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The Caregiver's Perspective: Across the Illness Trajectory


    The Cancer Communication Assessment Tool for Patients and Families (CCAT-PF) is an instrument that assesses congruence in patient-caregiver communication. The tool can be used on patients, caregivers, or both and identifies specific areas of conflict that may be amenable to intervention. In the initial validation study, higher CCAT-PF scores were significantly correlated with the following:[11]

    • Greater patient depression.
    • Higher perceived family conflict.
    • Lower patient and caregiver well-being.
    • Less expressiveness.
    • Lower perceived family cohesion.

    The CCAT-PF can be administered by any member of the oncology team.

    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]


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