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

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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