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Introduction: The Serious Illness Conversation Guide-Pediatrics (SICG-Peds) is a validated tool and training program that increases clinicians’ confidence in leading complex conversations with seriously ill pediatric patients and their families. We…
Extreme prematurity is associated with significant risk of mortality and morbidities. Neonatal follow-up assesses health outcomes of babies as they grow older to improve care and contribute to research and quality improvement initiatives. Recent…
Objectives: Children with life-limiting conditions (LLC) are exposed to frequent hospitalizations, with their parents as indispensable supporters, even in inpatient care. Data on the experiences of parents in a hospital setting are scarce. This study…
Objectives: Infant organ donation is rare but when it does occur, infants are more commonly eligible for donation after circulatory death (DCD) than donation after neurological death. The aims of this scoping review were to identify: 1) existing…
Children with medical complexity (CMC) and life-limiting conditions (LLCs) have a high utilization of healthcare resources. This study aims to assess the impact of CMC and LLC on hospitalization in the Basque Public Health System (BPHS) and to…
Background The international HU-CI project advocates eight strategic strands for the humanization of intensive care units. Despite of adult ICUs have received attention to promote humanization of care, in the paediatric context, the humanization of…
Background: Children receiving palliative care often suffer from refractory neurological symptoms. In recent years, there has been a growing interest in the use of alpha-2 agonists as a second- or third-line therapy for severe dystonia and…
Background Being admitted to a paediatric intensive care unit is a stressful situation for the minor and their family, causing emotional alterations that generate changes in psychological, physical and social aspects, as well as on how to take care…
Abstract Some life-limiting conditions associated with significant neurodevelopmental impairment, such as trisomy 13/18, have historically been considered lethal, thus medical or surgical treatments would be inappropriate. Evolving literature has…
Background: Survival rates and clinical approach to periviable infants are rapidly evolving at certain centres, but there remains variation in definition, approach and management of these infants worldwide. This review aims to narratively review and…
Introduction: Advances in neonatal care have resulted in improved survival rates for periviable infants (22 + 0–23 + 6 weeks) with increasing numbers being admitted to neonatal intensive care units across the United Kingdom. Qualitative research…
Introduction: Volunteers play a significant role in enhancing the quality of palliative care. Training is necessary to deliver voluntary community care that assists healthcare professionals, benefits families and eradicates inequities for underserved…
Meaning-making is a crucial coping strategy for parents following a traumatic loss of their child and has been associated with better adjustment for parents dealing with such losses. However, meaning-making is often underexplored. The present study…
Background Adult specialist palliative care professionals have played a key role in the care of children with palliative care needs in the community. However, there is little known on their perceived level of preparedness or training in providing…
BackgroundImplicit bias pervades health care, decreases quality of care, and disproportionately affects health outcomes for persons of color. Little is known about the use of biased language in the care of seriously ill children as documented in the…
Objectives: Integration of pediatric palliative care (PPC) and pediatric critical care medicine (PCCM) is essential in providing high-quality patient care. To date, no standardized or recommended framework for educating PCCM fellowship trainees in…
Objectives Adolescents with life-limiting conditions are distinct from children or older adults in their palliative needs and developmental stage, yet, there is limited literature addressing this population. Our aim was to describe the…
Perinatal palliative care (PnPC) is a relatively new branch of pediatric palliative care (PPC), which focuses on providing holistic care in the antenatal, delivery, and neonatal settings. In this paper, we address previously unexplored justice-based…
Introduction According to several studies, nurses feel that they are not prepared to face the death of a patient, especially when the patient is paediatric. Objective To describe the level of coping of nurses in various departments of a paediatric…
Purpose From September 2014 to April 2016, the project “Let me be” was carried out by Gajusz Foundation. We aimed to inform clinical practice by describing a model of perinatal palliative care and to determine who is referred for care, what happens…
Purpose: This study explored current pediatric palliative care (PPC) in South Korea and suggests future directions based on the perspectives of full-time PPC workers. Methods: A mixed-methods secondary analysis was conducted using survey data from…
Abstract Withholding or starting, withdrawing or continuing, high-technology interventions available to extremely premature newborns is a fundamental challenge in obstetrics and neonatology. Attempting to save an infant's life is a judgment fraught…
Social workers are frontline professionals providing psychosocial care to families when children are receiving end-of-life care. To explore the social work role in this context, data was collected from a cohort of 12 social workers employed at a…
Though the idea of assent emerged in the 1980s and adaptation in paediatrics has become more common practice, adolescent end-of-life care adds a multi-faceted layer of increased complexity to the assent process. In the current era of moral pluralism,…
The nurse practitioner plays an important and unique role in delivery of high-quality pediatric palliative care. The combination of their nursing roots, advanced education, and training makes the pediatric nurse practitioner well-suited to excel in…
Background: Fathers of children with a life-limiting condition are underrepresented in the literature. We know little about their experiences of caregiving, the impact of this on their health and their support needs. Aim: To explore the health and…
With advances in treatment options for severe congenital heart disease, there is a growing population of children and adults living with advanced heart disease, many of whom experience significant long-term comorbidities and uncertain disease…
Aim To explore why parents consent to or decline organ donation after their child's death and identify the factors that influence their decision-making. Design Mixed-methods analysis of routinely collected quantitative and qualitative data from 594…
Objectives Studies addressing the complexity of pediatric palliative care are highly limited. The aim of this qualitative study was to identify the criteria of this complexity and, more broadly, to provide insight into this issue by analyzing the…
Objectives/Goals: The purpose of this study was to document the publicly available literature, measurement tools, secondary data, and expert perspective on the intersectional care gaps and disparities of children with palliative needs in foster care.…
Background The human experience comprises four interconnected dimensions: physical, psychological, social and spiritual. Our spirituality is evidenced in the need to make sense of and find meaning, to feel our lives have purpose, to feel we matter…
Background: Nursing documentation within electronic medical records (EMRs) is crucial in paediatric palliative care. Methods: A scoping review was conducted to assess the state of nursing documentation in EMRs following Arksey and O’Malley's…
What does it mean to share an experience of losing a child? Not solely to put such an experience into words, but also to speak of it to others who may share their own experiences of loss? What is shared in such moments of sharing? Here, we present a…
Background Bereaved parents are at higher risk of poor mental and physical health outcomes than people bereaved under other circumstances. These challenges are exacerbated by the continued effects on parents’ working lives and the financial strain of…
Aims To explore the experience of families who have suffered the loss of a child in an Intensive Care Unit. This article specifically describes the experience of the “Good Death”, a concept that has emerged from the discourse of the informants.…
As abortion care restrictions increase, a growing population is continuing pregnancies complicated by life-limiting fetal conditions, making it more critical than ever to evaluate the state of the evidence in perinatal palliative care (PPC).…
Background: Children with life-threatening and life-limiting conditions and their families are confronted with many uncertainties, incremental losses, and difficult decisions. Attentiveness to psychosocial care, including psychological, social, and…
Background: Despite evidence on the benefits for including children in their own (palliative) care, studies show that children are not sufficiently involved nor are their preferences sufficiently elicited in a developmentally appropriate manner. The…
Context: High-quality pediatric palliative care is best achieved through a comprehensive interdisciplinary effort that actively involves the family and engages resources within the community. Community-based palliative care specifically strives to…
Background: Clinical teams face many barriers to communicating with the parents/caregivers of patients experiencing an acute decline. Outside of these time-critical situations, clinicians often can iteratively assess and cultivate prognostic…
