Clinical trial NCT05880953: Parent-to-parent Coaching While Awaiting Hospital Discharge With a Child With a Ventilator
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
Study type: INTERVENTIONAL
Overall status: ACTIVE_NOT_RECRUITING
Phase: NA
Conditions: Invasive Mechanical Ventilation
Children With Medical Complexity
Home Nursing
Empowerment
Lead sponsor: University of Chicago
Sponsor class: OTHER
Collaborators: name: National Institute on Minority Health and Health Disparities (NIMHD)
First posted: 2023-05-30
Enrollment: 30
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Allocation: NA
Intervention model: SINGLE_GROUP
Primary purpose: OTHER

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.

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

Primary outcomes:
measure: Change in parent empowerment as measured by the family empowerment scale (FES)
timeFrame: Baseline and repeated at exit (either at 6 months or when parents choose to exit the study)
Secondary outcomes:
measure: Change in nursing coverage
timeFrame: Baseline and repeated at exit (either at 6 months or when parents choose to exit the study)
measure: Satisfaction with coaching program
timeFrame: exit (either at 6 months or when parents choose to exit the study)
Other outcomes:
Locations:
city: Chicago
country: United States
facility: University of Chicago
state: Illinois
Study officials:
affiliation: University of Chicago
name: Sarah Sobotka, MD, MSCP
role: PRINCIPAL_INVESTIGATOR
References: