Family Caregivers in Cancer (PDQ®) - National Cancer Institute

HHS HealthBeat (June 15, 2012)

Supporting family caregivers

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Family Caregivers in Cancer (PDQ®) - National Cancer Institute

Providing care for a loved one with a serious long-term disease can take a toll on the family caregiver. At the National Institutes of Health’s Clinical Center, NIH’s research hospital, nurse and scientist Margaret Bevans sees how it affects people.
In a journal article, Bevans described a wife providing care for a husband with cancer while she was caregiver for her mother and father. Bevans says family caregivers report feeling worried, fearful, sad and angry. She says they may need to reach out for help.
“Connect in advance with providers to bring the caregivers into the discussions very early, and have a support structure in place, understand where they can reach out, and encourage them to communicate.”
Bevans’ article was in the Journal of the American Medical Association.

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Help for the Caregiver

Key Points for This Section

Caregivers have a very hard job and it's normal to need help. Support services can be chosen to help where the caregiver needs it. Education and Information Coping Skills Counseling Family Meetings Home Care Help Hospice Care for the Cancer Patient

Caregivers have a very hard job and it's normal to need help.

Although caregiver assessments are used to plan support for the family caregiver, they are not always done. It's important for caregivers to ask for help when they need it. Many people who were once caregivers say they did too much on their own. Some wished that they had asked for help sooner. The best time to find out where to get help is when the patient is diagnosed with cancer. All through caregiving, it’s important to watch for signs of caregiver strain and get help right away. Caregivers who take care of their own needs have the strength to carry on and be a better caregiver.

Support services can be chosen to help where the caregiver needs it.

Support for the caregiver may include education and information, coping skills, counseling and psychotherapy, family meetings, home care help, and hospice care.

Education and Information

Family caregivers usually have many questions and feel unsure about some things when they begin caregiving. Information and education can help caregivers feel less stressed and more comfortable in their role.

Since cancer treatment can last for a long time and the disease goes through many changes, the kind of information caregivers need changes over time. Important times for the caregiver to receive information include the following:

• At diagnosis.
• When the patient is in the hospital.
• When care at home begins.
• At the start of new treatments.
• If the cancer recurs (comes back).
• At the end of life.

There are many ways caregivers can get information:

• Call a cancer information specialist at 1-800-4-CANCER (1-800-422-6237).
• Search the Internet.
• Ask questions.
• Read booklets, pamphlets, fact sheets, and information cards.
• Use touch-screen and other computer information systems at hospitals and doctor offices.

Caregivers often want to know facts about the cancer, caregiving skills, and how to manage symptoms and side effects.

• Facts about the cancer
  • How the cancer will change over time.
  • Symptoms the patient may have.
  • What the treatments may be.
  • Side effects that may be caused by the cancer or the treatments.
• What the caregiver is expected to do
  Caregivers report that they learn most of their caregiving skills by trial and error and would like more information from the health care team. Some of the skills caregivers may need to learn are:
  • How to place pillows to make the patient comfortable.
  • How to move the patient.
  • How to help the patient walk.
  • How to give medicines and treatments.
  • What to do in medical emergencies.
  • How to solve problems.
  • How to take care of themselves.
  Many caregivers also want to know about getting outside help to care for the patient at home.
• How to manage symptoms and side effects
  When the caregiver is trained in how to help the patient manage side effects of treatment and symptoms such as pain and fatigue, the patient is more likely to have the energy and will to continue with treatment.
  Pain is a symptom that is a serious concern for cancer patients and for their caregivers. Most family caregivers know little about pain and how to manage it. For pain to be controlled well, the patient needs to receive the pain medicines as prescribed by the doctor. A caregiver's knowledge and beliefs about pain medicine may affect the patient's pain relief. A caregiver who is afraid the patient will become addicted or take an overdose may give the patient too little pain medicine. When the caregiver knows the facts about pain medicines and the right way to use them, the patient is more likely to have better pain control. The caregiver can talk to a doctor who is expert in treating pain and get the information and emotional help he or she needs to control the patient's pain.
  Caregivers may need to learn the following:
  • What medicines to use and how and when to give them.
  • How to tell if a medicine is working and common side effects of the medicine.
  • How to know when the medicine is causing side effects.
  The health care team also can help caregivers learn ways to manage symptoms without medicine, including the following:
  • Massage.
  • Hot or cold compresses (pads placed against the skin).
  • Helping the patient use his or her energy wisely.
  • Rest and relaxation.
  • Distraction (taking the patient's attention away from the symptom).

