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The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review.
- Source :
-
Journal of Palliative Medicine . Aug2019, Vol. 22 Issue 8, p915-926. 12p. 2 Diagrams, 1 Chart. - Publication Year :
- 2019
-
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. [ABSTRACT FROM AUTHOR]
- Subjects :
- *SIBLINGS
*CINAHL database
*INFORMATION storage & retrieval systems
*MEDICAL databases
*MEDICAL information storage & retrieval systems
*PSYCHOLOGY information storage & retrieval systems
*INTERPERSONAL relations
*MEDLINE
*PALLIATIVE treatment
*PEDIATRICS
*SYSTEMATIC reviews
*EXTENDED families
*PSYCHOSOCIAL factors
*AT-risk people
*PARENT attitudes
*PHYSICIANS' attitudes
*FAMILY attitudes
Subjects
Details
- Language :
- English
- ISSN :
- 10966218
- Volume :
- 22
- Issue :
- 8
- Database :
- Academic Search Index
- Journal :
- Journal of Palliative Medicine
- Publication Type :
- Academic Journal
- Accession number :
- 137913343
- Full Text :
- https://doi.org/10.1089/jpm.2018.0483