1Department of Pediatrics, Children's Hospital and Medical Center, Omaha, Nebraska.
2Department of Family and Community Health, University of Maryland School of Nursing, Baltimore, Maryland.
J Palliat Med. 2019 Aug;22(8):915-926. doi: 10.1089/jpm.2018.0483. Epub 2019 Mar 5.
The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens. Systematic review followed PRISMA guidelines with prepared protocol registered as PROSPERO #CRD42018087304. MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, and The Cochrane Library were searched (2000-2017). English-language studies depicting the benefits or burdens of palliative care or end-of-life research participation on either pediatric patients and/or their family members, clinicians, or study teams were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). Twenty-four studies met final inclusion criteria. The benefit or burden of palliative care research participation was reported for the child in 6 papers; siblings in 2; parents in 19; clinicians in 3; and researchers in 5 papers. Benefits were more heavily emphasized by patients and family members, whereas burdens were more prominently emphasized by researchers and clinicians. No paper utilized a validated benefit/burden scale. The lack of published exploration into the benefits and burdens of those asked to take part in pediatric palliative care research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and end-of-life research design and reporting.
本研究旨在报告姑息治疗研究对儿童、兄弟姐妹、父母、临床医生和研究人员的获益和负担。儿科姑息治疗需要研究来完善科学并改进干预措施。一方面，人们希望增强儿童及其家庭的姑息治疗和临终关怀，另一方面，需要保护这些潜在弱势群体免受不利负担，因此存在一种紧张关系。系统评价遵循 PRISMA 指南，已制定方案并在 PROSPERO 注册，注册号为 CRD42018087304。检索了 MEDLINE、CINAHL、PsycINFO、EMBASE、Scopus 和 The Cochrane Library（2000-2017 年）。符合纳入标准的研究为描述姑息治疗或临终关怀研究对儿科患者及其家庭成员、临床医生或研究团队的获益或负担的英文研究。使用混合方法评估工具（MMAT）评估研究质量。最终有 24 项研究符合纳入标准。有 6 篇论文报告了姑息治疗研究参与对儿童的获益或负担；2 篇论文报告了对兄弟姐妹的获益或负担；19 篇论文报告了对父母的获益或负担；3 篇论文报告了对临床医生的获益或负担；5 篇论文报告了对研究人员的获益或负担。患者和家庭成员更强调获益，而研究人员和临床医生更强调负担。没有一篇论文使用经过验证的获益/负担量表。令人惊讶的是，几乎没有发表的研究探讨了被要求参与儿科姑息治疗研究的人和进行研究的人的获益和负担。需要在儿科姑息治疗和临终关怀研究的设计和报告中实施经过验证的获益/负担工具或访谈措施。
