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News Archive - Progress Newsletter Spring 2000 Online
FOCUSing on Family
An oncology nurse who specializes in quality-of-life research, Laurel Northouse, Ph.D., R.N., F.A.A.N. is seeking to understand how providing support for spouses and family members can improve communication and understanding, and overall quality-of-life for breast cancer patients and their families.
"Behavioral oncology, or quality-of-life regarding cancer, takes a look at how cancer affects people's physical well-being, mental well-being, functional well-being (in the sense of moving around) and social well-being," says Dr. Northouse, the newly-appointed Mary Lou Willard French Professor of Nursing. "I am really interested in issues of women's health, particularly how women who had breast cancer dealt with all of these things."
"When pursuing my Ph.D. in nursing research I looked specifically at how cancer affects the family, and we found that in some cases husbands reported as many role adjustment problems as their wives," says Dr. Northouse. "That is, they had problems carrying out their work, and their family and social relationships when their wives had breast cancer.
"We've found that we really need to assist both people."
Much of Dr. Northouse's research in this area is an intervention-based program called FOCUS. FOCUS is a family-focused program of care for women with recurrent breast cancer and their families. The program is supported by a grant from the American Cancer Society.
An intervention consists of three face-to-face home visits where a nurse and social worker meet with a breast cancer patient and her identified significant other. It could be a husband, a sister or an adult child. The visits are spaced about a month apart and are followed up by two phone calls. The interventions begin just after a women learns that she has recurrent breast cancer.
"Our FOCUS intervention consists of five components that we have found are important from our earlier research," states Dr. Northouse.
"The "F" is for family involvement. From earlier studies we have learned that how the family members support one another is very key," explains Northouse. "So we go out and encourage the family to work as a team and to work together through this. The idea is not so much just for the family to help the women, but for the women to also see they can continue to help the family. So they are working as a team to get through the illness.
"The second thing we work on is "O" for optimism, and that is not meant to be a keep-your-chin-up kind of optimism. It is really a sense of how to keep your spirits up in spite of the fact that you have this progressive disease. This includes setting realistic goals, trying to identify what you can and cannot accomplish, and similar strategies.
"The "C" stands for coping. We try to reinforce help in coping. We want to help the woman and the family members move away from those strategies that have been less helpful.
"We talk about the "U" as uncertainty reduction. What often accompanies a recurrence is this notion of uncertainty. So we work with them to try to determine what kind of information may be helpful to them and work with them in getting this information.
"The "S" is symptom management. Often when a woman has recurrent disease she has some symptoms such as pain or fatigue, either due to the progressive disease or the treatment. We get the patient to work with the family members, as well to make them understand the symptoms that the woman is experiencing, so they are working together."
Dr. Northouse's next project is to tailor the FOCUS Program for patients facing prostate cancer and their family members. She believes that some of the central components of the program that were helpful to families dealing with breast cancer will be relevant to these families. Currently, Dr. Northouse and her colleagues are conducting focus groups with men with prostate cancer and their family members to learn more about their quality-of-life issues so they can modify the FOCUS Program to address the specific needs of these families.
Although some elements of this family focus are seen in standard care already, Dr. Northouse says that often the family unit is the thing that gets looked at after everything else is done, if at all. "The goal is to get some of the things we are doing incorporated into standard care. We are seeing that family adjustment is a significant predictor of a patient's level of hopefulness, uncertainty and stress after a year of the illness. The family aspect is very important, and that is why we are trying to help the families,"she says.