Research will look for ways to help family members immediately after diagnosis is made
Most cancer research today focuses on finding new ways to treat the devastating disease. But cancer specialists at the University of Maryland Greenebaum Cancer Center are also conducting research of a different sort: They are beginning a new study, with the University of Kentucky Markey Cancer Center, that looks at the effect of cancer on family members and other caregivers, starting at diagnosis.
With better treatment, many cancer patients are living longer, and family members end up shouldering even more of the emotional and financial burden of caring for their loved ones at home, says William F. Regine, M.D., the lead investigator at the University of Maryland Greenebaum Cancer Center.
"I think we have made considerable strides in treating the patient as a whole," says Dr. Regine, who is chief of radiation oncology at the University of Maryland Medical Center and professor and chairman of the Department of Radiation Oncology at the University of Maryland School of Medicine. "But what about the ripple effect on the people surrounding the patient the spouses, parents, sons and daughters? They also experience a tremendous amount of emotional, financial and social stress with a cancer diagnosis."
"Family members often suffer as much depression and distress as the patient, some even more so," adds Joseph Gaugler, Ph.D., a developmental psychologist who is the lead investigator at the University of Kentucky Markey Cancer Center. "There is a relative lack of services for family members who have to deal with cancer."
Drs. Gaugler and Regine say the new study is designed to identify stress factors and to find ways to help caregivers from the time the cancer is first diagnosed. "We want to develop interventions to minimize the stress on family members. You hear about support groups, but most support groups are designed to help the patients, usually after they have received treatment," Dr. Regine says. "We need to also focus on the caregivers."
Much of the research dealing with stress on caregivers has dealt with family members taking care of individuals with Alzheimer's disease, according to Dr. Gaugler, who has been involved in such research himself. Fewer studies have looked at the effect on cancer caregivers, but the new research will involve a larger group of people who will be followed over a period of time, Dr. Gaugler says.
The researchers hope to enroll 400 people in the study, drawing from caregivers with relatives being treated at the two cancer centers and the Baltimore VA Medical Center. The study will also draw participants from radiation oncology practices affiliated with the Greenebaum Cancer Center in Columbia and Olney, Md. Dr. Gaugler has already collected some preliminary data on caregivers of cancer patients who were seen at the University of Kentucky Radiation Medicine Clinic in Lexington, Ky.
Those who take part in the study will answer a series of questions about the kind of stress they have encountered taking care of a cancer patient. Many of the questions focus on how they feel about being a caregiver and what effect it has on their financial, emotional and physical well-being. Do they lack patience with their loved one? Are they exhausted when they go to bed at night? Is there a financial strain on the family? Do they feel abandoned?
Dr. Regine says that answering the questions will take about 30 minutes. If it appears that a caregiver needs help immediately, they will be referred to the appropriate program or service, so that they can talk to a social worker or meet with a chaplain.
The University of Maryland Medical Center also has a hospital-wide palliative care program that helps patients and their families dealing with life-altering or terminal illnesses. The palliative care team is comprised of a physician, Carla S. Alexander, M.D., who serves as medical director, a full-time social worker, chaplain and nurse. Leaders of the new study hope the data they obtain will give the palliative care program more information to help them better serve cancer caregivers.
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