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Neonatology. 2019 Feb 20;115(4):283-291. doi: 10.1159/000492502. [Epub ahead of print]

Integrating Parents in Neonatal and Pediatric Research.

Author information

1
Department of Pediatrics, Université de Montréal, Montréal, Québec, Canada, anniejanvier@hotmail.com.
2
Division of Neonatology, Hôpital Sainte-Justine, Montréal, Québec, Canada, anniejanvier@hotmail.com.
3
CHU Sainte-Justine Research Center, Montréal, Québec, Canada, anniejanvier@hotmail.com.
4
Bureau de l'Éthique Clinique, Université de Montréal, Montréal, Québec, Canada, anniejanvier@hotmail.com.
5
Unité d'Éthique Clinique, Hôpital Sainte-Justine, Montréal, Québec, Canada, anniejanvier@hotmail.com.
6
Unité de Soins Palliatifs, Hôpital Sainte-Justine, Montréal, Québec, Canada, anniejanvier@hotmail.com.
7
Unité de Recherche en Éthique Clinique et Partenariat Famille (UREPAF), Montréal, Québec, Canada, anniejanvier@hotmail.com.
8
CHU Sainte-Justine Research Center, Montréal, Québec, Canada.
9
Unité d'Éthique Clinique, Hôpital Sainte-Justine, Montréal, Québec, Canada.
10
Unité de Recherche en Éthique Clinique et Partenariat Famille (UREPAF), Montréal, Québec, Canada.
11
Division of Neonatology, Hôpital Sainte-Justine, Montréal, Québec, Canada.
12
Sunnybrook Hospital, Toronto, Ontario, Canada.
13
Department of Pediatrics, Université de Montréal, Montréal, Québec, Canada.

Abstract

BACKGROUND:

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.

METHODS:

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.

RESULTS:

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.

CONCLUSION:

We suggest that groups wanting to involve parents in their research endeavors start with simpler tasks that entail less risk and develop teams of resource parents who have differing interests and abilities. Quality control of programs is essential, such as frequently giving and obtaining feedback from resource parents/patients and researchers. In the future, integration of resource parents/patients into every step of clinical research will be essential to ensure that parent and family important outcomes are examined.

KEYWORDS:

Family important outcomes; Narratives; Neonatal outcomes; Parent important outcomes; Parental perspectives; Patient important outcomes; Resource parents; Veteran parents

PMID:
30799397
DOI:
10.1159/000492502

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