Actively Recruiting
Multicenter HomeVENT: Home Values and Experiences Navigation Track
Led by Johns Hopkins University · Updated on 2025-08-03
600
Participants Needed
4
Research Sites
52 weeks
Total Duration
On this page
Sponsors
J
Johns Hopkins University
Lead Sponsor
E
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Collaborating Sponsor
AI-Summary
What this Trial Is About
Researchers are evaluating a decision-making support process for families and clinicians who are facing decisions about chronic home ventilation for a child. This study aims to see if the intervention increases family preparedness and improves shared decision-making between families and clinicians. The study involves families who speak English or Spanish and are currently considering home ventilation for their child, along with the clinicians involved in these decisions. Participants are divided into two groups: one receiving usual care and the other receiving the intervention. Families in the intervention group will review a web-based decision support tool together with study staff and answer related questions. Both groups will be interviewed and surveyed at 1, 6, and 12 months after enrollment. Physicians involved in these decisions will also be interviewed and surveyed at 1 month. During the study, families will participate in interviews lasting from 15 to 30 minutes, and intervention group interviews may last up to 2 hours. Researchers will measure family preparedness for decision-making, shared decision-making perceptions of both families and physicians, decision regret, quality of life impacts, and the effect of decisions on daily life. The study will continue until December 2030, with ongoing assessments to track outcomes over time.
CONDITIONS
Brief Title
Multicenter HomeVENT: Home Values and Experiences Navigation Track
Who Can Participate
Eligibility Criteria
You may qualify if you...
- English- or Spanish-speaking
- Adults aged 18 years or older
- Parent or primary caregiver of a child facing a decision about home ventilation within 30 days
- Physician involved in the home ventilation decision for a child whose parents are enrolled
- Willingness to comply with study procedures and available for study duration
- Access to internet or telephone to participate
You will not qualify if you...
- Children, as they cannot be legal decision-makers
- Parents who do not speak English or Spanish, due to language limitations of the intervention
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - Up to 30 days
Participants are screened for eligibility to participate in the trial.
1 screening and enrollment visit
Duration - Initial session at enrollment
Families in the intervention arm review a web-based decision-making tool with study staff and answer questions about the website content during an interview lasting up to 2 hours. Families in the usual care arm do not receive this intervention.
1 in-person or virtual visit for the intervention session (intervention arm only)
Duration - 1 month
All families and designated physicians participate in interviews at 1 month after enrollment to assess preparedness for decision-making and shared decision-making.
1 interview visit for families and 1 interview for physicians (approximately 15-30 minutes for families, 15 minutes for physicians)
Duration - 6 to 12 months
Families complete follow-up interviews at 6 and 12 months after enrollment to assess decision regret, quality of life, and impact of decisions on daily life.
2 interview visits at 6 and 12 months (each 15-30 minutes)
Trial Site Locations
Total: 4 locations
1
Johns Hopkins All Childrens Hospital
Tampa, Florida, United States, 33701
Actively Recruiting
2
Children's Hospital New Orleans
New Orleans, Louisiana, United States, 70118
Actively Recruiting
3
Johns Hopkins University School of Medicine
Baltimore, Maryland, United States, 21287
Actively Recruiting
4
Seattle Childrens Hospital
Seattle, Washington, United States, 98145
Actively Recruiting
Research Team
R
Renee D Boss, MD
J
Jennifer Shephard, RN
How is the study designed?
Study Type
INTERVENTIONAL
Masking
NONE
Allocation
NON_RANDOMIZED
Model
SEQUENTIAL
Primary Purpose
SUPPORTIVE_CARE
Number of Arms
2
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