Family Caregivers in Cancer: Roles and Challenges (PDQ®): Supportive care - Health Professional Information [NCI] - Interventions for Caregivers
Caregivers usually define the onset of caregiving as the time of the patient's first cancer diagnosis; ideally, interventions for the caregiver should begin then. However, no validated model exists that can be applied to understanding the family caregiver experience, and few settings perform routine caregiver assessment—making the job of oncology practitioners more difficult, as they have no suitable framework for guiding their care decisions.
Generally speaking, interventions for the caregiver include the following:
Purpose of This Summary
This PDQ cancer information summary for health professionals provides comprehensive, peer-reviewed, evidence-based information about the formal ranking system used by the PDQ Editorial Boards to assess evidence supporting the use of specific interventions or approaches. It is intended as a resource to inform and assist clinicians who care for cancer patients. It does not provide formal guidelines or recommendations for making health care decisions.
Clinicians generally agree on the value of providing information to caregivers. Information tailored to a caregiver's situation provides guidance for implementing care. Information may also help reduce the stress of caregiving and associated feelings of inadequacy and helplessness. Information about the patient's disease trajectory, anticipated course of disease, and the range of emotions experienced by families helps normalize the experience and enhances a caregiver's sense of control.
Caregivers and cancer patients may experience stress related to meeting new oncology clinicians and being introduced to new treatment facilities. One review of the effects of programs that provide information to cancer patients and caregivers about the cancer therapy facility and available services was undertaken. Reviews of randomized controlled trials (RCTs), cluster RCTs, and quasi-RCTs related to the effects of interventions designed to help orientation to the cancer care facility revealed only four studies with 610 participants. Results from two RCTs showed significant benefit related to reduction of distress levels but nonsignificant benefit to anxiety levels. Other positive benefits included increased knowledge about the cancer center and cancer therapy and improved coping abilities, with no harmful or adverse effects. However, the authors concluded that the studies were generally of poor quality with low numbers of participants, resulting in potential bias.[Level of evidence: I]
Caregivers want factual information about cancer and its treatment, related symptoms, and side effects. They need specific details about what to do and how a particular cancer is likely to behave. In one survey, priority areas of information and education needs identified by cancer outpatients and their caregivers included management of pain, weakness, and fatigue, followed by the types of services available to facilitate patient care at home. The most important time periods during the patient's disease trajectory for caregivers to receive information appear to be the following:
At the start of new treatments.
During the dying phase.
However, because of the chronic nature of cancer and the range of tasks that need to be mastered at different times, the nature of a caregiver's information needs changes over time.