Improving Intensive End-of-Life Care for Infants and Children: A Scoping Review of Intervention Elements

TL;DR

This review finds that most interventions in pediatric end-of-life care focus on improving clinician knowledge, with less attention to supporting families.

Contribution

The study identifies a gap in interventions targeting family outcomes in pediatric and neonatal end-of-life care.

Findings

Most interventions aimed to improve clinician knowledge and clinical processes.

Few interventions focused on family outcomes like parental empowerment or bereavement.

Nursing workflows were rarely used to improve end-of-life care in pediatric critical care.

Abstract

What are the main findings?
Most interventions targeted clinician knowledge as a primary outcome, whereas fewer interventions targeted family outcomes.Few interventions utilized nursing workflows to improve end-of-life care in pediatric and neonatal critical care settings.

Most interventions targeted clinician knowledge as a primary outcome, whereas fewer interventions targeted family outcomes.

Few interventions utilized nursing workflows to improve end-of-life care in pediatric and neonatal critical care settings.

What are the implications of the main findings?
Findings underscore the need for interventions that target family outcomes, especially parental empowerment.More interventions should assess family outcomes and aim to integrate families in development.

Findings underscore the need for interventions that target family outcomes, especially parental empowerment.

More interventions should assess family outcomes and aim to integrate families in development.

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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