Browse Items · Pediatric Palliative Care Library

Patterns of paediatric end-of-life care: A chart review across different care settings in Switzerland

Background: Paediatric end-of-life care is challenging and requires a high level of professional expertise. It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of disease-specific…

Tags: 103-90-2 (paracetamol), 2018, Adolescent, Aebi C, Ansari M, Article, Baer R, Bergstraesser E, Bernet V, Bmc Pediatrics, Brazzola P, Bucher HU, Buder R, Cagnazzo S, Cardiology, Cause Of Death, Child, Child Care, Child Death, Cignacco E, Cohort Analysis, community care, Dinten B, Dorsaz A, Drug Use, Elmer F, Engberg S, Enriquez R, Eskola K, Fahrni-Nater P, Female, Finkbeiner G, Frey B, Frey U, Greiner J, Hassink RI, Health Care Utilization, Home Care, Hospital Admission, Human, Infant, Intensive Care Unit, invasive procedure, Keller S, Kretschmar O, Kroell J, Laubscher B, Leibundgut K, Length Of Stay, Life Sustaining Treatment, Major Clinical Study, Malaer R, Male, Medical Record Review, Meyer A, narcotic analgesic agent, Nelle M, Neonatology, Neuhaus T, Neurology, Newborn, Niggli F, October 2018 List, Oncology, Paracetamol, Perrenoud G, Pfammatter JP, Plecko B, Popovic MB, Ramelet AS, Resuscitation, Retrospective Study, Rupf D, Sennhauser F, September 2018 List, Stade C, Steinlin M, Stoffel L, Stuessi C, Switzerland, Terminal Care, Thomas K, Treatment Withdrawal, Von der Weid N, von Vigier R, Vonarburg C, Wagner B, Wernz B, Wieland J, Zimmermann K

Facilitators and Barriers Affecting Implementation of Neonatal Palliative Care by Nurses in Mainland China

Neonatal nurses in mainland China encounter various challenges when it comes to delivering palliative care to neonates. The aim of this study was to determine the barriers and facilitators of neonatal nurses' attitudes to palliative care for neonates…

Tags: 2022, acceptance, Adult, Aged, Analgesia, Article, Attitude, Barriers, Black BP, CARE, China, Chinese, Clinical, controlled, Death, decision, Education, emotional, Facilitators, Female, Frontiers in Pediatrics, guidance, Human, intensive, Kain VJ, Major, making, Male, middle, Multicenter, Neonatal, Newborn, Nurse, Nurses, October 2022 List, Palliative, Scale, script, simplified, Skill, Social, Song Y, study, Therapy, Unit, vocational, Well-being, Zhong Y

Childhood idiopathic thrombocytopenic purpura in the Nordic countries: epidemiology and predictors of chronic disease

AIM: To describe the epidemiology of idiopathic thrombocytopenic purpura (ITP) in the Nordic countries, to define clinical subgroups and to investigate factors predicting chronic disease. METHODS: A prospective registration was done from 1998 to…

Withholding and withdrawal of life-sustaining treatments for neonate in Japan: Are hospital practices associated with physicians' beliefs, practices, or perceived barriers?

OBJECTIVE: To describe the current status of withholding or withdrawal of life-sustaining interventions (LSI) for neonates in Japan and to identify physician- and institutional-related factors that may affect advance care planning (ACP) practices…

Evaluation of heart murmurs in children: cost-effectiveness and practical implications

OBJECTIVE: To assess the cost-effectiveness of various strategies to evaluate heart murmurs in children. METHODS: We modeled 6 strategies to follow the initial examination by the pediatrician: (1) refer suspected pathologic murmurs to a cardiologist,…

Natural history of trisomy 13

The poor prognosis of patients with trisomy 13 has long been accepted and has been ascribed to brain and heart malformations. It has been suggested, however, that the long term survival is better than was previously thought and that cardiac surgery…

Death in the neonatal intensive care unit: changing patterns of end of life care over two decades

BACKGROUND: Death remains a common event in the neonatal intensive care unit, and often involves limitation or withdrawal of life sustaining treatment. OBJECTIVE: To document changes in the causes of death and its management over the last two…

Morbidity and mortality in medium chain acyl coenzyme A dehydrogenase deficiency

Medium chain acyl coenzyme A dehydrogenase (MCAD) deficiency presents with episodic fasting, hypoketotic hypoglycaemia, and coma. It is known to be potentially lethal, but the outlook for survivors is thought to be good. We reassessed all patients…

