Multicenter HomeVENT: Home Values and Experiences Navigation Track
Johns Hopkins University
Summary
This is a multicenter study to test a decision-making support process for families and clinicians facing decisions about chronic home ventilation for a child. The investigators hypothesize that the intervention will increase family preparedness for decision-making and will improve clinician-family shared-decision making. Half of families will be assigned to "usual care" arm and half to the "intervention" arm. Intervention families will view the study website with study staff and will answer questions related to website content. All families will be interviewed and surveyed at 1, 6 and 12 months after enrollment. Each family will designate 1-2 physician involved in the decision about home ventilation; each physician will be interviewed and surveyed at 1 month.
Description
Across 4 centers, the investigators will recruit 150 English and/ or Spanish-speaking families (up to 2 parents per family) who are currently facing a decision about tracheostomy and home ventilation for the child. The investigators will also recruit up to 2 clinicians who are central to the decision for each child. The first 50% of families will be assigned to "usual care" arm and the second 50% of families will be assigned to the "intervention" arm. Intervention families will view the study website with study staff and will answer questions related to website content in an interview that co…
Eligibility
- Age range
- 18+ years
- Sex
- All
- Healthy volunteers
- Yes
Inclusion Criteria: 1. English- or Spanish-speaking 2. Males and females; Age 18 and over. 3. Parent of a child facing a decision about home ventilation within 30 days. A "parent" will be defined as any self-identified primary caregiver (parents, grandparents, etc). or Physician of a child whose parents are enrolled in the study; physician must be engaged in the home ventilation decision. 4. Provision of signed and dated informed consent form (parent) or completion of oral consent (physician) 5. Stated willingness to comply with all study procedures and availability for the duration of th…
Interventions
- OtherHomeVENT decision support tool
Web-based decision support tool that describes diverse family experiences with making decisions about pediatric chronic home ventilation
Locations (4)
- Johns Hopkins All Childrens HospitalTampa, Florida
- Children's Hospital New OrleansNew Orleans, Louisiana
- Johns Hopkins University School of MedicineBaltimore, Maryland
- Seattle Childrens HospitalSeattle, Washington