The Unspeakable Nature of Death & Dying During Childhood: A Silenced Phenomenon in Pediatric Care

In pediatric settings, the concept of hope is frequently positioned as a fundamental aspect of care and at odds with the possibility and proximity of death. This arguably fosters silence about death and dying in childhood despite evidence indicating the benefits of open communication at the end of life. In this paper, we describe the unspeakable nature of death and dying in childhood, including its conceptual and clinical causes and dimensions, its persistence, and the associated challenges for children and youth facing critical illnesses, their families, and society. We explore how the tension between hope and death can be reframed and apply our analysis to the context of medical assistance in dying for mature minors in Canada. Considering the lack of related literature, this paper offers initial reflections to form a framework for the unspeakable nature of death and dying in childhood and to advance the crucial need for research.

Maternal advanced age, single parenthood, and ART increase the risk of child morbidity up to five years of age

Background Advanced maternal age, single status and use of assisted reproductive technology (ART) are increasing in mothers in high-income countries, and all are known risk factors for negative obstetric outcomes. Less is known about their long-term consequences for childhood morbidity. Thus, the aim of this study was to investigate morbidity up to five years of age, in the children of older, single, and/or ART-treated mothers. Methods A cross-sectional using Swedish registers was performed comprising 23 772 children. The prevalence of diagnosis and the number of hospital visits for specialist care, were compared and analyzed in relation to maternal age at childbirth, maternal civil status, and mode of conception. The odds ratio for specialized care within each ICD-chapter were estimated using single and multiple logistic regression. Results Children born to single mothers and children conceived using ART had significantly more outpatient visits for specialist care and significantly more diagnoses compared to children with married/cohabiting mothers, and spontaneously conceived children. Children born to mothers of advanced maternal age (≥40) had fewer in- and outpatient visits. However, they were significantly more often diagnosed within ICD-chapters XVI, XVII i.e., they experienced more morbidity in the neonatal period. Conclusion The results indicate that children born to single mothers and children of ART-treated mothers have a higher morbidity and consume more specialist care than children of married/cohabiting and spontaneously pregnant mothers. We conclude that the use of ART, maternal single status and advanced maternal age are risk factors of importance to consider in pediatric care and when counseling women who are considering ART treatment.

What Parents have to Say: Content and Actionability of Narrative Comments from Child HCAHPS Survey

OBJECTIVE: To examine the content and actionability of written comments from parents and guardians on the Child Hospital Consumer Assessment of Healthcare Providers and Systems (Child HCAHPS) survey. METHODS: We coded 548 narrative text comments linked to demographic information from the Child HCAHPS survey from July 2017 to December 2020 about inpatient pediatric care at an urban children’s hospital-within-a-hospital at an academic medical center. We developed initial codes based on research findings and the content of the Child HCAHPS survey, and also added codes that emerged from the comments. We performed directed and conventional content analysis. RESULTS: Most comments were positive and provided by the child’s mother. About half referred to content on the Child HCAHPS survey, primarily on being treated with courtesy and respect or explaining care at discharge. Comments about other topics most frequently provided a narrative rating of the provider or described whether providers were caring and friendly. Thirty-nine percent of comments were deemed sufficiently specific to make improvements (ie, actionable) in inpatient pediatric care; negative comments or comments about care for sicker patients were more often actionable. CONCLUSIONS: Child HCAHPS comments provided rich detail and a large portion were deemed actionable. Comments also provided insights into topics both on the survey itself and on many other inpatient pediatric issues raised by parents and guardians. More research is needed on the value of Child HCAHPS comments, the association between Child HCAHPS open-ended and closed-ended responses, and how quality leaders and frontline staff use comments to improve inpatient pediatric care.

OCULO-AURICULO-VERTEBRAL SPECTRUM ASSOCIATED WITH ABERRANT SUBCLAVIAN ARTERY IN AN INFANT WITH RECURRENT RESPIRATORY DISTRESS

ABSTRACT Objective: To describe an infant with craniofacial microsomia and recurrent respiratory distress associated with aberrant right subclavian artery in order to review its most frequent congenital anomalies and alert the pediatrician to its rarer and more severe complications. Case description: This case report involves an 18-month-old male infant, only son of non-consanguineous parents. At birth, the child presented craniofacial dysmorphisms (facial asymmetry, maxillary and mandibular hypoplasia, macrostomia, grade 3 microtia, and accessory preauricular tag) restricted to the right side of the face. Additional tests showed asymmetric hypoplasia of facial structures and thoracic hemivertebrae. No cytogenetic or cytogenomic abnormalities were identified. The patient progressed to several episodes of respiratory distress, stridor, and nausea, even after undergoing gastrostomy and tracheostomy in the neonatal period. Investigation guided by respiratory symptoms identified compression of the esophagus and trachea by an aberrant right subclavian artery. After surgical correction of this anomaly, the infant has not presented respiratory symptoms and remains under multidisciplinary follow-up, seeking rehabilitation. Comments: Craniofacial microsomia presents a wide phenotypic variability compared to both craniofacial and extracraniofacial malformations. The latter, similarly to the aberrant right subclavian artery, is rarer and associated with morbidity and mortality. The main contribution of this case report was the identification of a rare anomaly, integrating a set of malformations of a relatively common condition, responsible for a very frequent complaint in pediatric care.

