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 Recruitment
Date Entered: 2019/04/08
Date Edited: 2019/04/08