Graduate School of Interdisciplinary Information Studies, The University of Tokyo, Tokyo, Japan.
National Institute for Environmental Studies, Tsukuba, Japan.
Health Expect. 2018 Feb;21(1):358-366. doi: 10.1111/hex.12630. Epub 2017 Sep 22.
One of the ethical issues surrounding birth cohort studies is how to obtain informed assent from children as they grow up. What and how parents tell their children affects children's future choices about the study, yet few studies have focused on parents' influence on children.
This study examines parents' attitudes towards telling their children about their participation in a specific birth cohort study.
We conducted surveys and in-depth interviews with the parents of children who participated in the "Japan Environment and Children's Study" (JECS), which follows children from the foetal stage to age 13.
Forty-four mothers and 23 fathers answered the survey, and 11 mothers and 3 fathers participated in in-depth interviews. Parents' attitudes towards "telling" were categorized into 3 communication styles depending on their perception of the risk/benefits for their children. Most parents predicted that the study would benefit their children and preferred "directive telling," which we divided into "empowered telling" (provides children with a positive identity as participants) and "persuasive telling" (attempts to persuade children even if they express reluctance as they grow). A few parents, weighing the study's potential risk, preferred "non-directive telling," which respects children's choices even if that means withdrawing from the study.
While "directive telling" may lead children to have positive associations with the study, children should also be told about the risks. Investigators can provide materials that support parents and give children age-appropriate information about their participation, as well as ensure opportunities for children to express their feelings.
围绕着出生队列研究的一个伦理问题是如何在孩子成长过程中获得他们的知情同意。父母向孩子讲述的内容和方式会影响孩子未来对研究的选择，但很少有研究关注父母对孩子的影响。
本研究考察了父母对向孩子讲述他们参与特定出生队列研究的态度。
我们对参加“日本环境与儿童研究”（JECS）的儿童的父母进行了调查和深入访谈，该研究从胎儿期一直跟踪到 13 岁。
44 位母亲和 23 位父亲回答了调查，11 位母亲和 3 位父亲参加了深入访谈。父母对“告知”的态度根据他们对孩子的风险/受益的看法分为 3 种沟通方式。大多数父母预测研究对孩子有益，并倾向于“直接告知”，我们将其分为“赋权告知”（赋予孩子作为参与者的积极身份）和“劝导告知”（即使孩子表示不愿意，也试图说服他们）。少数父母权衡研究的潜在风险，倾向于“非直接告知”，即使这意味着退出研究，也要尊重孩子的选择。
虽然“直接告知”可能使孩子对研究产生积极的联想，但也应该告诉孩子研究的风险。研究人员可以提供支持父母的材料，并向孩子提供适合其年龄的关于他们参与研究的信息，同时确保孩子有机会表达自己的感受。
