Browse Items · Pediatric Palliative Care Library

Experiences of paediatric terminal oncology patients and their parents in palliative care: A qualitative systematic review

Harnessing Natural Language Processing to Assess Quality of End-of-Life Care for Children With Cancer

PURPOSE: Data on end-of-life care (EOLC) quality, assessed through evidence-based quality measures (QMs), are difficult to obtain. Natural language processing (NLP) enables efficient quality measurement and is not yet used for children with serious…

Electronic Patient Reported Outcomes Measures (e-PROMs) in Pediatric Palliative Oncology Care: A Scoping Review

Objective: Research findings regarding child-centered care and electronic patient reported outcome measures (e-PROMs) within pediatric palliative oncology care reveal an intricate field of study. This study aimed to map innovations in e-PROMs for the…

Experiences of Pediatric Palliative Care Among Bereaved Parents Who Lost a Child With Leukemia in South Korea

Palliative Care Outcomes for Critically ill Children After Rapid Whole Genome Sequencing

Abstract Objectives: Clinical utility of rapid whole genome sequencing (rWGS) has been reported in 30-70% of pediatric ICU patients who receive a molecular diagnosis. Rapid molecular diagnostic techniques have been increasingly integrated into…

Prevalence of pain in the last 2 weeks of life in hospitalized pediatric patients

Abstract Introduction: Pain is a very common symptom in children who have a complex, chronic, life-threatening or life-limiting disease, generating a negative impact on the quality of life of the child and his or her family. There is very limited…

Utilization of a prenatal palliative care consultation pathway for congenital heart disease

Background: A large Midwestern hospital has no consistent process for prenatal integration of palliative care for parents carrying a fetus diagnosed with complex congenital heart disease. The palliative care team is typically consulted postnatally…

DO CHILDREN AND YOUNG PEOPLE WITH LIFELIMITING CONDITIONS RECEIVE TIMELY PALLIATIVE CARE INPUT AND ADVANCE CARE PLANNING?

Objectives To assess the prevalence of advance care planning in children and young people with life limiting conditions who die on the paediatric intensive care unit. Methods We retrospectively audited data on children and young people who had died…

Nurses' Perspectives Regarding Challenges of Providing Perinatal/Neonatal End-of-Life Care in a Regional Hospital: An Exploratory Qualitative Study

AIM: This qualitative study aimed to explore nurses' perspectives regarding the challenges of providing perinatal/neonatal end-of-life care in a regional hospital. METHOD(S): This exploratory qualitative study was conducted with 20 nurses working in…

PERINATAL PALLIATIVE CARE REQUIREMENTS IN THE WEST MIDLANDS: A SERVICE EVALUATION PROJECT

Objectives We aimed to understand the population of pregnant people and babies who could benefit from an expanded perinatal palliative care service in the West Midlands, due to lifelimiting conditions in foetuses or babies. Methods We reviewed…

THE WEST MIDLANDS PERINATAL PALLIATIVE CARE SERVICE AUDIT ON REFERRALS, DIAGNOSES AND PROGNOSES OF BABIES WITH SEVERE CONDITIONS

Objectives The West Midlands Perinatal Palliative Care Service based at Birmingham Women's and Children's NHS Hospital Trust is one of the busiest services in the UK after being in operation only 2 years. The service offers support to all West…

Finding a New Normal: Maternal Experiences Transitioning to Home From the Neonatal Intensive Care Unit Caring for Technology-Dependent Infants

Background: Infants discharged from the neonatal intensive care unit (NICU) dependent on medical technology (eg, respiratory or nutritional support) are a growing vulnerable population. These infants are medically fragile, prone to…

Tags: 2022, 2024 SE2 - Parent Perspectives, Critical Care Nurse, Hagstrom A, Infant, Infant, Newborn, Intensive Care Units, Intensive Care Units, Neonatal, Mothers, Neonatal, Newborn, Norton M, Patient Discharge, Technology

Place of death among children from 0 to 17 years of age: A population-based study from Sweden

Aim: The aim of this study is to contribute to the development of paediatric palliative care by investigating, on a population basis, where children in Sweden died, from 2013 to 2019. A particular focus was on comparing two groups: children who died…

End-of-Life Care for Newborn Infants: A Multicenter Real-Life Prospective Study

Introduction: Most neonatal deaths in industrialized countries follow a process of redirection of care. The objectives of this study were to describe how neonates die in a middle-income country, whether there was redirection of care, and the reason…

