Funding outcome

Families who care for a child with a tracheostomy (a breathing tube in the neck) face many challenges when their child leaves the hospital. Parents become healthcare providers, must learn complex care skills and make important decisions every day to keep their child safe. Many families say the information they receive in hospital can be overwhelming and scattered, and it can be hard to find reliable information when problems happen at home. Because of this, families often feel stressed and may need to return to the emergency department for issues that might have been prevented with better support. Right now, there is no easy-to-use tool designed with families that brings together clear and trusted information about caring for a child with a tracheostomy at home. This project aims to better understand what information, resources, and support families in Canada need so that a helpful mobile app can be created in the future. In the first year, this study will review existing research to learn what is already known about the needs of caregivers of children with a tracheostomy. In the second year, parents will be invited to join online group discussions to share their experiences caring for their child at home. Parent with lived experience will work as a partner throughout the project to help shape the study and interpret the results. This research focuses on improving the health and wellbeing of children and supporting families who care for them. By identifying what families' information needs, this work will help guide the development of better tools/supports that can improve care at home, reduce stress for caregivers, and help children stay healthier outside the hospital