Grootens-Wiegers Petronella, Visser Eline G, van Rossum Annemarie M C, van Waardhuizen Claudia N, de Wildt Saskia N, Sweep Boudewijn, van den Broek Jos M, de Vries Martine C
Department of Science Communication and Society, Leiden University, Leiden, The Netherlands.
Committee of Medical Ethics, Leiden University Medical Center, Leiden, The Netherlands.
BMJ Paediatr Open. 2017 Aug 23;1(1):e000111. doi: 10.1136/bmjpo-2017-000111. eCollection 2017.
To be able to truly involve adolescents in decision making about clinical research participation, we need more insight in the perspective of adolescents themselves. To this end, adolescents in an ongoing biobank study were consulted to test a tentative decision assessment tool.
The perspectives of adolescents (n=8) concerning participation in decision making for research participation were explored in interviews with a tentative tool, which covered six topics: information material usage, understanding, disease perceptions, anxiety, decision-making process and role sharing.
All adolescents unequivocally expressed the desire to be involved in decision making, but also wanted advice from their parents. The extent of the preferred role of adolescent versus parents varied between individuals. In decision making, adolescents relied on parents for information. More than half hardly used the information material.
Adolescents in our study preferred a shared decision-making process. The extent of sharing varied between individuals. The decision assessment tool was a fruitful starting point to discuss adolescents' perspectives and may aid in tailoring the situation to the individual to achieve optimal participation practices.
Consulting adolescents about their preferences concerning decision making using the tool will facilitate tailoring of the shared decision-making process and optimising the developing autonomy of minors.
为了能够让青少年真正参与到关于临床研究参与的决策中，我们需要更深入地了解青少年自身的观点。为此，我们咨询了一项正在进行的生物样本库研究中的青少年，以测试一种初步的决策评估工具。
通过使用一种初步工具进行访谈，探讨了青少年（n = 8）对参与研究参与决策的看法，该工具涵盖六个主题：信息材料使用、理解、疾病认知、焦虑、决策过程和角色分担。
所有青少年都明确表达了参与决策的愿望，但也希望得到父母的建议。青少年与父母在首选角色上的程度因人而异。在决策过程中，青少年依赖父母提供信息。超过一半的人几乎不使用信息材料。
我们研究中的青少年倾向于共同决策过程。分享的程度因人而异。决策评估工具是讨论青少年观点的一个富有成效的起点，可能有助于根据个体情况进行调整，以实现最佳参与实践。
使用该工具咨询青少年对决策的偏好将有助于调整共同决策过程，并优化未成年人不断发展的自主性。
