Parent Educational Discharge Support Strategies
Condition: Educational Activities
Study type: Interventional

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.
    

Intervention name(s): PEDSS - symptom management; PEDSS - support for the caregiver
Intervention type(s): Other; Other
Intervention description(s): 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.
Allocation: Randomized
Intervention model: Parallel Assignment
Intervention model description: All subjects in both groups 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 including a list of home medications, and information regarding whom to call for emergencies. The PEDSS - symptom management and PEDSS - support for the caregiver are additional tools designed to reinforce care after the initial hospital discharge.
Masking: None (Open Label)
Primary purpose: Supportive Care
Keywords: pediatric oncology; parent