Browse Items · Pediatric Palliative Care Library

Uncertainty and Perinatal Post?Traumatic Stress Disorder in the Neonatal Intensive Care Unit

Parents of infants in the neonatal intensive care unit (NICU) are at increased risk of developing perinatal post?traumatic stress disorder (PPTSD), a mental health condition known to interfere with healthy parental and infant attachment. Feelings of…

Turning Water into Wine: A New Community Pharmacy Workforce Delivering Paediatric Palliative Care Services Across Scotland

Background: A ground breaking paediatric palliative care study in Scotland in 2015 identified that 15,400 babies, children and young people (BCYP) with life-limiting conditions required input from palliative care services, significantly higher than…

Trisomy 18: A Survey Of Opinions, Attitudes, And Practices Of Neonatologists

We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal…

Tags: 2016, American Journal of Medical Genetics Part A, Attitudes, Biggio JR, Edwards RK, Genetics & Heredity, Infant, Intervention, Jacobs AP, June 2016 List, Management, Neonatology, Philips JB, Robin NH, Subramaniam A, Tang Y, Trisomy 18

Trisomy 18 in neonates: prenatal diagnosis, clinical features, therapeutic dilemmas and outcome

The study aimed to analyse the clinical courses of aggressively treated neonates with cytogenetically confirmed trisomy 18, with special attention focused on the efficiency of prenatal diagnostics, associated malformations, therapeutic dilemmas and…

Trends in incidence, prevalence, and mortality of neuromuscular disease in Ontario, Canada: a population-based retrospective cohort study (2003-2014)

Background: Population trends of disease prevalence and incidence over time measure burden of disease and inform healthcare planning. Neuromuscular disorders (NMD) affect muscle and nerve function with varying degrees of severity and disease…

Tags: 2019, Adolescent, Adult, Age, Aged, America, Amin R, amyotrophic lateral sclerosis, amyotrophic lateral sclerosis/ep [Epidemiology], Animals, APEC countries, Article, August 2019 List, Bai Y, Canada, Child, childhood disease/ep [Epidemiology], childhood diseases, Children, Chordata, Cohort Analysis, Cohort Studies, Commonwealth of Nations, Controlled Study, Data Base, death rate, Developed Countries, Disease Course, disease prevalence, Disease Progression, Eukaryotes, Female, Gershon A, Goldstein R, Health Care, health Insurance, Hominidae, Homo, Human, Human Diseases, Incidence, Infant, International Classification of Diseases, Katz S, Leasa D, Major Clinical Study, Male, Mammals, Man, McKim D, Middle Aged, Mortality, mortality rates, muscles, neuromuscular disease/ep [Epidemiology], Neuromuscular Diseases, Neuromuscular Disorders, Nonoyama M, North America, OECD Countries, Ontario, Palliative Care, Palliative Therapy, planning, PLoS One, Population Research, Preschool Child, Prevalence, Primates, Retrospective Studies, Retrospective Study, Rose L, School Child, sclerosis, spinal muscular atrophy/ep [Epidemiology], Spine, Survival, Tandon A, trend study, Trends, Vertebrates, Young Adult

Treatment of pain in pediatric oncology: a Swedish nationwide survey

Pain treatment is a crucial aspect in the care of children with cancer and there are many studies demonstrating inefficient pain treatment. In this study, questionnaires dealing with pain treatment of children with malignant diseases were sent to all…

Treatment of obstructive sleep apnea in achondroplasia: evaluation of sleep, breathing, and somatosensory-evoked potentials

The occurrence of obstructive sleep apnea (OSA) is achondroplasia has been linked to brain stem compression. Overnight sleep studies (11 subjects) and somatosensory-evoked potentials (SEP's, 10 subjects) were recorded before and after conventional…

Treating a child with a life-threatening condition

Treasure Weekend: supporting bereaved siblings

The importance of allowing bereaved siblings the opportunity to be involved and mourn the loss of a sibling family member has gained increasing recognition. Child family members may need support in the same way that parents might need support to cope…

Transition to adulthood: the important role of the pediatrician

This article, written by a parent of 2 youths with special health care needs and a pediatrician, builds on the Medical Home framework to give concrete examples of what physicians and families can and should do to prepare families for transition(s).…

Tags: 2004, Adolescent, Adolescent Development, Adolescent Transitions, Backlog, Child, Child Development, Chronic Disease, Developmental Disabilities, Disabled Children, Humans, Infant, Journal Article, Olsen DG, Pediatrics, Physician's Role, Preschool, Swigonski NL

