Lived Experience from our Consumer Group informs new Extreme Prematurity Guideline

Dr Rose Boland, an Associate Investigator for the CRE in Newborn Medicine was part of the Expert Working Group appointed by Safer Care Victoria to develop a guideline for extremely preterm birth and here talks about the role played by our Consumer Advisory Group in developing the Parent Information Sheets, a key component of the guideline. 

There are wide variations in approach to the care of women and their babies born extremely preterm at 22-24 weeks’ gestation in Australia and internationally.  In 2019,  Safer Care Victoria appointed an Expert Working Group to develop guidelines for extremely preterm birth to address variations in care and in outcome of babies born this early.  

The Extreme Prematurity guideline provides evidence-based guidance for clinicians working throughout Victoria caring for high-risk pregnant women and newborn babies to:

• reduce variations in care, particularly in non-tertiary maternity services for women in threatened extremely preterm labour
• provide guidance for immediate management of the newborn infant at birth.
• provide parents with information and resources regarding treatment options (active versus palliative care), and potential infant outcomes (survival and long-term disability risks)

Given the lived experiences of preterm birth that the parents in our Consumer Advisory Group have, incorporating their perspectives on the information to include and how to communicate that information, ensures that the parent information sheets are well targeted to others who will be faced with similar decisions and concerns to what they faced. 

See Rose speak about the development of the guideline and the parent information sheets below.

If you too are interested in your lived experiences being used to shape and inform newborn research, please contact our Consumer Engagement Coordinator, Renae Allen at crenewbornmedicine@mcri.edu.au to find out more about how you can become involved in our Consumer Advisory Group.

Find the Extreme Prematurity Guideline and the parent information sheets all available for download on the Safer Care Victoria website here.