Integrating Parents in Neonatal and Pediatric Research
Integrating Parents in Neonatal and Pediatric Research
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DOI：
10.1159/000492502
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发表时间：
2019-01-01
期刊：
影响因子：
2.5
通讯作者：
Turmel, Steve
中科院分区：
文献类型：
--
作者：
Janvier, Annie;Bourque, Claude Julie;Turmel, Steve
背景：父母和他们的婴儿是新生儿和儿科研究的受益者，但在过去，他们被排除在研究项目的大多数阶段。因此，许多项目可能无法为父母和家庭提供最有价值的信息。最近，经验丰富的资源父母和患者越来越多地融入到研究活动中。方法：对新生儿和儿科研究计划进行基准比较，在这些计划中，父母和/或前新生儿患者的资源有助于优化儿科研究。我们回顾了资源父母/患者参与研究的方式，并举例说明了如何进行研究。结果：资源父母/患者可以成为研究中的合作者，并可以在许多步骤中进行整合：确定研究项目的优先顺序，设计试验，确定感兴趣的结果，伦理审查，发展和改进同意程序，收集和解释数据，参与数据安全监测委员会，发布结果，以及向同行小组展示。在临床研究中整合利益相关者的一些战略比其他战略更复杂，可能涉及风险，需要更多的培训。结论：我们建议希望让父母参与他们的研究努力的团体从风险较小的简单任务开始，并发展具有不同兴趣和能力的资源父母团队。项目的质量控制是必不可少的，例如经常给予和获得资源父母/患者和研究人员的反馈。在未来，将父母/患者资源整合到临床研究的每一步将是至关重要的，以确保父母和家庭的重要结果得到检查。(C)2019年S.Karger AG，巴塞尔
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. (c) 2019 S. Karger AG, Basel