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Review

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

by
Elizabeth G. Broden Arciprete
1,2,*,
Na Ouyang
3,
Sarah E. Wawrzynski
4,
Ijeoma J. Eche-Ugwu
5,6,
Janene Batten
7,
Deena K. Costa
1,3,
Shelli L. Feder
1,3,† and
Jennifer M. Snaman
6,8,†
1
National Clinician Scholars Program, School of Medicine, Yale University, New Haven, CT 06520, USA
2
School of Public Health, Yale University, New Haven, CT 06510, USA
3
School of Nursing, Yale University, Orange, CT 06477, USA
4
Center for Healthcare Delivery Science, Nemours Children’s Health, Delaware Valley, DE 19803, USA
5
Phyllis F. Cantor Center for Research in Nursing and Patient Care Services, Dana-Farber Cancer Institute, Boston, MA 02215, USA
6
Harvard Medical School, Boston, MA 02215, USA
7
Harvey Cushing/John Hay Whitney Medical Library, Yale University, New Haven, CT 06520, USA
8
Department of Supportive Oncology, Dana-Farber Cancer Institute, Boston, MA 02215, USA
*
Author to whom correspondence should be addressed.
†
These authors contributed equally to this work.
Children 2025, 12(11), 1485; https://doi.org/10.3390/children12111485
Submission received: 3 October 2025 / Revised: 27 October 2025 / Accepted: 30 October 2025 / Published: 3 November 2025
(This article belongs to the Section Pediatric Anesthesiology, Pain Medicine and Palliative Care)
Browse Figures
Review Reports Versions Notes

Highlights

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.
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.

Abstract

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.

1. Introduction

A child’s death is life-altering, leading to life-long grief for their families [1,2,3,4,5,6,7]. Many children and families navigate end-of-life (EOL), the last days or hours of an illness or injury, in a neonatal or pediatric intensive care unit (NICU, PICU) [8,9,10]. Optimal EOL care for infants and children care includes a multidisciplinary, team-based approach that considers physical symptoms, family spiritual and emotional needs, and meaning-making opportunities [7,11,12]. As the clinicians most frequently at the bedside, nurses are well-positioned to assess, evaluate, and connect families with the support they need during EOL. Interprofessional EOL care that fully leverages nurses’ roles is therefore critical to supporting families and minimizing adverse grief outcomes.
Optimizing interprofessional EOL care for infants and children in the ICU setting requires an evidence base of rigorously tested interventions. Generally low pediatric mortality rates mean that clinicians may rarely apply palliative and EOL skills learned during pre-licensure training, instead learning on the job. Studies of family and clinician experiences illuminate several gaps in EOL care that exacerbate parental distress [13,14,15,16]. These include fragmented communication, strained relationships within and between clinical teams and families, and limited structural support for families and clinicians, among others [13,14,15,16]. Supportive interventions that can be readily integrated into routine care could help address these known barriers to high-quality EOL care. While many interventions focused on improving EOL care have been developed, a systematic understanding of what elements interventions include and which parent-identified gaps they target is lacking.
Although EOL care interventions are increasingly common, systematic evaluations of their components—including who, how, and when interventions are delivered and implemented—remain lacking. Systematically cataloging existing interventions is necessary to ensure all dying children in the NICU/PICU receive compassionate, evidence-based care from well-trained clinicians. Therefore, we conducted a scoping review to evaluate interventions for children nearing EOL in the NICU/PICU.

2. Materials and Methods

2.1. Design

This scoping review [17] followed Arksey and O’Malley’s method [18], including (1) identifying the research question (Section 2.1), (2) identifying relevant studies (Section 2.2), (3) study selection (Section 2.3), (4) charting the data (Section 2.5 and Section 2.6), and (5) collating, summarizing, and reporting the results (Section 2.6 and Section 3). We did not incorporate a patient and family engagement step as proposed by Levac et al. [19]. The following research question guided the review: how are pediatric EOL interventions designed and delivered, who delivers and receives them, what outcomes do they aim to effect, and what factors facilitate or inhibit their implementation?
We used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA-ScR) guidelines Extension for Scoping Reviews [20]. The review protocol was registered on the Open Science Foundation (https://doi.org/10.17605/OSF.IO/7ST2E accessed on 1 October 2025). We made minor protocol amendments, specifically to the synthesis and analysis phase, as needed based on the content of included articles. The manuscript was published on a pre-print server on 6 October 2025 (https://doi.org/10.20944/preprints202510.0396.v1, accessed on 1 October 2025).

2.2. Search Strategy

A medical librarian (JB) and the first author (EGBA) developed a search strategy that was peer-reviewed by another medical librarian (Supplement S1). Electronic databases included Ovid MEDLINE(R) ALL, OVID APA PsycINFO, OVID Embase, CINAHL, Cochrane Central, and Web of Science. Search terms included both controlled vocabulary and synonymous free text to capture these concepts: population (children with life-threatening conditions), care settings (intensive care units), and interventions (intervention, education, training, etc.). We used Citationchaser [21] to identify additional articles using backward and forward reference searching.

2.3. Selection Criteria

To capture interprofessional interventions, articles with the search terms in the title, abstract, or subheadings and the word “nurse” within the full text were included. This allowed us to evaluate interventions that meaningfully involved nurses in their implementation and impact in a variety of ways. We included reports of empirically evaluated interventions designed to support EOL care for children (i.e., last days of life) dying from any cause in any intensive care setting (e.g., neonatal, pediatric, and cardiac). We defined intervention broadly as any practice change focused on bedside EOL care (e.g., educational programs, symptom management, communication training, order sets, electronic medical record modifications, etc.). Eligible articles formally evaluated the interventions using quantitative, qualitative, or mixed methods, with outcomes reported by patients, families, or clinicians. We included all research designs and quality improvement efforts.
To capture as many interventions as possible, we made no exclusions based on publication year, location, or language. We translated articles published in languages other than English using Google translate [22] or ChatGPT (GPT-4; OpenAI) if needed. Studies were included if they reported results specific to ICU populations or if >50% of patients died in the ICU. Studies not explicitly focused on the EOL period were included only if >50% of patients died during the study period. We excluded reviews, opinion articles, dissertations, and editorials. Articles describing clinical practice changes without formal evaluation were excluded.

2.4. Screening and Data Management

Search results were uploaded and deduplicated in EndNote (version 20—Thompson Reutres) then uploaded into COVIDENCE systematic review software (Veritas Health Information) [23]. Two reviewers from a team of four authors (EGBA, NO, SEW, IJEU) independently screened study titles and abstracts. Discrepancies were resolved by a third reviewer from the team of four. Full text studies that met criteria were reviewed using the same process and team.

2.5. Data Extraction and Quality Appraisal

We developed and pilot-tested a standardized data extraction form in REDCap [24,25]. Three authors (EGBA, NO, or SEW) independently extracted article information and reviewed extracted data, with discrepancies resolved through discussion. We extracted intervention elements, contextual factors, and implementation barriers and facilitators (Supplement S1). Intervention elements (Figure 1: Box 1) included development processes, goal or intended impact, delivery methods, interventionists and recipients of the intervention, and outcome measures (quantitative metrics and qualitative questions). Contextual factors included sample characteristics, ICU type (neonatal, general PICU, cardiac PICU), and hospital characteristics. We extracted unit- and hospital-level intervention implementation considerations based on the Consolidated Framework for Implementation Research, including barriers and facilitators within the domains of innovation design, outer setting, inner setting, and individuals [26,27]. We also extracted palliative care focus—physical, psychological, spiritual/existential, and/or social [28]. We evaluated methodological rigor using the Mixed Methods Appraisal Tool (MMAT; Supplement S1) [29]; we did not evaluate quality improvement, program evaluation, or implementation project rigor given their small number and heterogeneous designs.

