Research

Development of a Conceptual Framework for Quality of Life in Children with Medical Complexity

Quality of life (QOL) may become the main focus of care for a child with medical complexity. Unfortunately, we do not currently have good ways to assess QOL or monitor the impact of efforts to improve QOL for these children. In this study we will complete the first two steps in the process of developing a tool to assess QOL for children with medical complexity. We will interview 10 parents of children with medical complexity to better understand their experience and perspectives on QOL. Based on the interviews, we will confirm a new conceptual framework that we can use to build a tool for assessing QOL in this population in future research. Our study will also create new knowledge that can be used immediately by clinicians to guide discussions with children and families about QOL.