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

The University of Chicago

Status: Active, not recruiting

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

Treatments: Behavioral: Parent-to-parent coaching

Study type: Interventional

Funder types: Other; NIH

Identifiers

NCT05880953

P50MD017349 (U.S. NIH Grant/Contract)

IRB23-0348

Details and patient eligibility

About

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.

Full 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.

Enrollment: 30 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

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

Trial design

Primary purpose: Other

Allocation: N/A

Interventional model: Single Group Assignment

Masking: None (Open label)

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30 participants in 1 patient group

Parent Coaching

Experimental group

Description:

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

Treatment:

Behavioral: Parent-to-parent coaching