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Improving Intensive End-of-Life Care for Infants and Children: A Scoping Review of Intervention Elements
Elizabeth G Broden Arciprete1,2, Na Ouyang3, Sarah E Wawrzynski4
1National Clinician Scholars Program, School of Medicine, Yale University, New Haven, CT 06520, USA.
Insights
Pediatric critical care interventions for children nearing end-of-life (EOL) primarily focus on clinician education. Future research should prioritize family-centered outcomes in neonatal and pediatric intensive care units (NICUs/PICUs).
Area of Science:
- Pediatric Critical Care Medicine
- Palliative Care
- Healthcare Intervention Research
Background:
- High-quality pediatric critical care necessitates robust support for children nearing end-of-life (EOL) and their families.
- Understanding existing EOL interventions in neonatal and pediatric intensive care units (NICUs/PICUs) is crucial for identifying research gaps.
Purpose of the Study:
- To conduct a scoping review evaluating the characteristics of EOL interventions for children in PICUs.
- To identify common intervention elements, contextual factors, and implementation challenges.
Main Methods:
- A comprehensive literature search was performed across six major databases, supplemented by reference searching.
- Interprofessional interventions aimed at children dying from any cause were included.
- Data extraction focused on intervention components, context, barriers, and facilitators, with qualitative coding for analysis.
Main Results:
- Of 44 included studies, most focused on neonatal ICUs (64%) and general PICUs (23%).
- Interventions primarily targeted clinician knowledge (57%), clinical structures/processes (25%), and communication (18%), often delivered via practice changes (57%) and education (45%).
- Outcomes measured included clinician knowledge (39%) and qualitative feedback (41%), with limited examination of family mental health (7%) or bereavement (5%).
Conclusions:
- Current EOL interventions in pediatric critical care predominantly aim to improve clinician outcomes through education.
- There is a critical need to design, test, and implement interventions specifically focused on enhancing family outcomes and experiences.
Background/Objectives:
High-quality pediatric critical care includes supporting children nearing the end-of-life (EOL) and their families. Cataloging existing interventions for children dying in the neonatal or pediatric intensive care unit (NICU, PICU) establishes critical areas for future research. In this scoping review, we evaluated characteristics of PICU EOL interventions.
Methods:
A librarian guided a search of OVID Medline, CINAHL, OVID PsycINFO, OVID Embase, Cochrane Central, and Web of Science, plus backwards and forwards reference searching. We included interprofessional interventions, defined as any systematic change (e.g., educational programs, symptom management, electronic medical record, etc.), for children dying from any cause. Studies were independently screened by two reviewers. Data were extracted by one team member and reviewed by a second. We extracted intervention elements, contextual factors, implementation barriers/facilitators, and generated frequencies from qualitative coding.
Results:
Of 11,643 screened articles, 44 met the inclusion criteria. Most were in neonatal ICUs (n = 28/44, 64%) and general PICUs (n = 10/44, 23%). Most interventions aimed to improve clinician knowledge (25/44, 57%), augment clinical structures and processes (n = 11/44, 25%), or enhance communication (n = 8/44, 18%). Common delivery methods included clinical practice changes (n = 25/44, 57%; e.g., protocols, order sets [n = 12]), and educational sessions (n = 20/44, 45%). Outcomes included clinician knowledge (n = 17/44, 39%), qualitative feedback (n = 18/44, 41%), feasibility/acceptability (n = 12/44, 27%), or treatment utilization (n = 11/44, 25%). Few examined families' mental health (n = 3, 7%) or bereavement (n = 2, 5%). Few reported implementation facilitators or barriers.
Conclusions:
Most included studies targeted clinician outcomes through education. Designing, testing, and implementing interventions focused on family outcomes is a critical next step.
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