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 - 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
UR - http://www.scopus.com/inward/record.url?scp=85070452644&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85070452644&partnerID=8YFLogxK
U2 - 10.1089/jpm.2018.0483
DO - 10.1089/jpm.2018.0483
M3 - Article
C2 - 30835596
AN - SCOPUS:85070452644
SN - 1096-6218
VL - 22
SP - 915
EP - 926
JO - Journal of Palliative Medicine
JF - Journal of Palliative Medicine
IS - 8
ER -