Browse Items (99 total)

Objectives: Many children undergo surgery or an invasive procedure during their terminal hospital admission.1 The types of procedures, patients, and the intent of the procedures has not been well defined. Understanding these details may help…

Outcomes: 1. Using a case-based approach, participants will self-report the ability to describe challenges faced by families of children with medical complexity in accessing respite care services that meet their needs, distinguish which of those…

Outcomes: 1. Utilizing a case-based approach, participants will be able to identify three different models to develop pediatric palliative care clinics. 2. Utilizing the examples and framework from this presentation, participants will be able to…

Outcomes: 1. Utilizing single-case design and graphical analytic approaches, participants will self-report the ability to investigate prospective small-sample trends in anxiety symptom trajectories, individual variation over time, and clinically…

Context: Pediatric psychologists possess unique expertise to positively impact the care provided to children with serious illness and their families. Despite increasing recognition regarding the value of psychology in palliative care, psychologists…

This review describes our institution's standardized technique as well as potential pitfalls for therapeutic steroid injections in children with symptomatic neuromuscular hip dysplasia. Symptomatic, painful neuromuscular hip dysplasia can…

Background: Although the concepts of uncertainty and anticipated loss have been explored in a variety of contexts, advances in genetic testing and life-sustaining technology rendered changes in the care of medically complex infants. The separate…

Shared decision-making (SDM) is a process in which health care professionals (HCPs) involve parents and children - when appropriate- to decide together on future treatment. These decisions are based on values that are important for the family, goals…

Objective: To compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers. Design: A qualitative case study method using semistructured…

Three percent of pregnancies are complicated by congenital anomalies. Prenatal integration of pediatric palliative care (PPC) may be hindered by non-standardized PPC referral processes. This quality improvement (QI) project aimed to improve prenatal…

Potential contributing factors (PCFs) for irritability of an unknown origin (IUO) in children with neurological conditions are identifiable through structured diagnostics. Uncertainty exists regarding the actual relevance of identified PCFs to IUO.…

To examine the parent's experiences of bonding in the care of newborns who were seriously ill during the neonatal period and did not survive. Design: Data were collected through 7 interviews with 10 parents whose infants were cared for and died in a…

The demands of caring for a child with a life-limiting condition can have a profound impact on parents' health and wellbeing. Currently, there is no standard procedure for identifying and addressing the support needs of these parents. Aim: To assess…

In Sweden, the governance of healthcare is decentralized, so PC is provided with regional or local differences in organization, level of competence, and recourses. Ongoing regional and national initiative to increase quality of pediatric palliative…

Fetal neurology is a rapidly evolving and expanding field. Discussions about diagnosis, prognosis, treatment options, and goals of care often begin in the antenatal period. However, there are inherent challenges to fetal counseling of neurological…

The article focuses on unpredictable patients diagnosis with death by neurological criteria (DNC) and mentions harm caused by overriding parent's denial in case of Maddie Reece who died of drowning. Topics discussed include team helped to understand…

Purpose Of Review: Paediatric kidney disease results in considerable burden on children and their families. Paediatric palliative care is a holistic, family-centred care approach intended to enable flourishing and address the many impediments to life…

PURPOSE: To explore parental experiences surrounding the diagnosis of their child's non-malignant life-limiting condition. DESIGN AND METHODS: A qualitative descriptive study design using single-occasion one-to-one semi-structured interviews…

Backgrounds: Many adult patients with cancer who knowthey are dying choose less intense care. High intensity careis associated with worse caregiver outcomes. Little is knownabout intensity of treatment of end-of-life care in children withcancer in…

Objectives: Rett syndrome (RS) is a neurodevelopmental disorder and the second major cause of mental retardation in females. The aim of this study was to evaluate swallowing problems of RS patients by endoscopic assessment and compile a list of…

Rett's syndrome is a progressive disorder that occurs in females and is characterized by autistic behavior, dementia, ataxia, loss of purposeful use of the hands, and seizures. Patients with Rett's syndrome have been observed to have stereotyped hand…

Introduction: Many paediatric hospitals are treating increasing numbers of children with medical complexity (CMC), diagnosed with chronic life-limiting illnesses and requiring life-sustaining home medical technology. These medically fragile children…

Background/Objectives: Despite the dramatically improved outcomes for pediatric cancer patients, cancer is the leading cause of death in Taiwan, accounting for 21.8% of death in 2014. The pediatric end-of-life (EOF) care has not been extensively…

Background/Objectives: Although Pediatric palliative care (PPC) has developed worldwide with the increasing number of children with serious illness, the concept of Pediatric palliative care is still unfamiliar in Asia. We report on Pediatric cancer…

BACKGROUND: The impact of a child s life-limiting or life-threatening illness is significant on parents who experience a great deal of emotional, physical, and spiritual upheaval. Hope has been identified as an important inner resource for parental…

Background: Emily's House Children's Hospice (EH) located in Toronto, Canada provides respite, transitional care, symptom management, and end-of-life (EoL) care. Children with serious medical conditions and their families may access any program over…

Individuals with chronic illnesses must manage long-term uncertainty as they cope with the ways the illness influences their lives. In the context of pediatric illnesses, parents must manage uncertainty during the diagnosis and treatment of their…

Background: Perinatal Hospice is a relatively new component of pediatric palliative care, which supports families who are expecting the birth of a child with life-threatening or life-limiting condition. Parents in this situation have unique needs and…

Aims & Objectives: Providing family focussed care through lessons learned from bereavement follow-up. Methods RMCH is a tertiary PICU in UK with 750 admissions annually. Families of all patients who die in PICU are offered bereavement follow-up at…

Introduction: In Italy there are approximately 12000 children affected by life-limiting illnesses, which require palliative care services. The national reality, however, confirms the lack of a proper palliative care services network to ensure relief…
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