Helping Families Cope with Cancer
The toll cancer may take on emotional, social, and physical well-being affects not only patients, but also their family members. Many caregivers have difficulty dealing with the stress caused by a loved one's cancer and need help to manage the demands of the illness. Although there is growing recognition that the family is central to the patient's recovery, there is limited information on how to help families cope with the challenges associated with family caregiving. NCI's Office of Cancer Survivorship (OCS) is supporting research on the types of psychosocial interventions that can help families manage the effects of cancer in their lives.
Dr. Northouse has conducted many studies on the impact of cancer on families. Most recently, she and her colleagues have been testing the effects of a family intervention called the FOCUS Program on the quality of life of patients and their family caregivers. The FOCUS Program consists of five sessions and is designed to help families deal with the emotional side of cancer. FOCUS stands for the core components of the intervention: family involvement, optimistic attitude, coping effectiveness, uncertainty reduction, and symptom management. The program, utilizing masters-level nurses, was originally offered to women with recurrent breast cancer and their family caregivers, and more recently is being offered to men with prostate cancer and their spouses.
A key strength of the program is promoting family communication about cancer and its effect on each person and on the family as a whole. Patients and their families are encouraged to share concerns, offer support to one another, and identify what they need from the other person.
"We've found that families really appreciate having the nurse talk with them about what it's like to deal with cancer and discuss strategies for coping with their situations," adds Dr. Northouse. "Sometimes during these discussions, it is the first time that a patient hears what his or her family member thinks about it. Cancer can be scary and threatening to many people. It is not unusual for everyone to go along, not saying anything, but also not knowing what the other person is thinking or feeling." Both patients and family members report high satisfaction with the program.
Because the nurses meet with patients and families in their homes, they are often able to address problems that can't be raised in a short clinic visit. Sometimes patients are dealing with very difficult side effects, which they may not have told their physician about and may have thought that they had to deal with on their own.
The advantage of using master's-level nurses is that they not only provide support and counseling, but also have specific physical assessment skills and can provide strategies for managing fatigue, nausea, and cancer pain. They also can refer patients and families to community resources, such as psychotherapists, sexual health counselors, or organizations that can help the family pay for medications.
In a new study, Dr. Northouse will be examining program cost, risk for distress, and two doses of family intervention. Dr. Julia Rowland, director of NCI's OCS, notes that because of their key role in patients' health outcomes, family members are included under the definition of "cancer survivors" and have been vocal champions for more caregiver research.
By Dorie Hightower