Integrating Parents in Neonatal and Pediatric Research

Neonatology
Annie Janvieron behalf of the Partenariat Famille (PAF) team

Abstract

Parents and their infants are the beneficiaries of neonatal and pediatric research, but in the past they have been excluded from most stages of research projects. As a result, many projects may fail to produce the most worthwhile information for parents and families. Lately, veteran resource parents and patients have been increasingly integrated in research initiatives. Benchmarking of neonatal and pediatric research initiatives where resource parents and/or ex neonatal patients have helped to optimize pediatric research. We review ways in which resource parents/patients can be involved in research, with examples and practical ideas of how to proceed. Resource parents/patients can be collaborators in research and be integrated in many steps: prioritizing research projects, designing trials, determining the outcomes of interest, ethics review, developing and improving consent procedures, collection and interpretation of data, participation in data safety monitoring committees, publication of results, and presentation to peer groups. Some of the strategies for integration of stakeholders in clinical research are more complex, may involve risk and require more training than others. We suggest that groups wanting to involve parents...Continue Reading

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Citations

Apr 27, 2019·JAMA Network Open·Fida KhaterDaniel Sinnett
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May 29, 2019·Neonatology·Chris GaleEdmund Juszczak

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