Pediatric End-of-Life Care in Rural America: A Systematic Review

Background: Families increasingly desire to bring their children home from the acute care setting at end of life. This transition includes home to rural or remote areas. Little is known about the end-of-life care for children who reside in rural areas. Objective: The purpose of this study was to comprehensively review and summarize the evidence regarding end-of-life care for children living in rural areas, identify key findings and gaps in the literature, and make recommendations for future research. Methods: A systematic review was conducted from 2011 to 2021 using MEDLINE and CINAHL databases. Results: Nine studies met inclusion criteria. Key themes from the literature included: barriers, facilitators, and needs. Three articles identified barriers to end-of-life care for children in rural communities, which included access to end-of-life care and clinicians trained to provide pediatric care. Three studies identified and evaluated the facilitators of end-of-life care for rural children. The articles identified technology and additional training as facilitators. Four studies reported on the needs of rural children for end-of-life care with serious illness. Conclusions: We found major barriers and unmet needs in the delivery of rural pediatric end-of-life care. A few facilitators in delivery of this type of care were explored. Overall research in this area was sparse. Future studies should focus on understanding the complexities associated with delivery of pediatric end-of-life care in rural areas.

Quality and Safety in Hospital Pediatrics During COVID-19: A National Qualitative Study

OBJECTIVE: To describe challenges in inpatient pediatric quality and safety during the coronavirus disease 2019 (COVID-19) pandemic. METHODS: In a previous qualitative study, our team sought to broadly describe changes in pediatric inpatient care during the pandemic. For both that study and this ancillary analysis, we purposefully sampled participants from community and children’s hospitals in the 6 US states with the highest COVID-19 hospitalization rates from March to May 2020. We recruited 2 to 3 participants from each hospital (administrators, front-line physicians, nurses, caregivers) for semistructured interviews. We used constant comparative methods to identify themes regarding quality and safety challenges during the pandemic. RESULTS: We interviewed 30 participants from 12 hospitals. Participants described several impacts to clinical workflows, including decreased direct clinician-patient interactions and challenges to communication, partly addressed through innovative use of telehealth technology. Participants reported changes in the discharge and transfer process (eg, discharges, difficulties accessing specialized facilities). Participants also described impacts to hospital operations, including changes in quality monitoring and operations (eg, decreased staff, data collection), increased health risks for clinicians and staff (eg, COVID-19 exposure, testing delays), and staff and supply shortages. Participants voiced concerns that negative quality and safety impacts could include increased risk of preventable safety events and hospital readmissions, and decreased patient engagement, education, and satisfaction. CONCLUSIONS: We identified several impacts to clinical workflows and hospital operations during the pandemic that may have affected inpatient pediatric care quality and safety. Our findings highlight potentially important areas of focus for planning pandemic recovery, preparing for future pandemics, and conducting future research on inpatient pediatric quality and safety.

Use of Patient-Reported Experience Measures in Pediatric Care: A Systematic Review

Introduction: Patient-reported Experience Measures (PREMs) are validated questionnaires, that gather patients' and families' views of their experience receiving care and are commonly used to measure the quality of care, with the goal to make care more patient and family-centered. PREMs are increasingly being adopted in pediatric population, however knowledge gaps exist around understanding the use of PREMs in pediatrics.Objective: To identify and synthesize evidence on the use of PREMs in pediatric healthcare settings and their characteristics.Evidence Review: Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines governed the conduct and reporting of this review. An exhaustive search strategy was applied to MEDLINE, EMBASE, PsycINFO, Cochrane Library, and CINAHL databases to identify relevant peer-reviewed articles from high-income countries. Additionally, gray literature was searched to capture real-world implementation of PREMs. All the articles were screened independently by two reviewers in two steps. Data was extracted independently, synthesized, and tabulated. Findings from gray literature was synthesized and reported separately. Risk of bias for the studies identified through scientific databases was assessed independently by two reviewers using the National Institutes of Health Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies.Results: The initial search identified 15,457 articles. After removing duplicates, the title and abstracts of 11,543 articles were screened. Seven hundred ten articles were eligible for full-text review. Finally, 83 articles met the criteria and were included in the analyses.Of the 83 includes studies conducted in 14 countries, 48 were conducted in USA, 25 in European countries and 10 in other countries. These 83 studies reported on the use of 39 different PREMs in pediatric healthcare settings. The gray literature retrieved 10 additional PREMs. The number of items in these PREMs ranged from 7 to 89. Twenty-three PREMs were designed to be completed by proxy, 10 by either pediatric patients or family caregivers, and 6 by pediatric patients themselves.Conclusion and Relevance: This comprehensive review is the first to systematically search evidence around the use of PREMs in pediatrics. The findings of this review can guide health administrators and researchers to use appropriate PREMs to implement patient and family-centered care in pediatrics.