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:
Creating evidence-based summaries on cancer genetics is challenging because the rapid evolution of new information often results in evidence that is incomplete or of limited quality. In addition, established methods for evaluating the quality of the evidence are available for some but not all aspects of cancer genetics. Varying levels of evidence are available for different topics, and PDQ summaries are subject to modification as new evidence becomes available. As in other areas of medicine, testing...
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 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.
In the area of pain management, caregivers need to understand pharmacologic issues and medication instructions. Specifically, caregivers have been shown to need instructions on the following:
Which medications to use for pain relief.
When to give a medication.
How to assess the efficacy of pain control.
How to monitor for side effects.
How to identify negative results or ineffectiveness.
A caregiver's knowledge of and attitudes about symptoms such as pain and fatigue may influence the patient. A caregiver who harbors fears of causing addiction, overdosing, or indirectly causing discomfort through side effects may guard the medication supply, limit its use, and undermedicate the patient. Caregivers need to be trained in managing the side effects of treatment because the experience of side effects can cause cancer patients to abandon their treatment regimens.
Caregivers report learning most of their caregiving skills through trial and error and would like more assistance from the formal health care system. Caregivers have been shown to benefit from training in nonpharmacologic strategies for symptom management, including the following: