Pediatric medicine increasingly has recognized the value of integrating behavioral health in medical care, but this trend has not yet extended to pediatric palliative care. Results from a recent survey of pediatric palliative care programs across the…
BACKGROUND: Cancers in children are yet to be recognised as an important cause of childhood morbidity and mortality in developing countries where more than 70% of the world annual cases occur. Despite the limited resources and whatever the projected…
Background: Studies have shown that pediatricians in all stages of training are uncomfortable managing patients at end of life. Our goal was to create and test a portable reference card to improve pediatric resident education in comprehensive care…
Editorial - The evidence base underpinning paediatric palliative care (PPC) needs to be expanded and be made robust if advances in practice and reduction in suffering are to be achieved. While current guidance1 emphasises the need to include children…
BACKGROUND: Out-of-hospital death among children living in resource poor settings occurs frequently. Little is known about the location and circumstances of child death following a hospital discharge. OBJECTIVES: This study aimed to understand the…
Objectives
Reflect on current neonatal intensive care practice
for the seriously ill and or dying neonate.
Explore the role of the primary palliative care
clinician.
Discuss palliative educational goals for intensive
care…
Although the past decade has brought global reductions in maternal, infant and child mortality, many low-resource settings have failed to make significant gains relative to their high-income counterparts. In Ghana, nearly 50% of under-five mortality…
Highlights
•Parent experiences surrounding end-of-life care in the NICU were explored.
•The opportunity to be a parent was important regardless of the infant's prognosis.
•NICU nurses played a critical role in facilitating parenting.
•Living with…
Mowat-Wilson syndrome (MWS) is a multiple congenital anomaly syndrome caused by a heterozygous mutation or deletion of the ZEB2 gene. It is characterized by a distinctive facial appearance in association with intellectual disability (ID) and variable…
BACKGROUND AND PURPOSE:
The American Academy of Pediatrics supports palliative care (PC) for all children with life-threatening illnesses. Thus, many neonatal intensive care unit (NICU) patients and their families could benefit from PC. Our study…
OBJECTIVE:
Health professionals in PICUs support both child and parents when a child's death is imminent. Parents long to stay connected to their dying child but the high-tech environment and treatment implications make it difficult to stay…
Introduction Despite advances in the treatment of cancer in paediatric patients, 15% of children die from the illness progression in Chile, and pain is the most significant symptom in advanced stages. Although the World Health Organization guidelines…
Although we know that families of seriously ill children experience spiritual distress, especially at the end of the child's life, there is little information on the specific spiritual needs of families. In order to develop further training for…
The goal of this study was to explore nurse experiences in communication with children about spiritual topics in order to develop training in this area.
BACKGROUND:
Although spiritual care is essential in pediatric palliative care, few providers…
OBJECTIVE:
Methadone administration has increased in pediatric clinical settings. This review is an attempt to ascertain an equianalgesic dose ratio for methadone in the pediatric population using standard adult dose conversion…
The article discusses some of the features of comparativeness effectiveness trials in relation to patient care. Some of the successes as well as failures of various attempts to integrate randomized comparative effectiveness research with patient care…
OBJECTIVE:
The disclosure of a diagnosis during pregnancy of a fetal malformation, which is incompatible with life, normally comes completely unexpectedly to the parents. Although a body of international literature has considered the topic, most of…
In this study, we analyzed the relationships among clinical, emotional, social, and spiritual dimensions of patients with advanced illness. It was a cross-sectional study, with a sample of 108 patients in an advanced illness situation attended by…
OBJECTIVE: Smith-Lemli-Opitz syndrome (SLOS) is a rare genetic disorder characterized by cholesterol synthesis impairment. A host of physical, developmental, and behavioral presentations are associated with SLOS, many of which have been related with…
Abstract
There are disturbing analogies between the beginning and the end of the life of a child. The hypothesis of a similarity between the birth and the dying process of the child gives rise to discussion around the support provided in the context…
At least 20 million children would benefit from Pediatric Palliative Care (PPC) annually, and 8 million children would need specialized PPC services. In the USA alone, more than 42,000 children 0-19 years died in 2013, fifty-five percent of them…
The death of a neonate is devastating for all involved. Each year, critically ill neonates present to emergency departments across the United States. These infants require acute medical interventions with a goal of stabilization. Despite these…
BACKGROUND:
This study explored psychological adjustment and sibling relationships of siblings of children with life-limiting conditions (LLCs), expanding on previous research by defining LLCs using a systematic classification of these…
Background This study explored psychological adjustment and sibling relationships of siblings of children with life‐limiting conditions (LLCs), expanding on previous research by defining LLCs using a systematic classification of these conditions.…
OBJECTIVES/HYPOTHESIS:
To assess the longitudinal risk of death following tracheostomy in the pediatric age group.
STUDY DESIGN:
Retrospective cohort study.
METHODS:
Hospital records of 513 children (≤18 years) at a tertiary care children's hospital…
Aim The use of Emergency care plans (ECPs) is recommended by ‘Together for Short Lives’, (TFSL) to prevent inappropriate escalation to futile interventions in children with incurable life-limiting conditions (LLC).
Background: Respiratory insufficiency in children with life-limiting and life-threatening conditions is common, it has a lasting impact, yet there is a paucity of evidence to guide clinicians in its management with home support. Objectives: Our aim…
Abstract
OBJECTIVES:
To develop and validate an algorithm to guide selection of patients for pediatric critical care admission during a severe pandemic when Crisis Standards of Care are implemented.
DESIGN:
Retrospective observational study using…
CONTEXT:
In 2010, California launched Partners for Children (PFC), a pediatric palliative care pilot program offering hospice-like services for children eligible for full-scope Medicaid delivered concurrently with curative care, regardless of the…
Introduction: There is very little data about pediatric palliative care (PPC) patients’ visits to the emergency department (ED). This study’s goal was to determine the characteristics of PPC patients who consult the ED. Methods: A five-year…
The survival of newborn babies born with various problems has improved with the access to life sustaining technologies. Despite this, death in the neonatal intensive care unit (NICU) is an inevitable reality. For babies suffering from life limiting…
Aim: End-of-life care remains within the scope of practice of all neonatal units. There is a paucity of literature regarding the evidence-base for palliative care interventions in the perinatal or neonatal population (Balaguer).
Background: Hospitalizations of children with medical complexity (CMC) account for one-half of hospital days in children, with lengths of stays (LOS) that are typically longer than those for children without medical complexity. The objective was to…
BACKGROUND:
Hospitalizations of children with medical complexity (CMC) account for one-half of hospital days in children, with lengths of stays (LOS) that are typically longer than those for children without medical complexity. The objective was to…
OBJECTIVES:
22q11.2 deletion syndrome (22q11DS), a complex genetic syndrome associated with more than 180 features, presents complex challenges for parents including gaining a diagnosis. This phenomenological study sought the "lived" interpretations…
CONTEXT: Breaks in the delivery of health care (ie, [health]care gaps) occur in a large proportion of young people transitioning to adulthood. Developing interventions that prevent adolescents from dropping out of the medical system, as they leave…
Paediatric palliative care is characterised by the holistic care provided to children living with life-limiting and life threatening conditions, ranging from providing symptom control to bereavement support. Due to the nature of the conditions many…
BACKGROUND: The aim of this study was to explore and describe the coping experiences of parents to children admitted to a neonatal unit., METHODS: A qualitative research approach was chosen, using in-depth interviews with eight fathers and eight…
Background: People with CF and their families carry the burden of life-limiting illness. Palliative care enhances quality of life for people with serious and chronic illnesses. Opportunities are numerous to introduce palliative care before patients…
