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Family Caregivers in Cancer: Roles and Challenges (PDQ®): Supportive care - Health Professional Information [NCI] - The Caregiver's Perspective: Across the Illness Trajectory


During the active treatment phase, caregivers report difficulties in juggling the competing demands of providing emotional and tangible support to patients while meeting the ongoing obligations of home, work, and family. The demands of providing transportation, scheduling and making hospital visits, arranging for home care, and dealing with insurers may be physically and emotionally exhausting for both cancer patients and their caregivers.[8]

Planning the Transition Home

Transitions between care settings are particularly stressful for both cancer patients and their caregivers. The immediate posthospitalization period may be the most precarious for caregivers, filled with mounting concerns about managing patients at home while also attending to their own health.[12] A study involving 518,240 elderly couples enrolled in Medicare found that the hospitalization of a spouse was associated with an increased risk of death for elderly caregivers.[13] The cancer patient usually prefers to be at home, where he or she can resume a sense of normalcy in a familiar and comforting environment.

Home Care

If the cancer patient is receiving home care, the caregiver is responsible for managing home care professionals, organizing necessary medical and food supplies, managing any medical emergencies that may arise, and generally navigating the health care system. In addition to assuming many of the patient's domestic responsibilities, the family caregiver may have to forgo social activities and work duties to assume the primary caregiver tasks of providing companionship, accompanying the patient to medical appointments, and running personal errands.

Surviving Beyond Treatment

Persistent psychological distress and role adjustment problems experienced by caregivers have been reported up to a year after patients have completed treatment for cancer, with levels of distress far higher than those found in healthy controls.[14,15] Much of this distress is attributed to elevated fears of recurrence and sexual difficulties.[16,17] At 2 years postdiagnosis, however, studies do not indicate long-term psychological distress.[18,19,20]

Generally speaking, factors that may predict a caregiver's poor adjustment over the long term include the following:

  • Strain in the relationship between caregiver and patient.[18,19]
  • Negative communication patterns between caregiver and patient.[20]
  • Less social support.[21]
  • Role overload.[22]

End of Life

Caregiver quality of life has been found to be influenced by the cancer patient's stage of illness and goals of care. Caregivers of patients at the end of life have been shown to have significantly lower quality-of-life scores and health scores than do caregivers of patients who are in active/curative treatment.[23,24]

The physical and emotional demands of caregiving reach their peak as the disease progresses to the terminal phase. The period during which patients enter hospice is often characterized by profound unrest and intense strain. In the context of recurrent illness, terminal illness, or the dying process, the caregiver must meet a new set of challenges in dealing with increasing functional limitations, increasing dependence of the patient, and greater symptom burden.[25,26] If treatment is prolonged, the capacity of caregivers to meet the daily needs of patients is severely strained.


WebMD Public Information from the National Cancer Institute

Last Updated: February 25, 2014
This information is not intended to replace the advice of a doctor. Healthwise disclaims any liability for the decisions you make based on this information.
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