Family Caregivers in Cancer: Roles and Challenges (PDQ®): Supportive care - Health Professional Information [NCI] - The Caregiver's Perspective: Across the Illness Trajectory
Caregivers have their own emotional responses to patients' diagnoses and prognoses, and they may require coaching and emotional support separate from that offered to patients.[1,2] Caregiver roles and caregiver burden are profoundly affected by a patient's prognosis, stage of illness, and goals of care. The existing body of work on family caregivers of patients with cancer focuses primarily on a caregiver's adjustment during the acute survivorship phase, from the time of diagnosis to 2 years postdiagnosis.
As open communication and diagnostic disclosure for patients have gained in popularity, studies have focused on the impact of truth-telling on patients, and guidelines for such communication have been developed.[4,5] Although caregivers are sometimes included in these studies, little attention has been paid to caregivers' specific informational needs and preferences for diagnostic information or to caregivers' readiness or willingness to integrate this new medical information. Yet a caregiver is expected to learn new illness-related terminology, enter the new treatment setting with the cancer patient, and participate actively in treatment decision making. For all of these reasons, caregivers experience a complex array of powerful emotions that may equal or surpass those experienced by the patient during diagnosis and treatment.[6,7,8]
A link to a list of current clinical trials is included for each treatment section. For some types or stages of cancer, there may not be any trials listed. Check with your child's doctor for clinical trials that are not listed here but may be right for your child.
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Family caregivers in the United States are expected to take an active role in decision making related to treatment options, beginning during the diagnostic phase. The caregiver is expected to do the following:
Integrate new medical information.
Learn new illness-related terminology.
Enter a new treatment setting.
Find the time to accompany the patient to medical appointments.
During Hospitalization and Treatment
Caregivers play an important role in making decisions about treatment and care. The family often steps in as a patient's advocate and primary decision maker at the request of the patient. How well a caregiver fulfills that role may depend on his or her preexisting relationship with the patient and the level of agreement between caregiver and patient. Disagreements and conflicts can complicate decision making and affect treatment choices. In addition, disagreement within the family about the most appropriate treatment options for the patient can cause excessive stress for both patients and caregivers, resulting in diminished quality of life.
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: