van Driessche Anne, La Rondelle Leonie, Boelen Paul A, Brunetta Julie, Kars Marijke C, Spuij Mariken, Nijhof Sanne L, Fahner Jurrianne C
End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Laarbeeklaan 103, Brussels, 1090, Belgium.
Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), Brussels, 1090, Belgium.
BMC Palliat Care. 2025 May 9;24(1):133. doi: 10.1186/s12904-025-01751-0.
Despite evidence on the benefits for including children in their own (palliative) care, studies show that children are not sufficiently involved nor are their preferences sufficiently elicited in a developmentally appropriate manner. The aim of this scoping review is to provide an overview of characteristics of child development in the context of serious illness.
A scoping review was performed using methods from Arksey and O'Malley and the Joanna Briggs Institute. A structured literature search was conducted in four databases: Medline, Embase, Psychinfo and CINAHL. Articles were included until October 2022. Thematic analysis was performed to present domains and key factors influencing child development.
We selected 24 out of 11,246 articles. We found different characteristics describing the ongoing development of seriously ill children in early to middle childhood, early adolescence, and middle to late adolescence. Key themes were: psychological/emotional aspects, general cognitive aspects, social aspects, coping strategy, conceptualization of illness, conceptualization of death, and communication about their illness. Several accelerators of ongoing development were found (e.g. cortical maturation, prior medical experience, social experience with adults) and several decelerators (e.g. stress, hospital admission, avoidance of illness-related communication in the family).
Our review highlights essential aspects to consider when discussing illness and healthcare preferences with children at various developmental stages. However, our findings also underscore a significant gap in understanding the factors that impact the development of children with a serious illness. It is recommended to monitor development throughout the illness trajectory to gather more evidence and utilize this information to support the child's engagement in their own healthcare in a developmentally appropriate way.
尽管有证据表明让儿童参与自身（姑息）护理有益，但研究表明，儿童并未得到充分参与，其偏好也未以适合其发育阶段的方式得到充分了解。本范围综述的目的是概述重症患儿发育的特征。
采用阿克西和奥马利以及乔安娜·布里格斯研究所的方法进行范围综述。在四个数据库中进行结构化文献检索：医学文献数据库（Medline）、荷兰医学文摘数据库（Embase）、心理学文摘数据库（Psychinfo）和护理学与健康领域数据库（CINAHL）。纳入截至2022年10月的文章。进行主题分析以呈现影响儿童发育的领域和关键因素。
我们从11246篇文章中筛选出24篇。我们发现了不同特征，描述了幼儿期至童年中期、青春期早期以及青春期中期至晚期重症患儿的持续发育情况。关键主题包括：心理/情感方面、一般认知方面、社会方面、应对策略、疾病概念化、死亡概念化以及关于其疾病的沟通。发现了一些持续发育的促进因素（如皮质成熟、既往医疗经历、与成年人的社交经历）和一些阻碍因素（如压力、住院、家庭中避免与疾病相关的沟通）。
我们的综述强调了在与处于不同发育阶段的儿童讨论疾病和医疗保健偏好时需要考虑的重要方面。然而，我们的研究结果也凸显了在理解影响重症患儿发育的因素方面存在重大差距。建议在整个疾病过程中监测发育情况，以收集更多证据，并利用这些信息以适合其发育阶段的方式支持儿童参与自身的医疗保健。
