Meaghann S Weaver1, Kim Mooney-Doyle2, Katherine Patterson Kelly3, Kathleen Montgomery4, Amy R Newman5,6, Christine A Fortney7, Cynthia J Bell8, Jessica L Spruit8, Melissa Kurtz Uveges9, Lori Wiener10, Cynthia M Schmidt11, Vanessa N Madrigal12, Pamela S Hinds13,14. 1. 1Department of Pediatrics, Children's Hospital and Medical Center, Omaha, Nebraska. 2. 2Department of Family and Community Health, University of Maryland School of Nursing, Baltimore, Maryland. 3. 3Department of Nursing Science, Professional Practice, and Quality Children's National Health System, George Washington University School of Medicine and Health Sciences, Washington, DC. 4. 4Department of Nursing, American Family Children's Hospital, Madison, Wisconsin. 5. 5College of Nursing, University of Utah, Salt Lake City, Utah. 6. 6Medical College of Wisconsin/Children's Hospital of Wisconsin, Milwaukee, Wisconsin. 7. 7Martha S. Pitzer Center for Women, Children & Youth, College of Nursing, Ohio State University, Columbus, Ohio. 8. 8College of Nursing, Wayne State University, Detroit, Michigan. 9. 9Center for Bioethics, Harvard Medical School, Brigham and Women's Hospital, Boston, Massachusetts. 10. 10National Cancer Institute, Center for Cancer Research, National Institutes of Health, Bethesda, Maryland. 11. 11McGoogan Library of Medicine, University of Nebraska Medical Center, Omaha, Nebraska. 12. 12Division of Critical Care Medicine, Department of Pediatrics, Children's National Health Systems, George Washington University, Washington, DC. 13. 13Department of Nursing Science, Professional Practice & Quality, Children's National Health System, George Washington University, Washington, DC. 14. 14Department of Pediatrics, George Washington University, Washington, DC.
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.
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.
Entities:
Keywords:
benefits and burdens; palliative care research; pediatric palliative care
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