Decision support for home ventilation and tracheostomy for children with complex medical needs
HomeVENT (Home Values and Experiences Navigation Track)
This project offers structured tools to help families and clinical teams decide whether a child with complex medical needs should have a tracheostomy and use home ventilation.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Johns Hopkins University NIH-funded |
| Lab location | 1 site (Baltimore, United States) |
| Project ID | NIH-11174305 on NIH RePORTER |
What this research studies
If your child has complex medical needs and may need a tracheostomy or a home ventilator, this project provides a guided decision process to help families clarify their home situation and values. It uses a web-based, family-to-family information tool plus a structured family deliberation to bring real family experiences into counseling. A separate structured team deliberation helps large, multidisciplinary clinical teams jointly weigh treatment options in light of the family’s context. The approach builds on preliminary data from 30 families and will be tested with families and clinical teams to improve decision conversations.
Who could benefit from this research
Good fit: Ideal candidates are families of children with medical complexity and respiratory insufficiency who are facing a decision about tracheostomy and home ventilation.
Not a fit: Families not facing decisions about long-term ventilation or tracheostomy, or those needing immediate emergency interventions, are unlikely to benefit from this project.
Why it matters
Potential benefit: If successful, families may make more informed, values-based choices that reduce stress and lead to care plans better matched to home life and goals.
How similar studies have performed: Decision aids and family-centered counseling have shown benefits in other areas, but this specific pairing of a family-to-family web tool and structured team deliberation is relatively new and supported only by small preliminary data.
Where this research is happening
Baltimore, United States
- Johns Hopkins University — Baltimore, United States (Active)
Researchers
- Principal investigator: Boss, Renee — Johns Hopkins University
- Study coordinator: Boss, Renee
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page below.