The researchers at the University of Michigan Comprehensive Cancer Center carried out a research to find what really influenced emotional distress among patients and their spouses - whether the patient was newly diagnosed, facing a recurrence or living with advanced disease.
To find out, participants were recruited from three large cancer centers where researchers looked at 263 men with prostate cancer and their spouses. The couples completed questionnaires that assessed quality of life, including physical, social, family, emotional and functional issues. Patients and spouses reported on their quality of life separately.
After the assessment, researchers found little difference in quality of life between patients and spouses, but found significant differences based on the phase of their illness. Couples coping with advanced disease had significantly poorer overall quality of life.
"The spouses of advanced cancer patients are really carrying the load. Cancer is a devastating illness, and a patient's primary resource is the partner, who often doesn't have the information she needs to deal with these complex problems. This isn't just a common cold - this is the person you love and care about dealing with a life-threatening illness," 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, said.
The result of the assessment also reported lower confidence in spouses than patients in their ability to manage the illness, and more uncertainty about the illness. Patients also reported more social support than did spouses.
"Doctors, nurses and even family and friends often focus mainly on the patient who has cancer and don't realize the illness has enormous ramifications on the family, especially the spouse," Northouse said.
Phase of illness plays large role in distress; therefore researchers have recommended more health care interventions targeted at emotional distress for both patients and caregivers. At the same time, caregivers should recognize they too are emotionally affected by this illness and seek appropriate support. Patients also can play a role by encouraging their spouse to be actively involved in their care.
"Patients need to recognize this illness affects their partners as well as themselves. They need to find a way to be supportive of their partner; for example, including them in interactions with physicians so the partners get the information they desperately want. Work as a team together to deal with the illness. I think patients may underestimate the needs of their partners to get information. Those partners need first-hand information. If they're able to go into the consultation, they're able to get their questions answered,"
Results of the study appear in the Sept. 20 issue of the Journal of Clinical Oncology