Transition to a Primary Palliative Care Model in the NICU (FR441B)

Objectives: * Compare the benefits of a primary palliative care model to those of a specialty palliative care service. * Propose a stepwise process to initiate the transition from a specialty palliative care service to a primary palliative care…

Tracking neonatal nosocomial infection: the continuous quality improvement cycle

Neonatal nosocomial infection (NNI) is a major complication of neonatal care, increasing mortality, morbidity and the costs of healthcare. Management of NNI involves attention to many details of care, creating a culture of change within a neonatal…

Tags: 2011, Aydon L, Backlog, Biggs S, Cross Infection/epidemiology/prevention & control, Gill AW, Humans, Incidence, Infant, Infant Care/methods/organization & administration/standards, Infection Control/methods/organization & administration/standards, Jones C, Journal Article, Keil AD, Newborn, Quality Improvement/organization & administration/standards, The Journal Of Hospital Infection

Toxicity of local anesthetics in infants and children

Local anesthetics are extremely useful for providing anesthesia and analgesia for infants and children of all ages. Despite the toxicity issues raised here, the overall safety record of local anesthetic use in pediatrics has been very good, and local…

Tags: 1993, Absorption, Anesthetics, Backlog, Berde CB, Child, Humans, Infant, Journal Article, Local/administration & dosage/adverse effects/blood/pharmacokinetics/pharmacology, Risk Factors, The Journal Of Pediatrics

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…

Thinking outside the box: prenatal care and the call for a prenatal advance directive

The use of the Impact on Sibling scale with families of children with chronic illness and developmental disability

OBJECTIVE: This study evaluated the Impact on Sibling scale, a six-item measure of parents' perception of the effects of a child's illness on healthy siblings. METHODS: Participants were 122 parents of a child with chronic illness, developmental…

The use of haloperidol in the agitated, critically ill pediatric patient with burns

Haloperidol has become the drug of choice for sedation of the acutely agitated, delirious adult patient in the critical care setting because of its well-documented efficacy and lack of major side effects. Its use in the critically ill pediatric…

The use of drugs with a life-shortening effect in end-of-life care in neonates and infants

OBJECTIVE: The purpose was to describe the use of drugs with a possible or certain life-shortening effect in end-of-life care in infants and to evaluate the possibly lethal effect. DESIGN: For 292/298 deaths of live born infants (

The United Kingdom Sets Limits on Experimental Treatments: The Case of Charlie Gard

The unique grief of grandparents

Nurses are looking beyond parents to provide bereavement support for the wider family

Nurse consultant Michael Tatterton’s research revealed that when a child with a life-limiting condition dies, the grandparents’ ‘unique footprint of grief’ is…

Tags: 2018, Bereavement, Cole E, Family Centered Care, Grandparents, Hypoplastic Left Heart Syndrome, Infant, Infant Death -- Psychosocial Factors, June 2018 List, Male, Nursing Practice, Nursing Standard, Pediatric Nursing

The symptoms of dying children.

The purpose of this study was to examine the symptom prevalence, characteristics, and distress of children dying in hospital. Symptoms during the last week of life were obtained from the medical records. Symptoms and their characteristics during the…

The role of the courts in disagreements over the care of seriously ill babies

Richard Griffith, Senior Lecturer in Health Law at Swansea University, reviews how the courts assist in settling disputes over the care of seriously ill babies and describes the test used to inform decisions about their treatment.

Tags: 2017, British Journal Of Nursing, December 2017 List, Experimental Therapy, Griffith R, Hospitalized Child, Human, Infant, Legislation And Jurisprudence, Long Term Care, Newborn, Terminal Care, Treatment Outcome, United Kingdom

The Relationship Between The Nursing Environment And Delivering Culturally Sensitive Perinatal Hospice Care

BACKGROUND: Wide variations exist among perinatal hospices, and barriers to perinatal palliative care exist at the healthcare level. Research in the area of culturally sensitive perinatal palliative care has been scarce, a gap which this study…

The relationship between grief adjustment and continuing bonds for parents who have lost a child

This article presents findings from a study on the impact of a child's death on parents. We explored the prominence and adaptiveness of parents' continuing bonds expressions, psychological adjustment, and grief reactions. A qualitative case study…

