ANN ARBOR—Caregivers of friends and family members diagnosed with cancer need care too, a University of Michigan researcher says.

“When someone we love has a familiar disease like a cold, we generally know what to do. It’s very hard for families to know what to do in the face of a complex, life-threatening disease. Families often feel powerless,” said Laurel Northouse, a University of Michigan professor of nursing and co-director of the Socio-Behavioral Program at the U-M Comprehensive Cancer Center.

Often, family members find themselves drafted for informal health care, emotional support and daily responsibilities the patient can’t handle. They also have their own anxiety and stress levels about the disease to manage.

Northouse’s article, “Helping Families of Patients with Cancer,” appears in the current issue of Oncology Nursing Forum. It is based on the keynote address she gave at the Eighth National Conference on Cancer Nursing Research earlier this year.

Northouse has studied the effects of cancer on families for 20 years, and the article highlights some of her findings and research projects.

“The family does affect the patient — each affects the other,” she said.

She collaborated with investigators from Wayne State University and other cancer centers to develop a family intervention program called the FOCUS Program. The program was initially offered to women with recurrent breast cancer and a family caregiver.   During the program, nurses with master’s degrees met with families in their homes and followed up with phone calls.

In these sessions, the nurses looked for ways to manage the illness and improve quality of life both for the patient and the caregiver. Sometimes that meant helping identify resources to help with in-home medical care or facilitating difficult conversations about the patient’s wishes for care.

In a study published earlier this year in Psycho-Oncology, she reported that both the patients and their caregivers noted a more positive appraisal of the illness and caregiving, and patients reported less hopelessness about their recurrent breast cancer after participating in the program.

“We are filling in a gap of dealing with the emotional side of cancer,” Northouse said. “Communication is a really tricky part of it.”

The research team has adapted the program to the needs of men with prostate cancer and their partners. Currently 263 men and their partners are participating in this study, which is funded by the National Cancer Institute. The study is nearing completion, and no outcome data is available yet.

The team is starting a third program. This study, also funded by the National Cancer Institute, will involve more than   400 patients with advanced lung, colorectal, prostate or breast cancer and one of their family caregivers.

Researchers will try to understand the differences in families where the patient is male versus female, and they’re also looking at the effectiveness of a shorter program of three sessions compared to a set of six sessions.

They are doing a cost study to determine if the intervention program might save health care dollars by encouraging families to address problems before they become more complex and costly.

“We are waiting to see what portion of this family-based approach might be beneficial to move into standard care or to offer as an extra resource to families coping with cancer,” Northouse said. She added that in the current health care environment, when clinicians are under pressure to limit time spent on office visits, the home visits with nurses offer a more in-depth opportunity to discuss health in a holistic way.

Northouse is a member of the new Michigan Center for Health Intervention, a collaboration between the schools of Nursing and Public Health, recently funded by the National Institutes of Health. The center aims to test behavioral treatments rigorously to determine the best ways to deliver patient care.