Funding outcome

Mapping the Journey: A Study with Parents and Clinicians to Understand Families' Needs and Preferences to Care for Children with Tracheostomies Children with complex chronic medical conditions are a small number of children but as a group they use a lot of healthcare resources. Child with complex respiraoty and airway conditions that requirs a tracheostomy (a piece of plastic placed in the neck) and ventilator to live at home represent one group of children with a chronic complex medical condition. They are the focus of this study. Many studies have identified that they experience fragmented and poorly coordinated care in the health care system. They have long hospital stays before they can go home and they see many doctors and other care providers in outpatients clinics once they have been dischared for the hopsital. The objectives.of this study to get a better understanding and characterization of the child's journey from the perspective of the parents and the healthcare providers This understanding will help inform the changes needed to create a more coordinated journey for these patients. With a better understanding of the journey and what works well and what does not work well a map will be created. This map will serve as a visual tool for families. Hospital and homecare staff to be able to see where changes need to occur and where services are currently duplicated or not coordinated well. This study is the first step in the creation of a more coordinated, patient friendly journey for children with chronic medical condition. It is about understanding the complexities that these families navigate within healthcare and the frustrations felt by healthcare providers at the duplication and poorly coordinated services for these families. It is about creating a picture of the whole patient, not just the complex respiratory and