Trisomy 13 and 18 (T 13/18) are rare chromosomal abnormalities associated with high morbidity and mortality. Improved survival rates and increased prevalence of aggressive medical intervention have resulted in families and physicians holding…
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: Pulmonary arterial hypertension (PAH) is a terminal disease that can be diagnosed in children and adults. Adverse effects of treatment combined with a terminal illness can lead to a plethora of unmet patient needs that can be addressed by…
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…
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…
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…
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…
OBJECTIVES: To characterize admission patterns, critical care resource utilization, and outcomes in moderate pediatric traumatic brain injury. DESIGN: Retrospective cohort study. SETTING: National Trauma Data Bank. PATIENTS: Children under 18 years…
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…
Abbreviations:EOL — end of lifePPC — pediatric palliative careThe importance of pediatric palliative care (PPC) for children with cancer has been broadly embraced over the last 2 decades in response to compelling evidence of high symptom burden and…
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…
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…
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,…
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…
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.…
Identifying late effects of treatment and integrating palliative care when appropriate are increasingly recognized as important elements of childhood tumor management. Patients with CNS tumors are at a high risk for mortality, and survivors have high…
BACKGROUND: Advances in human development sciences point to tremendous possibilities to promote healthy child development and well-being across life by proactively supporting safe, stable and nurturing family relationships (SSNRs), teaching…
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…
OBJECTIVES: We investigated whether diagnostic categories and presence of infections were associated with increased mortality or length of stay (LOS) in patients admitted to a pediatric intensive care unit (PICU). METHODS: A retrospective study of…
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…
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…
PURPOSE OF REVIEW: Traumatic brain injury (TBI) is a leading cause of death and disability in children. Prognostication of outcome following TBI is challenging in this population and likely requires complex, multimodal models to achieve clinically…
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…
BACKGROUND: Pain management is a challenging task for family caregivers in home hospice care. However, there are limited studies that examine the challenges regarding pain management in hospice care from family caregivers' perspectives. OBJECTIVES:…
Cancer is a leading cause of death in adolescents and young adults (AYAs) Wiener et al. (Pediatr Blood Cancer 60(5):715-718, 2013). Though most AYAs will survive, cancer will become incurable in 10-40 % Schrijvers and Meijnder (Cancer Treat Rev…
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…
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 descriptive qualitative study explored parent experiences related to their infant's neonatal intensive care unit (NICU) hospitalization, end-of-life care, and palliative care consultation. "Life and death in the NICU environment" emerged as 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…
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…
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…
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…
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…
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…
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…
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…
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…
In the intense, cure-oriented setting of hematopoietic stem-cell transplantation (HSCT), delivery of high-quality palliative and end-of-life care is a unique challenge. Although HSCT affords patients a chance for cure, it carries a significant risk…
