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Objectives: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual…
OBJECTIVES: (1) To operationalise our previously published definition of neonatal serious illness by applying it to a patient cohort and (2) to evaluate timing of palliative care consultation, goals of care discussions and meeting serious illness…
Background: It is essential that the physical environments in which inpatient palliative care is provided support the needs of patients and the facilitate the multidimensional delivery of palliative care. This review aims to identify the features and…
OBJECTIVE: This scoping review aimed to: 1) identify parent-reported experience measures (PaREMs) for parents of children with serious illnesses from peer-reviewed literature, 2) map the types of care experience being evaluated in PaREMs, 3) identify…
Although frequently overshadowed by adult mortality rates and bereavement care needs, the death of a child can significantly jeopardize the physical, psychosocial, and emotional health of surviving parents, caregivers, and family members.…
Background: Children with life-limiting conditions receive specialist paediatric care in childhood, but the transition to adult care during adolescence. There are concerns about transition, including a lack of continuity in care and that it may lead…
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…
BACKGROUND: Health service planning in paediatric palliative care is complex, with the diverse geographical and demographic characteristics adding to the challenge of developing services across different nations. Accurate and reliable data are…
CONTEXT: Supporting spiritual needs is a well-established aspect of palliative care, but no data exist regarding how physicians engage with patients and families around spirituality during care conferences in paediatric intensive care units (PICU).…
Under increasing pressure to contain costs, hospitals are challenged to provide high-quality care to an increasingly complex group of children with life-threatening illness (LTI) that often worsen over time. Pediatric palliative care is an essential…
BACKGROUND: Pediatric palliative care (PPC) programs facilitate the provision of comprehensive care to seriously ill children. Over the past 10 years many such programs have been initiated by children’s hospitals, but little is known about their…
Objectives: To measure the level of moral distress in PICU and neonatal ICU health practitioners, and to describe the relationship of moral distress with demographic factors, burnout, and uncertainty. Design: Cross-sectional survey. Setting: A large…