Purpose: To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children's parents. Methods: A qualitative descriptive case study was conducted. Purposeful sampling took…
PURPOSE OF REVIEW: Vulnerable children with medical complexity are silent victims of the COVID-19 pandemic, impacted by lack of resources and sick caregivers. In this article, we examine ways in which the pandemic has increased the significant…
Childhood-onset movement disorders represent a heterogenous group of conditions. Given the complexity of these disorders, the transition of care from pediatric to adult medicine is an important consideration. We performed a scoping review of the…
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).…
A survey of adolescents and young adults with cystic fibrosis (CF) attending an adult CF center was conducted to evaluate a transition program as a means of transferring care from pediatric to adult setting. A total of 40 patients completed a…
INTRODUCTION: The outcomes of different types of transitions of young people with chronic diseases have been poorly investigated. OBJECTIVE: To evaluate and compare a structured transition from the paediatric diabetes services (PDS) into the adult…
OBJECTIVE: To describe the proportion of youth with special health care needs (YSHCN) who are receiving services for medical transitions and to describe which sociodemographic and health care-related factors are associated with receiving transition…
PURPOSE OF REVIEW: The transition of healthcare from pediatric to adult settings has become more significant over the past 20 years as the survival of young people with chronic illness and disability has increased and healthcare delivery has become…
BACKGROUND: Pediatric fellows receive little palliative care (PC) education and have few opportunities to practice communication skills. OBJECTIVE: In this pilot study, we assessed (1) the relative effectiveness of simulation-based versus didactic…
Background: Bereaved parents value receiving support from their children's health care teams. Pediatric residents are important members of the teams that care for children at end of life and can play a meaningful role in communication with bereaved…
BACKGROUND: In pediatric oncology and critical care, physicians give difficult news, including discussions regarding palliative care and comfort measures, but there are minimal data regarding fellowship program preparation for this task. PURPOSE: We…
In order to gain more insight on the influence of ethnic diversity in paediatric cancer care, the perspectives of care providers were explored. Semi-structured interviews were conducted among 12 paediatric oncologists and 13 nurses of two different…
BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP)…
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…
BACKGROUND: Children with neurologic impairment (NI) are at risk for developing co-occurring chronic conditions, increasing their medical complexity and morbidity. We assessed the prevalence and timing of onset for those conditions in children with…
CONTEXT: There is potential value to home-based palliative care for children with serious illness delivered via telemedicine (TM HBPC). Evidence to guide optimal design and delivery of TM HBPC is urgently needed. OBJECTIVES: To explore the existing…
Purpose: Early screening and intervention for dysphagia is crucial to offset potential outcomes such as compromised nutrition or reduced respiratory function. Current paediatric dysphagia screening tests are subjective with poor sensitivity and…
Background: Spirituality refers to the dynamic dimension of human life that relates to the way that persons experience meaning, purpose, and transcendence. The complex task of parenting a child with a life-limiting condition may raise existential…
Objectives: Art is being increasingly appreciated for its healing capacity in pediatric medicine. However, while mediums like music and painting have already been widely integrated into children's health institutions across the nation, photography is…
CONTEXT: Parental caregiving for a child with a life-limiting condition (LLC) is complex physical and mental work. The impact of this caregiving on parents' physical health is unknown. OBJECTIVES: (1) To review existing evidence on the physical…
Pediatric palliative advanced practice registered nurses (APRNs) leaders are essential in advancing the field of pediatric palliative care. With expertise in pediatrics and strong advocacy skills for children, APRNs are well suited to lead…
Background and Objective : Approximately 73% of children with severe neurological impairment (SNI) can experience episodes of pain and irritability often of unknown origin (PIUO). Limited research exists on how these experiences of PIUO may affect…
Objectives: 1) Fill the knowledge gaps about best practices related to collaboration with bereaved families in projects related to end-of-life practices, palliative care and parental bereavement in paediatrics. 2) Identify best practices for…
OBJECTIVE: The presence of a child afflicted with a life-threatening illness is a difficult situation for the child's siblings, especially when their own needs are left unmet. The present article describes the first three phases of research involved…
OBJECTIVES: Type B Niemann-Pick disease (NPD-B) caused by acid sphingomyelinase deficiency is a rare, autosomal recessive, lysosomal storage disorder with a broad range of disease severity. The objectives of this study were to document the natural…
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…
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 purpose of this study was to determine symptom prevalence, characteristics, and distress in children with cancer. The Memorial Symptom Assessment Scale (MSAS) 10–18, a 30-item patient-rated instrument adapted from a previously validated adult…
The field of hospice and palliative medicine has struggled to define the conditions that are appropriate for palliative care. "Life-threatening" appropriately encompasses lethal conditions and helpfully incorporates the concept of probability, which…
BACKGROUND: 8,600 children are eligible for palliative care services each day in the US, yet many pediatric residents and pediatricians do not feel comfortable providing palliative/end of life care. OBJECTIVE: To evaluate the impact of a palliative…
BACKGROUND: Caring for any child involves considerable resources, but the demands for these resources are often increased when caring for a child with a disability. These demands have implications for the psychologic and physical health of the…
OBJECTIVE: Most children enjoy healthy childhoods with little need for specialized health care services. However, some children experience difficulties in early childhood and require access to and utilization of considerable health care resources…
BACKGROUND: Effective funding models are key for implementing and sustaining critical care delivery programmes such as specialised paediatric palliative care (SPPC). In Switzerland, funding concerns have frequently been raised as primary barriers to…
In this article, I sort through some of the confusion surrounding what constitutes the controversial notion of a "good death" for children. I distinguish, first, between metaphysical and practical disagreements about the notion of a good death, and,…
Context: Loss of a child to a life-limiting condition (LLC) is 1 of the most traumatic life events for parents. Research focusing on fathers' experiences is in its infancy. Objectives: Using a meta-ethnographic approach, we systematically reviewed…
BACKGROUND:
To describe the study methods, baseline characteristics and burden of study procedures of an intervention designed to reduce family stress symptoms through early support from the palliative care team. Length of stay of ≥8days was the…
