected to function broadly, providing direct care, assistance with activities of daily living, case management, emotional support, companionship, and medication supervision.[1] Many caregivers of cancer patients perform multiple roles, including those of employee, parent, and caregiver for the elderly. The theory of role strain suggests that having a great number of social roles is associated with increased stress and burden. One study found that employed caregivers who were also caring for children reported higher levels of stress, while employed caregivers without parenting responsibilities reported an increased sense of caregiving as meaningful. These distinctions are important for assessment and targeted intervention for oncology caregivers.[2][Level of evidence: II] Caregivers of cancer patients generally undertake multifaceted responsibilities for tasks such as the following:[3]

  • Administrative tasks (case management, management of insurance claims, bill payment).

  • Instrumental tasks (accompanying the cancer patient to medical appointments; running personal errands; managing cooking, cleaning, and other housekeeping tasks).

  • Navigation tasks (seeking information that may be difficult to find, finding a doctor).

  • Social support activities (providing companionship, socializing).

Decision Maker

The caregiver faces an overwhelming array of decisions during the course of a patient’s illness. Decisions about treatment options, role changes, and finances generally are made by the patient-family unit.[4,5]

Even in the context of a strong doctor-patient relationship, caregivers may be more open to receiving information from other sources, both informal (family, friends) and formal (the Internet, Cancer Information Service, support groups). Families may make erroneous decisions based on biased information found in the media and on the Internet. In studies involving cancer patients and their caregivers, it is common for patients and their families to report the following:[6]

  • Using the Internet to search for more information on the patient’s cancer and its treatment.
  • Checking the information given by the doctor.
  • Researching other treatment options.
  • Seeking information on alternative treatments.
  • Seeking input from family and friends.

In a study involving 731 cancer patients, higher levels of education were associated with more active information seeking, and women with breast cancer were found to be more active in seeking information than were other patients.[7]

Information needs among cancer patients are many and wide-ranging, with most patients reporting unmet needs for more information about tests and treatments, health promotion, side effects and symptoms, and interpersonal and emotional issues. Information needs among cancer caregivers are also varied and may differ from those of the patient.

Advocate

Caregivers often become advocates for the patient with cancer. This role may include administrative tasks such as the following:[3,8]

  • Seeking information.
  • Managing insurance claims.
  • Paying bills.
  • Renewing prescription medication.
  • Exercising increased vigilance over the patient.
  • Reporting new symptoms or side effects.
  • Requesting symptom relief.
  • Incorporating lifestyle changes.
  • Encouraging treatment compliance.
  • Promoting healthy behaviors by the patient.
Communicator

An important goal for oncologists is to improve the ability of patients to (1) understand symptoms and treatment decisions and (2) communicate their ongoing needs and preferences for support.[9] However, communication problems can arise within certain patient groups, including older patients, patients with lower levels of education, and culturally disparate groups.

The family caregiver will often undertake the role of communicator for the patient. For both patients and caregivers, communication is affected by the family members’ health information processing style and ability to manage sometimes threatening health information.[9] Decision making can be complicated by serious gaps in recall and understanding that can occur during psychological and physical health crises and by differences in the communication styles of patients, family caregivers, and health care professionals.[10]

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.[11] 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.[12] 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:[13]

  • 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.

Social Support

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. The desire for additional help from family and friends has been identified as an indicator of caregiver burden.[14][Level of evidence: II] 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.[15]

References
  1. Caregiving in the U.S. Bethesda, Md: National Alliance for Caregiving, 2004. Also available online. Last accessed February 18, 2014. 

  2. Kim Y, Baker F, Spillers RL, et al.: Psychological adjustment of cancer caregivers with multiple roles. Psychooncology 15 (9): 795-804, 2006.  [PUBMED Abstract]

  3. 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. 

  4. Vachon ML: Psychosocial needs of patients and families. J Palliat Care 14 (3): 49-56, 1998.  [PUBMED Abstract]

  5. 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.  [PUBMED Abstract]

  6. Warner JE: Involvement of families in pain control of terminally ill patients. Hosp J 8 (1-2): 155-70, 1992.  [PUBMED Abstract]

  7. 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.  [PUBMED Abstract]

  8. Bowman KF, Rose JH, Deimling GT: Families of long-term cancer survivors: health maintenance advocacy and practice. Psychooncology 14 (12): 1008-17, 2005.  [PUBMED Abstract]

  9. 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.  [PUBMED Abstract]

  10. 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.  [PUBMED Abstract]

  11. Ferrell BR, Dow KH, Grant M: Measurement of the quality of life in cancer survivors. Qual Life Res 4 (6): 523-31, 1995.  [PUBMED Abstract]

  12. Glajchen M: The emerging role and needs of family caregivers in cancer care. J Support Oncol 2 (2): 145-55, 2004 Mar-Apr.  [PUBMED Abstract]

  13. 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.  [PUBMED Abstract]

  14. Burton AM, Sautter JM, Tulsky JA, et al.: Burden and well-being among a diverse sample of cancer, congestive heart failure, and chronic obstructive pulmonary disease caregivers. J Pain Symptom Manage 44 (3): 410-20, 2012.  [PUBMED Abstract]

  15. 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.  [PUBMED Abstract]