A terminal cancer diagnosis often focuses on the emotional and physical needs of the patient, yet the family members who care for the person also face a challenging, life-changing journey.

A new study at Huntsman Cancer Institute (HCI) combines oncology, psychology, and bereavement research to identify ways to improve end-of-life symptom management and support for the families who care for patients.

“What’s unique about our project is that we’re studying interventions beginning when the family caregiver and patient start hospice care, and following the caregiver for up to fourteen months after the patient’s death,” says Kathleen H. Mooney, PhD, RN, professor in the College of Nursing at the University of Utah who holds the Louis S. Peery, MD, and Janet B. Peery Presidential Endowed Chair in Nursing. “Most research in this field either studies just the dying process, or starts after death has occurred. It has never been studied as the true continuous journey that it is for the family.”

Lee Ellington, PhD; Kathleen Mooney, PhD, RN; and Michael Caserta, PhD

HCI researchers strive to understand and meet the dynamic medical and psychosocial needs of those in the cancer care continuum. Mooney, a member of HCI’s Cancer Control and Population Sciences Program, has a long-standing interest in cancer symptom management that was an ideal match when a colleague planted the idea to pursue a research program project grant (PPG) through the National Cancer Institute. This type of grant is unique because it combines multidisciplinary research programs that directly relate and contribute to a focused, overarching theme.

Mooney is the principal investigator of the PPG, which comprises three individual yet interdependent research projects.

“This is team science,” says Mooney. “This group approach encourages ideas and answers questions that one study alone wouldn’t be able to.”

The first project, Symptom Care by Phone (SCP), tests an automated telecommunication system that assesses the severity of physical and psychological symptoms common to patients at end-of-life and their caregivers, such as difficulty sleeping and anxiety. Caregivers will call the SCP on a daily basis to report their symptoms, at which point the system sends an electronic alert to the hospice nurse. Based on the symptoms reported, hospice nurses then respond to the caregiver with tailored management strategies. Mooney, who oversees this project, anticipates the intervention will boost caregiver confidence, ease patient and caregiver symptoms, and improve overall quality of life for caregivers during end-of-life care and into bereavement.

The second project, Nurse Caregiver Communication, will audio record communication between hospice nurses and caregivers during home visits. These interactions will be analyzed and coded to help improve nurse-patient communication. Mooney envisions the findings of this project will help support caregivers in having their needs met, and could augment hospice nurse training programs. This portion of the study is led by Lee Ellington, PhD, associate professor in the College of Nursing and a clinical psychologist whose research focus is patient-provider communication.

“We want to learn how nurses can address the varying informational, physical, and emotional concerns of caregivers during the final stages of the patient’s life,” says Ellington. “Nurses who are responsive to the specific needs of each caregiver may help ease the bereavement process and other life transitions.”

The third project, Dual Process Model (DPM), will test an individually tailored method to support bereaved spouse caregivers. It will specifically address two coping processes: emotional grieving response and ability to function and carry on with daily life.

“We hope to learn even more what challenges pose the most difficulty for bereaved caregivers and to determine the most effective ways to address them,” says Michael Caserta, PhD, professor in the Gerontology Interdisciplinary Program in the College of Nursing and a Robert L. and Joyce T. Rice Presidential Endowed Chair in Healthy Aging. Caserta co-leads the DPM portion of the study with Dale Lund, PhD, a sociology researcher at California State University, San Bernardino.

When Mooney approached Ellington and Caserta about applying their areas of research expertise, she says they were eager to collaborate.

“Collaboration of people with different ideas and backgrounds makes us really enthusiastic about this research,” says Mooney. “We feel confident this work can improve end-of-life care and bereavement support for family caregivers, both immediately and long term.”