Browse Items (273 total)

We obtained information about the behavioral, psychiatric, and functional status of 26 children (13 males, 13 females) with juvenile neuronal ceroid lipofuscinosis (JNCL; mean age 12y 3mo [SD 3y 4mo]; range 6y 9mo to 18y 8mo). Twenty-five children…

BACKGROUND: Decision-making in initiating life-sustaining health technology is complex and often conducted at time-critical junctures in clinical care. Many of these decisions have profound, often irreversible, consequences for the child and family,…

BACKGROUND: Characteristics of critical Severe Acute Respiratory Syndrome-related Coronavirus 2 (SARS-CoV-2) infection in children is not well understood. This study described the clinical characteristics of children admitted to intensive care units…

Few Korean hospitals had experience in pediatric palliative care. Since the beginning of the national palliative care project, interest in pediatric palliative care has gradually increased, but the establishment of professional palliative care is…

BACKGROUND: Globally, many infants and children are diagnosed with illnesses that impose limitations on their well-being and life course trajectory. Children's care becomes the central focus of family life. Inadequate support for parents is…

BACKGROUND: Data on the end-of-life phase of children receiving palliative care are limited. The purpose of this study is to investigate the spectrum of symptoms of terminally ill children, adolescents, and young adults, depending on their underlying…

Children with End Stage Lung Disease (ESLD) are part of the growing population of individuals with life-limiting conditions of childhood. These patients present with a diverse set of pulmonary, cardiovascular, neuromuscular, and developmental…

BACKGROUND: One of the main challenges for paediatric palliative care (PPC) is the management of concomitant, different and severe symptoms that frequently affect the quality of life of PPC patients and are often refractory to commonly used…

Background: Children with severe neurological impairment (SNI) commonly receive care in the hospital setting necessitating frequent interactions with clinicians. Yet, parents report that clinicians often have a limited understanding of their child's…

AIM: To retrospectively explore the perspectives of parents of children with severe neurological impairment (SNI), such as those with severe cerebral palsy, epilepsy syndromes, and structural brain differences, on clinician counseling regarding home…

CONTEXT: Parents of children with severe neurologic impairment (SNI) often face high-stakes medical decisions when their child is hospitalized. These decisions involve technology/surgery, goals of care/advance care planning, or transitions of care.…

BACKGROUND: Pediatric palliative care (PPC) is characterized by years of multisectoral and multi-professional care. Sharing information between PPC professionals is, therefore, essential for quality care. The evidence shows that electronic…

BACKGROUND: Pediatric palliative care (PPC) patients experience years of multisectoral and professional care. An electronic cross-facility health record (ECHR) system can support the immediate exchange of information among PPC professionals. Based on…

In pediatric settings, the concept of hope is frequently positioned as a fundamental aspect of care and at odds with the possibility and proximity of death. This arguably fosters silence about death and dying in childhood despite evidence indicating…

Advance care planning enables parents to discuss their goal and wishes for the future treatment and care of their life-limited or life-threatened child. Whilst research has identified the barriers clinicians face to initiate such discussions, the…

INTRODUCTION: Little is known about the requests for and recommendations from inpatient pediatric palliative care (PPC) consults and whether they differ by patient location (ward vs. intensive care unit) or patient type (new vs. established with…

BACKGROUND AND OBJECTIVE: Children with inherited metabolic diseases often require complex and highly specialized care. Patient and family-centered care can improve health outcomes that are important to families. This study aimed to examine…

This study elicited the experiences of nurses caring for children with life-limiting conditions and their family, within a community based intellectual disability service. A qualitative descriptive research approach was adopted where purposeful…

BACKGROUND: Children with a life-limiting condition often require extensive and complex care, much of which is provided by their parents at home. There is a growing body of research that aims to understand the experiences of these parents, but the…

Background Autism spectrum disorder (ASD) is a neurodevelopmental condition estimated to affect 1 in 66 children in Canada and 1 in 270 individuals worldwide. As effective therapies for the management of ASD core and associated symptoms are limited,…

PURPOSE: The purpose of this qualitative descriptive study was to explore the hope experiences of parents of children diagnosed with complex chronic conditions (CCCs) who received therapeutic letters. DESIGN AND METHODS: A purposive sample of 10…

Objective To assess trends in place of death for children with a life-limiting condition and the factors associated with death at home or hospice rather than hospital. Design Observational cohort study using linked routinely collected data. Setting…

Purpose: Deep brain stimulation is now widely accepted as an effective treatment for children with primary generalized dystonia. More variable results are reported in secondary dystonias and its efficacy in this heterogeneous group has not been fully…

The importance of palliative care for children facing life threatening illness and their families is now widely acknowledged as an essential part of care, which should be available to all children and families, throughout the child's illness and at…

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…

Context: Children with life-limiting diseases suffer from gastrointestinal (GI) symptoms. Since the introduction of specialized palliative home care (SPHC) in Germany, it is possible to care for these children at home. In phase 1 of care the aim is…

Being a parent of a child with spinal muscular atrophy (SMA), a disease that causes progressive muscle weakness, involves a range of challenges. The purpose of this study was to explore what advice parents of children with severe SMA, in absence of…

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…

CONTEXT: Children with medical complexity (CMC) have multiple significant chronic health conditions that result in functional limitations and high health care utilization. The population of CMC is increasing and parent decision-making for this…

The aim of this study was to examine the impact of end-of-life (EoL) circumstances on grief and internalizing symptoms among bereaved siblings. Bereaved families (N = 88) were recruited from three sites 3-12 months (M = 11.57, SD = 3.48) after their…

BACKGROUND: Electronic medical records (EMRs) offer a promising approach to mapping and documenting the complex information gathered in paediatric palliative care (PPC). However, if they are not well developed, poorly implemented EMRs have unintended…

BACKGROUND: Electronic medical records (EMRs) play a key role in improving documentation and quality of care in paediatric palliative care (PPC). Inadequate EMR design can cause incorrect prescription and administration of medications. Due to the…

BACKGROUND: Children with non-malignant life-limiting conditions (NMLLCs) constitute the largest proportion of children requiring palliative care. In part, due to technological advances, growing numbers of such children are experiencing improved…

BACKGROUND: Tuberous sclerosis complex is a multisystem disorder that includes a range of tuberous sclerosis associated neuropsychiatric disorders (TAND). The lifetime prevalence rates of TAND are very high; yet surveys suggest that the majority of…

Work-related stress in nursing is widely acknowledged. This integrative review was undertaken to systematically identify and appraise the causes of work-related stress experienced by registered nurses working with children at home. Ten studies were…

CONTEXT: Since pediatric palliative care (PPC) aims to improve the health-related quality of life (HRQoL) of children with life-limiting conditions (LLC), assessment of their HRQoL and identification of its determinants is crucial. OBJECTIVES: To…

OBJECTIVE: Pediatric chronic pain evaluation includes self-reports and/or caregiver proxy-reports across biopsychosocial domains. Limited data exist on the effects of caregiver-child discrepancies in pediatric pain assessment. In children with…

Children and youth with medical complexity are a diverse group with uncommon diagnoses, a spectrum of needs and varying access to supports. Although this population represents a small proportion of all children, their unique needs lead to substantial…

BACKGROUND: Currently, to the best of our knowledge, no findings exist concerning the needs of professionals in specialized pediatric palliative care (PPC) regarding electronic health records (EHRs). Several studies have highlighted benefits…
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