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

Area of Science:

• Pediatric Palliative Care Research
• Clinical Ethics
• Health Services Research

Background:

• Pediatric palliative care research is crucial for advancing interventions but poses ethical challenges.
• A balance is needed between improving care and protecting vulnerable child populations from research burdens.
• Existing research lacks comprehensive assessment of participant and researcher experiences.

Purpose of the Study:

• To systematically review and report the benefits and burdens of palliative research participation.
• To explore the perspectives of children, siblings, parents, clinicians, and researchers involved in pediatric palliative care research.
• To identify gaps in the current understanding of research participation impacts.

Main Methods:

• Systematic review adhering to PRISMA guidelines, with a registered protocol (PROSPERO #CRD42018087304).
• Comprehensive database searches (MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, Cochrane Library) from 2000-2017.
• Inclusion of English-language studies on benefits/burdens for pediatric patients, families, clinicians, or research teams; quality appraisal using MMAT.

Main Results:

• Twenty-four studies met inclusion criteria, reporting on children (6), siblings (2), parents (19), clinicians (3), and researchers (5).
• Families emphasized benefits, while researchers and clinicians highlighted burdens.
• No studies utilized a validated scale to measure benefits and burdens.

Conclusions:

• There is a significant lack of published research on the benefits and burdens experienced by participants and researchers in pediatric palliative care studies.
• A validated instrument or interview measure for assessing benefits and burdens is needed in the design and reporting of pediatric palliative and end-of-life research.
• Implementing such measures will enhance ethical research practices and improve the research experience for all involved.