Caring for the Caregivers: Nursing Researchers Study Ways to Help Spouses Who Care for Dying Cancer Patients

Caring for the Caregivers: Nursing Researchers Study Ways to Help Spouses Who Care for Dying Cancer Patients

Dec 15, 2010 10:58 AM

(SALT LAKE CITY)—University of Utah College of Nursing researchers are beginning a $7.7 million grant to study ways to help ease the difficult transitions for people who provide care at home for a dying spouse or partner and then continue on once their spouse has died.

The five-year, three-part grant, funded by the National Cancer Institute (NCI), will be led by principal investigator Kathi Mooney, Ph.D., R.N., F.A.A.N., U of U professor of nursing and an investigator with the University's Huntsman Cancer Institute. Six other researchers from the U of U nursing college, gerontology interdisciplinary program, and sociology department, as well as a California State University sociologist, also are investigators on the grant.
“The final days, weeks, and months of a dying person’s life are marked by decline and often distressing, escalating, and poorly relieved symptoms. Additionally, observing a spouse or partner in pain and, ultimately, dying is stressful for the family,” Mooney said. “Yet, the challenges continue even after the death as the bereaved individual must go on and reconstruct a new life without their spouse. The central theme of the project is to advance knowledge and interventions that improve end-of-life care and bereavement experiences for spouses providing care at home.”

Called a Program Project Grant or PO1, the award comes through the NCI from the National Institutes of Health. Such grants are given for broadly based multidisciplinary research with a well defined focus and objective. According to College of Nursing Dean Maureen R. Keefe, R.N., Ph.D., F.A.A.N., the grant is the college’s first PO1 award and represents the largest research grant in the history of the program. “Receiving the PO1 award has taken us to a whole new level of funding and national prestige,” she says.

The study comprises three interrelated components, plus a shared core for participant recruitment, data collection, and analysis.
The first component study, also led by Mooney, will evaluate an automated telephone-based symptom monitoring system developed by Mooney along with Susan Beck, Ph.D., A.P.R.N., F.A.A.N., professor of nursing, and Pat Berry, Ph.D., A.P.R.N,, F.A.A.N., associate professor of nursing. The family caregiver calls the system daily and is asked about common symptoms their spouse is likely experiencing as well as reporting on their own coping and distress with care-taking issues. The system automatically sends information about unrelieved symptoms in an alert to the patient’s hospice nurse so that the nurse can respond with improved symptom management. In addition, the automated telephone system provides the spouse with care-giving hints and coaching tailored to the exact symptom profile reported. The information and strategies provided are designed to boost the spouse’s skill and confidence in care giving and also encourage them to take care of themselves.
The second study, led by Lee Ellington, Ph.D., associate professor and member of the Huntsman Cancer Institute, will examine communication patterns between the hospice nurses and spouse caregivers.  Working with Ellington is Mardie Clayton, Ph.D., assistant professor of nursing. These investigators will examine how nurse communication with the caregiver changes over time related to the physical, psychological and spiritual aspects of care giving and how communication impacts caregiver coping and bereavement. In partnership with local participating hospices, the team has successfully completed pilot work demonstrating that audio taping of nurse home visits can open the “black box” of home hospice communication.

The third component, co-led by Michael Caserta, Ph.D., professor in the college of nursing’s gerontology interdisciplinary program and associate of the University’s Center on Aging, and Dale Lund, Ph.D., professor and chair of sociology at California State University, San Bernardino, along with Rebecca Utz, Ph.D, assistant professor of sociology at  the U of U, will evaluate a 14-week personalized bereavement program for the spouse once their partner has died.  Through telephone-delivered grief support and face-to-face education and skills training, the program will help spouses confront the emotional aspects of bereavement and develop new life skills needed for living alone. The weekly sessions are individually tailored to address those challenges presenting the most difficulty and distress for each of the bereaved participants.

“In addition to the wealth of knowledge that will come from each of the individual studies, this project allows for ground-breaking long-term study of how improved care during the dying process might lead to positive bereavement outcomes, as well as how pre-death care giving and hospice nurse involvement may accelerate healthier bereavement transitions,” Mooney said.

Other U of U researchers on the grant team include Kathie Supiano, M.S, L.C.S.W., assistant professor of nursing, and Gary Donaldson, Ph.D., professor of anesthesiology.

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