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

Empowerment Clinical Trial

Official title:

Parent-to-parent Coaching While Awaiting Hospital Discharge With a Child With a Ventilator: an Empowerment Model for Home Health Nurse (HHN) Advocacy

Clinical Trial Details — Status: Recruiting

Administrative data

• NCT number: NCT05880953
• Other study ID #: IRB23-0348
• Secondary ID: P50MD017349
• Status: Recruiting
• Phase: N/A
• Start date: June 12, 2023
• Est. completion date: April 30, 2025

Study information

• Verified date: May 2024
• Source: University of Chicago
• Contact: Emma Lynch, MPH
• Phone: 7737026461
• Email: elynch1[@]bsd.uchicago.edu
• Is FDA regulated: No
• Study type: Interventional

Clinical Trial 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.

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.

Recruitment information / eligibility

• Status: Recruiting
• Enrollment: 30
• Est. completion date: April 30, 2025
• Est. primary completion date: April 30, 2025
• Accepts healthy volunteers: Accepts Healthy Volunteers
• Gender: All
• Age group: 18 Years and older

Eligibility

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

Related Conditions & MeSH terms

• Children With Medical Complexity
• Empowerment
• Home Nursing
• Invasive Mechanical Ventilation

Intervention

Behavioral:
• Parent-to-parent coaching
Parents and parent coaches will meet as needed via the family's preferred method. Engagement may include text messaging, phone conferencing, Zoom conferencing, or occasional in-home or hospital visiting as preferred. Coaching sessions will vary based on family desired frequency and location, but may include: on-site in the family home or hospital room, telephone or video conferencing, or asynchronous contacts via email or text messaging. The template for the intervention includes an initial introductory session which is intended to build rapport and orient the parent to our program. Subsequent session topics may include: addressing specific needs including topics of interviewing and selecting home health agencies, expectation setting for home based nursing care, recruiting for home health team from inpatient settings, and recruiting for home health team from professional and personal networks.

Locations

Country	Name	City	State
United States	University of Chicago	Chicago	Illinois

Sponsors (2)

Lead Sponsor	Collaborator
University of Chicago	National Institute on Minority Health and Health Disparities (NIMHD)

Country where clinical trial is conducted

United States, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	Change in parent empowerment as measured by the family empowerment scale (FES)	Parents will complete the Family Empowerment Scale (FES), a 34-item scale designed to assess empowerment in parents whose children have emotional disabilities.	Baseline and repeated at exit (either at 6 months or when parents choose to exit the study)
Secondary	Change in nursing coverage	Parents will complete REDCap survey indicating their home nursing coverage.	Baseline and repeated at exit (either at 6 months or when parents choose to exit the study)
Secondary	Satisfaction with coaching program	Parents will complete a structured interview about their satisfaction with the program.	exit (either at 6 months or when parents choose to exit the study)