In paediatric palliative care (PPC), parents are confronted with increasing caregiving demands. More children are cared for at home, and the need for PPC of children is lengthened due to technical and medical improvements. Therefore, a clear…
Background Heterogeneous by the underlying pathobiology and clinical presentation, childhood onset dystonia is most frequently progressive, with related disability and limitations in functions of daily living. Consequently, there is an obvious need…
Background: The benefits of early integration of palliative care (PC) in oncology have been well established yet, there remain significant barriers to PC integration, especially in the setting of pediatric hematopoietic stem cell transplant (HSCT).…
Background: Geography and population distribution present challenges to the care of children with life-limiting conditions (LLC) within Australia. Children and young people have unique needs in relation to the provision of palliative care within…
Aim To determine the experience of training in paediatric palliative medicine (PPM) among trainees, to identify how well trainees were able to meet RCPCH competences in PPM, and to explore educational opportunities desired by trainees to enhance…
Palliative care is needed for children with neurodegenerative and progressive neuromuscular diseases, inborn genetic (e.g., chromosomal disorders, deletion syndromes) or metabolic disorders, as well as for children with early brain lesions which can…
Objectives: To identify barriers to delivering patient and family centred end of life care to children with neurodegenerative disease, of which seizures and myoclonic epilepsy is a significant symptom. To highlight good practice in delivery of end of…
