Browse Items (49 total)

PedPalASCNET_TPPCRCommentary_112017.pdf
This commentary brings together perspectives from an interdisciplinary group of researchers –five trainees, a research manager, and a senior scientist –who share an interest in the emergent field of childhood ethics and pediatric palliative…

The capability of effectively communicating is crucial when providing palliative care, especially when the patient is a child. Communication among healthcare professionals with the child and family members must be clear, concise, and consistent. Use…

AIM: To investigate clinical course and mortality-associated factors in children with Down syndrome (DS) managed in a medical paediatric intensive care unit. METHODS: A single-centre, retrospective study conducted between 2001 and 2010 in DS children…

PURPOSE: Dravet syndrome (DS), also known as severe myoclonic epilepsy of infancy (SMEI), is a rare genetic disorder that results in severe childhood-onset epilepsy. Children with DS initially present with seizures in the first year of life that are…

This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers' moral distress and decrease length of stay for patients with life-threatening illnesses. We…

Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the…

Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

BACKGROUND: Perinatal losses are traumatic events in the lives of families and can have serious long-term consequences for the psychological health of parents and any subsequent children. DESIGN: A prospective follow-up study. METHODS: We recruited,…

BACKGROUND: Children receiving hospice and palliative care (HPC) differ from adults in important ways. Children are more likely to have rare diagnoses, less likely to have cancer, have longer lengths of stay on hospice, and are more likely to be…

AIM: We compared neonatal deaths and end-of-life decisions in a neonatal intensive care unit (NICU) and paediatric intensive care unit (PICU) in a Dutch tertiary children's hospital. SUBJECTS: All 235 full-term infants who died within 28 days of life…

From the time when children enter the preteen years onward, pediatric medical decision-making can entail a complex interaction between child, parents, and pediatrician. When the child and parents disagree regarding medical decisions, the pediatrician…

Importance  Navigating requests from parents or family caregivers not to disclose poor prognosis to seriously ill children can be challenging, especially when the requests seem culturally mediated. Pediatric clinicians must balance obligations to…

Aims and objectives To report parent and professional perspectives of step‐down care in assisting the transition from hospital to home, within one children's hospice in a constituent country of the United Kingdom. Background In recent years,…

Introduction: Subcutaneous hydration (hypodermoclysis) and drug administration is a widely used method of analgesic therapy in adult palliative care medicine. Very little is known about its use in neonatal medicine. Evidence-based guidelines do not…

Background In the last decade, the number of children with life-limiting and life-threatening conditions in England has almost doubled, and it is estimated that worldwide, there are 1.2 million children with palliative care needs. Families and…

AIM: This study described end-of-life care for children affected by spinal muscular atrophy type 1 (SMA1), which is characterised by progressive muscle weakness and develops in the first six months of life. METHODS: We retrospectively analysed 17…

Children with serious, complex medical or life-threatening conditions and their families often fail to receive effective, consistent, timely, and competent care that meets their physical, emotional, and spiritual needs. Enhancing both basic education…

The perinatal world is unique in its dutiful consideration of two patients along the lines of decision-making and clinical management - the fetus and the pregnant woman. The potentiality of the fetus-newborn is intertwined with the absolute…

CONTEXT: While access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD). OBJECTIVES: To examine features of subspecialty PPC involvement for children…

Context: Children with intellectual disability (ID) are at risk for adverse end-of-life outcomes including high emergency room utilization and hospital readmissions, along with low hospice enrollment.Objectives: The objective of this study was to…

Pediatric cardiomyopathies are rare diseases with an annual incidence of 1.1 to 1.5 per 100 000. Dilated and hypertrophic cardiomyopathies are the most common; restrictive, noncompaction, and mixed cardiomyopathies occur infrequently; and…

BACKGROUND: Parents who experience a perinatal loss often leave the hospital with empty arms and no tangible mementos to validate the parenting experience. Opportunities to create parenting experiences with transitional objects exist following the…

AIM: This Italian study investigated home-based palliative care for young children and how long it took parents to meet their needs. METHODS: The study population consisted of 33 families with a child under the responsibility of the Veneto Regional…

OBJECTIVES: The high cost of critical care has engendered research into identifying influential factors. However, existing studies have not considered patient vital status at ICU discharge. This study sought to determine the effect of mortality upon…

INTRODUCTION: Despite recent advances in neonatal intensive care in Korea, few studies exist on the end-of-life decisions in newborns. In this study, we sought to examine the status of end-of-life decisions in neonates, changes over time, and…

We must ensure that the 20,000 US children (age 0 to 19 years) who die as a result of serious illness annually receive high-quality end-of-life care. Ensuring high-quality end-of-life care requires recognition that pediatric end-of-life care is…

Management and monitoring of infants within the neonatal intensive care unit represents a unique challenge. It involves an array of life-threatening diseases, procedures with potentially lifelong impacts, co-morbidities associated with preterm birth…

OBJECTIVE: The Perinatal Grief Intensity Scale (PGIS) was developed for clinical use to identify and predict intense grief and need for follow-up after perinatal loss. This study evaluates the validity of the PGIS via its ability to predict future…

The specialist provision of paediatric palliative care is a relatively new discipline. This article will review the epidemiology of paediatric palliative care and will discuss the current delivery of this care within the United Kingdom. The author…

The number of children without a diagnosis in pediatric palliative home care and the process of decision-making in these children are widely unknown. The study was conducted as single-center retrospective cohort study. Between January 2013 and…

The focus of critical care has evolved from saving lives to preservation of function. Morbidity rates in pediatric critical care are approximately double mortality rates. Morbidity includes complications of disease and medical care. In pediatric…

Pain is a frequent and significant problem for children with impairment of the central nervous system, with the highest frequency and severity occurring in children with the greatest impairment. Despite the significance of the problem, this…

Since the 1998 publication of the groundbreaking Adverse Childhood Experiences (ACE) Study conducted by the Centers for Disease Control and Prevention and Kaiser Permanente, increased research and funding has focused on mitigating experiences that…

At least 8 million children would need specialized pediatric palliative care (PPC) services annually worldwide, and of the more than 42,000 children and teenagers dying annually in the United States, at least 15,000 children would require PPC.…

Mucopolysaccharidoses (MPS) types I, II and VI are associated with deficiencies in alpha-L-iduronidase, iduronate-2-sulfatase and N-acetylgalactosamine-4-sulfatase, respectively, and generally involve progressive and multi-systemic clinical…
Output Formats

atom, dcmes-xml, json, omeka-xml, rss2