Informal Caregivers in Cancer (PDQ®)–Patient Version
Roles of Informal Caregivers
- Caregivers help people with cancer during and after treatment.
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:
- helping with personal needs, such as bathing, dressing, and mobility
- doing or arranging housework, such as cleaning, shopping, and cooking
- managing finances
- planning for care and services such as making appointments, providing transportation, and reporting problems
- visiting often
- providing emotional support
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.
- Caregivers also have emotional, social, and financial needs.
- Caregivers may have different needs after their loved one completes treatment.
- Caregiver distress increases when the person with cancer is at the end of life.
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:
- The cancer: What can you tell me about the type of cancer my family member or friend has?
- Risks and benefits: What are the risks and benefits of treatment?
- Side effects: How do I care for my family member or friend when they are having side effects from treatment while at home?
- Medical and nursing tasks: How do I give an injection? How do I set up the tube feedings?
- Recovery: How long will it take my family member or friend to recover?
- Complementary and alternative therapies: Do I need to check with you before my family member or friend uses a complementary and alternative (CAM) therapy? What CAM therapies are useful?
- Care for yourself: What are the best ways I can maintain my health and well-being while caregiving?
- Emotions felt by patients and caregivers: What are some ways we can deal with what we are feeling?
- Local, community-based resources: What are some local resources I can turn to?
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:
- manage fears about your loved one's condition and future
- balance the time needed for your job and the time needed for caregiving
- find time for your friends
- pay your bills
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:
- the cancer coming back
- how to reduce stress in the survivor's life
- how to understand the survivor's experience
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:
- Acceptance. Adjusting to things that cannot change.
- Family. Feeling a closer bond with family.
- Appreciation. Being aware of love and support and having a greater joy of life.
- Reprioritization. Arranging life priorities in a new order of importance.
- Increased faith. Having a greater sense of closeness to God and renewed spiritual practices.
- Empathy. Understanding and feeling what others feel.
- Positive self-view. Feeling good about oneself.
- Better health habits. Eating a healthy diet, getting more exercise, and keeping up with medical checkups.
Burdens of Being an Informal Caregiver
- Caregivers may feel burdened when caring for people with cancer.
- Caregiver burden may be increased by certain factors, such as gender and age.
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:
- Female gender. Women, especially those who work, are more likely to have caregiver burden.
- Age. Caregiver burden can occur at any age.
- Older caregivers. Older caregivers are at risk of caregiver burden because their health, social, or financial situations may make it hard for them to care for others. As a result, they are more likely to have depression, poor health, and a higher risk of death than noncaregivers in the same age group. Older caregivers are at risk of caregiver burden when they have the following conditions:
- Middle-aged caregivers. Middle-aged caregivers may worry about being able to balance their caregiving and work responsibilities. They may worry about missing workdays, being less productive at work, and needing to take a leave of absence.
- Younger caregivers. Younger caregivers often juggle work and their own family duties. They may also have to give up part of their social lives to be a caregiver.
- Culture. There are cultural perspectives to caregiving that may increase the risk of caregiver burden. For example, some cultures have strong family ties, leading caregivers to use fewer support services, including counseling and support groups, home care, long-term care, and hospice services. Additionally, different cultures may have beliefs about death and dying that make discussions with the health care team about prognosis and care difficult. Being unable to have these discussions can add to a caregiver's sense of burden and duty.
- Socioeconomic status. Socioeconomic status is the social standing of someone that is measured by a person's education, income, and job. People with a lower socioeconomic status may have less access to resources and financial help. Lower incomes and limited financial options may cause patients and their families to make treatment-related choices that are not the same as their doctor prescribed.
- Employment. Caregivers may need to take time off from their job or make changes in the hours they work or the duties they perform. Work progress may suffer when a caregiver is not focused and can lead to anxiety and depression.
- Role strain. A caregiver may have many roles. They may also be a spouse, parent, child, friend, employee, or student. Role strain happens when the rights, duties, and behaviors of one role conflict with a different role. Sometimes having more than one role can increase stress for a caregiver, but sometimes it reduces stress by allowing them to step away from the caregiver role for a while. For example, when a caregiver goes to work, they may benefit from the support of their employer and coworkers, and from the time away from caregiving.
- Site of care. Caregivers have more burden when the person with cancer leaves the hospital and comes home. The caregiver now must help manage the person's symptoms and may be unsure about the prognosis or if the cancer can spread. Visits by home health nurses can help reduce this burden. Sudden changes in site of care, such as going back to the hospital, also increase caregiver burden.
- Patient characteristics. Caregivers may have more burden when the person with cancer has poor physical and mental health, such as anxiety and depression. If the person has a poor quality of life, this may also increase caregiver burden.
Parents as Caregivers
- Caring for a child with cancer is a stressful time for parents.
- Stress levels of parents may be affected by several factors.
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:
- repeated, unwanted thoughts
- avoiding difficult thoughts, feelings, and situations
- increased heart rate and blood pressure
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:
- social support from family and friends
- support from health care team members
- maintaining a positive view of the child's quality of life
- believing that treatments will have a positive outcome
- being employed
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.
There are many ways to help you decrease caregiver burden.
The following therapies or skills may prevent or reduce caregiver burden:
- Cognitive behavioral therapy. A type of therapy that helps change the way a caregiver thinks and feels about certain things.
- Complementary and/or alternative therapies. Many options, such as guided imagery, massage therapy, or healing touch, help caregivers manage stress and anxiety.
- Family/couples therapy. Counseling that helps families work through problems in a way that makes the family stronger.
- Interpersonal therapy. One-on-one counseling that focuses on your relationships with other people to reduce caregiver burden.
- Problem solving/skill building. Helping the caregiver develop the following skills:
- ability to assess and manage the patient's symptoms
- identify solutions to caregiving problems
- enhance the caregiver's ability to cope with cancer caregiving roles and duties
- Psychoeducation. Helping caregivers cope by providing them with information about:
- Palliative care. Using palliative care to improve the loved one's quality of life. When their quality of life is improved, the caregiver often feels less burdened.
- Supportive therapy. A type of therapy that addresses the emotional needs of caregivers.
To Learn More About Caregiving
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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.
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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.
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Clinical Trial Information
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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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