The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review

Authors

Meaghann S. WeaverFollow
Kim Mooney-Doyle, University of Maryland School of NursingFollow
Katherine Patterson Kelly, George Washington University School of Medicine and Health Sciences
Kathleen Montgomery, American Family Children's Hospital
Amy Rose Newman, Marquette UniversityFollow
Christine A. Fortney, Ohio State University
Cynthia J. Bell, Wayne State UniversityFollow
Jessica L. Spruit, Wayne State University
Melissa Kurtz Uveges, Harvard Medical School
Lori Wiener, National Cancer Institute
Cynthia M. Schmidt, University of Nebraska Medical Center
Vannessa N. Madrigal, George Washington University
Pamela S. Hinds, George Washington University

Document Type

Article

Language

eng

Publication Date

8-1-2019

Publisher

Mary Ann Liebert, Inc.

Source Publication

Journal of Palliative Medicine

Source ISSN

1096-6218

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.

Comments

Accepted version. Journal of Palliative Medicine, Vol. 22, No. 8 (August 1, 2019): 915-926. DOI. © 2019 Mary Ann Liebert, Inc. Used with permission.

Amy R. Newman was affiliated with University of Utah and Medical College of Wisconsin/Children's Hospital of Wisconsin at the time of publication.

Supplemental material.

Recommended Citation

Weaver, Meaghann S.; Mooney-Doyle, Kim; Kelly, Katherine Patterson; Montgomery, Kathleen; Newman, Amy Rose; Fortney, Christine A.; Bell, Cynthia J.; Spruit, Jessica L.; Uveges, Melissa Kurtz; Wiener, Lori; Schmidt, Cynthia M.; Madrigal, Vannessa N.; and Hinds, Pamela S., "The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review" (2019). College of Nursing Faculty Research and Publications. 671.
https://epublications.marquette.edu/nursing_fac/671