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

NCT ID: NCT05880953

Last Updated: 2025-07-04

Basic Information

• Recruitment Status: COMPLETED
• Clinical Phase: NA
• Total Enrollment: 10 participants
• Study Classification: INTERVENTIONAL
• Study Start Date: 2023-06-12
• Study Completion Date: 2025-05-09

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.

Conditions

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

Study Design

• Allocation Method: NA
• Intervention Model: SINGLE_GROUP
• Primary Study Purpose: OTHER
• Blinding Strategy: NONE

Study Groups

Parent Coaching

Participants will be involved for about 6 months or until they feel that they no longer need the parent-to-parent support.

Parents will participate in the following contact attempts:

• Introductions and rapport building which will include a demographic survey with a needs assessment, and the Family Empowerment Scale (FES)
• A series of coaching points which may include some or all of the following topics

• Interviewing and selecting a home health agency
• Expectation setting for home based nursing care
• Tips for finding home health professionals from inpatient nursing
• Tips for using personal and professional care networks to find and recruit home health team members
• An exit interview assessment including the FES and components of the demographic survey that may have changed

Group Type: EXPERIMENTAL

Parent-to-parent coaching

Intervention Type: BEHAVIORAL

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.

Interventions

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.

Intervention Type: BEHAVIORAL

Eligibility Criteria

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

• Minimum Eligible Age: 18 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: Yes

Sponsors

National Institute on Minority Health and Health Disparities (NIMHD)

NIH

Sponsor Role: collaborator

University of Chicago

OTHER

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Principal Investigators

Sarah Sobotka, MD, MSCP

Role: PRINCIPAL_INVESTIGATOR

University of Chicago

Locations

University of Chicago

Chicago, Illinois, United States

Countries

United States

Other Identifiers

P50MD017349

Identifier Type: NIH

Identifier Source: secondary_id

View Link

IRB23-0348

Identifier Type: -

Identifier Source: org_study_id