Cultural and religious considerations in pediatric palliative care

OBJECTIVE: A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare.…

Task force 1: the changing profile of congenital heart disease in adult life

Childhood and adolescent cancer statistics, 2014

In this article, the American Cancer Society provides estimates of the number of new cancer cases and deaths for children and adolescents in the United States and summarizes the most recent and comprehensive data on cancer incidence, mortality, and…

Death in the intensive care nursery: physician practice of withdrawing and withholding life support

OBJECTIVE: To determine the frequency of selective nontreatment of extremely premature, critically ill, or malformed infants among all infant deaths in a level III intensive care nursery (ICN) and to determine the reasons documented by neonatologists…

Congenital malformations of the central nervous system in a 1-year birth cohort followed to the age of 14 years

A 1-year birth cohort from northern Finland comprised 12,058 children, 96% of all live-born infants born in the region in 1966. The development and morbidity of these children were followed up to the age of 14 years. Altogether, 40 children (25 boys…

The Groningen protocol--euthanasia in severely ill newborns

2005

Tags: 2005, Backlog, Death and Euthanasia, Euthanasia/ethics/legislation & jurisprudence, Humans, Infant, Intensive Care/ethics/legislation & jurisprudence, Journal Article, Netherlands, Newborn, Practice Guidelines, Prognosis, Sauer PJ, The New England Journal Of Medicine, Third-Party Consent/legislation & jurisprudence, Verhagen E

Categorizing neonatal deaths: a cross-cultural study in the United States, Canada, and The Netherlands.

OBJECTIVE: To clarify the process of end-of-life decision-making in culturally different neonatal intensive care units (NICUs). STUDY DESIGN: Review of medical files of newborns >22 weeks gestation who died in the delivery room (DR) or the NICU…

Why Do Neonatologists in Scandinavian Countries and the Netherlands Make Life-and-death Decisions So Different?

An examination of the policies regarding the care of extremely premature newborns reveals unexpected differences between Scandinavian countries and the Netherlands. Three topics related to decision-making at the beginning and at the end of life are…

Tags: 2018, Attitude Of Health Personnel, Clinical Decision-Making/mt [Methods], Humans, Infant, Infant Care/mt [Methods], Infant Care/px [Psychology], Infant Care/st [Standards], July 2019 List, Neonatologists/px [psychology], Neonatologists/st [Standards], Netherlands/ep [Epidemiology], Newborn, Pediatrics, Scandinavian and Nordic Countries/ep [Epidemiology], Survival Rate/td [Trends], Verhagen A A E, Withholding Treatment/st [Standards]

Long-chain 3-hydroxyacyl-coenzyme A dehydrogenase deficiency with the G1528C mutation: clinical presentation of thirteen patients

Long-chain 3-hydroxyacyl-coenzyme A (CoA) dehydrogenase is one of three enzyme activities of the mitochondrial trifunctional protein. We report the clinical findings of 13 patients with long-chain 3-hydroxyacyl-CoA dehydrogenase deficiency. At…

Palliative care in neonatal period and ethical issues

Perinatal palliative care is the active total care of the fetus who has been diagnosed with a life-limiting condition with his/her entirety and also involves giving support to the family. It begins when illness is diagnosed, and continues regardless…

Pediatric cardiopulmonary resuscitation: advances in science, techniques, and outcomes

More than 25% of children survive to hospital discharge after in-hospital cardiac arrests, and 5% to 10% survive after out-of-hospital cardiac arrests. This review of pediatric cardiopulmonary resuscitation addresses the epidemiology of pediatric…

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

Pediatricians' attitudes affecting decision-making in defective newborns

A questionnaire designed to identify the factors that influence the resolution of ethical dilemmas was returned by 230 (57% of the total) Massachusetts pediatricians. The decision to recommend surgery for an infant with Down's syndrome with duodenal…

Methadone as treatment for iatrogenic narcotic dependency in pediatric intensive care unit patients

Sleep disturbances in children, adolescents, and young adults with severe psychomotor impairment: impact on parental quality of life and sleep

AIM: In childhood, severe psychomotor impairment (SPMI) is associated with profound sleep disturbances. With the help of newly developed and validated measures, we systematically assessed how much a child's sleep disturbance affects parental sleep…

Memory making in neonatal end-of-life care

Background: Providing appropriate psychosocial care for parents experiencing the loss of a newborn is crucial. Currently, a number of practices are recommended in perinatal and neonatal palliative care guidelines that are designed to help families to…

Tags: 2018, conference abstract, Grounded Theory, Harms LK, health practitioner, Human, Infant, Interview, Journal of Paediatrics and Child Health, June 2018 List, Memory, Newborn, Nicholson PF, Terminal Care, Thornton RK

Being a Parent: Findings from a Grounded Theory of Memory-Making in Neonatal End-Of-Life Care