The Outcome of Critically Ill Pediatric Cancer Patients Admitted to the Pediatric Intensive Care Unit in a Tertiary University Oncology Center in a Developing Country: A 5-Year Experience

INTRODUCTION: Cancer remains a major cause of death in children, but recent advances in supportive care and progress in the use of chemotherapy have considerably improved the prognosis. The need for intensive care management in pediatric oncology…

The ocular features of the mucopolysaccharidoses

AIMS: The mucopolysaccharidoses (MPS) are a heterogeneous group of rare disorders characterised by accumulation of glycosaminoglycans within multiple organ systems. This study aimed to determine the prevalence and severity of ocular complications in…

The Needs of Children Receiving End of Life Care and the Impact of a Paediatric Palliative Care Team: A Retrospective Cohort Study

The Need for a Shared Understanding: Domains of Care and Composition of Team in Pediatric Palliative Care Guidelines

Conceptual confusion is a primary barrier to providing quality palliative care. This study aimed to analyze pediatric palliative care (PPC) guidelines from a conceptual perspective to facilitate a shared understanding of palliative care in…

The natural history of Niemann-Pick disease type C in the UK

Niemann-Pick disease type C (NPC) is an autosomal recessive, neurovisceral lipid storage disorder. Mutations in two genes (NPC1 and NPC2) produce indistinguishable clinical phenotypes by biochemical mechanisms that have not yet been entirely…

The natural history of medium-chain acyl CoA dehydrogenase deficiency in the Netherlands: clinical presentation and outcome

OBJECTIVES: To describe the clinical presentation and long-term follow-up of a large cohort of patients with medium-chain acyl-CoA dehydrogenase (MCAD) deficiency. STUDY DESIGN: A nationwide, retrospective analysis of clinical presentation and…

The natural history of juvenile or subacute GM2 gangliosidosis: 21 new cases and literature review of 134 previously reported.

OBJECTIVE: Juvenile GM2 gangliosidosis is a group of inherited neurodegenerative diseases caused by deficiency of lysosomal beta-hexosaminidase resulting in GM2 ganglioside accumulation in brain. The purpose of this study was to delineate the natural…

The natural course of infantile Pompe's disease: 20 original cases compared with 133 cases from the literature

OBJECTIVE: Infantile Pompe's disease is a lethal cardiac and muscular disorder. Current developments toward enzyme replacement therapy are promising. The aim of our study is to delineate the natural course of the disease to verify endpoints of…

The moral experience of parents regarding life-support decisions for their critically-ill children: a preliminary study in France

The common paediatric critical care practice in France is for physicians (rather than parents) to maintain the ultimate responsibility for lifesupport decisions in children. Some French literature asserts that it is inappropriate for parents to bear…

The Marital Implications of Bereavement: Child Death and Intimate Partner Violence in West and Central Africa

In high-mortality contexts, research examining the effects of child mortality has focused almost exclusively on couples' fertility responses while overlooking other potential family consequences. Using nationally representative survey data from 13…

The impact on health-related quality of life from non-steroidal anti-inflammatory drugs, methotrexate, or steroids in treatment for juvenile idiopathic arthritis

OBJECTIVE: To assess and compare the impact of medication treatments on health-related quality of life (HRQOL), family function, and medical status in children with juvenile idiopathic arthritis (JIA). METHODS: Fifty-seven children diagnosed with JIA…

The impact of parental status on the risk of completed suicide.

BACKGROUND: Although some studies suggest that parenthood is associated with a reduced suicide risk, the impact of children on parental suicide has rarely been documented. METHODS: This study investigates the impact of parental status on the risk of…

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

The grief ritual of extracting and donating human milk after perinatal loss

Perinatal loss is a major life crisis involving multiple losses, including the loss of future hopes and dreams, of being pregnant, and of self-esteem, to name a few. In the present study I focus on mothers who experienced perinatal loss and chose to…

The Functional Independence Measure for Children (WeeFIM). Conceptual basis and pilot use in children with developmental disabilities.

Few tools are available to pediatricians for tracking and monitoring disability status in children. We describe the conceptual basis and pilot use of the Functional Independence Measure for Children (WeeFIM). Our pilot use of this instrument in…

The experiences, attitudes and practices of nurses working in a paediatric intensive care unit caring for babies and children at the end of life: A qualitative study

Introduction Of the 74% of UK childhood deaths that occur in hospital, an increasing number-up to 65%-occur in PICU. There is little information about the impact of this on those who provide minute-to minute care of the children and their families,…

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