2.6. Analysis

Quantitative data were summarized in STATA [30] using frequencies for categorical and means/medians for continuous variables. For qualitative data, the coding team (EGBA, NO, SW, IJEU) generated descriptive categories from extracted free text about intervention elements and implementation barriers and facilitators from the CFIR [26,27,31], then collaboratively coded 10% of articles in Dedoose [32] before proceeding independently with all coding verified by the first author (EGB). Code frequencies describing intervention elements and implementation barriers and facilitators were generated. Categories were not mutually exclusive and, thus, do not sum to 100% in reporting.
To assess if interventions targeted parent priorities, we mapped intervention goals and outcomes to parent-identified gaps in EOL care. Based on two systematic reviews of parent PICU EOL experiences and one qualitative study of bereaved parents’ recommendations for PICU EOL care [13,16,33], we identified seven parent-identified gaps from these three articles: communication and information sharing, comfort and symptom management, family psychosocial and spiritual care, structural support (e.g., visitation policies), meaning-making (e.g., memento-making), grief and bereavement care, and parental role acknowledgement and empowerment. We tabulated the number of included articles addressing each of these gaps and intervention goals/outcomes.

3. Results

We screened 11,643 articles, assessed 286 full texts for eligibility, and 44 met inclusion criteria (Figure 2). Study designs included non-randomized quantitative (17/44, 39%) [34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50], quantitative descriptive designs (12/44, 27%) [51,52,53,54,55,56,57,58,59,60,61,62], qualitative (4/44, 9%) [63,64,65,66], mixed methods (3/44, 7%) [67,68,69], or other (e.g., quality improvement, pre-post, multimethod, etc.; 8/44, 18%) [70,71,72,73,74,75,76,77]; see Table 1. The neonatal ICU was the most common site (28/44, 64%) followed by general PICU (10/44, 23%). Four (9%) studies were conducted in pediatric cardiac ICUs. Most interventions focused on multiple palliative care domains (38/44, 86%).

3.1. Intervention Elements

Here we summarize intervention elements, contextual factors, implementation facilitators and barriers, and study rigor. Supplement S1: The Table of Evidence contains study details and all citations.
Development: eleven out of forty-four (25%) interventions were developed from prior evidence (e.g., based on prior research, adapted existing interventions) and five (11%) were informed by clinical experience. Eighteen interventions (41%) engaged key partners (e.g., clinicians) in study development; three (7%) involved family members. For example, Zhang et al. engaged bereaved parents to develop a protocol for transferring infants to a specified NICU room with parent sleeping space [35]. Development processes were not explicitly reported in 21/44 (48%) articles.
Goals: Most (25/44, 57%) interventions focused on improving clinician knowledge or comfort with EOL care. Eleven (25%) interventions focused on improving clinical structures and processes. For example, Younge et al. integrated a palliative care protocol, order set, nursing care plan, and comfort medication guidelines into NICU EOL care [36]. Eight (18%) interventions aimed to enhance communication within clinical teams and with families, by increasing regular case discussions [37] or bereavement debriefings for families [38]. Six interventions (14%) integrated palliative care into the ICU; two (5%) supported decision making, [39,40] such as through meetings about discontinuation of life-sustaining treatments [40]. Nine (20%) interventions focused on staff debriefing. Interventions addressing patient and family experiences (12/44, 27%) included symptom management (n = 5, 11%), [36,41,42,43,44] memento-making activities (n = 4, 9%), [35,45,46,47] and support for parents (n = 3, 7%) [35,48,49].
Delivery: Most interventions were delivered through clinical practice changes (25/44, 57%). These included protocols/pathways (n = 12, 27%), team/family meeting processes/structures (n = 9, 20%), order set or medication administration instructions (n = 4, 9%), [36,41,42] electronic health records (n = 2, 5%), [50,51] or environmental modifications (n = 4, 9%) [35,48,49,52]. For example, Carter et al. incorporated EOL content into NICU morbidity and mortality conferences [53]. Other delivery methods included educational sessions (20/44, 45%) and simulations (n = 6, 14%). Ten of 44 (23%) interventions used reflective debriefings, such as peer support [54], emotional debriefing sessions for staff [52,55,56,57,58,59], or follow-up meetings with families [38,60]. Some interventions (7/44, 16%) were delivered by preparing specific personnel (e.g., champions, palliative care teams).
Timing and frequency of interventions: some interventions were integrated (n = 20/44, 45%) or separate (n = 24/44, 54%) from clinical processes. Four of forty-four (9%) interventions occurred once (e.g., singular memory-making experience) [35,45,46,47], and sixteen (36%) repeated changes within the practice setting (e.g., medication administration over the last days of a child’s life) [41]. Eleven (25%) interventions occurred once outside clinical practice (e.g., a one-time simulation) [61] and thirteen (30%) included multiple events outside clinical practice (e.g., simulations throughout PICU fellowship) [62]. Four interventions (9%) included post-mortem processes (e.g., a reflective debriefing, family bereavement meeting) [38,58,59,60].
Interventionists: About a quarter (24%) of interventionists included multiple disciplines (e.g., medicine, nursing, social work), and five (12%) used ICU-based teams. Three (7%) had nurse interventionists [41,48,63] and two (5%) interventionist teams included parents (Table 1) who completed intervention procedures such as photography [47] and educational content [64].
Subspecialty palliative care: Thirteen (39%) studies explicitly involved subspecialty palliative care in intervention development or delivery. In two (5%), no palliative care team was available [65,66], while three (7%) mentioned palliative care teams that were not part of the study [44,49,57]. Nineteen (43%) did not reference palliative care team involvement.
Summary of outcomes: Clinician knowledge, attitudes, or beliefs about palliative and EOL care practices were evaluated in 17/44 (39%) studies. Eighteen (41%) studies examined qualitative feedback. Twelve (27%) studies evaluated treatment utilization metrics (e.g., mechanical ventilation at time of death) [39]; twelve evaluated feasibility/acceptability (27%). Four (9%) evaluated medication use [36,42,43,65]. Five (11%) projects evaluated goals of care documentation or meetings [36,40,51,65,67], and/or patient symptoms/experience [41,42,43,44,67]. Three (7%) studies evaluated clinician mental health (e.g., burnout), [54,56,59] and three (7%) evaluated family mental health [35,39,44]. Two (5%) studies examined parent bereavement (e.g., meaning-making [38], grief experience [52]).
Mapping to parent-identified gaps: parent-identified gaps with the most corresponding interventions (Figure 3) were communication and information sharing (fourteen interventions) and comfort/symptom management (eleven interventions). Six interventions addressed family psychosocial and spiritual support, through integrating palliative care or improving clinical processes like psychosocial consultations. These were evaluated using treatment utilization metrics (n = 3) [35,51,68], or patient/family experience (e.g., parent depression/anxiety (n = 2)) [35,44]. Five interventions addressed structural support for parents through clinical structures/processes, addressing family experience (e.g., specific spaces for EOL) [35,49,52], or enhancing communication (e.g., increasing family conferences) [52]. Structural interventions evaluated family outcomes, treatment utilization metrics, and/or qualitative data.
Four interventions supported meaning-making through memento-making activities which were evaluated qualitatively [45,46,47,48]. Four interventions included grief and bereavement care, through integrating palliative care (n = 2) [39,69], supporting decision making (n = 1) [39], improving clinical structures (n = 1) [67], and/or enhancing communication [52]. For example, Morillo Palma et al.’s palliative care protocol included systematic bereavement follow-up for families [67]. Two interventions [35,48] helped support parental role empowerment by improving clinical structures and processes and addressing patient and family clinical experience, evaluated through family mental health outcomes and qualitative feedback. Specifically, Kymre et al. evaluated nurse-facilitated parent skin-to-skin opportunities for dying neonates [48].

