Building a strategy to support parent partnership in patient-oriented research in the Maritimes

Research supporting partnerships between parents and health care professionals to improve outcomes for children and youth is growing. In child health research, parents are important advocates for their children who are often unable to speak for themselves. Parents use the outputs of child health research, but few are ever meaningfully involved in the development and implementation of research. At the IWK Health Centre, patient and family involvement is a cornerstone of the delivery of care. It is a natural extension, then, to also involve families in the co-creation of child health research. As such, the overall goal of this project is to support parent partnership in patient-oriented child health research. Research questions include: (1) what are the barriers/enablers for partnering with parents in patient-oriented research? (2) what are the key mechanisms and processes of a comprehensive strategy to support parent-researcher partnership in patient-oriented research? (3) what indicators are useful to include in a scorecard to evaluate the impact of a strategy for parent-researcher partnership? Focus groups and interviews with parents, researchers, and research administrators will be used to identify key barriers and enablers to parent partnership. We will then host a one-day meeting to identify key actions and develop the parent partnership strategy. Parents and knowledge users will be included as co-investigators on the research team. With the appropriate infrastructure and support, parents, youth and child health researchers can work together collaboratively to advance patient oriented research and improve health outcomes of children and families.