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CCENT

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More than Medical:  Supporting NICU Families with their Transition Home During a Pandemic
Sep
29
12:00 PM12:00

More than Medical: Supporting NICU Families with their Transition Home During a Pandemic

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This webinar is now over but if you missed it, please feel free to watch the recordings below

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Leaving the NICU is often a challenging time for families and can make them feel both excitement and fear in equal measure.  In our Coached, Coordinated, Enhanced Neonatal Transition (CCENT) study, we have been looking at models for supporting and empowering families through this stressful transition.  What we’re learning seems even more important in light of the added stress brought by COVID-19.  In this webinar, a neonatologist/developmental paediatrician, a nurse navigator, and a graduate NICU parent will share some reflections from the past few months, and what we think NICU parents need from us now as they prepare for life at home during the pandemic.

Provided by the CHILD-BRIGHT Network in collaboration with Children’s Healthcare Canada.

When: Tuesday, September 29, 2020
Time: Noon - 1:00 p.m. EST


LEARNING OBJECTIVES

Participants will be able to:

  1. Identify challenges generally experienced by NICU families during and after their transition home

  2. Understand how COVID-19 has exacerbated these challenges and created new ones for NICU families, and

  3. Describe how supportive and holistic care models (such as our Acceptance Commitment Training approach) can help families address the emotional and practical issues they’re facing, and empower them with personal problem-solving strategies.

PRESENTERS

Dr. Paige T. Church (Neonatologist and CCENT Investigator at Sunnybrook)

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Dr. Church is a graduate of the University of Vermont College of Medicine.  Her paediatrics training was completed at the University of Chicago, focusing on inner city medicine and complex care. She then undertook a combined fellowship in Neonatal-Perinatal Medicine and Developmental Behavioral Paediatrics at Tufts University School of Medicine in Boston.

Dr. Church is currently an Associate Professor in the Department of Paediatrics at the University of Toronto.  She is on staff at Sunnybrook Health Sciences Centre as a staff neonatologist and is a consulting developmental behavioral pediatrician at Bloorview Kids Rehab.  She is the director of the Neonatal Follow Up Clinic at Sunnybrook Health Sciences Centre.  She is also the co-Principal Investigator of the CHILD-BRIGHT Network Coached, Coordinated, Enhanced Neonatal Transition (CCENT) study.

Kate Robson (CCENT Parent-Partner Lead)

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Kate is the Parent Partner Lead at the Coached, Coordinated, Enhanced Neonatal Transition (CCENT) research project. Both of Kate’s daughters were born preterm - one was a 500 gram 25 weeker born in 2005, and the other came at 32 weeks in 2007.  Inspired by her own experiences, she came back to the NICU in 2010 to work with families as a Neonatal Intensive Care Unit Family Support Specialist. She also has a private therapy practice in Toronto where she offers support to NICU parents and clinicians. 

Amie Nowak (CCENT Nurse Navigator in BC)

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Amie has lived in BC her entire life, and started working at the BC Children's Hospital  (BCCH) early in her nursing career. She has been the pediatric general surgery nurse specializing in ostomies and wounds since 2006. She stumbled into research and is loving interacting with families in a whole new way, and supporting them as they transition home. In her spare time, she enjoys hanging out with her husband and kids, walking her dog, and stopping her cats from destroying everything green in her house.

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Redefining outcomes of very preterm birth: including the parent’s voice in research
May
8
11:00 AM11:00

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

This webinar is now over, but if you missed it, please feel free to watch the recording below.

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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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