Support Tool for Families of High-Risk Children With Heart Disease During Hospital Admission and After Discharge
NCT ID: NCT05926661
Last Updated: 2025-09-19
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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WITHDRAWN
NA
INTERVENTIONAL
2023-11-29
2024-04-30
Brief Summary
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Detailed Description
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In Aim 1 of the study, the investigators identified the modifiable barriers, perceived needs, and opportunities for intervention to support parents/ caregivers in meeting the care needs of the high-risk child with heart disease after discharge by conducting semi-structured qualitative interviews with parents/ caregivers and healthcare personnel. And based on participants' responses, the investigators developed a support tool to improve parent/ caregiver comfort with caring for the high-risk child and improve post discharge outcomes. The objective of this study is to pilot this support tool in 5 high-risk families in Nemours Cardiac Center and assess the acceptability and feasibility based on their experience.
Conditions
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Study Design
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NA
SINGLE_GROUP
OTHER
NONE
Study Groups
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Parent/Caregiver of high-risk children with heart disease
The parent/caregivers of high-risk children with heart disease coming to the Nemours Cardiac Center for care will be offered a "support tool" and will be asked for it's acceptance and feasibility through their experience.
NCC Support Toolkit
Pre-discharge intervention-
* Set expectations for parents/caregivers to spend time bedside and attend rounds
* iPad for the families to use the Nemours App, download education materials and Facetime communication with medical personnel.
* Download Nemours App and teach them how to use it
* Education materials- to ease the use of medications, Oxygen and feeding
* Assistance with transportation, child care, parental work schedule for discharge teaching
Post Discharge intervention (Day 1-2):
• Video/Facetime call with the family to check equipment, home environment and answer questions about medications and formula
Post discharge intervention (Day 3-7):
• Phone call to the family to ensure transportation for their first follow-up appointment, answer questions about medications, Oxygen and feeding.
Interventions
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NCC Support Toolkit
Pre-discharge intervention-
* Set expectations for parents/caregivers to spend time bedside and attend rounds
* iPad for the families to use the Nemours App, download education materials and Facetime communication with medical personnel.
* Download Nemours App and teach them how to use it
* Education materials- to ease the use of medications, Oxygen and feeding
* Assistance with transportation, child care, parental work schedule for discharge teaching
Post Discharge intervention (Day 1-2):
• Video/Facetime call with the family to check equipment, home environment and answer questions about medications and formula
Post discharge intervention (Day 3-7):
• Phone call to the family to ensure transportation for their first follow-up appointment, answer questions about medications, Oxygen and feeding.
Eligibility Criteria
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Inclusion Criteria
Exclusion Criteria
The Healthcare providers group is pre-identified and they will be invited to provide feedback through semi-structured qualitative interviews only. They will not receive any intervention. Their participation will be voluntary.
18 Years
ALL
Yes
Sponsors
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National Institute of General Medical Sciences (NIGMS)
NIH
Nemours Children's Clinic
OTHER
Responsible Party
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Deepika Thacker
Pediatric Cardiologist
Principal Investigators
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Deepika Thacker, MD
Role: PRINCIPAL_INVESTIGATOR
Nemours Children's Hospital
Locations
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Nemours Children's Hospital
Wilmington, Delaware, United States
Countries
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References
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Provided Documents
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Document Type: Informed Consent Form
Other Identifiers
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Support Tools
Identifier Type: -
Identifier Source: org_study_id
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