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Parent Voices and Evidence-Based Neonatal Care: Where we’ve been and where we need to go

This event has passed. If you missed it, you can watch the recording below:

Join neonatologist Annie Janvier, parent research partner Rebecca Pearce, and co-principal investigator Thuy Mai Luu for an eye-opening webinar highlighting the contrast between preterm birth outcomes that are traditionally measured in neonatology and those that really matter to parents.

The speakers will:

  • Explore why and when preterm birth outcomes are measured

  • Examine the limitations of traditional outcome measures

  • Present the outcomes that are important to families

  • Explain how outcome measures could be optimized to better reflect the family experience

SPEAKERS

Annie Janvier is a professor of pediatrics and clinical ethics at Université de Montréal. She is also a neonatologist and clinical ethicist at CHU Sainte-Justine. Her main research interests in bioethics are patient/family/parental perspectives on health outcomes, decision-making for fragile patients, and family-integrated care in pediatrics. Patients and parents are collaborators in the majority of her clinical, research, and teaching projects.

Rebecca Pearce is a high school vice-principal who lives in Montreal. She is the mother of a surviving twin who was born at 25 weeks, 5 days gestational age in 2009. Over the years, Rebecca has been a co-author on a number of papers discussing parental views of prematurity and has become an advocate for improving outcomes of prematurity by including parent voices and perspectives in research. She is also the chair of the Canadian Premature Babies Foundation Family Advisory Committee.

Thuy Mai Luu is a pediatrician and the medical director of CHU Sainte-Justine’s Neonatal Follow-Up Program in Montreal. She is also the director of the Canadian Neonatal Follow-Up Network, a research network including the 26 neonatal follow-up programs across Canada. She is currently a senior clinical research scholar from the Quebec Health Research Funds. Her research focuses on long-term neurodevelopmental and physical health outcomes following preterm birth, from infancy to adulthood.

Earlier Event: February 11
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Later Event: February 19
What’s the Story? Part 2: How to use social media to do public scholarship

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The CHILD-BRIGHT Network is supported by the Canadian Institutes of Health Research (CIHR) under Canada’s Strategy for Patient-Oriented Research (SPOR) Initiative.

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