Martin Elise G, Rasiah Jananee, Claassen Curtis S, Waywitka Jennifer, Merritt Anne M, Pringsheim Tamara M, Shearer Kathleen A, Tsang Vivian W L, Stevens Katherine E, Sheehan-Klassen Cole E, Suddaby Perle, Orr Serena L
Alberta Children's Hospital, Calgary, Alberta, Canada.
Department of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada.
Paediatr Child Health. 2023 Mar 31;28(4):235-240. doi: 10.1093/pch/pxac111. eCollection 2023 Jul.
Youth and parent engagement is a key component of clinical research. There are many ways to actively and meaningfully engage youth and parents as integral members of research teams, for example, through ad-hoc committees, advisory councils, or as co-leads on projects. When youth and parents are actively and meaningfully engaged in research projects, they share knowledge from their lived experiences to improve the quality and relevance of research.
We describe a case-based example of engaging youth and parent research partners when co-designing a questionnaire to assess preferences for pediatric headache treatments, from both a researcher and youth/parent perspective. We also summarize best practices in patient and family engagement from the literature and pertinent guidelines to assist researchers with integrating patient and family engagement into their studies.
As researchers, we felt that the integration of a youth and parent engagement plan into our study significantly altered and strengthened questionnaire content validity. We encountered challenges throughout the process and detailed these experiences to help educate others about challenge mitigation and best practices in youth and parent engagement. As youth and parent partners, we felt that engaging in the process of questionnaire development was an exciting and empowering opportunity, and that our feedback was valued and integrated.
By sharing our experience, we hope to catalyze thought and discussion around the importance of youth and parent engagement in pediatric research, with the goal of stimulating more appropriate, relevant, and high-quality pediatric research and clinical care in the future.
青少年及家长参与是临床研究的关键组成部分。有多种方式可以让青少年和家长作为研究团队的重要成员积极且有意义地参与其中，例如，通过特设委员会、咨询委员会，或者作为项目的联合负责人。当青少年和家长积极且有意义地参与研究项目时，他们会分享自身生活经历中的知识，以提高研究的质量和相关性。
我们从研究者以及青少年/家长的角度，描述了一个在共同设计一份评估儿童头痛治疗偏好的问卷时，让青少年及家长研究伙伴参与其中的基于案例的示例。我们还总结了文献及相关指南中关于患者及家庭参与的最佳实践，以帮助研究人员将患者及家庭参与纳入其研究。
作为研究人员，我们认为将青少年及家长参与计划纳入我们的研究显著改变并增强了问卷的内容效度。我们在整个过程中遇到了挑战，并详细介绍了这些经历，以帮助其他人了解在青少年及家长参与方面减轻挑战的方法和最佳实践。作为青少年及家长伙伴，我们认为参与问卷开发过程是一个令人兴奋且赋予人力量的机会，并且我们的反馈得到了重视并被纳入其中。
通过分享我们的经验，我们希望引发关于青少年及家长参与儿科研究重要性的思考和讨论，目标是在未来促进更恰当、相关且高质量的儿科研究和临床护理。