3.2. Contextual Factors

Most studies (25/44, 57%) were conducted in academic institutions. Thirteen (30%) were in freestanding children’s hospitals and 6/44 (14%) in community or government hospitals. Six out of forty-four studies (14%) described multisite approaches.

3.3. Implementation Barriers and Facilitators

Hospital-level (outer setting) implementation facilitators included committed intervention champions (7/44, 16%), support for required time/resources (4/44. 9%) [59,68,70,72], established hospital EOL, palliative, or bereavement programming (7/44, 16%). Barriers included lack of programming (4/44, 9%) [50,65,69,70]. Many studies (26/44, 59%) did not report about hospital-level implementation factors.
Unit-level (inner setting) implementation facilitators included high volume (12/44, 27%), existing family-centered, palliative, or EOL care infrastructure (8/44, 18%). Individual level facilitators included invested individuals (8/44, 18%) and staff enthusiasm (2/44, 5%) [44,57]. Unit-level (inner setting) implementation barriers included technology or procedural issues (10/44, 23%), scheduling (10/44, 23%), and lack of palliative or EOL care infrastructure (3/44, 7%) [61,70,71]. Individual hesitations (2/44, 5%) [41,60] also functioned as barriers, for example, nurses who used an oral or transmucosal comfort medication protocol in Drolet et al.’s study reported discomfort interrupting families’ privacy [41].

3.4. Study Rigor

Common threats to rigor included potential selection or sampling bias (Supplement S1: MMAT Results). Two-thirds, 66% (29/44), of studies reported demographic data of their sample. Most studies utilized a quasi-experimental design, often without a control group, introducing the potential for confounding.

4. Discussion

This scoping review cataloged EOL care intervention elements and implementation considerations in neonatal and pediatric ICUs. Most interventions aimed to improve clinician knowledge about palliative and EOL care through educational programming or improved clinical processes (e.g., team meeting procedures or assessment protocols). Few studies examined family outcomes. Parent-identified gaps of communication and comfort/symptom management were addressed by >10 interventions, whereas just two interventions addressed parental role empowerment. Implementation facilitators included structural factors like established palliative or bereavement programs. Barriers often included scheduling or operational challenges. These findings highlight common strategies used to enhance EOL care in the NICU/PICU and illuminate critical areas for future research and family engagement.
NICU and PICU nurses are uniquely positioned to help assess, support, and advocate for families’ dynamic needs during EOL. Over 40% of intervention teams involved nurses as part of the research team or in intervention design. However, just three (7%) studies evaluated nurse-led interventions that changed routine nursing practice, such as through hands-on care [66], assessment procedures [60], bereavement interventions, and follow up [70]. Given nurses’ uniquely close involvement with children and families during EOL, future interventions should consider leveraging nursing workflows, such as nurse communication and partnership with parents, to enhance EOL care.
Many studies support early palliative care during a child’s serious illness [78,79]. However, few studies in our sample included subspecialty pediatric palliative care in the development, design, or implementation of intervention studies. Research collaborations between NICU/PICU and palliative care teams to develop and test family-centered interventions may be a critical step to strengthen the evidence base for pediatric and neonatal ICU EOL care.
Most interventions relied on educational sessions, simulations, or protocols to improve clinicians’ knowledge about palliative and EOL care. Educational interventions tailored to the NICU/PICU are critical to upholding quality EOL care since most pre-licensure EOL care education focuses on non-pediatric populations, and pediatric ICU mortality is low, meaning NICU and PICU clinicians may not receive much on-the-job EOL training [80,81,82,83]. Simulation studies focused on preparing clinicians for neonatal and pediatric EOL care have demonstrated positive outcomes for clinicians [72,74,84,85]; however, less is known about the ripple effects of such education on patient and family experiences during EOL care, presenting an important area for further evaluation. Additionally, the impact of educational interventions depends on successful integration into complex clinical workflows [86,87,88]. Future studies of EOL care interventions should routinely consider, report, and evaluate implementation facilitators or barriers to help improve scalability and integration into clinical care [86,87].
Mapping intervention goals and outcomes to EOL care gaps reported by parents [13,16,33] revealed important future priorities. Many parents recount issues with how information was shared during their child’s terminal hospitalization [13,16,33]. We identified fourteen studies focused on improving information sharing during clinical care, through integrating palliative care, supporting decision making, improving clinical structures, and enhancing communication. However, outcomes were mostly clinician perspectives or medical record data, rather than family reports. Few interventions focused on enhancing parental role empowerment [41,66], despite recognized importance by bereaved parents [33,89]. Prior qualitative findings retrospectively articulate how clinicians can effectively partner with parents during serious illness [90] and EOL care [4,12,89]. Future research should aim to (1) engage families in designing interventions, (2) prospectively examine family role empowerment during the uncertainty of PICU EOL care, and (3) evaluate family-driven interventions and outcomes.

5. Strengths and Limitations

5.1. Strengths and Limitations of Included Studies

Most screened articles were excluded for describing EOL care without implementing an intervention (Supplement S2). No randomized trials met our inclusion criteria; most studies used quantitative non-randomized or descriptive designs, often without control groups, and in over 25% of cases, without detailed demographic data. These study features limit generalizability or transferability to other populations outside the study context. While randomized controlled trials may be challenging to conduct during intensive EOL care, alternative designs, such as pragmatic trials, cluster and hybrid effectiveness trials, or causal approaches such as interrupted time series analysis may be feasible. Additionally, few studies engaged families in intervention design or study procedures.

5.2. Strengths and Limitations of Review

This scoping review followed a comprehensive, peer-reviewed search strategy and rigorous methodological standards. However, our findings should be interpreted considering several limitations. As with all reviews, our findings are limited due to the choice of databases searched and due to publication bias, which limits our analysis to interventions that have been evaluated and reported in the published literature. The search terms we used were comprehensive and corresponded with leading causes of mortality but may not have captured all causes of death. We limited our sample to interventions conducted in PICUs and NICUs using interprofessional interventions and contained the word nurse in the report. Intervention studies conducted in other settings, such as pediatric oncology, or that did not use an interprofessional approach, could have applicable elements. We limited our focus to last days of life; studies focused on earlier serious illness communication, advanced care planning, or shared decision making could be informative to designing EOL interventions. This scoping review did not aim to compare or evaluate intervention effects, as a meta-analysis was outside of the scope. Our approach and findings may therefore provide a framework to inform future systematic reviews, meta-analyses, and/or realist reviews.

