This summary is about the roles, needs, and burdens of informal caregivers who are caring for a person with cancer.
Caregivers are either formal or informal.
An informal caregiver is usually a relative or friend who may or may not live in the same house as the person they are caring for. A formal caregiver, such as a nurse, is paid and has training to care for a patient. Informal and formal caregivers help people with cancer during and after treatment in many ways.
Caregivers often provide care for cancer patients.
Being a caregiver means helping with the daily needs of another person. They may do the following:
Caregiving can also be long-distance, such making appointments and planning care and services by phone or email.
Caregiver's needs change over time.
The needs of caregivers change as the cancer patient goes from screening to diagnosis, to treatment, and to either long-term survivorship or the end of life. Worry and the need for information are two demands that most caregivers have during the patient's cancer journey.
Caregivers may have questions about treatment and side effects, how to find helpful resources, and ways to practice self-care.
One of the demands caregivers have is the need for information. They may ask the health care provider about the following:
Caregivers also have emotional, social, and financial demands.
Caregivers may need support for themselves, including help with the following:
Caregivers may have some unmet needs when the patient becomes a cancer survivor.
When the cancer patient becomes a cancer survivor the needs of a caregiver decrease, but there may be concerns that continue. Some caregivers of cancer survivors worry about the following:
The end of life of a cancer patient increases caregiver distress.
Caregivers of patients who are nearing the end of life often have lower than expected mental and physical quality of life. Caregiver distress and the number of unmet needs increase as the patient's end of life gets close.
Hospice care can provide much needed support to caregivers as well as cancer patients. Caregivers are often relieved by the higher quality of end-of-life care in hospice and the honoring of the patients' goals.
Caregivers may find it hard to cope with the emotional and physical aspects of caring for someone with cancer.
It is easy to become overwhelmed as a caregiver. Caregivers may worry after hearing the cancer diagnosis or that cancer has come back. It can be hard to give support and stay positive if there is uncertainty about the patient's future or the patient is suffering. Keeping up with the practical aspects of patient care, such as household chores and medical appointments, while also working, can be hard for the caregiver to balance. The patient also worries about these things, but the top concern of the patient and caregiver may not be the same, which may cause added stress.
Caregivers may feel burdened when caring for cancer patients.
Caregiver burden is the stress or strain felt by the person who cares for the family member or friend who needs help during a treatment or an illness. A burden is felt when the demands of caregiving are greater than the resources available to them. These demands can lead to negative effects of caregiving such as:
Caregiver burden may be increased by certain factors, such as gender and age.
The following factors may increase caregiver burden:
Asian American. Asian American caregivers often provide more caregiving hours than white, African American, and Hispanic caregivers. They also use less support services, tend to have fewer financial resources, lower levels of education, and higher levels of depression than other groups of caregivers.
Asian Americans may not talk about death or dying because they believe it is bad luck. This can make it hard for healthcare providers to discuss prognosis and hospice care with them. Keeping a cancer diagnosis secret from the patient and not talking about it can add to a caregiver's sense of burden and duty.
There are many ways to help decrease caregiver burden.
The following therapies or skills may prevent or reduce caregiver burden:
While the caregiver can try most of these therapies or skills at any time during the cancer patient's journey, it is most helpful to have them when the cancer patient is given palliative care or at the end of life to help reduce the burden of the caregiver.
Caregivers may find benefits from caregiving.
Being caregiver to a person with cancer can lead to personal growth. Reducing caregiver burden increases the positive effects of caregiving that often lead to personal growth in the following areas:
Physician Data Query (PDQ) is the National Cancer Institute's (NCI's) comprehensive cancer information database. The PDQ database contains summaries of the latest published information on cancer prevention, detection, genetics, treatment, supportive care, and complementary and alternative medicine. Most summaries come in two versions. The health professional versions have detailed information written in technical language. The patient versions are written in easy-to-understand, nontechnical language. Both versions have cancer information that is accurate and up to date and most versions are also available in Spanish.
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Purpose of This Summary
This PDQ cancer information summary has current information about challenges and helpful interventions for caregivers of cancer patients. It is meant to inform and help patients, families, and caregivers. It does not give formal guidelines or recommendations for making decisions about health care.
Reviewers and Updates
Editorial Boards write the PDQ cancer information summaries and keep them up to date. These Boards are made up of experts in cancer treatment and other specialties related to cancer. The summaries are reviewed regularly and changes are made when there is new information. The date on each summary ("Updated") is the date of the most recent change.
The information in this patient summary was taken from the health professional version, which is reviewed regularly and updated as needed, by the PDQ Supportive and Palliative Care Editorial Board.
Clinical Trial Information
A clinical trial is a study to answer a scientific question, such as whether one treatment is better than another. Trials are based on past studies and what has been learned in the laboratory. Each trial answers certain scientific questions in order to find new and better ways to help cancer patients. During treatment clinical trials, information is collected about the effects of a new treatment and how well it works. If a clinical trial shows that a new treatment is better than one currently being used, the new treatment may become "standard." Patients may want to think about taking part in a clinical trial. Some clinical trials are open only to patients who have not started treatment.
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The best way to cite this PDQ summary is:
PDQ® Supportive and Palliative Care Editorial Board. PDQ Informal Caregivers in Cancer. Bethesda, MD: National Cancer Institute. Updated <MM/DD/YYYY>. Available at: https://www.cancer.gov/about-cancer/coping/family-friends/family-caregivers-pdq. Accessed <MM/DD/YYYY>. [PMID: 26389372]
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Last Revised: 2020-07-29
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