In this Complex Care Journal Club podcast episode, Ms. Pearce and Dr. Synnes discuss a series of patient-oriented research studies aimed at partnering with parents in reimagining meaningful outcomes for premature infants. They describe the inclusion of parents on the study team, recruitment of parent participants, lessons and challenges while conducting the study, messages for other researchers and parents, and the next steps from this work.

SPEAKERS
Rebecca Pearce, B. Ed, MSc
Vice Principal
Villa Maria High School
Parent Partner
CHU Sainte-Justine and Canadian Premature Babies Foundation‌

Anne Synnes, MDCM, MHSc
Clinical Professor, Neonatologist
University of British Columbia
British Columbia's Women's Hospital and British Columbia's Children's Hospital Research Institute

HOST
Kilby Mann, MD
Assistant Professor
Pediatric Rehabilitation Medicine
Children's Hospital Colorado

DATE
Initial publication date: February 10, 2025.

ARTICLES REFERENCED
Pearce R, Synnes A, Lam MM, Richter LL, Bacchini F, Jones M, Luu TM, Janvier A; PARENTS’ VOICE NETWORK. Partnering With Parents to Change Measurement and Reporting of Preterm Birth Outcomes. Pediatrics. 2024 Nov 1;154(5):e2024067093. doi: 10.1542/peds.2024-067093. PMID: 39354888.

Haslam MD, Lisonkova S, Creighton D, Church P, Yang J, Shah PS, Joseph KS, Synnes A; Canadian Neonatal Network and the Canadian Neonatal Follow-Up Network. Severe Neurodevelopmental Impairment in Neonates Born Preterm: Impact of Varying Definitions in a Canadian Cohort. J Pediatr. 2018 Jun;197:75-81.e4. doi: 10.1016/j.jpeds.2017.12.020. Epub 2018 Feb 3. PMID: 29398054.

TRANSCRIPT
https://cdn.bfldr.com/D6LGWP8S/as/p65m4p98gppf65mz3zhmm9g/February_Pearce_and_Synnes_ccjcp_final_revisions‌

Please visit: http://www.openpediatrics.org OPENPediatrics™ is an interactive digital learning platform for healthcare clinicians sponsored by Boston Children’s Hospital and in collaboration with the World Federation of Pediatric Intensive and Critical Care Societies. It is designed to promote the exchange of knowledge between healthcare providers around the world caring for critically ill children in all resource settings. The content includes internationally recognized experts teaching the full range of topics on the care of critically ill children. All content is peer-reviewed and open-access thus at no expense to the user. For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu

CITATION
Pearce R, Synnes A, Mann K. Focus on Abilities: Parent-Identified Outcomes of Preterm Infants. 2/2025. OPENPediatrics. Online Podcast: https://soundcloud.com/openpediatrics/focus-on-abilities-parent-identified-outcomes-of-preterm-infants

Focus on Abilities: Parent-Identified Outcomes of Preterm Infants‌

OPENPediatrics