6. Conclusions

Empirically evaluated EOL interventions in pediatric and neonatal intensive care units are scarce. Most published EOL care intervention studies focus on improving clinician knowledge of palliative and EOL care using educational approaches or clinical practice changes evaluated with pre-post designs. Few interventions target parent-reported gaps in EOL care, especially parental role empowerment, include families in intervention development, use designs that account for selection bias or confounding factors, or consider implementation barriers/facilitators. These are important areas of future research to strengthen EOL care.

Supplementary Materials

The following supporting information can be downloaded at: https://www.mdpi.com/article/10.3390/children12111485/s1, Supplement S1: Search strategy, Extraction form, Table of Evidence, Mixed Methods Appraisal Tool Results; Supplement S2: Information about Excluded Studies.

Author Contributions

E.G.B.A.: (1) study conceptualization, (2) data acquisition, analysis, interpretation, (3) manuscript original draft and edits, (4) accountable for manuscript. N.O.: (1) study conceptualization, (2) data acquisition, analysis, interpretation, (3) manuscript original draft and edits, (4) accountable for manuscript. S.E.W.: (1) study conceptualization, (2) data acquisition, analysis, interpretation, (3) manuscript original draft and edits, (4) accountable for manuscript. I.J.E.-U.: (1) study conceptualization, (2) data acquisition, analysis, interpretation, (3) manuscript original draft and edits, (4) accountable for manuscript. J.B.: (1) study conceptualization, (2) data acquisition, (3) manuscript edits, (4) accountable for manuscript. D.K.C.: (1) study conceptualization, (2) manuscript edits, (3) accountable for manuscript. S.L.F.: (1) study conceptualization, (2) data interpretation, (3) manuscript edits, (4) accountable for manuscript. J.M.S.: (1) study conceptualization, (2) data interpretation, (3) manuscript edits, (4) accountable for manuscript. All authors have read and agreed to the published version of the manuscript.

Funding

Broden Arciprete was supported by NIH 5T32HS017589 (Yale Training Program in Health Services Research) and by CTSA Grant Number TL1 TR001864 (NRSA Training Core; National Clinician Scholars Program).

Institutional Review Board Statement

Not applicable.

Informed Consent Statement

Not applicable.

Data Availability Statement

The original contributions presented in this study are included in the article/Supplementary Materials. Further inquiries can be directed to the corresponding author.

Acknowledgments

Authors would like to thank Tom Mead and Vermetha Polite from the Cushing/Whitney Medical Library at Yale University School of Medicine for peer reviewing the search strategy and providing technical support, respectively.

Conflicts of Interest

The authors declare no conflicts of interest.

Abbreviations

The following abbreviations are used in this manuscript:
PICUPediatric Intensive Care Unit
EOLEnd-of-life
ICUIntensive care unit
NICUNeonatal intensive care unit

