Funding outcome

Some critically ill children may require a tracheostomy - a procedure that helps them breathe through a tube inserted in their neck. For families, making decisions about tracheostomy and managing life afterwards can be overwhelming and emotionally challenging as they navigate the health system. Families must prepare for home-based care, understand the long-term implications, and adjust to major changes in family life. Many families have told us they felt unprepared and stressed during the decision-making process. Some have had regrets, trust issues with doctors, and mental health challenges long after leaving the hospital that affect how they care for their child. These families are in unsettled position as their child's life rests in the hands of numerous healthcare professionals and advanced health care supports and technology. We learnt from prior research that families who are dealing with a possible tracheostomy for their child want to hear from other families who have been through similar experiences, not just doctors and other staff. They want to know more about life at home with a child with a tracheostomy. This project will work with families across different provinces who have lived through this experience to develop digital tools to support future families make informed decisions-from the first conversation about a tracheostomy to life at home. Families will participate every step of the way. Through conversations with families, we will learn what information they need and the best way to share it. With help from families and experts in child's tracheostomy care, we will create these tools and test them to make sure they are easy to understand, helpful, and respectful of each family's experience. The result will be tools such as a video, an infographic, and an e-booklet that will be made publicly available. When families know what to expect, they are empowered to participate in their child's care and have healthier interactions with health professionals.