As cancer care begins to address the emotional needs of patients, a new study from researchers at the University of Michigan Comprehensive Cancer Center shows that it’s important to address the caregiver’s emotional needs as well.
Researchers found that a targeted intervention aimed at prostate cancer patients and their caregiver spouses provided significant improvements for the spouse in physical and emotional quality of life.
“We need to provide more care and concern to the family caregiver of cancer patients. They have a vital role. We can no longer leave them in the waiting room or on the sidelines,” says lead study author Laurel Northouse, Ph.D., R.N., co-director of the Socio-Behavioral Program at the U-M Comprehensive Cancer Center and Mary Lou Willard French Professor of Nursing at the U-M School of Nursing.
Results of the study appear Nov. 12 in the early online version of the journal Cancer. The study will be published in the journal’s Dec. 15 print edition.
The study looked at 235 men with prostate cancer and their spouses. Patients and spouses completed a series of questionnaires addressing physical and emotional health at the start of the study, and again at four months, eight months and 12 months later.
The couples were randomly assigned to receive standard clinical care with or without a special family-based intervention. The intervention, called the FOCUS Program, included three 90-minute home visits by nurses and two 30-minute phone sessions over the course of four months.
FOCUS was developed by U-M researchers and addresses five areas: family involvement, optimistic attitude, coping effectiveness, uncertainty reduction and symptom management. Interventions were designed to encourage communication between the couple, reduce stress and improve coping skills.
The researchers found that while patients reported some improvements after the FOCUS intervention, the spouses had significantly more benefit.
Spouses who completed the intervention had better physical quality of life eight months and a year later compared to spouses who did not complete the intervention. The intervention spouses also had less uncertainty, a better attitude toward caregiving and less hopelessness than spouses who did not complete the intervention. The intervention spouses were more confident about managing the illness and had better communication with their husbands.
“The intervention had a stronger effect on the caregiver than the patient because the spouse caregiver had a greater need for support. Typically, the patient gets supportive services at the clinic, from the doctor and nurses, or through support groups available to patients. Caregivers’ needs are seldom addressed by these services,” Northouse says.
Northouse’s previous research has shown caregivers report similar emotional distress as cancer patients. She’s found that spouses have lower confidence than patients in their ability to manage the illness, and more uncertainty about the illness. But despite the need for support, few interventions or support programs are aimed at couples or the spouses of cancer patients.
“Prostate cancer is a couples disease – it affects both the patient and the spouse. Including the spouse is very important because men with prostate cancer typically rely solely on their partner for support to get through the illness. But we know that spouses often don’t have the kind of information they need to deal with the cancer and the very serious side effects that can accompany the illness and treatments,” Northouse says.
“It’s very stressful to be a caregiver and not feel prepared for that important role. And the more caregivers feel distressed, the more difficult it is to be a good provider to the patient,” Northouse adds.