New Research Study Could Help Parents Care for Children Diagnosed with Cancer

New Research Study Could Help Parents Care for Children Diagnosed with Cancer

Children newly diagnosed with cancer experience many distressing symptoms, including physical and emotional ones. Parents who assume responsibility after the initial hospitalization are often overwhelmed with information and apprehensive about caring for their child at home. Cheryl Rodgers, PhD, RN, CPNP, CPON, assistant professor for Duke University School of Nursing (DUSON), and Marilyn Hockenberry, PhD, RN, PVP-BC, FAAN, Bessie Baker Professor of Nursing and associate dean for Research Affairs, have been commissioned by the American Nurses Credentialing Center to perform a three-year multisite research study entitled “Nurse-Led Parent Educational Discharge Support Strategies (PEDSS) for Children Newly Diagnosed with Cancer.” The three-year study will begin early next year with an award ranging from $600,000 to $800,000 based on the number of sites that take part in the study.

“Having a child newly diagnosed with cancer is an emotional roller coaster for the entire family,” said Rodgers. “Having a process that allows parents to receive concise, focused information on how to care for their child after they are discharged from the hospital allows us to also care for the caregiver.”

Rodgers and Hockenberry collectively have more than 30 years of pediatric oncology clinical and research experience. Their previous work with a children’s oncology group led them to identify three essential factors that guided the development of this study: 1. the significant variation in what cancer care providers believe is essential for discharge teaching and how much information should be provided; 2. the common symptoms associated with all types of childhood cancer treatments that should be included in discharge education; and 3. the need for concise and consistent information for parents who will be providing care for their child at home.

More than 20 institutions will participate in the research study. These institutions will be randomized to one of two intervention studies: the PEDSS-symptom management study or the PEDSS-dealing with diagnosis study. “The effectiveness of each intervention will be determined through symptom assessments, parent insight of their ability to care for their child and the amount of unplanned service use and preventable toxicities,” Hockenberry said.

Feasibility and fidelity will be evaluated by the distribution of the interventions to parents of children newly diagnosed with cancer before the initial hospital discharge and the satisfaction rating and use of the interventions by parents two months after discharge.

Hockenberry adds: “Findings from our study will allow us to establish a framework to guide future development of educational tools for parents that are applicable to other pediatric specialties that provide care to children with illness-related distress. Children in the study may benefit from reducing symptom distress, unplanned health care service use and therapy-related toxicities.”

The benefit from the study isn’t just for parents and their children. Nurses participating in the study will gain knowledge and skills in the research process through mentored research experiences that include educational sessions and experiential learning. “Nursing practice in caring for this population will improve through the use of these interventions that will facilitate delivery of consistent and concise education to these parents,” Rodgers said.

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