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Brief Title: Parent Educational Discharge Support Strategies
Official Title: Nurse-Led Parent Educational Discharge Support Strategies (PEDSS) for Children Newly Diagnosed With Cancer
Study ID: NCT03227068
Brief Summary: After the initial hospitalization, parents of children newly diagnosed with cancer assume responsibility for assessing and managing their care; however, parents are often overwhelmed with information received throughout the hospitalization and are apprehensive about caring for their child at home. Parents want concise, focused information on how to care for their child after the hospital discharge. Two parent education discharge support strategies (PEDSS) were created to use at hospital discharge. PEDSS consists of a symptom management intervention and a support for the caregiver intervention. A cluster randomized control trial will assess the effectiveness and feasibility of the two different interventions.
Detailed Description: Providing education to parents of children newly diagnosed with cancer is a primary component of nursing practice, but best practices regarding delivery of information are not known. Parents often report confusion and worry with the complexity and large volume of information received during the initial hospitalization that leads to concerns in caring for their child after discharge. In addition, the amount and content of education is not standardized across institutions. This results in considerable variability in educational practices, including symptom education. During a recent qualitative study, parents described helpful discharge education strategies as having written materials, keeping information concise, and receiving anticipatory guidance so they knew what to expect. These preferences were succinctly summarized by a mother of a child newly diagnosed with leukemia who stated "...it would be nice to have one sheet of paper that just said 'these are the signs that you're looking for at home'." The purpose of this research study is to implement and evaluate parent educational discharge support strategies (PEDSS) for parents of children newly diagnosed with cancer. Findings from this study will provide a framework for nurses to deliver concise and consistent information to parents of children newly diagnosed with cancer, and will assist parents with their child after hospital discharge. The goal of this study is to determine the effectiveness and feasibility of two parent education discharge support strategies (PEDSS - symptom management vs. PEDSS - support for the caregiver) for parents of children newly diagnosed with cancer. Specific aims of the study include: Specific Aim 1: Explore the effects of parent education discharge support strategies on childhood cancer symptoms (fever, pain, fatigue, nausea, appetite changes, and sleep problems) and parents' perception of their ability to care for their child with a new cancer diagnosis during the first two months following the initial hospital discharge. Specific Aim 2: Determine whether implementation of parent education discharge support strategies decreases unplanned utilization of healthcare services (unscheduled clinic visits, emergency room visits, unplanned hospitalizations), and preventable toxicity (malnutrition, sepsis) among children with cancer during the first two months following the initial hospitalization. Specific Aim 3: Examine the feasibility and fidelity of implementing the PEDSS at the initial hospital discharge among parents of newly diagnosed children with cancer for use through the first two months following hospital discharge at participating Magnet institutions.
Minimum Age: 3 Years
Eligible Ages: CHILD
Sex: ALL
Healthy Volunteers: No
Nicklaus Children's Hospital, Miami, Florida, United States
Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois, United States
Northwestern Central DuPage Hospital, Winfield, Illinois, United States
Maine Children's Cancer Program at Maine Medical Center, Scarborough, Maine, United States
St. Louis Children's Hospital, Saint Louis, Missouri, United States
St. Peter's University Hospital, New Brunswick, New Jersey, United States
Cohen Children's Medical Center Northwell Health, New Hyde Park, New York, United States
Levine Children's Hospital, Charlotte, North Carolina, United States
Duke University Medical Center, Durham, North Carolina, United States
Nationwide Children's Hospital, Columbus, Ohio, United States
Medical University of South Carolina Children's Hospital, Charleston, South Carolina, United States
St. Jude Children's Research Hospital, Memphis, Tennessee, United States
Children's Health System of Texas Children's Medical Center, Dallas, Texas, United States
West Virginia University Medicine, Morgantown, West Virginia, United States
University of Wisconsin Health American Children's Hospital, Madison, Wisconsin, United States
King Faisal Specialist Hospital and Research Centre-Riyadh, Riyadh, , Saudi Arabia
Name: Marilyn Hockenberry, PhD
Affiliation: Duke University
Role: PRINCIPAL_INVESTIGATOR
Name: Megan Arthur, BS
Affiliation: Duke University
Role: STUDY_DIRECTOR