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Background Parents of neonates with life-threatening conditions and professionals, bear the burden of making complex decisions. Parents may not be fully involved in decision-making, and there is a paucity of evidence regarding the influence of social…
Children with medical complexity have medical fragility, chronic disease, technology dependence, and high healthcare use. Their transition to adult health care at age 18 involves medical and social elements and follows no standardized process. Our…
Background: Caregiving experiences in rare diseases (RDs) vary based on factors such as specific clinical entity, disease severity, the child's age, and available support and resources, leading to challenges that significantly impact caregivers'…
Abstract This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing…
Abstract Objective: The objective of this study was to measure the appropriateness of end-of-life care for children who died with neurologic conditions. Study design: Based on linked routinely collected databases, we conducted a population-level…
Description: Background: Pediatric palliative care is an interdisciplinary service that works to enhance the quality of life for children with serious illness. Unfortunately, the need for palliative care is difficult to ascertain and is often…
Context: Although a large percentage of children with advanced-stage cancer die at home, remarkably little information is available regarding the experience of general practitioners (GPs) with respect to providing home-based palliative care to…
OBJECTIVE: This mixed-methods study set in the West Midlands region of the UK demonstrates the effectiveness of Q methodology in examining general practitioners' (GPs') perception of their role in children's oncology palliative care. METHODS: Using…