References

  1. Wheeler, I. Parental Bereavement: The Crisis of Meaning. Death Stud. 2001, 25, 51–66. [Google Scholar] [CrossRef] [PubMed]
  2. Klass, D. Parental Grief: Solace and Resolution; Springer Publishing Company: Berlin/Heidelberg, Germany, 1988; ISBN 978-0-8261-5930-4. [Google Scholar]
  3. Snaman, J.M.; Morris, S.E.; Rosenberg, A.R.; Holder, R.; Baker, J.; Wolfe, J. Reconsidering Early Parental Grief Following the Death of a Child from Cancer: A New Framework for Future Research and Bereavement Support. Support. Care Cancer 2020, 28, 4131–4139. [Google Scholar] [CrossRef] [PubMed]
  4. Broden, E.G.; Werner-Lin, A.; Curley, M.A.Q.; Hinds, P.S. Shifting and Intersecting Needs: Parents’ Experiences During and Following the Withdrawal of Life Sustaining Treatments in the PICU. Intensive Crit. Care Nurs. 2022, 70, 103216. [Google Scholar] [CrossRef]
  5. Davies, R. New Understandings of Parental Grief: Literature Review. J. Adv. Nurs. 2004, 46, 506–513. [Google Scholar] [CrossRef]
  6. Lannen, P.K.; Wolfe, J.; Prigerson, H.G.; Onelov, E.; Kreicbergs, U.C. Unresolved Grief in a National Sample of Bereaved Parents: Impaired Mental and Physical Health 4 to 9 Years Later. J. Clin. Oncol. 2008, 26, 5870. [Google Scholar] [CrossRef]
  7. Meert, K.L.; Briller, S.; Schim, S.M.; Thurston, C.; Kabel, A. Examining the Needs of Bereaved Parents in the Pediatric Intensive Care Unit: A Qualitative Study. Death Stud. 2009, 33, 712–740. [Google Scholar] [CrossRef]
  8. Moynihan, K.M.; Alexander, P.M.A.; Schlapbach, L.J.; Millar, J.; Jacobe, S.; Ravindranathan, H.; Croston, E.J.; Staffa, S.J.; Burns, J.P.; Gelbart, B.; et al. Epidemiology of Childhood Death in Australian and New Zealand Intensive Care Units. Intensive Care Med. 2019, 45, 1262–1271. [Google Scholar] [CrossRef]
  9. Burns, J.P.; Sellers, D.E.; Meyer, E.C.; Lewis-Newby, M.; Truog, R.D. Epidemiology of Death in the PICU at Five U.S. Teaching Hospitals. Crit. Care Med. 2014, 42, 2101–2108. [Google Scholar] [CrossRef]
  10. Moynihan, K.M.; Lelkes, E.; Kumar, R.K.; DeCourcey, D.D. Is This as Good as It Gets? Implications of an Asymptotic Mortality Decline and Approaching the Nadir in Pediatric Intensive Care. Eur. J. Pediatr. 2021, 181, 479–487. [Google Scholar] [CrossRef] [PubMed]
  11. Butler, A.E.; Hall, H.; Copnell, B. The Changing Nature of Relationships between Parents and Healthcare Providers When a Child Dies in the Paediatric Intensive Care Unit. J. Adv. Nurs. 2018, 74, 89–99. [Google Scholar] [CrossRef] [PubMed]
  12. Brooten, D.; Youngblut, J.M.; Seagrave, L.; Caicedo, C.; Hawthorne, D.; Hidalgo, I.; Roche, R. Parent’s Perceptions of Health Care Providers Actions around Child ICU Death: What Helped, What Did Not. Am. J. Hosp. Palliat. Care 2013, 30, 40–49. [Google Scholar] [CrossRef] [PubMed]
  13. Adistie, F.; Neilson, S.; Shaw, K.L.; Bay, B.; Efstathiou, N. The Elements of End-of-Life Care Provision in Paediatric Intensive Care Units: A Systematic Integrative Review. BMC Palliat. Care 2024, 23, 184. [Google Scholar] [CrossRef]
  14. Mu, P.-F.; Tseng, Y.-M.; Wang, C.-C.; Chen, Y.-J.; Huang, S.-H.; Hsu, T.-F.; Florczak, K.L. Nurses’ Experiences in End-of-Life Care in the PICU: A Qualitative Systematic Review. Nurs. Sci. Q. 2019, 32, 12–22. [Google Scholar] [CrossRef]
  15. Barrett, L.; Fraser, L.; Noyes, J.; Taylor, J.; Hackett, J. Understanding Parent Experiences of End-of-Life Care for Children: A Systematic Review and Qualitative Evidence Synthesis. Palliat. Med. 2023, 37, 178–202. [Google Scholar] [CrossRef]
  16. Tezuka, S.; Kobayashi, K. Parental Experience of Child Death in the Paediatric Intensive Care Unit: A Scoping Review. BMJ Open 2021, 11, e057489. [Google Scholar] [CrossRef]
  17. Toh, T.S.W.; Lee, J.H. Statistical Note: Using Scoping and Systematic Reviews. Pediatr. Crit. Care Med. 2021, 22, 572. [Google Scholar] [CrossRef]
  18. Arksey, H.; O’Malley, L. Scoping Studies: Towards a Methodological Framework. Int. J. Soc. Res. Methodol. 2005, 8, 19–32. [Google Scholar] [CrossRef]
  19. Levac, D.; Colquhoun, H.; O’Brien, K.K. Scoping Studies: Advancing the Methodology. Implement. Sci. IS 2010, 5, 69. [Google Scholar] [CrossRef] [PubMed]
  20. Tricco, A.C.; Lillie, E.; Zarin, W.; O’Brien, K.K.; Colquhoun, H.; Levac, D.; Moher, D.; Peters, M.D.J.; Horsley, T.; Weeks, L.; et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Ann. Intern. Med. 2018, 169, 467–473. [Google Scholar] [CrossRef]
  21. Haddaway, N.R.; Grainger, M.J.; Gray, C.T. Citationchaser: An R Package and Shiny App for Forward and Backward Citations Chasing in Academic Searching. Zenedo 2021, 16, 10–5281. [Google Scholar]
  22. Jackson, J.L.; Kuriyama, A.; Anton, A.; Choi, A.; Fournier, J.-P.; Geier, A.-K.; Jacquerioz, F.; Kogan, D.; Scholcoff, C.; Sun, R. The Accuracy of Google Translate for Abstracting Data From Non–English-Language Trials for Systematic Reviews. Ann. Intern. Med. 2019, 171, 677–679. [Google Scholar] [CrossRef]
  23. Covidence—Better Systematic Review Management. Available online: https://www.covidence.org/ (accessed on 5 March 2025).
  24. Harris, P.A.; Taylor, R.; Minor, B.L.; Elliott, V.; Fernandez, M.; O’Neal, L.; McLeod, L.; Delacqua, G.; Delacqua, F.; Kirby, J.; et al. The REDCap Consortium: Building an International Community of Software Platform Partners. J. Biomed. Inform. 2019, 95, 103208. [Google Scholar] [CrossRef]
  25. Harris, P.; Taylor, R.; Thielke, R.; Payne, J.; Gonzalez, N.; Conde, J. Research Electronic Data Capture (REDCap)—A Metadata-Driven Methodology and Workflow Process for Providing Translational Research Informatics Support. J. Biomed. Inform. 2009, 42, 377–381. [Google Scholar] [CrossRef]
  26. Damschroder, L.J.; Reardon, C.M.; Opra Widerquist, M.A.; Lowery, J. Conceptualizing Outcomes for Use with the Consolidated Framework for Implementation Research (CFIR): The CFIR Outcomes Addendum. Implement. Sci. 2022, 17, 7. [Google Scholar] [CrossRef] [PubMed]
  27. Damschroder, L.J.; Reardon, C.M.; Widerquist, M.A.O.; Lowery, J. The Updated Consolidated Framework for Implementation Research Based on User Feedback. Implement. Sci. 2022, 17, 75. [Google Scholar] [CrossRef] [PubMed]
  28. Saunders, C. Care of patients suffering from terminal illness at St. Joseph’s Hospice, Hackney, London. Nurs. Mirror 1964, 14, Xii-x. [Google Scholar]
  29. Hong, Q.; Pluye, P.; Fabregues, S.; Bartlett, G.; Boardman, F.; Cargo, M.; Dagenais, P.; Gagnon, M.-P.; Griffiths, F.; Nicolau, B.; et al. Mixed Methods Appraisal Tool; McGill University: Montreal, QC, Canada, 2018. [Google Scholar]
  30. Stata Statistical Software; Release 17; StataCorp LLC: College Station, TX, USA, 2021.
  31. Damschroder, L.J.; Aron, D.C.; Keith, R.E.; Kirsh, S.R.; Alexander, J.A.; Lowery, J.C. Fostering Implementation of Health Services Research Findings into Practice: A Consolidated Framework for Advancing Implementation Science. Implement. Sci. 2009, 4, 50. [Google Scholar] [CrossRef] [PubMed]
  32. Dedoose. Available online: https://www.dedoose.com/?gad_source=1&gclid=CjwKCAiAm-67BhBlEiwAEVftNqFH47mAqW8sT8QxIw-3DjbgoymUQpW2tedyXZuy09LVGGjecoyTVxoCyEgQAvD_BwE (accessed on 6 January 2025).
  33. Butler, A.E.; Copnell, B.; Hall, H. When a Child Dies in the PICU: Practice Recommendations From a Qualitative Study of Bereaved Parents. Pediatr. Crit. Care Med. 2019, 20, e447–e451. [Google Scholar] [CrossRef]
  34. Morillo Palomo, A.; Clotet Caba, J.; Camprubi Camprubi, M.; Blanco Diez, E.; Silla Gil, J.; Riverola de Veciana, A. Implementing Palliative Care, Based on Family-Centered Care, in a Highly Complex Neonatal Unit. J. Pediatr. Rio J. 2023, 100, 143–148. [Google Scholar] [CrossRef]
  35. Murakami, M.; Yokoo, K.; Ozawa, M.; Fujimoto, S.; Funaba, Y.; Hattori, M. Development of a Neonatal End-of-Life Care Education Program for NICU Nurses in Japan. J. Obstet. Gynecol. Neonatal Nurs. JOGNN NAACOG 2015, 44, 481–491. [Google Scholar] [CrossRef]
  36. Nellis, M.E.; Howell, J.D.; Ching, K.; Bylund, C. The Use of Simulation to Improve Resident Communication and Personal Experience at End-of-Life Care. J. Pediatr. Intensive Care 2017, 6, 91–97. [Google Scholar] [CrossRef] [PubMed]
  37. Parry, S.M.; Staenberg, B.; Weaver, M.S. Mindful Movement: Tai Chi, Gentle Yoga, and Qi Gong for Hospitalized Pediatric Palliative Care Patients and Family Members. J. Palliat. Med. 2018, 21, 1212–1213. [Google Scholar] [CrossRef]
