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Redefining outcomes of very preterm birth: including the parent’s voice in research

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Neurodevelopmental impairment has become the main measure of the Neonatal Intensive Care Unit’s 'success' in preterm outcome research. However, this represents the scientific and medical point of view, not the parents' perspective. The Parent-EPIQ team created the Parents' Voice Project, which aims to engage parents to co-create definitions of important preterm outcomes. This project is an example of how research can be done with families, and not just about families.

This webinar will introduce you to the Parents’ Voice Project and why it is important for parents to be partners in research.

Parent-EPIQ is part of the CHILD-BRIGHT Network of researchers dedicated to developing innovative interventions to improve long-term outcomes for children with brain-based developmental disabilities and is funded in part by the Canadian Institutes of Health Research’s Strategy for Patient-Oriented Research (SPOR).

When: Wednesday, May 8
Time: 11:00am-12:00pm EST 

PRESENTERS

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Rebecca Pearce is the mother of nine-year old Maren Baardsnes, who was born at 25 weeks gestational age, and six-year old Elinor Baardsnes, who was born at term! Rebecca has been a parent representative with the PAF (Partenariat Famille) team at Sainte-Justine hospital in Montreal for several years, involved in outreach and parent-centered research. For the past 13 years Rebecca has been a secondary science teacher in Montreal. She is also a second-year PhD student in the Science and Mathematics Education Research Group of the Faculty of Education at McGill University where she is interested in exploring the experiences of preterm children as mathematics students.

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Dr. Annie Janvier is a neonatologist and clinical ethicist in Montreal, Canada. She co-directs the Masters and PhD programs in clinical ethics at l’Université de Montréal. Her main research interests in bioethics are decision-making for fragile patients and family integrated care in pediatrics. She investigates parent/patient/family important outcomes after an Neonatal Intensive Care Unit (NICU) stay. She has demonstrated many contrasts between provider and parental perspectives and examines how to improve our communication with families. Patients and parents are collaborators in the majority of her clinical, research and teaching projects.

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Dr. Thuy Mai Luu is a clinical scientist, epidemiologist and paediatrician at the Neonatal Follow-Up Clinic at CHU Sainte-Justine in Montreal. She completed her pediatric training at CHU Sainte-Justine and a fellowship in long-term outcomes following preterm birth at the Montreal Children's Hospital and at the Women & Infants Hospital in Providence with Dr Betty Vohr. She has been involved with the Canadian Neonatal Follow-up Network (CNFUN) since 2009 in both the Database and then the Steering Committee. Her research interests include developmental outcomes of preterm infants, long-term health of adults born preterm and developmental screening in high-risk populations. With a multidisciplinary team, she has developed a web-based health literacy platform for parents of children born preterm that could serve to expand CNFUN mission regarding parental knowledge transfer.

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Dr. Anne Synnes is a neonatologist at BC Women’s Hospital in Vancouver. Her special area of interest is in neonatal follow-up to ensure that children born sick or very premature have the best possible future. She is the medical director of the Neonatal Follow-Up Program and founding director of the Canadian Neonatal Follow-Up Network. Her work has taught her the importance of parents. Her current project involves parents in both deciding what are the outcomes that matter and helping improve cognitive and language abilities in children born preterm.


Acknowledgements

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