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

Not Applicable
Active, not recruiting
Conditions
Empowerment
Children With Medical Complexity
Home Nursing
Invasive Mechanical Ventilation
Interventions
Behavioral: Parent-to-parent coaching
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.

Recruitment & Eligibility

Status
ACTIVE_NOT_RECRUITING
Sex
All
Target Recruitment
30
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
Arm && Interventions
GroupInterventionDescription
Parent CoachingParent-to-parent coachingParticipants 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
Primary Outcome Measures
NameTimeMethod
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
NameTimeMethod
Satisfaction with coaching programexit (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 coverageBaseline 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

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