  38. Rogers, S.; Babgi, A.; Gomez, C. Educational Interventions in End-of-Life Care: Part I: An Educational Intervention Responding to the Moral Distress of NICU Nurses Provided by an Ethics Consultation Team. Adv. Neonatal Care 2008, 8, 56–65. [Google Scholar] [CrossRef]
  39. Scheurer, J.M.; Norbie, E.; Bye, J.K.; Villacis-Calderon, D.; Heith, C.; Woll, A.; Shu, D.; McManimon, K.; Kamrath, H.; Goloff, N. Pediatric End-of-Life Care Skills Workshop: A Novel, Deliberate Practice Approach. Acad. Pediatr. 2023, 23, 860–865. [Google Scholar] [CrossRef] [PubMed]
  40. Twamley, K.; Kelly, P.; Moss, R.; Mancini, A.; Craig, F.; Koh, M.; Polonsky, R.; Bluebond-Langner, M. Palliative Care Education in Neonatal Units: Impact on Knowledge and Attitudes. BMJ Support. Palliat. Care 2013, 3, 213–220. [Google Scholar] [CrossRef] [PubMed]
  41. Zhang, R.; Tang, Q.; Zhu, L.H.; Peng, X.M.; Zhang, N.; Xiong, Y.E.; Chen, M.H.; Chen, K.L.; Luo, D.; Li, X.; et al. Testing a Family Supportive End of Life Care Intervention in a Chinese Neonatal Intensive Care Unit: A Quasi-Experimental Study with a Non-Randomized Controlled Trial Design. Front. Pediatr. 2022, 10, 870382. [Google Scholar] [CrossRef]
  42. Abuhammad, S.; Almasri, R. Impact of Educational Programs on Nurses’ Knowledge and Attitude toward Pediatric Palliative Care. Palliat. Support. Care 2022, 20, 397–406. [Google Scholar] [CrossRef]
  43. Allen, J.D.; Shukla, R.; Baker, R.; Slaven, J.E.; Moody, K. Improving Neonatal Intensive Care Unit Providers’ Perceptions of Palliative Care through a Weekly Case-Based Discussion. Palliat. Med. Rep. 2021, 2, 93–100. [Google Scholar] [CrossRef]
  44. Asuncion, A.M.; Cagande, C.; Schlagle, S.; McCarty, B.; Hunter, K.; Milcarek, B.; Staman, G.; Da Silva, S.; Fisher, D.; Graessle, W. A Curriculum to Improve Residents’ End-of-Life Communication and Pain Management Skills During Pediatrics Intensive Care Rotation: Pilot Study. J. Grad. Med. Educ. 2013, 5, 510–513. [Google Scholar] [CrossRef]
  45. Burns, J.; Jackson, K.; Sheehy, K.A.; Finkel, J.C.; Quezado, Z.M. The Use of Dexmedetomidine in Pediatric Palliative Care: A Preliminary Study. J. Palliat. Med. 2017, 20, 779–783. [Google Scholar] [CrossRef]
  46. Harris, L.L.; Placencia, F.X.; Arnold, J.L.; Minard, C.G.; Harris, T.B.; Haidet, P.M. A Structured End-of-Life Curriculum for Neonatal-Perinatal Postdoctoral Fellows. Am. J. Hosp. Palliat. Care 2015, 32, 253–261. [Google Scholar] [CrossRef] [PubMed]
  47. Haut, C.M.; Michael, M.; Moloney-Harmon, P. Implementing a Program to Improve Pediatric and Pediatric ICU Nurses’ Knowledge of and Attitudes Toward Palliative Care. J. Hosp. Palliat. Nurs. 2012, 14, 71–79. [Google Scholar] [CrossRef]
  48. Hawes, K.; Goldstein, J.; Vessella, S.; Tucker, R.; Lechner, B.E. Providing Support for Neonatal Intensive Care Unit Health Care Professionals: A Bereavement Debriefing Program. Am. J. Perinatol. 2022, 39, 401–408. [Google Scholar] [CrossRef]
  49. Kwon, J.E.; Kim, Y.H. Changes in the End-of-Life Process in Patients with Life-Limiting Diseases through the Intervention of the Pediatric Palliative Care Team. J. Clin. Med. 2023, 12, 6588. [Google Scholar] [CrossRef]
  50. Sabaq, A.G.; Khalaf, S.M. Effect of Educational Program on Nurses’ Performance Regarding Neonatal Palliative Care. Tanta Sci. Nurs. J. 2016, 10, 43–71. [Google Scholar]
  51. Samsel, C.; Lechner, B.E. End-of-Life Care in a Regional Level IV Neonatal Intensive Care Unit after Implementation of a Palliative Care Initiative. J. Perinatol. 2015, 35, 223–228. [Google Scholar] [CrossRef]
  52. Tripathi, S.; Laksana, E.; McCrory, M.C.; Hsu, S.; Zhou, A.X.; Burkiewicz, K.; Ledbetter, D.R.; Aczon, M.D.; Shah, S.; Siegel, L.; et al. Analgesia and Sedation at Terminal Extubation: A Secondary Analysis from Death One Hour after Terminal Extubation Study Data. Pediatr. Crit. Care Med. 2023, 24, 463–472. [Google Scholar] [CrossRef]
  53. Vesely, C.; Newman, V.; Winters, Y.; Flori, H. Bringing Home to the Hospital: Development of the Reflection Room and Provider Perspectives. J. Palliat. Med. 2017, 20, 120–126. [Google Scholar] [CrossRef]
  54. Younge, N.; Smith, P.B.; Goldberg, R.N.; Brandon, D.H.; Simmons, C.; Cotten, C.M.; Bidegain, M. Impact of a Palliative Care Program on End-of-Life Care in a Neonatal Intensive Care Unit. J. Perinatol. 2015, 35, 218–222. [Google Scholar] [CrossRef]
  55. Bateman, S.T.; Dixon, R.; Trozzi, M. The Wrap-up: A Unique Forum to Support Pediatric Residents When Faced with the Death of a Child. J. Palliat. Med. 2012, 15, 1329–1334. [Google Scholar] [CrossRef] [PubMed]
  56. Carter, B.S.; Guthrie, S.O. Utility of Morbidity and Mortality Conference in End-of-Life Education in the Neonatal Intensive Care Unit. J. Palliat. Med. 2007, 10, 375–380. [Google Scholar] [CrossRef]
  57. Clarke, P.; Booth, D. Copying Medical Summaries on Deceased Infants to Bereaved Parents. Acta Paediatr. Int. J. Paediatr. 2011, 100, 1262–1266. [Google Scholar] [CrossRef]
  58. Cremer, R.; Binoche, A.; Noizet, O.; Fourier, C.; Leteurtre, S.; Moutel, G.; Leclerc, F. Are the GFRUP’s Recommendations for Withholding or Withdrawing Treatments in Critically Ill Children Applicable? Results of a Two-Year Survey. J. Med. Ethics 2007, 33, 128–133. [Google Scholar] [CrossRef]
  59. Czynski, A.J.; Souza, M.; Lechner, B.E. The Mother Baby Comfort Care Pathway: The Development of a Rooming-In-Based Perinatal Palliative Care Program. Adv. Neonatal Care 2022, 22, 119–124. [Google Scholar] [CrossRef] [PubMed]
  60. Drolet, C.; Roy, H.; Laflamme, J.; Marcotte, M.-E. Feasibility of a Comfort Care Protocol Using Oral Transmucosal Medication Delivery in a Palliative Neonatal Population. J. Palliat. Med. 2016, 19, 442–450. [Google Scholar] [CrossRef]
  61. Johnson, E.M.; Hamilton, M.F.; Watson, R.S.; Claxton, R.; Barnett, M.; Thompson, A.E.; Arnold, R. An Intensive, Simulation-Based Communication Course for Pediatric Critical Care Medicine Fellows. Pediatr. Crit. Care Med. 2017, 18, e348–e355. [Google Scholar] [CrossRef] [PubMed]
  62. Delgado-Corcoran, C.; Wawrzynski, S.E.; Mansfield, K.; Fuchs, E.; Yeates, C.; Flaherty, B.F.; Harousseau, M.; Cook, L.; Epps, J.V. Grieving Children’ Death in an Intensive Care Unit: Implementation of a Standardized Process. J. Palliat. Med. 2023, 27, 236–240. [Google Scholar] [CrossRef]
  63. Martel, S.L.; Ives-Baine, L. “Most Prized Possessions”: Photography as Living Relationships Within the End-of-Life Care of Newborns. Illn. Crisis Loss 2014, 22, 311–332. [Google Scholar] [CrossRef]
  64. Meert, K.L.; Eggly, S.; Kavanaugh, K.; Berg, R.A.; Wessel, D.L.; Newth, C.J.L.; Shanley, T.P.; Harrison, R.; Dalton, H.; Michael Dean, J.; et al. Meaning Making during Parent-Physician Bereavement Meetings after a Child’s Death. Health Psychol. 2015, 34, 453–461. [Google Scholar] [CrossRef]
  65. Harmon, R.J.; Glicken, A.D.; Siegel, R.R. Neonatal Loss in the Intensive Care Nursery. Effects of Maternal Grieving and a Program for Intervention. J. Am. Acad. Child Psychiatry 1984, 23, 68–71. [Google Scholar] [CrossRef]
  66. Kymre, I.G.; Bondas, T. Skin-to-Skin Care for Dying Preterm Newborns and Their Parents—A Phenomenological Study from the Perspective of NICU Nurses. Scand. J. Caring Sci. 2013, 27, 669–676. [Google Scholar] [CrossRef]
  67. Kang, H.J.; Bang, K.S. Development and Evaluation of a Self-Reflection Program for Intensive Care Unit Nurses Who Have Experienced the Death of Pediatric Patients. J. Korean Acad. Nurs. 2017, 47, 392–405. [Google Scholar] [CrossRef]
  68. Knighting, K.; Kirton, J.; Silverio, S.A.; Shaw, B.N.J. A Network Approach to Neonatal Palliative Care Education Impact on Knowledge, Efficacy, and Clinical Practice. J. Perinat. Neonatal Nurs. 2019, 33, 350–360. [Google Scholar] [CrossRef]
  69. Woolgar, F.; Archibald, S.-J. An Exploration of Neonatal Intensive Care Unit (NICU) Staff Experiences of Attending Pre-Brief and Debrief Groups Surrounding a Patient’s Death or Redirection of Care. J. Neonatal Nurs. 2021, 27, 352–357. [Google Scholar] [CrossRef]
  70. Nesbit, M.J.; Hill, M.; Peterson, N. A Comprehensive Pediatric Bereavement Program: The Patterns of Your Life. Crit. Care Nurs. Q. 1997, 20, 48–62. [Google Scholar] [CrossRef]
  71. Rushton, C.H.; Reder, E.; Hall, B.; Comello, K.; Sellers, D.E.; Hutton, N. Interdisciplinary Interventions to Improve Pediatric Palliative Care and Reduce Health Care Professional Suffering. J. Palliat. Med. 2006, 9, 922–933. [Google Scholar] [CrossRef] [PubMed]
