Parent Educational Discharge Support Strategies

NCT ID: NCT03227068

Last Updated: 2020-06-30

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

Get a concise snapshot of the trial, including recruitment status, study phase, enrollment targets, and key timeline milestones.

Recruitment Status

COMPLETED

Clinical Phase

NA

Total Enrollment

289 participants

Study Classification

INTERVENTIONAL

Study Start Date

2017-12-29

Study Completion Date

2020-06-29

Brief Summary

Review the sponsor-provided synopsis that highlights what the study is about and why it is being conducted.

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

Dive into the extended narrative that explains the scientific background, objectives, and procedures in greater depth.

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.

Conditions

See the medical conditions and disease areas that this research is targeting or investigating.

Educational Activities

Study Design

Understand how the trial is structured, including allocation methods, masking strategies, primary purpose, and other design elements.

Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

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.
Primary Study Purpose

SUPPORTIVE_CARE

Blinding Strategy

NONE

Study Groups

Review each arm or cohort in the study, along with the interventions and objectives associated with them.

PEDSS - symptom management

Content for the PEDSS - symptom management includes the most commonly experienced treatment-related physical symptoms, descriptions of each symptom, strategies to reduce symptom distress, and when and how to contact the cancer care team.

Group Type EXPERIMENTAL

PEDSS - symptom management

Intervention Type OTHER

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.

PEDSS - support for the caregiver

Content for the PEDSS - support for the caregiver includes five topics and suggestions on how caregivers can care for themselves during this time.

Group Type EXPERIMENTAL

PEDSS - support for the caregiver

Intervention Type OTHER

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.

Interventions

Learn about the drugs, procedures, or behavioral strategies being tested and how they are applied within this trial.

PEDSS - symptom management

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.

Intervention Type OTHER

PEDSS - support for the caregiver

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.

Intervention Type OTHER

Eligibility Criteria

Check the participation requirements, including inclusion and exclusion rules, age limits, and whether healthy volunteers are accepted.

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
Minimum Eligible Age

3 Years

Maximum Eligible Age

17 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

Meet the organizations funding or collaborating on the study and learn about their roles.

Children's Health System of Texas Children's Medical Center

UNKNOWN

Sponsor Role collaborator

Cohen Children's Medical Center

OTHER

Sponsor Role collaborator

Levine Children's Hospital

OTHER

Sponsor Role collaborator

Lurie Children's Hospital of Chicago

UNKNOWN

Sponsor Role collaborator

Maine Children's Cancer Program at Maine Medical Center

UNKNOWN

Sponsor Role collaborator

Medical University of South Carolina Children's Hospital

UNKNOWN

Sponsor Role collaborator

Nationwide Children's Hospital

OTHER

Sponsor Role collaborator

Northwestern Medicine Central DuPage Hospital

UNKNOWN

Sponsor Role collaborator

St. Jude Children's Research Hospital

OTHER

Sponsor Role collaborator

St. Louis Children's Hospital

OTHER

Sponsor Role collaborator

St. Peter's University Hospital

UNKNOWN

Sponsor Role collaborator

University of Wisconsin Health American Children's Hospital

UNKNOWN

Sponsor Role collaborator

West Virginia Univeristy Medicine

UNKNOWN

Sponsor Role collaborator

King Faisal Specialist Hospital & Research Center

OTHER

Sponsor Role collaborator

Nicklaus Children's Hospital

UNKNOWN

Sponsor Role collaborator

Duke University

OTHER

Sponsor Role lead

Responsible Party

Identify the individual or organization who holds primary responsibility for the study information submitted to regulators.

Responsibility Role SPONSOR

Principal Investigators

Learn about the lead researchers overseeing the trial and their institutional affiliations.

Marilyn Hockenberry, PhD

Role: PRINCIPAL_INVESTIGATOR

Duke University

Megan Arthur, BS

Role: STUDY_DIRECTOR

Duke University

Locations

Explore where the study is taking place and check the recruitment status at each participating site.

Nicklaus Children's Hospital

Miami, Florida, United States

Site Status

Ann and Robert H. Lurie Children's Hospital of Chicago

Chicago, Illinois, United States

Site Status

Northwestern Central DuPage Hospital

Winfield, Illinois, United States

Site Status

Maine Children's Cancer Program at Maine Medical Center

Scarborough, Maine, United States

Site Status

St. Louis Children's Hospital

St Louis, Missouri, United States

Site Status

St. Peter's University Hospital

New Brunswick, New Jersey, United States

Site Status

Cohen Children's Medical Center Northwell Health

New Hyde Park, New York, United States

Site Status

Levine Children's Hospital

Charlotte, North Carolina, United States

Site Status

Duke University Medical Center

Durham, North Carolina, United States

Site Status

Nationwide Children's Hospital

Columbus, Ohio, United States

Site Status

Medical University of South Carolina Children's Hospital

Charleston, South Carolina, United States

Site Status

St. Jude Children's Research Hospital

Memphis, Tennessee, United States

Site Status

Children's Health System of Texas Children's Medical Center

Dallas, Texas, United States

Site Status

West Virginia University Medicine

Morgantown, West Virginia, United States

Site Status

University of Wisconsin Health American Children's Hospital

Madison, Wisconsin, United States

Site Status

King Faisal Specialist Hospital and Research Centre-Riyadh

Riyadh, , Saudi Arabia

Site Status

Countries

Review the countries where the study has at least one active or historical site.

United States Saudi Arabia

Other Identifiers

Review additional registry numbers or institutional identifiers associated with this trial.

Pro00077090

Identifier Type: -

Identifier Source: org_study_id

More Related Trials

Additional clinical trials that may be relevant based on similarity analysis.