Structured Framework for Multidisciplinary Parent Counseling and Medical Interventions for Fetuses and Infants with Trisomy 13 or Trisomy 18

Objective: Trisomy 13 (T13) and 18 (T18) are aneuploidies associated with multiple structural congenital anomalies and high rates of fetal demise and neonatal mortality. Historically, patients with either one of these diagnoses have been treated…

Tags: 2024, American Journal of Perinatology, Artificial Ventilation, August List 2024, Continuous Positive Airway Pressure, Decision Making, diaphragm hernia, Dukhovny S, Early Intervention, Echocardiography, endotracheal intubation, enteric feeding, feeding disorder, Fetus, fetus distress, Gievers L, Health Care Personnel, Human, Infant, Intensive Care Unit, Kim AJH, Madriago EJ, Marshall M, mood disorder, Morbidity, Mortality, mortality risk, multiple organ failure, nasogastric tube, neural tube defect, Newborn, noninvasive positive pressure ventilation, Palliative Therapy, parent counseling, Practice Guideline, Qualitative Analysis, Resuscitation, Review, Ronai C, Seizure, Sepsis, Sleep Apnea Syndromes, Tate T, Taub S, Tracheostomy, trisomy 13/di [Diagnosis], trisomy 13/ep [Epidemiology], trisomy 18/di [Diagnosis], trisomy 18/ep [Epidemiology], ultrasound

Palliative Care in the Pediatric Intensive Care Unit

Communication is a central aspect of nursing care and is especially important when pertaining to progressive illnesses and end of life. This article reviews basic palliative care terminology and outlines a variety of communication frameworks from the…

Tags: 2024, Aacn Advanced Critical Care, Adolescent, Adult, August List 2024, Child, Crain N, Decision Making, Ethics, Female, Human, Infant, Male, Miller J, Newborn, Palliative Therapy, Pediatric Intensive Care Unit, Preschool Child

Advance Care Planning and Parent-Reported End-of-Life Outcomes in the Neonatal Intensive Care Unit

Objective: This study aimed to evaluate the impact of advance care planning (ACP) on parent-reported end-of-life (EOL) outcomes in the neonatal intensive care unit (NICU). Study design: Single-center, cross-sectional mixed-methods survey study of…

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

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)…

Meaningful Display of Legacy Items Among Families Experiencing a Perinatal, Neonatal, or Infant Death

Outcomes: 1. Discuss how families use perinatal palliative legacy items after they return to the community. 2. Understand how perinatal palliative legacy items can affect deceased infant identity in the family. Key Message: Current literature does…

National characteristics of emergency care for children with neurologic complex chronic conditions

Abstract Introduction: Most pediatric emergency care occurs in general emergency departments (GED), where less pediatric experience and lower pediatric emergency readiness may compromise care. Medically vulnerable pediatric patients, such as those…

Palliative Care for Infants in the Neonatal Intensive Care Unit: A Scoping Review

This scoping review aimed to explore the characteristics of neonatal palliative care in the neonatal intensive care unit, including the features, contents, and experiences of infants, parents, and nurses during palliative care. Five databases…

Tags: 2024, Ahn SY, Child Parent Relation, Hospice Care, Human, Infant, Infant Newborn, Intensive Care Units, Journal of Hospice and Palliative Nursing, Kim ES, Kim S, Lee H, March List 2024, Neonatal Intensive Care Unit, Newborn, Nursing Care, Palliative Care, Palliative Therapy, Psychology

Family-Centered Culture Care: Touched by an Angel

An Asian Indian Hindu family chose no intervention and hospice care for their newborn with hypoplastic right heart syndrome as an ethical option, and the newborn expired after five days. Professional nursing integrates values-based practice and…

Chinese Neonatal Nurses' Lived Experiences of Providing End-of-Life Care in the NICU: A Descriptive Phenomenological Study

Background: Although end-of-life care (EOLC) has been well-studied, the experience of neonatal intensive care unit (NICU) nurses in China, where little EOLC training is provided, requires further investigation. Purpose: To explore the lived…

Tags: 2023, Advances in Neonatal Care, East Asian, Emotion, February List 2024, Guo-Qin Y, Human, Infant, Li-Ping W, Lin W, Neonatal Intensive Care Unit, Neonatal Nurse, Newborn, Psychology, Qi L, Terminal Care, Tong-Hui S, Xiao-Li R