PURPOSE: Neonatal palliative care guidelines increasingly recommend that parents be encouraged to provide care for their dying baby and to spend time with the before and after death. However, little is currently known about how parents perceive such…

Tags: 2021, Bereavement, Harms L, Infant, Journal of Pediatric Nursing, May 2021 List, Memory-making, Newborn, Nicholson P, Parent, Photography, Thornton R

Memory-Making in Neonatal End-of-Life Care

Background: The loss of a child in the first hours or days of life is a profoundly distressing event for parents. Provision of appropriate psycho-social care for bereaved parents is critical. Current perinatal and neonatal palliative care guidelines…

Tags: 2018, conference abstract, Controlled Study, Death, February 2019 List, Grounded Theory, Harms L, health practitioner, Human, Infant, Interview, Journal of Pain and Symptom Management, Memory, Neonatal Intensive Care Unit, Newborn, Nicholson P, Staff, Terminal Care, Thornton R

Creating evidence: Findings from a grounded theory of memory-making in neonatal bereavement care in Australia

PURPOSE: Perinatal and neonatal palliative care guidelines recommend the provision of photographs and other mementos as an element of care for parents bereaved by neonatal loss. However, little is known about parents' perceptions of such bereavement…

Tags: 2020, Bereavement, Harms L, Infant, Journal of Pediatric Nursing, June 2020 List, Memory-making, Newborn, Nicholson P, Parent, Photography, Thornton R

Utilizing an oral sucrose solution to minimize neonatal pain

ISSUES AND PURPOSE: To present an evidence-based practice protocol for oral sucrose administration to minimize neonatal procedural pain. CONCLUSION: Examination of published research may provide additional modalities to expand an established…

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

Unusual clinical presentations in four cases of Leigh disease, cytochrome C oxidase deficiency, and SURF1 gene mutations

Mutations in the SURF1 gene are the most frequent causes of Leigh disease with cytochrome c oxidase deficiency. We describe four children with novel SURF1 mutations and unusual features: three had prominent renal symptoms and one had ragged red…

Care goals and decisions for children referred to a pediatric palliative care program

OBJECTIVE: To describe goals of care for children with complex, life-limiting conditions and to assess the variables that may influence these goals. METHODS: Goals of care were elicited from the parents and children with complex, life-limiting…

Beta-endorphin concentration after administration of sucrose in preterm infants

BACKGROUND: Sucrose is an effective analgesic for procedural pain in preterm infants. It has been hypothesized that its analgesic effects are mediated by the release of endogenous opioid neurotransmitters such as beta-endorphin. OBJECTIVE: To…

Aromatic L-amino acid decarboxylase deficiency: overview of clinical features and outcomes

In this paper, we provide a brief update of diagnostic considerations and biochemical phenotype in L-amino acid decarboxylase deficiency. We review clinical features and outcome data in 11 affected patients, including 7 previously unreported cases.…

Gastrostomy tube feeding in children with cerebral palsy: a prospective, longitudinal study

We report a longitudinal, prospective, multicentre cohort study designed to measure the outcomes of gastrostomy tube feeding in children with cerebral palsy (CP). Fifty-seven children with CP (28 females, 29 males; median age 4y 4mo, range 5mo to 17y…

Nature of conflict in the care of pediatric intensive care patients with prolonged stay

OBJECTIVE: To determine the frequency, types, sources, and predictors of conflict surrounding the care of pediatric intensive care unit (PICU) patients with prolonged stay. SETTING: A tertiary care, university-affiliated PICU in Boston. PARTICIPANTS:…

Prognosis for survival and improvement in function in children with severe developmental disabilities

OBJECTIVE: To derive prognostic data for survival and clinical improvement in children with severe developmental disabilities. STUDY DESIGN: A 13-year follow-up study of several cohorts of children initially evaluated before their first birthday. The…

Follow-up in children with Joubert syndrome

Although Joubert syndrome (JS) was first reported in 1969 by Joubert et al (21), the long-term outcome is not yet documented. We report 19 children (4 pairs of siblings) from a single institution diagnosed with JS. Nine children were last seen…

Decision-making at the limit of viability: The Austrian neonatal choice context

Background: We aimed to explore the shared decision-making context at the limit of viability (weeks 22-25 of gestation) through analyzing neonatologist's communication strategies with parents and their possible impact on survival and…

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.…

How doctors manage conflicts with families of critically ill patients during conversations about end-of-life decisions in neonatal, pediatric, and adult intensive care

Purpose Intensive care is a stressful environment in which team-family conflicts commonly occur. If managed poorly, conflicts can have negative effects on all parties involved. Previous studies mainly investigated these conflicts and their management…

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