The Hospital for Sick Children, Toronto, Canada;
The Hospital for Sick Children, Toronto, Canada.
Pediatrics. 2021 Mar;147(3). doi: 10.1542/peds.2020-003780.
Children with incurable cancer may participate in research studies at the end of life (EOL). These studies create knowledge that can improve the care of future patients.
To describe stakeholder perspectives regarding research studies involving children with cancer at the EOL by conduct of a systematic review.
We used the following data sources: Ovid Medline, Embase, the Cumulative Index to Nursing and Allied Health Literature, PsycINFO, Web of Science, and ProQuest (inception until August 2020).
We selected 24 articles published in English that examined perceptions or experiences of research participation for children with cancer at the EOL from the perspectives of children, parents, and health professionals (HPs).
Two authors independently extracted data, assessed study quality, and performed thematic analysis and synthesis.
Eight themes were identified: (1) seeking control; (2) faith, hope, and uncertainty; (3) being a good parent; (4) helping others; (5) barriers and facilitators; (6) information and understanding; (7) the role of HPs in consent and beyond; and (8) involvement of the child in decision-making.
Study designs were heterogeneous. Only one study discussed palliative care research.
Some families participate in EOL research seeking to gain control and sustain hope, despite uncertainty. Other families choose against research, prioritizing quality of life. Parents may perceive research participation as the role of a "good parent" and hope to help others. HPs have positive views of EOL research but fear that parents lack understanding of the purpose of studies and the likelihood of benefit. We identified barriers to research participation and informed consent.
患有绝症的儿童在生命末期（EOL）可能参与研究。这些研究产生的知识可以改善未来患者的护理。
通过系统综述描述利益相关者对涉及 EOL 癌症儿童的研究的观点。
我们使用了以下数据源：Ovid Medline、Embase、护理学和联合健康文献累积索引、PsycINFO、Web of Science 和 ProQuest（从成立到 2020 年 8 月）。
我们选择了 24 篇以英语发表的文章，从儿童、父母和卫生专业人员（HPs）的角度研究了 EOL 癌症儿童参与研究的看法或经验。
两名作者独立提取数据、评估研究质量，并进行主题分析和综合。
确定了 8 个主题：（1）寻求控制；（2）信仰、希望和不确定性；（3）做个好父母；（4）帮助他人；（5）障碍和促进因素；（6）信息和理解；（7）HPs 在同意和超越同意中的作用；以及（8）儿童在决策中的参与。
研究设计存在异质性。只有一项研究讨论了姑息治疗研究。
一些家庭参与 EOL 研究是为了寻求控制和维持希望，尽管存在不确定性。其他家庭选择不参与研究，优先考虑生活质量。父母可能认为研究参与是“好父母”的角色，并希望帮助他人。HPs 对 EOL 研究持积极态度，但担心父母对研究目的和获益可能性缺乏了解。我们确定了研究参与和知情同意的障碍。
