Browse Items · Pediatric Palliative Care Library

Death One Hour After Terminal Extubation (DONATE): A Multisite Cohort Study

INTRODUCTION: Predicting time to death after terminal extubation is valuable to augment family counseling and identify suitable candidates for organ donation after circulatory death (DCD). Our objective was to train and validate a machine learning…

Scandinavian perspectives on life support at the border of viability

Advances in neonatal medicine have allowed us to rescue extremely preterm infants. However, both long-term vulnerability and the burden of treatment in the neonatal period increase with decreasing gestational age. This raises questions about the…

Spiritual Care in PICUs: A U.S. Survey of 245 Training Fellows 2020-2021*

OBJECTIVES: To understand the perspectives of pediatric fellows training in critical care subspecialties about providing spiritual care. DESIGN: Cross-sectional survey of United States National Residency Matching Program pediatric fellows training…

Pediatric palliative care for metabolic diseases: 20-year epidemiological survey of outpatients at a Brazilian quaternary hospital

The interface between pediatric palliative care (PPC) and inborn metabolic diseases (IMD) remains incipient, though these conditions fill the state of art of complex chronic diseases, eligible to this health approach. We analyzed the medical records…

Parent and Provider Perspectives of Clinical Outcomes of Critically Ill Children

INTRODUCTION: Mortality is prioritized in critical care studies, and is invariably a component of composite outcomes. Composites, such as ventilator-free days, combine mortality with other outcomes, such as duration of mechanical ventilation (MV).…

Paediatric Palliative Care and Anticipatory Prescribing: Just Wasteful Are We?

Aims A fundamental right for patients and their families presented with life-limiting condition, is maintaining choice, in terms of place of care and of death, with evidence to suggest that most patients and their families would prefer home.1…

Understanding PICU Mortality and Family Bereavement: A Singlr- Canter Qualitative Study

INTRODUCTION: Pediatric mortality is an often underestimated and overlooked figure but has significant impact on providers and families. University Hospitals Rainbow Babies and Children has launched a program to identify factors surrounding pediatric…

International consensus on sleep problems in pediatric palliative care: Paving the way

Objective Sleep problems constitute a common and heterogeneous complaint in pediatric palliative care (PPC), where they often contribute to disease morbidity and cause additional distress to children and adolescents and their families already facing…

Tags: 2024, Amarri S, Angelhoff C, Avagnina I, Baker J, Benini F, Bergstraesser E, Bernadá M, Bin-Hasan S, Blankenburg M, Bogetz J, Bruni O, Castronovo V, Catalano I, Ceranoglu TA, Chan K Ching C, Chong PH, complex healthcare needs, Consensus, Crabtree V, de Oliveira ISB, De Zen L, Downing J, Fagondes S, Farquhar M, Ferreira EAL, Ferreira R, Ferri R, Findling RL, Frühwald M, Goh DYT, Gradisar M, Gringras P, Hauch H, Hauer J, Huijer HAS, July List 2024, Keenan S, Kreicbergs U, Kudchadkar SR, Kuhn BR, Lacerda A, Lazzarin P, Li A, Li Shirley X, Lopes MC, Lopez JGDA, Marinetto A, Martino-Alba R, Matlen L, Mercadante S, Mercante A, Mindell J, Moreira GA, Narang I, Nilsson F, Nobili L, Noce S, Nosetti L, Nunes ML, Oliveira L, Owens J, Palliative Care, Papa S, Pediatric Palliative Care, Pizza F, Plazzi G, Ragsdale L, Rios M, Santini A, Santos CF, Sejersen T, Sheldon SH, Siden H, Simakajornboon N, Sleep, Sleep Medicine, sleep problems, Soster LA, Spruyt K, Stenmarker M, Strambi LF, Streuli J, Suh S, Traslaviña GAA, Verrillo E, Wang G, Wille J, Wolfe J, Wolfson AR, Zanin A, Zernikow B, Zhou ES

Lessons Learned Establishing the Palliative Care Research Cooperative's Qualitative Data Repository

Data sharing is increasingly an expectation in health research as part of a general move toward more open sciences. In the United States, in particular, the implementation of the 2023 National Institutes of Health Data Management and Sharing Policy…

A Review of pediatric Palliative Care Program in a Regional Hospital in ong Kong

Background Paediatric palliative care (PPC) focuses on the enhancement of quality of life for children with life-limiting diseases and support to their families. This study reviewed the paediatric palliative care program in Hong Kong (HK). Objectives…

Bereavement, Palliative, and End-of-Life Education Needs Assessment

INTRODUCTION: Nationally, over 45,000 children die each year with nearly 75% of those dying in hospitals and 80% of hospital deaths occurring in the Pediatric Intensive Care Unit (PICU). CHRISTUS Children's is among an estimated 20% of children's…

Racial and Ethnic Disparities in End-of-Life Care of Children Undergoing Terminal Extubation in ICU

INTRODUCTION: Among elderly adults, significant racial disparities in hospice and end-of-life treatment intensity have been shown. This single-center secondary analysis was performed on data collected as part of the DONATE (Death One Hour After…

Children with palliative care needs - the landscape of the nordic countries

Background: To strengthen palliative care for children in the Nordic countries, an updated status of current needs, resources, clinical services, education, and research is necessary to align and consolidate future research. A Nordic research…

Barriers and facilitators to accessing pediatric specialty care for rural-dwelling children with complex chronic conditions: An integrative review

