Parent Educational Discharge Support Strategies



Status:Recruiting
Healthy:No
Age Range:3 - 17
Updated:8/2/2018
Start Date:December 29, 2017
End Date:June 2020
Contact:Megan Arthur
Email:megan.arthur@duke.edu
Phone:919-684-4025

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Nurse-Led Parent Educational Discharge Support Strategies (PEDSS) for Children Newly Diagnosed With Cancer

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.

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
We found this trial at
16
sites
Saint Louis, Missouri 63110
Principal Investigator: Emily Daut, RN, MSN, PPCNP-BC, CPHON
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Saint Louis, MO
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700 Childrens Drive
Columbus, Ohio 43205
(616) 722-2000
Principal Investigator: Micah A. Skeens, PhD(c), RN, MS, PNP
Nationwide Children's Hospital At Nationwide Children’s, we are creating the future of pediatric health care....
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from
Columbus, OH
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262 Danny Thomas Pl
Memphis, Tennessee 38105
(901) 495-3300
Principal Investigator: Belinda Mandrell, PhD, RN, CPNP
St. Jude Children's Research Hospital St. Jude is unlike any other pediatric treatment and research...
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mi
from
Memphis, TN
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Charleston, South Carolina 29425
Principal Investigator: Amanda Atkinson, BSN, RN, CPHON
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mi
from
Charleston, SC
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Charlotte, North Carolina 28204
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mi
from
Charlotte, NC
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225 E Chicago Ave
Chicago, Illinois 60611
(312) 227-4000
Principal Investigator: Maureen Haugen, RN, MS, CPNP
Ann & Robert H. Lurie Children's Hospital of Chicago Ann & Robert H. Lurie Children
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mi
from
Chicago, IL
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1935 Medical District Drive
Dallas, Texas 75235
Principal Investigator: Lindsey Patton, MSN, RN, PCNS-BC
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mi
from
Dallas, TX
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2301 Erwin Rd
Durham, North Carolina 27710
919-684-8111
Principal Investigator: Nichol Harris, RN, MSN, CPNP-AC/PC
Duke Univ Med Ctr As a world-class academic and health care system, Duke Medicine strives...
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mi
from
Durham, NC
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1675 Highland Avenue
Madison, Wisconsin 53792
Principal Investigator: Kitty Montgomery, PhD, RN, PCNS-BC, CPHON
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mi
from
Madison, WI
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Miami, Florida 33155
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mi
from
Miami, FL
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1 Medical Center Drive
Morgantown, West Virginia 26506
Principal Investigator: April Shay, MSN, RN, PPCNP-BC
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mi
from
Morgantown, WV
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New Brunswick, New Jersey
Principal Investigator: Pamela Harmon, MSN, RNC-NIC, CNML
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mi
from
New Brunswick, NJ
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New Hyde Park, New York 11040
Principal Investigator: Jennifer Darcy, PhD, RN, PNP-BC
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mi
from
New Hyde Park, NY
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Riyadh, 12713
Principal Investigator: Amer Ahmad, RN, BSN
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mi
from
Riyadh,
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100 Campus Drive
Scarborough, Maine 04074
Principal Investigator: Nancy Matteson, BSN, RN, CPON, CRNI
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mi
from
Scarborough, ME
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25 N Winfield Road
Winfield, Illinois 60190
Principal Investigator: Katherine Trimble, MSN, RN, CPNP, CPHON
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from
Winfield, IL
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