• Meaghann S Weaver, Kim Mooney-Doyle, Katherine Patterson Kelly, Kathleen Montgomery, Amy R Newman, Christine A Fortney, Cynthia J Bell, Jessica L Spruit, Kurtz Uveges Melissa M 9Center for Bioethics, Harvard Medical School, Brigham and Women's Hospital, Boston, Massachusetts., Lori Wiener, Cynthia M Schmidt, Vanessa N Madrigal, and Pamela S Hinds.
• 1Department of Pediatrics, Children's Hospital and Medical Center, Omaha, Nebraska.
• J Palliat Med. 2019 Aug 1; 22 (8): 915-926.

Abstract Objective: The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. Background: 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. Methods: 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). Results: 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. Discussion: 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.

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