Multicenter HomeVENT: Home Values and Experiences Navigation Track
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 makin
| Condition(s) | Pediatric ALL, Respiratory Insufficiency, Communication |
|---|---|
| Status | Recruiting |
| Phase | NA |
| Study type | Interventional |
| 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. |
| Who can participate | 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 the study 6. Access to necessary resources if choose to participate via internet or telephone Exclusion Criteria: 1. Excluding children as they cannot be legal decision-makers 2. Non-English or Non-Spanish s |
| Ages | 18 Years |
| Sex | All |
| Accepts healthy volunteers | Yes |
| Lead sponsor | Johns Hopkins University |
| Locations | Tampa, Florida, United States; New Orleans, Louisiana, United States; Baltimore, Maryland, United States; Seattle, Washington, United States |
| Start date | 2024-02-06 |
| NCT ID | NCT06102330 |
| Official listing | https://clinicaltrials.gov/study/NCT06102330 |