See the PDQ summary on Pain for more information.

Caregivers may also need information on other common side effects and symptoms, including:

• Fatigue, drowsiness, and sleep problems—See the PDQ summaries on Fatigue and Sleep Disorders.
• Nausea, vomiting, anorexia, and cachexia —See the PDQ summaries on Nausea and Vomiting and Nutrition in Cancer Care.
• Anxiety, mood disorder, and depression —See the PDQ summaries on Adjustment to Cancer: Anxiety and Distress, and Depression.

Coping Skills

Caregivers can receive support from programs that teach them ways to cope with caregiving stress. These programs give information, improve caregiving skills, and help caregivers feel in control and more hopeful. Some programs train on one topic, such as teaching the caregiver how to solve problems or manage patient symptoms, like pain. Other programs train the caregiver in several areas of caregiving, and these types of programs may help caregivers feel better overall. Talk to a member of your health care team or call your local hospital to see if these programs are offered in your area.

One program called COPE (which stands for Creativity, Optimism, Planning, and Expert information) trains caregivers in how to solve difficult caregiving problems, make plans for their individual situations, and feel more positive. This program has been shown to decrease stress in some caregivers.

The Family Caregiver Cancer Education Program teaches caregivers how to manage symptoms, communicate better, manage roles, relationships, and finances, and take care of themselves. Caregivers have more confidence and feel they learned useful information after taking this program. Over time, they report feeling healthier.

Training in specific skills helps improve quality of life for many caregivers. Programs that offer caregiver training by nurses who visit the home have worked very well. These nurses prepare patients and caregivers for changes in the level of care, teach them communication skills, visit patients at home, and make sure care continues all through the different phases of treatment.

Counseling

Counseling helps caregivers deal with the emotions that come with the demands of caregiving. The health care team can recommend support groups or refer caregivers to mental health professionals. This kind of support may lessen anxiety and depression and help the caregiver feel more positive, more able to cope, and that they have control over the situation.

Family Meetings

When taking care of a cancer patient, family members need to work together. There may be problems and conflicts in some families, and the stress of caring for a relative with cancer can bring up old issues or make new ones. These conflicts may cause communication problems within the family and with the health care team. When there are conflicts like this, it may help to have family meetings with the health care team.

During a family meeting, the whole family talks with the health care team. Family meetings help the health care team and the caregivers connect and work together. It is important to include the family spokesperson and all caregivers. While everyone may be trying to do what they think is best for the patient, family members may disagree about what this means. During family meetings, family members can talk about how they feel or decide what kind of help they can give. Each person may have certain skills to offer. Family meetings may also help with the following:

• Identify caregivers' concerns.
• Give clear information about treatment.
• Make it easier to make decisions about treatment choices and about care at the end of life.
• Make sure the caregivers know that symptoms and side effects will be controlled.
• Make sure that caregivers know that the wishes of the patient are being considered.

Family meetings are most helpful when:

• There is a clear list of what is going to be discussed.
• A member of the health care teams acts as the meeting leader.
• Family members and caregivers are given the chance to ask questions and discuss concerns.
• Family members and caregivers are free to talk about painful emotions and receive the help of trained professionals who care about them.

At the end of the meeting, the health care team may go over what was decided and plan the next steps.

Home Care Help

Home care services for the cancer patient also give the caregiver support. State or local health departments usually have a list of licensed home care agencies. Some of the services that home care agencies provide include the following:

• Visits from nurses, aides, therapists, and social workers.
• Help with running errands, making meals, and bathing.
• Delivery of medicine.
• Use of medical equipment.

Hospice Care for the Cancer Patient

Hospice care is given to patients who are near the end of life and are no longer being treated to cure or control their cancer. The goal of hospice is to help patients live each day to the fullest by making them comfortable and relieving their symptoms. Family caregivers may need more training and advice to feel comfortable doing what’s needed to care for the patient during the final stages of cancer. The family caregiver often feels as much emotional distress as the patient does during this time. A hospice care team helps with the emotional, social, and spiritual needs of patients, caregivers, and families.