Parent Educational Discharge Support Strategies

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.

Inclusion Criteria:

- A parent (referred to as "parent" but includes a parent or legal guardian) of a
patient 3 to 17 years of age who is newly diagnosed with any type of malignant disease
on an inpatient oncology unit

- Must speak English, Spanish, or Arabic

- Child will be or is receiving chemotherapy and/or radiation therapy

Exclusion Criteria:

- A parent of a child diagnosed with histiocytosis or any hematological disease
considered non-malignant

- A parent whose child received the initial cancer diagnosis and initial cancer
treatment while hospitalized on a non-oncology unit (i.e., surgical ward)

- A parent of a child who is experienced a relapse of a malignant disease

- A parent who is the primary caregiver of the child with cancer and is illiterate