To obtain parents' identification and description of the behaviors, health care procedures and daily living situations associated with pain in children with cerebral palsy (CP), surveys were sent to parents of children with CP recruited via a clinic…
We aimed to identify characteristics associated with postdischarge health resource use in children without medical complexity who survived an episode of prolonged mechanical ventilation for respiratory illness. We hypothesized that longer durations…
Children and young people can have a wide range of life limiting conditions and may sometimes live with such conditions for many years. This guideline recommends that end of life care be managed as a long term process that begins at the time of…
PURPOSE: The purpose of this study was to describe and show effectiveness of the outreach team model of palliative care (PC) in allowing home death for children with incurable cancer. PATIENTS AND METHODS: Over 7 months, 185 children from 22 United…
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…
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…
BACKGROUND: Early identification of patients in the pediatric intensive care unit (PICU) at risk of nutritional status (NS) deterioration and poor outcomes is desirable. We aimed to identify factors associated with NS deterioration and prolonged PICU…
BACKGROUND: There are few studies that assess the role of different nutritional assessment variables at pediatric intensive care unit (PICU) admission in predicting clinical outcomes. OBJECTIVE: To identify nutritional variables in the first 4 days…
The role of brain biopsy is well established in patients with neoplastic lesions, with a diagnostic yield approaching 95%. The diagnostic yield of brain biopsy in adults with neurological decline varies from 20% to 43%. Only a few studies have…
Description: Purpose: The Little Lights program is a novel, collaborative, nursing-led bereavement photography service created as a solution to the challenge of providing consistent high-quality bereavement photography for families and their dying…
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…
BACKGROUND: Population-based studies monitoring end-of-life care are lacking. This study describes involvement of caregivers, access to specialist palliative care, treatment goals (cure, life-prolonging, or palliation), and content of end-of-life…
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…
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…
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…
INTRODUCTION: Parental socioeconomic status has been proposed to have an influence on childhood cancer mortality even in high-income countries. Our study investigated the influence of parental socioeconomic factors on childhood cancer mortality.…
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…
Neurodegeneration with brain iron accumulation encompasses a heterogeneous group of rare neurodegenerative disorders that are characterized by iron accumulation in the brain. Severe generalized dystonia is frequently a prominent symptom and can be…
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…
Objectives: * Discuss whether the Reiki intervention was feasible to implement with this population of very young hospitalized children receiving palliative care. * Discuss why parents thought the Reiki intervention was helpful to their child.…
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…
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…
OBJECTIVE: To summarize and synthesize extant literature on memory making in bereavement care for parents who experience the death of a newborn and to identify opportunities for future research. DATA SOURCES: We conducted a systematic search of four…
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…
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…
Long-term gastrostomy is a predictable intervention to ameliorate the effects of feeding and swallowing difficulties among children with severe spastic cerebral palsy. The evidence evaluating the efficacy and implications of the available gastrostomy…
BACKGROUND: Respiratory syncytial virus (RSV) is the most common cause of viral lower respiratory tract infections (LRTI). Viral LRTI is a risk factor for bacterial superinfection, having an escalating incidence with increasing severity of…
OBJECTIVE:
Many children who die are eligible for hospice enrollment but little is known about parental perceptions of the hospice experience, the benefits, and disappointments. The objective of this study was to explore parental perspectives of the…
BACKGROUND: The aim of the study was to make a comprehensive inventory of the physical, psychological, and social symptoms of children with cancer and their parents during the palliative phase and the extent to which health professionals address…
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…
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…
Feeding difficulties are common in neurologically impaired children, often leading to great distress and frustration in the child and family. A gastrostomy may be advocated if oral intake is inadequate causing poor weight gain or when there is…
AIM: The aim of this study was to describe the unique experiences of parents facing a Life Limiting Fetal Conditions (LLFC) diagnosis, who chose to continue with their pregnancy, as they prepare for childbirth through individual and group prenatal…
