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Informal Caregivers in Cancer (PDQ®): Supportive care - Patient Information [NCI]

This information is produced and provided by the National Cancer Institute (NCI). The information in this topic may have changed since it was written. For the most current information, contact the National Cancer Institute via the Internet web site at http://cancer.gov or call 1-800-4-CANCER.

Roles of Informal Caregivers

Caregivers help people with cancer during and after treatment.

An informal caregiver, often a family member or friend, gives care to someone they have a personal relationship with, usually without payment. They may or may not live in the same home or geographic area as the person they are caring for.

Caregivers help with the daily needs of another person by:

Formal caregivers are trained professionals who are paid to provide care for a patient and are not the focus of this page.

Needs of Informal Caregivers

Caregivers may have questions about treatment and side effects, how to find helpful resources, and ways to practice self-care.

If you are a caregiver, your information needs will change as the person with cancer's needs change during and after treatment. As a member of the care team, you may play an important role in coordinating your loved one's care, giving drugs and managing side effects, and keeping family members informed.

You may have questions for the health care provider about:

Caregivers also have emotional, social, and financial needs.

It is easy to become overwhelmed as a caregiver. And it is normal to worry about what the future holds for your loved one. You may need support for yourself to:

People with cancer also worry about these things, but their top concern and the top concern of caregivers may not be the same, which may cause added stress.

Caregivers may have different needs after their loved one completes treatment.

When people with cancer complete treatment, the needs of caregivers decrease, but some caregivers may continue to worry about:

Caregiver distress increases when the person with cancer is at the end of life.

Caregivers of people who are nearing the end of life often have a low mental and physical quality of life. Caregiver distress and the need for additional support increase as the person with cancer nears the end of life.

Hospice care can provide much needed support to people with cancer and their caregivers. Caregivers are often relieved by the hospice care team's ability to honor their loved one's care goals and provide high-quality end-of-life care.

Benefits of Being an Informal Caregiver

Some caregivers report positive experiences from caregiving that often lead to personal growth in the following areas:

Burdens of Being an Informal Caregiver

Caregivers may feel burdened when caring for people with cancer.

You may find it hard to cope with the emotional and physical aspects of caring for someone with cancer. This may lead to caregiver burden.

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:

Parents as Caregivers

Caring for a child with cancer is a stressful time for parents.

Being told that your child has cancer is extremely distressing. Many parents say they feel shocked, overwhelmed, and confused. Parents must manage the same needs and burdens as other caregivers, while remaining strong for their sick child and their other children.

Parents caring for children with cancer may report symptoms of traumatic stress during and after their child's diagnosis. Symptoms include:

Although stress levels decrease for most parents after their child finishes treatment, some parents report long-term traumatic stress symptoms after treatment ends.

Stress levels of parents may be affected by several factors.

The following factors may reduce stress in parents caring for children with cancer:

For information and advice for parents who have a child with cancer, see Children with Cancer: A Guide for Parents.

Ways to Reduce Caregiver Burden

There are many ways to help you decrease caregiver burden.

The following therapies or skills may prevent or reduce caregiver burden:

To Learn More About Caregiving

For more information from the National Cancer Institute about caregiving, see the following:

About This PDQ Summary

About PDQ

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.

PDQ is a service of the NCI. The NCI is part of the National Institutes of Health (NIH). NIH is the federal government's center of biomedical research. The PDQ summaries are based on an independent review of the medical literature. They are not policy statements of the NCI or the NIH.

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.

Clinical trials can be found online at NCI's website. For more information, call the Cancer Information Service (CIS), NCI's contact center, at 1-800-4-CANCER (1-800-422-6237).

Permission to Use This Summary

PDQ is a registered trademark. The content of PDQ documents can be used freely as text. It cannot be identified as an NCI PDQ cancer information summary unless the whole summary is shown and it is updated regularly. However, a user would be allowed to write a sentence such as "NCI's PDQ cancer information summary about breast cancer prevention states the risks in the following way: [include excerpt from the summary]."

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]

Images in this summary are used with permission of the author(s), artist, and/or publisher for use in the PDQ summaries only. If you want to use an image from a PDQ summary and you are not using the whole summary, you must get permission from the owner. It cannot be given by the National Cancer Institute. Information about using the images in this summary, along with many other images related to cancer can be found in Visuals Online. Visuals Online is a collection of more than 3,000 scientific images.

Disclaimer

The information in these summaries should not be used to make decisions about insurance reimbursement. More information on insurance coverage is available on Cancer.gov on the Managing Cancer Care page.

Contact Us

More information about contacting us or receiving help with the Cancer.gov website can be found on our Contact Us for Help page. Questions can also be submitted to Cancer.gov through the website's E-mail Us.

Last Revised: 2023-09-13


If you want to know more about cancer and how it is treated, or if you wish to know about clinical trials for your type of cancer, you can call the NCI's Cancer Information Service at 1-800-422-6237, toll free. A trained information specialist can talk with you and answer your questions.



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