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Completed

NCT Number: NCT05880953

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

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.

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Key information

Conditions

Invasive Mechanical Ventilation Behavior Children with Medical Complexity Empowerment Home Nursing Social Behavior

Age range

18 year and older

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

University of Chicago

Chicago, Illinois, 60637, United States

About this study

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.

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Parent-to-parent coaching

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.

Primary outcomes

  1. Change in Parent Empowerment as Measured by the Family Empowerment Scale (FES)

    Time frame: Baseline and repeated at exit (length of program involvement was median (range) 6 (2-8) months)

    Parents completed the Family Empowerment Scale (FES), a 34-item Likert-scale questionnaire with three domains: family, service system, and community. Scores on the FES range from 1 (not true at all) to 5 (very true), with higher scores indicating greater self-perceived advocacy skills, confidence in navigating systems and community resources, and ability to engage in decision making for their child. The FES has been tested for reliability (0.87-0.88) and internal consistency for test-test reliability (0.77-0.85). The FES had been used previously to characterize changes in empowerment after an advocacy intervention for parents of children with disabilities. The maximum potential total score being 170 and the minimum being 34. We compared scores between enrollment and exit and report the median(IQR) change in score over the study period.

Secondary outcomes

  1. Number of Participants That Completed Nursing Agency Selection

    Time frame: At study exit (length of program involvement was a median (range) 6 (2-8) months)

    Parents will have selected a nursing agency for the home health nursing care of their child.

  2. Categorical Rating of Met Nursing Needs

    Time frame: At study exit (length of program involvement was a median (range) 6 (2-8) months)

    Participants were asked to rate their perception of met nursing needs (Not staffed, somewhat staffed, mostly staffed, or fully staffed).

  3. Days Per Week Where at Least One Home Health Nursing Shift Was Filled

    Time frame: At study exit (length of program involvement was a median (range) 6 (2-8) months)

    At exit from the study participants were asked how many days per week they have a filled nursing shift. We counted each day with at least one nursing shift filled as a day with home health nursing.

  4. Satisfaction With Coaching Program

    Time frame: At study exit (length of program involvement was median (range) 6 (2-8) months)

    Parents will complete a structured interview about their experience with the parent to parent coaching program and likelihood of recommending it to a family in a similar circumstance.

Sponsors and collaborators

Lead sponsor

University of Chicago

Other

Collaborators

  • National Institute on Minority Health and Health Disparities (NIMHD)

Registry information

Official study title

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

Important dates

Study start
2023
Primary completion
2025
Study completion
2025
First posted
May 30, 2023
Registry last updated
Jul 21, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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