Family Home Care for Cancer

Dr. Given and colleagues developed the Partners in Care Web site to provide information, assistance, and support to family caregivers.

Most cancer patients today do not stay in a hospital while receiving chemotherapy and other cancer treatments, so partnering with the family in care is often a vital part of a cancer patient's treatment regimen.

According to Barbara Given of MSU's College of Nursing, "family caregivers are invisible to our health care system, even though they complement the formal system in an irreplaceable way. Their unpaid labor also reduces the cost of formal health care. Caregiving requires about 20 hours a week while patients are in active cancer treatment, and twice that for patients who are at the end of life." She also pointed out that "we ask these family members to provide care that we don't allow our own nursing students to do until the second or third year of their nursing program."

As a result of this extra "job," caregivers who are employed (and more than half of them are) often experience fatigue, anxiety, and depression. They may not eat well, exercise, or get enough sleep. They often forego leisure, personal, or social time. They may quit work or take early retirement in order to provide care.

Dr. Given is working to improve this difficult situation for caregivers while ensuring quality care for patients. She is an expert on home care for patients with chronic illness, particularly cancer patients. Her research has been recognized nationally and internationally. She has conducted research, written policy papers, and made presentations to the National Cancer Institute (NCI) and the Institute of Medicine, among others. She has also conducted workshops for professional groups.

"Pain and fatigue are the two most prevalent symptoms and side effects of cancer and cancer treatment, and the most difficult for patients and their family caregivers to manage," said Given. "They drive the number and severity of other symptoms, so helping patients and their families manage these symptoms is critical to both the comfort of the patient and the confidence of the caregiver."

With funding from NCI, Given and her research partner, Dr. Charles W. Given of MSU's Department of Family Practice, are implementing an earlier study in which cancer patients and their home caregivers received a series of six nurse intervention contacts over an eight-week period. The intervention comprised a series of phone calls designed to help the patients and the caregivers deal with symptom management.

The current research aims to fine-tune the number of intervention sessions and tailor the intervention specifically to both the patient's and the caregiver's needs. "Our more than 30 years of research have shown that this type of intervention can reduce the number and severity of patient symptoms, improve physical function, and reduce both patient depression and caregiver burden," Given said. "Our work has demonstrated that patients in partnership with family caregivers do benefit from specific guidance for the management of side effects from treatment. This leads to a better treatment experience overall. Patients are very satisfied with the program and suggest it be made available to all patients and families receiving chemotherapy."