Abadula Fayo, Jordan Lori C, LeStourgeon Lauren, Jaser Sarah S
Division of Pediatric Psychology, Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN.
Division of Pediatric Neurology, Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN.
Diabetes Spectr. 2024 Winter;37(1):95-99. doi: 10.2337/ds23-0018. Epub 2023 Sep 8.
Many challenges exist in developing multisite protocols for newly diagnosed children with type 1 diabetes. Our research team engaged community members to increase the likelihood of study success during a planning grant for a longitudinal study aimed at understanding risk and protective factors for neurocognitive function in school-aged children newly diagnosed with type 1 diabetes.
Two methods were used to obtain caregiver input into study protocol decisions. The first was a survey given to caregivers of children with diabetes ( = 21) about which aspects of the study protocol would make families more or less likely to participate. The second was a Community Engagement (CE) Studio to obtain recommendations from a diverse group of caregivers of children with diabetes ( = 7) on key aspects of recruitment and enrollment.
Results from both the survey and the CE Studio indicated that caregivers were interested and willing to participate in a longitudinal study of this nature. Both methods resulted in similar preferences for the type and amount of compensation, convenient study visits, flexible scheduling options, and receipt of neurocognitive test results. Recommendations from the CE Studio included additional strategies to minimize participant burden and enhance communication around study participation.
Both the feasibility survey and the CE Studio were useful mechanisms to obtain caregiver input during the study's planning and design phase. Uniquely, the CE Studio approach offers researchers the ability to gain valuable community member input with minimal staff effort.
为新诊断的1型糖尿病儿童制定多中心研究方案存在诸多挑战。我们的研究团队在一项规划资助项目中邀请社区成员参与，该项目是一项纵向研究，旨在了解新诊断的1型糖尿病学龄儿童神经认知功能的风险和保护因素，以提高研究成功的可能性。
采用两种方法获取照顾者对研究方案决策的意见。第一种方法是对糖尿病患儿的照顾者（n = 21）进行调查，询问研究方案的哪些方面会使家庭更有可能或不太可能参与。第二种方法是举办一个社区参与（CE）工作室，从不同的糖尿病患儿照顾者群体（n = 7）那里获取关于招募和入组关键方面的建议。
调查和CE工作室的结果均表明，照顾者有兴趣且愿意参与此类纵向研究。两种方法在补偿类型和金额、便捷的研究访视、灵活的日程安排选项以及获取神经认知测试结果等方面产生了相似的偏好。CE工作室的建议包括其他一些策略，以尽量减少参与者的负担，并加强围绕研究参与的沟通。
可行性调查和CE工作室都是在研究的规划和设计阶段获取照顾者意见的有用机制。独特的是，CE工作室方法使研究人员能够以最少的工作人员投入获得有价值的社区成员意见。
