Informal Caregivers in Cancer (PDQ®)–Patient Version
Roles of Informal Caregivers
- Caregivers are either formal or informal.
- Caregivers often provide care for cancer patients.
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:
- Help with personal needs, such as bathing, dressing, or shaving.
- Do household chores, such as cleaning, cooking, or laundry.
- Manage the person's finances.
- Plan for care and services.
- Visit often.
Caregiving can also be long-distance, such making appointments and planning care and services by phone or email.
Needs of Informal Caregivers
- Caregiver’s needs change over time.
- 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 demands.
- Caregivers may have some unmet needs when the patient becomes a cancer survivor.
- The end of life of a cancer patient increases caregiver distress.
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:
- The cancer: What can you tell me about the type of cancer he/she has?
- Risks and benefits: What are the risks and benefits of treatment?
- Side effects: How do I take care of his/her side effects 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 him/her to recover?
- Complementary and alternative therapies: Do I need to check with you before he/she uses a complementary and alternative (CAM) therapy? What CAM therapies are useful?
- Care for themselves: What are the best ways I can care for myself 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 demands.
Caregivers may need support for themselves, including help with the following:
- Managing their fears about the cancer patient’s condition and worry about the future.
- Keeping up with their job.
- Finding time for their friends.
- Paying their bills.
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:
- If the cancer will come back.
- How to reduce stress in the survivor’s life.
- How to understand the survivor’s experience.
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.
Burdens of Being an Informal Caregiver
- Caregivers may find it hard to cope with the emotional and physical aspects of caring for someone with cancer.
- Caregivers may feel burdened when caring for cancer patients.
- Caregiver burden may be increased by certain factors, such as gender and age.
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:
- Female gender. Women are more likely to have caregiver burden.
- Age. Caregiver burden can occur at any age but increases for the younger and older caregivers.
- Older caregivers. Older caregivers are at risk for caregiver burden when they have the following conditions:
- Health problems of their own that they neglect.
- Fixed incomes.
- Small social support networks.
- Less time to exercise.
- Trouble remembering to take their own medicines.
- Fatigue from lack of sleep.
- It is common that caregiving by older people may lead to depression, poor health, and even death.
- Middle-aged caregivers. Middle-aged caregivers may often have to miss all or part of their workday. Some may even need 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.
- Older caregivers. Older caregivers are at risk for caregiver burden when they have the following conditions:
- Race and ethnicity. People of different races and cultures approach caregiving in their own way.
Asian American caregivers. 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 American individuals 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.
- Hispanic and African American caregivers. Hispanic and African American caregivers often have strong family ties, which may prevent them from seeking help outside of their family. As a result, they may not use local health resources, including counseling and support groups, home care, long-term care, and hospice services. They usually have higher levels of caregiver strain, a lower household income, and are more likely to reduce their work hours compared with White caregivers.
- 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 to make treatment-related choices that are not the same as their doctor prescribed.
- Employment. Caregivers may need to make changes in the hours they work at their job, make changes in their duties, or take paid or unpaid time off. Work progress may suffer when a caregiver is not focused and can lead to anxiety and depression. Women who have a job are more likely to feel burdened.
- Role strain. Other roles a caregiver may have include spouse, parent, child, friend, employee, or student. Role strain happens when the rights, duties, and behaviors of one role conflict with a different role. When caregivers perform more than one role, they may become stressed. However, many roles do not always lead to stress. 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 may have more burden when the cancer patient leaves the hospital and comes home. The caregiver now must help manage the patient’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 patient has poor physical and mental health, such as anxiety and depression. If the patient has a poor quality of life, this may also increase caregiver burden.
Ways to Reduce Informal Caregiver Burden and Increase Personal Growth
- There are many ways to help decrease caregiver burden.
- Caregivers may find benefits from caregiving.
There are many ways to help 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, are available to 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 skills that include the following:
- Psychoeducational. Providing caregivers with information about the following to help them better cope with their new role:
- Palliative care. Using palliative care to improve the patient’s quality of life. When the patient’s quality of life is improved, the caregiver often feels less burdened.
- Supportive therapy. A type of therapy that addresses the emotional needs of caregivers.
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:
- 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 self.
- Better health habits. Eating a healthy diet, getting more exercise, and keeping up with medical check-ups.
To Learn More About Caregiving
For more information from the National Cancer Institute about caregiving, see the following:
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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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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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