Evidence Library

Title: Integrating Parents in Neonatal and Pediatric Research.
Author: Janvier A, Bourque C.J, Dahan S, Robson K, Barrington K.J. on behalf of the Partenariat Famille (PAF) team.
Date Published: 2019
Reference: Neonatology, 115:283–291
Are service users or carers authors: Yes

Abstract: This article reviews ways in which experienced parents can be involved in neonatal research, with examples of impact and practical ideas of how to proceed. Experienced parents can be collaborators in research in many steps: prioritising 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. The authors conclude that groups wanting to involve parents in their research start with simpler tasks that are less risky, and develop teams of parents who have differing interests and abilities. In the future, integrating parents into every step of clinical research will be essential to ensure that outcomes important to parents and families are given priority.

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Categories: health
Identifying topics, prioritising and commissioning
Designing research
Managing research
Analysing and interpreting
Writing up and disseminating
impact on research
impact on research ethics
impact of public involvement
journal article

Date Entered: 2019/04/08

Date Edited: 2019/04/08

Additional Info: