Browse Items · Pediatric Palliative Care Library

Beyond the healthcare system: The societal and contextual factors impacting parents' participation in decision-making for neonates with life-threatening conditions

Background Parents of neonates with life-threatening conditions and professionals, bear the burden of making complex decisions. Parents may not be fully involved in decision-making, and there is a paucity of evidence regarding the influence of social…

Evaluation of a perinatal palliative care program by SWOT analysis

Background: Perinatal Palliative Care (PPC) is individualized medical-nursing care aimed at improving the quality of life of newborns with life-limiting conditions and to support their families. This study draws on the analysis of the experience…

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…

INTRODUCTION OF A PERINATAL PALLIATIVE CLINICAL NURSE SPECIALIST ROLE ENHANCING PARTNERSHIP WORKING BETWEEN PALLIATIVE CARE AND PERINATAL SERVICES-ONE YEAR ON

Objectives Support such as referral to perinatal palliative care and access to hospice services may promote well-being of families of babies diagnosed with life-limiting conditions.1 2 A children's hospice-based perinatal palliative clinical nurse…

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…

A protocol for neoWONDER: Neonatal whole population data linkage to improve long-term health and wellbeing of preterm and sick babies

Introduction Early-life medical and surgical interventions in babies born preterm and/or with surgical conditions influence later life health and educational outcomes. Obtaining long-term outcomes post-discharge to evaluate the impact of…

Tags: 2024, Adult, Article, attention deficit hyperactivity disorder, Aveline A, Battersby C, behavior change, breast feeding, breast milk, Cause Of Death, Cohort Analysis, community mental health, congenital diaphragm hernia, Databases Factual, date of birth, Developmental delay, Educational Status, England, Epidemiology, esophagus atresia, factual database, Female, gastroschisis, Gestational Age, Health Care Utilization, Hirschsprung disease, hospital discharge, hospital readmission, Human, Humans, Infant Newborn, Infant Premature, information retrieval, Information Storage and Retrieval, Length Of Stay, Major Clinical Study, Male, Mortality Rate, Necrotizing Enterocolitis, Newborn, newborn assessment, Newborn Care, newborn surgery, Pediatric Intensive Care Unit, place of birth, PLoS One, premature labor, Prematurity, Propensity Score, routinely collected health data, school attendance, September List 2024, van Blankenstein E, Wales, Wellbeing

The knowledge, attitude and behavior on the palliative care among neonatal nurses: what can we do

Background: Neonatal nurses should provide timely and high-quality palliative care whenever necessary. It's necessary to investigate the knowledge, attitude and behavior of palliative care among neonatal nurses, to provide references and evidences…

Managing CHD in Tertiary NICU in Collaboration with a Cardiothoracic Center

Increasingly non-cardiac tertiary neonatal intensive care units (NCTNs) manage newborns with CHD prior to planned transfer to specialist cardiac surgical centres (SCSC). It improves patient flow in SCSCs, enables families to be nearer home, and…

Tags: 2024, adenosine/pv [Special Situation for Pharmacovigilance], Article, Artificial Ventilation, Birth Weight, Cardiologist, Cardiomyopathy, cardioversion, Chee YH, Congenital Heart Disease, diuretic agent/dt [Drug Therapy], diuretic agent/pv [Special Situation for Pharmacovigilance], Drug Withdrawal, Dunning-Davies B, flecainide/pv [Special Situation for Pharmacovigilance], Gestational Age, heart arrhythmia, heart failure/dt [Drug Therapy], heart tumor, Human, isoprenaline/pv [Special Situation for Pharmacovigilance], Kelsall W, Low Birth Weight, Male, Neonatal Intensive Care Unit, Newborn, Observational Study, Oxygen Therapy, Pediatric Cardiology, Pregnancy, Prematurity, propranolol/pv [Special Situation for Pharmacovigilance], prostaglandin E2/pv [Special Situation for Pharmacovigilance], Psychological Well-being, Retrospective Study, September List 2024, Singh Y, supraventricular tachycardia, tertiary care center, Yates R

Prevalence and Mortality of Life-Threatening and Life-Shortening Diseases in Children and Adolescents in Germany

This study provides prevalence and mortality data for 0- to 19-year-old children and adolescents with medically documented life-threatening and life-shortening diagnoses in Germany. A secondary data analysis of more than 12 million insured persons…

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…

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…

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)…

Maintaining Parental Roles During Neonatal End-of-Life Care: A Review of the Literature

Parents who are experiencing neonatal death need support in promoting and maintaining their parental role. This includes parenting their infant during end-of-life. Bedside nurses should partner with parents to help them maintain the parent-infant…

Tags: 2024, Bartrug WC, Child Parent Relation, Critical Care Nursing Clinics Of North America, Grief, Human, Human Relation, Infant Newborn, Interpersonal Communication, July List 2024, Newborn, Psychology, Terminal Care

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…

Characterizing Pain in Pediatric Palliative Care Clinical Documentation

Outcomes: 1. Attendees will be able to identify the methods used to abstract and characterize pain from the electronic health record of children and adolescents with cancer receiving palliative care services. 2. Attendees will be able to describe the…

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…

Public Attitudes Toward Ethics and Practices in End-of-Life Decision-Making for Neonates

Importance: Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the…

Serious news communication between clinicians and parents impacts parents' experiences, decision-making, and clinical care for critically ill neonates

Physicians often disclose serious news with patients and families; however, many clinicians experience anxiety around these conversations.1 Fear of their patients' and their own emotional reactions may cause providers to avoid these conversations…

Qualitative Study of Nurses' Experiences as They Learned to Provide Neonatal Palliative Care

Objective: To describe the experiences of nurses as they learned to provide palliative care in the NICU. Design: Interpretive description. Setting: Four NICUs in three Canadian provinces, including one rural center and three tertiary centers.…

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…

Training perinatal nurses in palliative communication by using scenario-based simulation: A quasi-experimental study

Aim: This study aimed to assess the impact of two educational modules on enhancing the communication confidence, competence and performance of perinatal nurses in the context of palliative care. Background: Concerns have arisen regarding the…

Parents' participation in collegial meetings to discuss withholding or withdrawing treatment for their newborn: Working to improve information-sharing

Aim: The role of parents in decision-making concerning their child's end-of-life care is not clearly defined. Their participation is encouraged by ethical reflection, in particular by the CCNE (French National Ethics Advisory Committee), but laws are…

Newborn Care Curriculum: Palliative Care for the Newborn

Introduction: Because pediatric hospitalists have increasing responsibilities in newborn hospitalization, training in perinatal palliative care is beneficial. A 2015 needs assessment revealed 68% of surveyed pediatric hospitalists were interested in…

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

The NeoPACE study: study protocol for the development of a core outcome set for neonatal palliative care

Neonatal death is the leading category of death in children under the age of 5 in the UK. Many babies die following decisions between parents and the neonatal team; when a baby is critically unwell, with the support of healthcare professionals,…

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…

Diversity of Parent Emotions and Physician Responses During End-of-Life Conversations

BACKGROUND AND OBJECTIVES: To provide support to parents of critically ill children, it is important that physicians adequately respond to parents' emotions. In this study, we investigated emotions expressed by parents, physicians' responses to these…

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