U-M Cancer Center develops program with Cancer Support Community to help patients and caregivers cope
For 44 years of marriage, Karen and Larry Ganzini have balanced each other. Karen is a talker; Larry is quiet. Larry isn't keen to show his soft side; Karen feels worse when she bottles up emotions.
Nearly 10 years ago, Karen was diagnosed with breast cancer. Although Karen says that cancer almost feels like second nature now, issues due to the couple's differing communication styles have cropped up as the disease has progressed to stage IV. Karen and Larry support each other, but it was still difficult to talk about certain aspects of Karen's cancer.
When Karen learned about a new pilot program to help patients and their caregivers cope better, the Ganzinis signed up. The program was offered by the Ann Arbor branch of the Cancer Support Community, a nonprofit organization dedicated to providing education and support to people with cancer.
"I asked the question about hospice, and my husband really didn't want to go there at this point. He doesn't like to talk about the end, and I understand that," Karen said. "But I need to know what it's going to be like."
By enrolling in the pilot program, Karen got her answers, and both Ganzinis agreed that the experience helped them feel better about their situation. The program, called FOCUS, is based on University of Michigan Comprehensive Cancer Center research that has shown that patients and caregivers benefitted from meeting with a nurse to provide them with information and support.
"In our earlier studies, we found that caregivers often received more benefits from the program than patients, possibly in part because caregiver needs are not typically addressed in traditional clinic settings," said Laurel Northouse, Ph.D., R.N., co-director of Socio-Behavioral Research at the U-M Cancer Center. Caregivers reported better mental and physical quality of life, less negative views of caregiving and more active coping strategies. Both patients and caregivers reported better communication and less uncertainty about cancer.
In order to offer the program in a community setting, it has evolved to become a series of group meetings facilitated by a social worker, Northouse said.
"This is an important step to move the FOCUS program forward so that more people can benefit from it," Northouse said. "It doesn't help anyone if the results of our research just get filed away. It's really wonderful to be able to collaborate with the Cancer Support Community to implement this program."
Three or four pairs of patients and caregivers meet together in weekly two-hour group sessions for six weeks, said Bonnie Dockham, L.M.S.W., a social worker for the Cancer Support Community who is leading the pilot program. Topics of discussion include communication and coping tools, strategies for handling uncertainty, and practical concerns, such as symptom management. All participants complete surveys at the beginning, end and one month after the program to assess its impact.
If the pilot program, which is funded by the Rosalynn Carter Institute for Caregiving, is beneficial, the FOCUS program may be disseminated throughout the Cancer Support Community's 50 affiliates and 100 satellite locations nationwide.
"The program is for people who are coping well with cancer, in addition to those who may want to learn new strategies for dealing with their cancer-related stress.
We try to create a middle ground for dealing with the cancer together, as a team," Dockham said. "We talk about taking this team approach, because cancer affects the whole family."