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…
Investigations evaluating the effectiveness of music-based interventions as a complementary approach to symptom management and health promotion for cognitively-impaired children with life-limiting conditions and their families are needed to minimize…
OBJECTIVES: Partnership with parents is a tenet of pediatric medicine; however, initiatives to include parents in education and research have been limited. Through focus groups, we included parents at the beginning of curriculum development by asking…
Context: Most pediatric deaths occur in an intensive care unit, and treatment specific predictors of mortality could help clinicians and families make informed decisions. Objective(s): To investigate whether the intensity of vasopressor therapy for…
This study describes the minimum incidence of pediatric complex regional pain syndrome (CRPS), clinical features, and treatments recommended by pediatricians and pain clinics in Canada. Participants in the Canadian Paediatric Surveillance Program…
CONTEXT: Parents desire more opportunities for advance care planning (ACP), however, large-scale adoption of ACP for seriously ill children remains unrealized. Little is known about current approaches to ACP and strategies to circumvent existing…
PURPOSE: Our Home Care Unit (HCU) undertakes close to twenty pediatric palliative care engagements per year. We investigated the factors underlying such care by independent home health nurses. METHODS: This was a retrospective, observational,…
Little is known about the frequency and clinical course of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections in pediatric patients with severe comorbidities. In this prospective cross-sectional trial, the seroprevalence of…
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…
BACKGROUND: It is important to document the domains surrounding end-of-life (EOL) care in the electronic health record (EHR). No pediatric navigator exists for these purposes. MEASURES: Medical charts were reviewed for documentation surrounding code…
Background: Pediatric palliative cares involve the whole family, along with the interdisciplinary pediatric palliative care (PPC) team. The commitment of the PPC team and the engagement of the family at different levels can play a key role in…
Discourse about childhood chronic conditions has transitioned in the last decade from focusing primarily on broad groups of children with special health care needs to concentrating in large part on smaller groups of children with medical complexity…
BACKGROUND: Parents of dying children face unique challenge and expect compassionate support from health care providers (HCPs). This study explored the experiences of the parents and HCPs about the end-of-life care and breaking bad news and related…
Context: Advance care discussions (ACD) between health care professionals (HCPs) and parents of children with a life-limiting disease are a core element of successful pediatric advance care planning (pACP). Yet, they are perceived as a challenging…
Illness narratives have become very popular. The stories of children, however, are rarely ever studied. This paper aims to provide insight into how children, parents and physicians make sense of progressive childhood cancer. It also explores how this…
Background: Health care providers' perception of pediatric palliative care might negatively influence timely implementation. The aim of the study was to examine understanding of and attitudes towards pediatric palliative care from the perspective of…
Currently, no concrete figures on sleep disorders and sleep characteristics in children and adolescents with life-limiting conditions (LLC) and severe neurological impairment (SNI) based on pediatric palliative care professionals' assessment and…
BACKGROUND: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not…
Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care…
We describe a model of parental (or more broadly, surrogate) decision-making that includes 5 aspects of decision-making that other models simplify or omit. First, we describe problem structuring recognizing that parents often face multiple potential…
Those in hospitals and health care systems, when designing clinical programs for children with medical complexity, often talk about needing to develop and implement a system of risk stratification. In this article, we use the framework of an ethical…
Objective: Symptom burden of children with cancer appears to contribute to parent distress, but the mechanisms of this relationship are relatively unexplored. The current cross-sectional study examined rumination (i.e., repeated focus on negative…
Importance: Lack of pediatric advance care planning has been associated with poor communication, increased hospitalization, poor quality of life, and legal actions. Clinicians presume that families understand adolescents' treatment preferences for…
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…
ImportanceThe associations of spiritual and religious factors with patient-reported outcomes among adolescents with cancer are unknown.ObjectiveTo model the association of spiritual and religious constructs with patient-reported outcomes of anxiety,…
OBJECTIVES: Numbers are rising of chronically and critically ill, technology-dependent children, who are admitted to paediatric intensive care units (PICUs). An integrated model of care (IMOC), that combines paediatric critical care and primary…
Lack of guidance and regulation for authorizing medical cannabis for conditions involving the health and neurodevelopment of children is ethically problematic as it promulgates access inequities, risk-benefit inconsistencies, and inadequate consent…
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…
A preliminary evaluation to review the scope and quality of evidence surrounding transdermal buprenorphine use in the pediatric setting for non-surgical pain was conducted. Our review revealed limited data available on the use of transdermal…
Objective: To examine the roles of psychologists in delivering pediatric palliative care (PPC) services, barriers and facilitators of psychologists’ involvement in PPC, and strategies to improve psychology integration into PPC. Method: N = 131 PPC…
Key points Children with chronic debilitating illness and pain are increasingly using cannabis for medical purposes, particularly when conventional treatment options have limited benefit or substantial adverse effects. Caregivers are becoming aware…
Since its inception in 2010, the Concurrent Care for Children Provision of the Affordable Care Act has enabled seriously ill pediatric patients and their families to access comprehensive, supportive hospice services while simultaneously receiving…
INTRODUCTION: Bereavement care for parents predominantly focuses on care after child loss. However, Health Care Professionals (HCPs) feel responsible for supporting parents who are grieving losses in their child's end-of-life. Preloss care is…
Primary palliative care education and mentoring strengthens frontline clinicians' confidence and competence in pediatric palliative care, and potentially mitigates their moral distress. The project aims were to improve the knowledge, attitudes, and…
BACKGROUND: Pediatric palliative care has established benefits for children with cancer and their families. Overcoming organizational and healthcare provider barriers have been demonstrated as central for the provision of palliative care in pediatric…
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…
PURPOSE: To understand and summarize the breadth of knowledge on comfort-holding in pediatric intensive care units (PICUs). SOURCES: This scoping review was conducted using PRISMA methodology. A literature search was conducted in MEDLINE, EMBASE,…
BACKGROUND: Despite the increasing number of studies using photo-elicitation for data collection in qualitative research, there is a need to further explore its use among families of children and adolescents living with chronic illness. OBJECTIVE(S):…
