Pediatric palliative care, including end-of-life care, remains a relatively new area of interdisciplinary clinical practice and research. Improving the multifaceted and complex care of children and their families involves research that (1) documents the experiences of children with serious illness, their families, and clinicians; (2) evaluates relationships between contextual factors and health outcomes; and (3) establishes a stronger foundation for child- and family-focused interventions to improve care. Partnership among stakeholders in family-focused research begins from design through conduct of the study. This partnership is the foundation of a dynamic research process that illuminates critical perspectives. We present a hypothetical pediatric palliative study; a qualitative descriptive study of the perspectives of adolescents and young adults with life-limiting illnesses and their parents after a discussion about an end-of-life decision. Pediatric palliative care researchers, institutional review board leaders, and the parent of a child who died comment on how to balance the obligations to improve clinical care and to protect participants in research. Their recommendations include recruiting a wide range of participants, differentiating emotional responses from harm, approaching potential participants as individuals, and seeking feedback from family advisory boards and designated reviewers with content expertise.

中文翻译：

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平衡儿科姑息治疗研究的保护和进展：利益相关者的观点。

儿科姑息治疗，包括临终关怀，仍然是一个相对较新的跨学科临床实践和研究领域。改善对儿童及其家庭的多方面和复杂的护理涉及以下研究：(1) 记录患有严重疾病的儿童、他们的家人和临床医生的经历；(2) 评估环境因素与健康结果之间的关系；(3) 为以儿童和家庭为中心的干预措施奠定更坚实的基础，以改善护理。在以家庭为中心的研究中，利益相关者之间的伙伴关系从研究的设计开始。这种伙伴关系是阐明批判性观点的动态研究过程的基础。我们提出了一项假设的儿科姑息性研究；在讨论了临终决定后，对患有限制生命的疾病的青少年和年轻人及其父母的观点进行了定性描述性研究。儿科姑息治疗研究人员、机构审查委员会负责人和死亡儿童的父母就如何平衡改善临床护理和保护研究参与者的义务发表了评论。他们的建议包括招募广泛的参与者，区分情绪反应和伤害，以个人身份接近潜在参与者，以及寻求家庭咨询委员会和具有内容专业知识的指定审查员的反馈。和一名死亡儿童的父母评论如何平衡改善临床护理和保护研究参与者的义务。他们的建议包括招募广泛的参与者，区分情绪反应和伤害，以个人身份接近潜在参与者，以及寻求家庭咨询委员会和具有内容专业知识的指定审查员的反馈。和一名死亡儿童的父母评论如何平衡改善临床护理和保护研究参与者的义务。他们的建议包括招募广泛的参与者，区分情绪反应和伤害，以个人身份接近潜在参与者，以及寻求家庭咨询委员会和具有内容专业知识的指定审查员的反馈。