Multicenter Study Comparing Usual Care and a Web-Based Support Tool for Families Deciding on Home Ventilation for Children

What this Trial Is About

This research aims to evaluate a decision-making support process designed for families and clinicians who are facing choices about chronic home ventilation for a child. The study is conducted across multiple centers and involves families who speak English or Spanish. The goal is to see if the intervention helps families feel more prepared for making decisions and improves shared decision-making between families and clinicians compared to usual care. Families are divided into two groups one group receives usual care without changes, while the other group uses a web-based decision support tool together with study staff. Families in the intervention group review the website and answer related questions during an interview lasting up to 2 hours. Both groups of families are interviewed and surveyed at 1, 6, and 12 months after joining the study. Additionally, physicians involved in the decision for each child are interviewed and surveyed at 1 month. Participants will take part in interviews and surveys that assess decision-making preparedness and shared decision-making experiences. Researchers will measure outcomes such as parents preparedness using specific scales and shared decision-making as reported by both parents and physicians. Follow-up assessments occur up to 12 months after enrollment to evaluate decision regret, quality of life changes, and the impact of decisions on daily family life. The total participation duration extends through these follow-up points, with ongoing support and monitoring throughout the study period.

Multicenter HomeVENT: Home Values and Experiences Navigation Track