Practicing family centred care is considered best practice in paediatric clinical care, so why isn’t this widely adopted in paediatric research? The voices of experience include those of the children and families. Therefore, partnering with families in research should also be considered best practice. In this episode we explore this concept through an ethical lens – what are the benefits and challenges of engaging families in research? How do we honour the family experience? How do we ensure the important voices are heard? What do we need to be able to do this effectively?

Authorship & Acknowledgments:

Host: Dr Jenny O’Neill, Clinical Nurse Consultant Bioethics, The Royal Children’s Hospital. Guests: Ms Hollie Feller, parent advocate, co-founder and Director of Usherkids Australia, and Project Officer at Genetic Support Network Victoria. Associate Professor Adrienne Harvey, Senior Research Fellow, Neurodisability and Rehabilitation, The Murdoch Children’s Research Institute. Ms Marijana Vanevski, Infection Flagship Program Manager and Project Manager for the National Low-Risk Febrile Neutropenia Program, The Murdoch Children’s Research Institute.