Parent-to-parent Coaching While Awaiting Hospital Discharge With a Child With a Ventilator

Not Applicable

Completed

• Conditions: Empowerment; Children With Medical Complexity; Home Nursing; Invasive Mechanical Ventilation

• Registration Number: NCT05880953
• Lead Sponsor: University of Chicago

Brief Summary

The objective of the study is to pilot a parent-to-parent coaching model with experienced family members of children with Invasive Mechanical Ventilation (IMV) as parent coaches.

Detailed Description

The objective of the study is to pilot a parent-to-parent coaching model with experienced family members of children with IMV as parent coaches. Parent coaches will advise parents of children with IMV awaiting hospital discharge on strategies for advocating for home nursing. Parents and parent coaches will meet as needed and engagement will be tailored to parent preference: text messaging, video or phone conferencing, or in-person visiting in the family home or hospital. Points of contact, issues addressed, and time required will be collected as needs assessment data to appropriately size and scale a future intervention. Enrollment and exit assessments will include completion of the Family Empowerment Scale (FES) and a brief structured interview about parents' perceived impact and acceptability, which will provide pilot data to inform a future intervention. The investigator hypothesizes that parents will gain self-advocacy skills specific to recruiting home health nurses and improve the size of their home nursing workforce through this coaching model.

Study Timeline

• Study First Submitted: 2023-05-11
• Study First Submitted QC: 2023-05-26
• Study First Posted: 2023-05-30
• Study Start: 2023-06-12
• Primary Completion: 2025-05-09
• Study Completion: 2025-05-09
• Status Verified: 2025-07
• Last Update Submitted: 2025-07-03
• Last Update Posted: 2025-07-04

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 10

Inclusion Criteria

• Parents of children with a tracheostomy and ventilator awaiting hospital discharge in Illinois.
• Parents must live or have their child hospitalized within approximately a 1 hour radius of the University of Chicago.
• The child must be enrolled in, or in the process of enrolling in the Division of Specialized Care for Children (DSCC) Home Care Program.
• The parent/legal guardian must have legal custody of the child and plan on living with the child in the home.

Exclusion Criteria

• Wards of the state

Study & Design

• Study Type: INTERVENTIONAL
• Study Design: SINGLE_GROUP

Primary Outcome Measures

Name	Time	Method
Change in parent empowerment as measured by the family empowerment scale (FES)	Baseline and repeated at exit (either at 6 months or when parents choose to exit the study)	Parents will complete the Family Empowerment Scale (FES), a 34-item scale designed to assess empowerment in parents whose children have emotional disabilities.

Secondary Outcome Measures

Name	Time	Method
Satisfaction with coaching program	exit (either at 6 months or when parents choose to exit the study)	Parents will complete a structured interview about their satisfaction with the program.
Change in nursing coverage	Baseline and repeated at exit (either at 6 months or when parents choose to exit the study)	Parents will complete REDCap survey indicating their home nursing coverage.

Trial Locations

Locations (1)

University of Chicago; 🇺🇸 Chicago, Illinois, United States