Vallo-Sacchettini Alana, Zimmermann Cristina, Janjic Olivier, Rost Michael, Elger Bernice
Institute for Biomedical Ethics, University of Basel, Basel, Switzerland.
Department of Otolaryngology, Head and Neck Surgery, Geneva University Hospital, Geneva, Switzerland.
Pediatr Transplant. 2025 Sep;29(6):e70146. doi: 10.1111/petr.70146.
In pediatrics, the triadic relationships between the adolescent, parents, and healthcare providers, as well as an adolescent's evolving developmental status, render decision-making unique and challenging. The aim of this study was to explore adolescents' decision-making preferences regarding pediatric organ transplantation.
Semi-structured one-on-one interviews were carried out with 17 patients aged 12-30 years (M = 20, SD = 5) who received organ transplants between the ages of 9 and 20 years (M = 13, SD = 3). The data were qualitatively analyzed via content analysis with a focus on an adolescent's involvement in decision-making.
The participants considered various factors important for their appropriate involvement in decisions. These factors were grouped into three main areas: (1) a participant's role in decision-making, (2) determinants of involvement in decision-making, and (3) expression of the final decision. The most frequently described factors included the adolescent's age, concerns about what was happening to their body, the importance of social support systems, capacity to understand, and time given to adapt.
According to Swiss law, being a minor does not deem adolescents incompetent; hence, adolescents can be legally competent in making medical decisions. Moreover, adolescents are the ones most affected by their illness and their respective treatment. It is therefore crucial to give a voice to them and to center their preferences in decision-making. Our study shows that a range of distinct preferences concerning decision-making and involvement exist among adolescents and, as such, can serve as points of leverage to improve the quality of care for this understudied patient population.
在儿科领域，青少年、父母和医疗服务提供者之间的三角关系，以及青少年不断发展的发育状况，使得决策变得独特且具有挑战性。本研究的目的是探讨青少年对儿科器官移植的决策偏好。
对17名年龄在12至30岁（平均年龄=20岁，标准差=5岁）的患者进行了半结构化一对一访谈，这些患者在9至20岁（平均年龄=13岁，标准差=3岁）之间接受了器官移植。通过内容分析对数据进行定性分析，重点关注青少年在决策过程中的参与情况。
参与者认为各种因素对他们适当参与决策很重要。这些因素分为三个主要方面：（1）参与者在决策中的角色，（2）参与决策的决定因素，（3）最终决策的表达。最常提到的因素包括青少年的年龄、对自己身体状况的担忧、社会支持系统的重要性、理解能力以及适应所需的时间。
根据瑞士法律，作为未成年人并不意味着青少年无行为能力；因此，青少年在做出医疗决策时在法律上可以具有行为能力。此外，青少年是受疾病及其各自治疗影响最大的人群。因此，让他们发声并将他们的偏好作为决策的核心至关重要。我们的研究表明，青少年在决策和参与方面存在一系列不同的偏好，因此可以作为提高对这一研究不足的患者群体护理质量的着力点。
