Marceau Lisa D, Welch Lisa C, Pemberton Victoria L, Pearson Gail D
New England Research Institutes, Watertown, Massachusetts, USA
Tufts University, Boston, Massachusetts, USA.
Qual Health Res. 2016 Jul;26(8):1114-22. doi: 10.1177/1049732315616620. Epub 2015 Dec 28.
A gap in information about pediatric clinical trials exists, and parents remain uncertain about what is involved in research studies involving children. We aimed to understand parent perspectives about pediatric clinical research after viewing the online Children and Clinical Studies (CaCS) program. Using a qualitative descriptive study design, we conducted focus groups with parents and phone interviews with physicians. Three themes emerged providing approaches to improve parent's understanding of clinical research by including strategies where parents (a) hear from parents like themselves to learn about pediatric research, (b) receive general clinical research information to complement study-specific details, and (c) are provided more information about the role of healthy child volunteers. Parents found the website a valuable tool that would help them make a decision about what it means to participate in research. This tool can assist parents, providers, and researchers by connecting general information with study-specific information.
关于儿科临床试验的信息存在缺口，家长们对于涉及儿童的研究项目所包含的内容仍不确定。我们旨在了解家长在观看在线儿童与临床研究（CaCS）项目后对儿科临床研究的看法。采用定性描述性研究设计，我们对家长进行了焦点小组访谈，并对医生进行了电话访谈。出现了三个主题，提出了通过以下策略来提高家长对临床研究的理解：（a）让家长听取与自己情况相似的家长的经验，以了解儿科研究；（b）提供一般临床研究信息以补充特定研究细节；（c）提供更多关于健康儿童志愿者角色的信息。家长们发现该网站是一个有价值的工具，有助于他们决定参与研究意味着什么。这个工具可以通过将一般信息与特定研究信息联系起来，帮助家长、医疗服务提供者和研究人员。
