TY - JOUR
T1 - The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research
T2 - A Systematic Review
AU - Weaver, Meaghann S.
AU - Mooney-Doyle, Kim
AU - Kelly, Katherine Patterson
AU - Montgomery, Kathleen
AU - Newman, Amy R.
AU - Fortney, Christine A.
AU - Bell, Cynthia J.
AU - Spruit, Jessica L.
AU - Kurtz Uveges, Melissa
AU - Wiener, Lori
AU - Schmidt, Cynthia M.
AU - Madrigal, Vanessa N.
AU - Hinds, Pamela S.
N1 - Funding Information:
The study team thanks the Pediatric Palliative Care Special Interest Group at Children’s National Medical Center. This research was supported in part by the Intramural Research Program of the National Institutes of Health and National Cancer Institute, Center for Cancer Research.
Publisher Copyright:
© Copyright 2019, Mary Ann Liebert, Inc., publishers 2019.
PY - 2019/8
Y1 - 2019/8
N2 - 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.
AB - 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.
KW - benefits and burdens
KW - palliative care research
KW - pediatric palliative care
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U2 - 10.1089/jpm.2018.0483
DO - 10.1089/jpm.2018.0483
M3 - Article
C2 - 30835596
AN - SCOPUS:85070452644
VL - 22
SP - 915
EP - 926
JO - Journal of Palliative Medicine
JF - Journal of Palliative Medicine
SN - 1096-6218
IS - 8
ER -