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BACKGROUND: The British Association of Perinatal Medicine (BAPM) published a revised framework for perinatal management of extremely preterm infants (EPIs) in 2019. We aimed to assess UK neonatal professionals' interpretation of elements of this…
BACKGROUND: Losing a child tragically impacts the well-being and functioning of parents. With these effects extending beyond emotional, physical morbidity and compromising self-perceptions, appropriate, longitudinal, timely and personalised support…
OBJECTIVE: Pediatric health systems are increasingly screening caregivers for unmet social needs. However, it remains unclear how best to connect families with unmet needs to available and appropriate community resources. We aimed to explore…
Children's palliative care (CPC) is gaining attention worldwide, facilitated by the exchange of knowledge during regular specialised congresses. This article describes the developments in the Netherlands over the past 15 years. The Foundation for…
Children, who enroll in hospice, have complex mental and behavioral health (MHBH) problems. There is limited literature on patterns of these problems among children at their end of life. Using the national database of 6195 children enrolled in…
AIM: This study aimed to review the use of medications in a paediatric palliative care (PPC) population during the last two weeks of life. METHODS: This is a retrospective observational cohort study that included 50 consecutive patients who were…
BACKGROUND: Mucopolysaccharidoses (MPS) are rare inherited metabolic disorders that come under category three of life-limiting conditions. Children born with this condition show no symptoms at birth, but its effects show as a progressive disease in…
Background: Rady Children's Hospital (RCH) offers an outpatient pediatric palliative clinic that began offering telepalliative care in 2016. Objectives: This study describes demographics of parents receiving pediatric telepalliative care,…
INTRODUCTION: The number of patients with complex chronic conditions (CCC) has increased in the last 20 years or so. There is limited data as regards the prevalence of CCC in the paediatric population and its impact on hospital admissions. The main…
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…
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: Memory making is the process of creating mementos of a child with a life limiting condition, who may be at or near end of life, providing a tangible and visual connection to the child who has died. AIM: This study explored the lived…
OBJECTIVE: To determine factors associated with completion of recommended outpatient follow-up visits in children with complex chronic conditions (CCCs) following hospital discharge. METHODS: We retrospectively identified children aged 1 to 17 years…
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: 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…
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…
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…
Background: This research aimed to survey a sample of nursing students and Doctor of Pharmacy (PharmD) students in Jordan about their knowledge of pediatric palliative care (PPC) in the context of treating terminally ill children. Method(s): A…
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…
Introduction: Pediatric palliative care (PPC) benefits patients and families, while potentially creating emotional and resource-management burdens for providers. This study's purpose was to characterize the occurrence of deaths attended by PPC…
CONTEXT: Healthcare providers and parents face many challenges caring for infants at the end of life (EOL). Symptom assessment and management in critically ill infants can be especially difficult. However, the impact of the infant's EOL experience on…
Factors associated with the grief process in response to perinatal loss have been investigated. However, few studies focused on the intrapersonal factors, such as developmental and personality traits. Hence, this study aimed to investigate medical…