Integrating Parents in Neonatal and Pediatric Research

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Annie Janvier1,2,3,4,5,6,7, Claude Julie Bourque8,9,10, Sonia Dahan11,9

  • 1Department of Pediatrics, Université de Montréal, Montréal, Québec, Canada, anniejanvier@hotmail.com.

Neonatology
|February 26, 2019
PubMed

Insights

Involving parents and former patients in pediatric research leads to more relevant outcomes. Early integration ensures research truly benefits families by prioritizing their needs and perspectives.

Area of Science:

  • Pediatric Research
  • Clinical Trials
  • Patient Engagement

Background:

  • Historically, parents and infants were excluded from neonatal and pediatric research stages.
  • This exclusion often resulted in research that did not yield the most beneficial information for families.
  • Recent trends show increased integration of experienced parents and former patients in research initiatives.

Observation:

  • Benchmarking studies highlight the value of parent/patient involvement in optimizing pediatric research.
  • Resource parents and ex-neonatal patients offer unique insights and contributions.
  • Various methods exist for incorporating these stakeholders into research processes.

Findings:

  • Parents and patients can be active collaborators across all research phases.
  • Involvement spans from prioritizing projects and designing trials to data interpretation and dissemination.
  • Effective integration requires tailored strategies, considering complexity and training needs.

Implications:

  • Initiatives should start with simpler engagement tasks and build capacity among parent/patient collaborators.
  • Continuous feedback loops between researchers and parents/patients are crucial for quality control.
  • Full integration of parents/patients in all research steps is vital for addressing parent- and family-centered outcomes in the future.
Abstract

Keywords:
Family important outcomesNarrativesNeonatal outcomesParent important outcomesParental perspectivesPatient important outcomesResource parentsVeteran parents

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