Problem: Pediatric specialty services are often geographically concentrated in urban areas, leaving up to 1 in 5 rural-dwelling children in the United States without access to advanced care. The purpose of this review was to identify and review…

Tags: 2024, access, Child, complex chronic condition, Integrative Review, Journal of Pediatric Nursing, July List 2024, Newman S, Only Child, Pediatric, Phillips S, Rural, Specialty care, Vestal E

The Effect of Neonatal Intensive Care Nurses' Attitudes Towards Palliative Care on Death Anxiety and Burnout: An Analytic Cross-Sectional Study

This study aimed to determined the effect of neonatal intensive care nurses' attitudes towards palliative care on death anxiety and burnout. This was an analytic cross-sectional study conducted with 215 neonatal intensive care nurses working a…

Short Term Coping-Behaviors and Postpartum Health in a Population-Based Study of Women with a Live Birth, Stillbirth, or Neonatal Death

Objective: Responding to the National Institutes of Health Working Group's call for research on the psychological impact of stillbirth, we compared coping-related behaviors by outcome of an index birth (surviving live birth or perinatal loss -…

Living with the threat of losing a child: Parents' experiences of the transplantation process with a severely ill child who received stem cells from a sibling

Purpose When a child needs a hematopoietic stem cell transplant, the seriousness of the child's illness is highlighted. The purpose of this study was to explore parents' experiences of the transplantation process when two children in the family are…

Tags: 2024, Adolescent, Child, Donation, Experience, Journal of Pediatric Nursing, July List 2024, Only Child, Ora I, Parent, Pergert P, Rinaldo C, Stem Cell Transplantation, Stenmarker M

Enhancing Quality of Life in Pediatric Palliative Care: Insights, Challenges, and Future Directions—A Systematic Review

Pediatric palliative care (PPC) programs are essential in encompassing not only the affected children but also their family system and the healthcare and educational professionals involved. Despite the field’s significance, there is a notable…

Medication Management Through Collaborative Practice for Children With Medical Complexity: A Prospective Case Series

OBJECTIVE Care coordination for children and youth with special health care needs and medical complexity (CYSHCN-CMC), especially medication management, is difficult for providers, parents/caregivers, and patients. This report describes the creation…

Tags: 2024, Adolescent, Adult, Adverse Drug Reaction, adverse drug reactions, Article, Asthma, Blood Pressure, Bodenstab HM, bradycardia, cerebral blindness, Cerebral Palsy, Child, children with disability, Chronic Disease, Clinical Practice, collaborative practice, Congenital Malformation, Cost Control, Current Procedural Terminology, diazepam, diphenhydramine, drug information, Drug Therapy, drug-related side effects, Dysphagia, economics, Emergency Ward, Epilepsy, Female, health care facility, hospital readmission, Human, Hypotension, Infant, ipratropium bromide, Journal of Pediatric Pharmacology and Therapeutics, July List 2024, Length Of Stay, Long-Term Care, Major Clinical Study, Male, medication management, Medication therapy management, metoclopramide, Multiple Chronic Conditions, Nervous System, Neurology, Newborn, Paracetamol, Parrish RH, pediatric long term care facility, Pharmaceutical, pharmacist, Quinn J, salbutamol, Wo E

Procedural Interventions for Terminally Ill Children - Are We Aiding Palliation?

Objectives: Many children undergo surgery or an invasive procedure during their terminal hospital admission.1 The types of procedures, patients, and the intent of the procedures has not been well defined. Understanding these details may help…

Advance Care Planning for Children With Rare Diseases: A Pilot RCT

Background and objective: Pediatric rare diseases are often life-limiting conditions and/or require constant caregiving. Investigators assessed the initial efficacy of the FAmily CEntered (FACE) pediatric advance care planning (pACP), FACE-Rare,…

Knowledge, attitudes and practices of critical care unit personnel regarding pediatric palliative care: a cross-sectional study

Background: Few studies have evaluated the perceptions of healthcare providers in China regarding pediatric palliative care, particularly in critical care units (PICUs), where many children receive palliative care. To evaluate the knowledge,…

The impact of specialized pediatric palliative care on advance care planning and healthcare utilization in children and young adults: a retrospective analysis of medical records of in-hospital deaths

Background: Pediatric palliative care supports children and young adults with life-limiting conditions and their families, seeking to minimize suffering and enhance quality of life. This study evaluates the impact of specialized palliative care (SPC)…

Work-related quality of life in professionals involved in pediatric palliative care: a repeated cross-sectional comparative effectiveness study

Background: Working in pediatric palliative care (PPC) impacts healthcare and allied professionals' work-related quality of life (QoL). Professionals who lack specific PPC training but who regularly provide services to the affected children have…

Factors associated with family decision-making after pediatric out-of-hospital cardiac arrest

Aim: This study aims to identify demographic factors, area-based social determinants of health (SDOH), and clinical features associated with medical decision-making after pediatric out-of-hospital cardiac arrest (OHCA). Methods: This is a…

Can We Adopt Pediatric Palliative Care that is Indivisible with Equity for all?

In this volume of The Journal, two retrospective cohort studies, both based in Ohio, provide insightful data about the deployment of dedicated pediatric palliative care teams. While home-based visits have been a longtime core principle of pediatric…

Tags: 2024, conference abstract, Equity, Fisher PG, Journal of Pediatrics, July List 2024, Palliative Care

Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carers

Background: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric…

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