重新同意儿科研究参与者在接近法定成年期时的参与：来自 SPARK 自闭症研究的经验教训。
Re-Consenting Pediatric Research Participants as Legal Adulthood Approaches: Lessons from the SPARK Autism Study.
机构信息
Department of Health Sciences, Towson University, 8000 York Road - CHP Dean's Office, Towson, MD, 21252, USA.
Simons Foundation, 160 5th Avenue, New York, NY, 10010, USA.
出版信息
J Autism Dev Disord. 2024 Jan;54(1):18-32. doi: 10.1007/s10803-022-05774-x. Epub 2022 Nov 2.
To explore issues surrounding re-consenting youth in longitudinal studies as they reach legal adulthood interviews were conducted with 46 parents plus 13 autistic teens enrolled in the Simons Foundation Powering Autism Research for Knowledge (SPARK) study. Qualitative analysis focused on family sensitivities regarding guardianship decisions, transition concerns, and the re-consenting process. Questions regarding guardianship were difficult for parents unsure of a teen's future status. Mothers were key facilitators of re-consenting for soon-to-be-independent teens. As legal adulthood approached, parents were willing to assist teens with re-consenting but needed support, asking for multiple contacts, transition resources, and explanatory materials from the research team. Most teens were not cognizant of SPARK but willing to continue participation once made aware.
为了探索在纵向研究中重新获得法定成年的青少年同意的问题，我们对参加西蒙斯基金会自闭症研究知识动力（SPARK）研究的 46 位家长和 13 位自闭症青少年进行了访谈。定性分析主要关注家庭对监护权决定、过渡问题以及重新同意过程的敏感性。对于未来青少年状况不确定的父母来说，监护权问题很困难。母亲是即将独立的青少年重新同意的关键促进者。随着法定成年的临近，父母愿意帮助青少年重新同意，但需要支持，他们要求研究团队提供多次联系、过渡资源和解释材料。大多数青少年不知道 SPARK，但一旦意识到这一点，他们愿意继续参与。
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