A Qualitative Study of Parents' Experiences of Bonding in End-of-Life Care in a Neonatal Intensive Care Unit

To examine the parent's experiences of bonding in the care of newborns who were seriously ill during the neonatal period and did not survive. Design: Data were collected through 7 interviews with 10 parents whose infants were cared for and died in a…

Neonatal serious illness: operational definition

OBJECTIVES: (1) To operationalise our previously published definition of neonatal serious illness by applying it to a patient cohort and (2) to evaluate timing of palliative care consultation, goals of care discussions and meeting serious illness…

Neonatal organ donation: Retrospective audit into potential donation in a single neonatal unit

Background: Research has shown that many babies who die in neonatal units could have been potential tissue and/or organ donors. Despite the existence of guidelines supporting its implementation, the incidence of neonatal donation remains rare in the…

Ethics at the end of life in the newborn intensive care unit: Conversations and decisions

The unexpected birth of a critically ill baby raises many ethical questions for neonatologists. Some of these are obviously ethical questions, about whether to attempt resuscitation, and, if the baby is resuscitated and survives, whether to continue…

Paediatric palliative care in the NICU: A new era of integration

We are entering a new era of integration between neonatal medicine and paediatric palliative care, with increasing recognition that the role and skills of palliative care extend beyond care of only the terminally ill infant. This paper addresses the…

Data-driven approach to understanding neonatal palliative care needs in England and Wales: a population-based study 2015-2020

Abstract Objective To quantify admissions to neonatal units in England and Wales with potential need for palliative care. Design, setting and patients Diagnoses and clinical attributes indicating a high likelihood of requiring palliative care were…

Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease

Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC…

Neonatal Palliative Care: Assessing the Nurses Educational Needs for Terminally Ill Patients

BACKGROUND: For terminally sick neonates and their families, it's crucial to provide holistic nursing care that incorporates both curative and palliative care as much as feasible. It is well known that the biggest obstacle to delivering palliative…

Ethics Roundtable: How Much is Too Much?

How should the medical team approach care for a very preterm infant with a significant painful and life-limiting condition when the parents wish to pursue all life-sustaining therapies? Here, we discuss a case of an infant born at 28 weeks' gestation…

Tags: 2023, American Journal of Hospice and Palliative Medicine, Carmi syndrome, Carter B, DiBartolomeo M, end-of-life, epidermolysis bullosa, Ethics, February List 2023, Gastric Outlet Obstruction, Hays J, Humans, Infant, Life-limiting Condition, Newborn, Palliative Care, Premature Ectodermal Dysplasia Pylorus/abnormalities, Theodoro MF

Factors that Contribute to Bereaved Parents' Perceptions of Neonatal Palliative Care: A Systematic Literature Review

OBJECTIVES: Neonatal palliative care (NPC) is an emerging subset of care in United States (US) neonatal intensive care units (NICUs) that provides relief for both infants and families at the end of life for infants with terminal diagnoses. Families…

Tags: 2022, Analysis, and, Article, Beltran SJ, CARE, Experience, Family, Female, for, guideline, Hamel M N, Human, Infant, intensive, Items, Male, meta, Meta-analyses, Neonatal, Newborn, October 2022 List, Palliative, Parent, Perception, Practice, Preferred, Psychological, Quality, Reporting, Review, Reviews, Satisfaction, systematic, The American Journal of Hospice & Palliative Care, Therapy, Unit, Units

Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care

BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing…

Experience of Perinatal Death From the Father's Perspective

BACKGROUND: Although perinatal deaths are still a common pregnancy outcome in developing countries, little is known about the effect perinatal death has on fathers. OBJECTIVE: The aim of the study was to understand and describe the meaning of…

Tags: 2019, 2022 Special Edition 1 - Parent Perspectives, Adolescent, Colombia, Emotions, Fathers, Grief, Infant, Lizcano PLDM, Male, Middle Aged, Moreno Fergusson ME, Newborn, Nursing Research, Palacios AM, Perinatal Death, Qualitative Research, Young Adult

Perinatal palliative care

Perinatal Palliative Care is a model of care designed to prevent and treat the physical, spiritual, emotional, and social needs of fetuses and newborn infants with life-threatening or life-limiting conditions. The care extends to the infant's family.…

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