Grant: Project Grant

The goal of this project is to improve care for hospitalized medically fragile children and their families. The care of these children is a high priority for our health care system because of their growing numbers, and the challenges their care poses for families and health care professionals. To improve care, we will partner with parents and children with medically complex conditions admitted to a pediatric intensive care unit (PICU), and critical care health providers. Our approach places the experiences of parents and children at the heart of efforts to improve care. We will video/audio-record interviews with children and their parents to collect their stories of PICU care. Seeing and hearing these stories firsthand is a powerful mechanism to help others understand the lived experiences of these children and families. We will produce a 30-minute film of the highlights of those families' PICU experiences and use it to inspire groups of children, parents and health care professionals (doctors, nurses, and others involved in their PICU care) who will work together to design ways to enhance PICU care. We will then make changes necessary to improve PICU care for children with medically complex conditions and their families. This approach is called Experience-Based Co-Design (EBCD), and it places the family's experience at the centre of the design process. Lastly our team will explore and evaluate peoples' experiences with EBCD, and whether or not this approach contributes to lasting improvements in PICU care. Our team will work with parent and professional stakeholders to share the study findings broadly, and influence care across the country.