Testing a decision-making tool for families choosing home ventilation

This trial is testing a new website tool called HomeVENT designed to help families and their doctors make decisions about whether a child should have a tracheostomy (breathing tube) and use a home ventilator. Half of families will use the website tool along with study staff, while the other half will receive standard decision-making support. The study will follow both groups over a year to see if the website tool helps families feel more prepared and confident in their decision.

Deciding whether a child needs a breathing tube and home ventilation is one of the biggest, most stressful decisions a family can face. Doctors and researchers want to make sure families have clear, organized information and feel truly prepared before making this choice, so the study is testing whether a structured online tool can help.