  72. Williams, B.K.; Pendergrass, T.L.; Grooms, T.R.; Florez, A.R. End of Life Simulation in a Pediatric Cardiac Intensive Care Unit. Clin. Simul. Nurs. 2021, 60, 3–10. [Google Scholar] [CrossRef]
  73. Wolff, T.; Dorsett, C.; Connolly, A.; Kelly, N.; Turnbull, J.; Deorukhkar, A.; Clements, H.; Griffin, H.; Chhaochharia, A.; Haynes, S.; et al. Chameleon Project: A Children’s End-of-Life Care Quality Improvement Project. BMJ Open Qual. 2021, 10, 9. [Google Scholar] [CrossRef] [PubMed]
  74. Amber, Q.; Lynn Zinkan, J.; Tofil, N.M.; White, M.L. Multidisciplinary Simulation in Pediatric Critical Care: The Death of a Child. Crit. Care Nurse 2012, 32, 55–61. [Google Scholar] [CrossRef]
  75. Andrews, E.; Hayes, A.; Cerulli, L.; Miller, E.G.; Slamon, N. Legacy Building in Pediatric End-of-Life Care through Innovative Use of a Digital Stethoscope. Palliat. Med. Rep. 2020, 1, 149–155. [Google Scholar] [CrossRef] [PubMed]
  76. Casas, J.; Jeppesen, A.; Peters, L.; Schuelke, T.; Magdoza, N.R.K.; Hesselgrave, J.; Loftis, L. Using Quality Improvement Science to Create a Navigator in the Electronic Health Record for the Consolidation of Patient Information Surrounding Pediatric End-of-Life Care. J. Pain Symptom Manag. 2021, 62, E218–E224. [Google Scholar] [CrossRef]
  77. Ishak Tayoob, M.; Rayala, S.; Doherty, M.; Singh, H.B.; Alimelu, M.; Lingaldinna, S.; Palat, G. Palliative Care for Newborns in India: Patterns of Care in a Neonatal Palliative Care Program at a Tertiary Government Children’s Hospital. Health Serv. Insights 2024, 17, 11786329231222858. [Google Scholar] [CrossRef]
  78. Short, S.R.; Thienprayoon, R. Pediatric Palliative Care in the Intensive Care Unit and Questions of Quality: A Review of the Determinants and Mechanisms of High-Quality Palliative Care in the Pediatric Intensive Care Unit (PICU). Transl. Pediatr. 2018, 7, 326–343. [Google Scholar] [CrossRef] [PubMed]
  79. Boss, R.; Nelson, J.; Weissman, D.; Campbell, M.; Curtis, R.; Frontera, J.; Gabriel, M.; Lustbader, D.; Mosenthal, A.; Mulkerin, C.; et al. Integrating Palliative Care into the PICU: A Report from the Improving Palliative Care in the ICU Advisory Board. Pediatr. Crit. Care Med. 2014, 15, 762–767. [Google Scholar] [CrossRef]
  80. Shorey, S.; Chua, C. Nurses and Nursing Students’ Experiences on Pediatric End-of-Life Care and Death: A Qualitative Systematic Review. Nurse Educ. Today 2022, 112, 105332. [Google Scholar] [CrossRef] [PubMed]
  81. Lyons, K.A.; Middleton, A.A.; Farley, A.A.; Henderson, N.E.; Peterson, E.B. End-of-Life Care Education in Pediatric Critical Care Medicine Fellowship Programs: Exploring Fellow and Program Director Perspectives. J. Palliat. Med. 2023, 26, 1217–1224. [Google Scholar] [CrossRef]
  82. Hirani, R.; Khuram, H.; Elahi, A.; Maddox, P.A.; Pandit, M.; Issani, A.; Etienne, M. The Need for Improved End-of-Life Care Medical Education: Causes, Consequences, and Strategies for Enhancement and Integration. Am. J. Hosp. Palliat. Med. 2024, 41, 5–7. [Google Scholar] [CrossRef]
  83. Li, J.; Smothers, A.; Fang, W.; Borland, M. Undergraduate Nursing Students’ Perception of End-of-Life Care Education Placement in the Nursing Curriculum. J. Hosp. Palliat. Nurs. 2019, 21, E12–E18. [Google Scholar] [CrossRef]
  84. Cole, M.A.; Foito, K. Pediatric End-of-Life Simulation: Preparing the Future Nurse to Care for the Needs of the Child and Family. J. Pediatr. Nurs. 2019, 44, e9–e12. [Google Scholar] [CrossRef]
  85. Hillier, M.M.; DeGrazia, M.; Mott, S.; Taylor, M.; Manning, M.J.; O’Brien, M.; Schenkel, S.R.; Cole, A.; Hickey, P.A. Utilizing High-Fidelity Simulation to Improve Newly Licensed Pediatric Intensive Care Unit Nurses’ Experiences with End-of-Life Care. J. Spec. Pediatr. Nurs. 2022, 27, e12360. [Google Scholar] [CrossRef]
  86. Woods-Hill, C.Z.; Wolfe, H.; Malone, S.; Steffen, K.M.; Agulnik, A.; Flaherty, B.F.; Barbaro, R.P.; Dewan, M.; Kudchadkar, S. Implementation Science Research in Pediatric Critical Care Medicine. Pediatr. Crit. Care Med. 2023, 24, 943–951. [Google Scholar] [CrossRef]
  87. Ista, E.; van Dijk, M. Moving Away From Randomized Controlled Trials to Hybrid Implementation Studies for Complex Interventions in the PICU. Pediatr. Crit. Care Med. 2024, 25, 177–180. [Google Scholar] [CrossRef]
  88. Steffen, K.M.; Holdsworth, L.M.; Ford, M.A.; Lee, G.M.; Asch, S.M.; Proctor, E.K. Implementation of Clinical Practice Changes in the PICU: A Qualitative Study Using and Refining the iPARIHS Framework. Implement. Sci. 2021, 16, 15. [Google Scholar] [CrossRef] [PubMed]
  89. Butler, A.E.; Hall, H.; Copnell, B. Becoming a Team: The Nature of the Parent-Healthcare Provider Relationship When a Child Is Dying in the Pediatric Intensive Care Unit. J. Pediatr. Nurs. Nurs. Care Child. Fam. 2018, 40, e26–e32. [Google Scholar] [CrossRef] [PubMed]
  90. Barratt, M.; Bail, K.; Lewis, P.; Paterson, C. Nurse Experiences of Partnership Nursing When Caring for Children with Long-Term Conditions and Their Families: A Qualitative Systematic Review. J. Clin. Nurs. 2024, 33, 932–950. [Google Scholar] [CrossRef] [PubMed]
Children 12 01485 g001
Figure 1. Extracted intervention elements. Alt text: A text box containing definitions of intervention elements.
Figure 1. Extracted intervention elements. Alt text: A text box containing definitions of intervention elements.
Children 12 01485 g001
Children 12 01485 g002
Figure 2. Preferred Reporting Items for Systematic Reviews and Meta-Analyses Flowchart. Alt text: A flowchart of review screening and study selection procedures. Arrows indicate studies that proceeded from one phase to the next.
Figure 2. Preferred Reporting Items for Systematic Reviews and Meta-Analyses Flowchart. Alt text: A flowchart of review screening and study selection procedures. Arrows indicate studies that proceeded from one phase to the next.
Children 12 01485 g002
Children 12 01485 g003
Figure 3. Heat Map of Intervention Goals and Outcomes vs. Parent Identified Gaps in End-of-Life Care. Green indicates more studies addressing a gap with a modality; red indicates fewer. Alt text: Heat map showing how often different intervention types addressed parent-identified gaps in pediatric end-of-life care. Green indicates more studies addressing a gap with a modality; red indicates fewer. * categories are not mutually exclusive, some articles described multimodal interventions that targeted multiple gaps.
Figure 3. Heat Map of Intervention Goals and Outcomes vs. Parent Identified Gaps in End-of-Life Care. Green indicates more studies addressing a gap with a modality; red indicates fewer. Alt text: Heat map showing how often different intervention types addressed parent-identified gaps in pediatric end-of-life care. Green indicates more studies addressing a gap with a modality; red indicates fewer. * categories are not mutually exclusive, some articles described multimodal interventions that targeted multiple gaps.
Children 12 01485 g003
Table 1. Aggregate Study Characteristics.
Table 1. Aggregate Study Characteristics.
CategoryVariablen (%)
Total 44
Study designMixed Methods3 (7%)
Other 18 (18%)
Qualitative4 (9%)
Quantitative descriptive12 (27%)
Quantitative non-randomized17 (39%)
Unit type 2General PICU10 (23%)
PCICU4 (9%)
NICU28 (64%)
Other unit type2 (5%)
Palliative care domains *Physical34 (77%)
Physical alone5 (11%)
Emotional/psychological38 (86%)
Emotional alone1 (2%)
Spiritual Domain25 (57%)
Spiritual alone0
Social Domain30 (68%)
Social Alone0
Multiple38 (86%)
Interventionist Role 3Interprofessional team + family2 (5%)
Research team4 (10%)
Supportive care consultants7 (17%)
Physician6 (14%)
Nurse3 (7%)
Interprofessional team10 (24%)
ICU clinical team5 (12%)
Palliative care team2 (5%)
External education team3 (7%)
Nurse(s) involved18 (41%)
Sample *Patients14 (32%)
Parent/family10 (23%)
Clinicians28 (64%)
1 Other designs included implementation, quality improvement, informal evaluation, and multimethod. 2 Other unit types include interventions where all pediatric units were eligible and over half of intervention participants were in intensive care settings. 3 Two interventionist roles were unreported or unclear. * indicates categories that are not mutually exclusive.
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MDPI and ACS Style

