Funding outcome

Children with long-term breathing problems often need a machine to help them breathe. Non-invasive ventilation (NIV) is a machine that helps deliver pressurized air through a mask to help with breathing. The benefit of using NIV is that children can only use it during sleep and then stop using it during the rest of the day. All over the world, an increasing number of children are using NIV at home to help them breathe. In fact, NIV has become the go-to therapy for many children with breathing problems. We currently know, through sleep study testing, that NIV helps improve breathing during sleep. For instance, NIV helps with reduce pauses in breathing, snoring and increases oxygen levels. There are also studies that have shown that NIV also helps improve other aspects like growth and learning. However, there is very little information about the experience of using NIV from the family's perspective. Therefore, the aim of this research project is to collect information from families of children using NIV in Edmonton about their priorities with respect to the use of NIV. We are developing a survey with questions about what families perceive to be benefits of using NIV, any concerns they have, and the overall challenges they have experienced with their child using NIV therapy. We will also ask them to tell us which ones are most important for them. We hope to better understand what is important to families with children using long-term NIV. This will provide clinicians with a better direction about what questions are important to discuss with families during their clinic visits. It will also help us anticipate frequent problems that worry families and make plans to address them. Finally, we can use this information to create a more family-oriented criteria for government NIV funding.