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.
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.
Study Type
INTERVENTIONAL
Allocation
RANDOMIZED
Purpose
SUPPORTIVE_CARE
Masking
NONE
Enrollment
289
All subjects will receive education regarding their specific disease and treatment in accordance with current practices. Cancer care providers describe detailed side effects of treatment to parents during the treatment consent process. In addition, all parents will receive standard discharge education before hospital discharge, which includes a list of home medications and information regarding whom to call for emergencies. The PEDSS - symptom management will be delivered prior to the initial hospital discharge. The nurse will review the symptom management worksheet verbally with the parent, then distribute the written worksheet to the parent.
All subjects will receive education regarding their specific disease and treatment in accordance with current practices. Cancer care providers describe detailed side effects of treatment to parents during the treatment consent process. In addition, all parents will receive standard discharge education before hospital discharge, which includes a list of home medications and information regarding whom to call for emergencies. The PEDSS - support for the caregiver will be delivered prior to the initial hospital discharge. The nurse will review the worksheet verbally with the parent, then distribute the written worksheet to the parent.
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
St 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
...and 6 more locations
Change from baseline pain severity to two months
Wong-Baker Faces Scale
Time frame: At baseline and monthly for two additional months
Change from baseline fatigue severity to two months
Categorized as none to mild or moderate to severe from the Adolescent Fatigue Scale for adolescents 13-17 years of age, the Childhood Fatigue Scale for children 7-12 years of age, or the Parent Fatigue Scale to obtain proxy responses from parents of children \< 7 years of age
Time frame: At baseline and monthly for two additional months
Change from baseline nausea severity to two months
Visual Analogue Scale in the form of a thermometer that rates the severity of nausea from 0-100
Time frame: At baseline and monthly for two additional months
Change from baseline appetite changes to two months
Simplified Nutritional Appetite Questionnaire, 4-item asking about child's appetite and rated on a 5-point Likert Scale
Time frame: At baseline and monthly for two additional months
Change from baseline sleep disturbances to two months
The Sleep Wake Scale
Time frame: At baseline and monthly for two additional months
Change from baseline pain behavior to two months
PROMIS® Pediatric - Pain Behavior Short Form
Time frame: At baseline and monthly for two additional months
Change of baseline parents' perception of their ability to care for their child with a new cancer diagnosis to two months
Seven items asking the parent to rate perceptions of the care of their child's symptoms on a 5-point Likert scale
Time frame: At baseline and monthly for two additional months
Unplanned utilization of healthcare services
Combined frequency of the number of unscheduled clinic visits, emergency room visits, and unplanned hospitalizations
Time frame: At one and two months from start of study
Change in baseline nutritional status to two months
Body mass index
Time frame: At baseline and monthly for two additional months
Sepsis
Frequency of septic events over the past month
Time frame: At one and two months from start of study
PEDSS intervention feasibility
Nurse documentation of completion of PEDSS discussion and distribution of PEDSS worksheet
Time frame: At baseline
PEDSS intervention satisfaction
Descriptive items asking about timing of intervention and frequency of intervention use then 6 items scored on a 5-point Likert scale asking about ease of use and satisfaction.
Time frame: At two months after intervention delivery
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