Broden Arciprete, E.G.; Ouyang, N.; Wawrzynski, S.E.; Eche-Ugwu, I.J.; Batten, J.; Costa, D.K.; Feder, S.L.; Snaman, J.M. Improving Intensive End-of-Life Care for Infants and Children: A Scoping Review of Intervention Elements. Children 2025, 12, 1485. https://doi.org/10.3390/children12111485

AMA Style

Broden Arciprete EG, Ouyang N, Wawrzynski SE, Eche-Ugwu IJ, Batten J, Costa DK, Feder SL, Snaman JM. Improving Intensive End-of-Life Care for Infants and Children: A Scoping Review of Intervention Elements. Children. 2025; 12(11):1485. https://doi.org/10.3390/children12111485

Chicago/Turabian Style

Broden Arciprete, Elizabeth G., Na Ouyang, Sarah E. Wawrzynski, Ijeoma J. Eche-Ugwu, Janene Batten, Deena K. Costa, Shelli L. Feder, and Jennifer M. Snaman. 2025. "Improving Intensive End-of-Life Care for Infants and Children: A Scoping Review of Intervention Elements" Children 12, no. 11: 1485. https://doi.org/10.3390/children12111485

APA Style

Broden Arciprete, E. G., Ouyang, N., Wawrzynski, S. E., Eche-Ugwu, I. J., Batten, J., Costa, D. K., Feder, S. L., & Snaman, J. M. (2025). Improving Intensive End-of-Life Care for Infants and Children: A Scoping Review of Intervention Elements. Children, 12(11), 1485. https://doi.org/10.3390/children12111485

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