Browse Items (15 total)

Objective: To report a finding of a severe lack of social support with potential for serious harm during the course of a pediatric advanced care planning study. Method: A longitudinal, single-blinded, multisite randomized controlled trial, conducted…

Objective: To describe the characteristics of children and adolescentes with chronic diseases of outpatient clinics at a tertiary university hospital. Methods: A cross-sectional study was performed with 16,237 patients with chronic diseases…

Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with…

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: Case management is a subject of interest within pediatric palliative care. Detailed descriptions of the content of this type of case management are lacking. We aim to describe the contents of care provided, utilization of different…

Background: Although palliative care (PC) communication skills can be learned through trial and error, pediatric fellows have few opportunities to practice communication, and learning by doing may be harmful for families. Despite these issues and…

While availability of palliative care consultation for children with advanced heart disease increases, little is known about cardiologist attitudes towards palliative care. We sought to describe perspectives of cardiologists regarding palliative care…

Background In order to improve outcomes for acutely unwell children and young people it is essential to learn from those cases in which children deteriorate and die. In our trust there was no universal record of child deaths or deteriorations and no…

Pediatric palliative medicine/care (PPC) is an approach to care that focuses on improving the quality of life of children facing a life limiting condition (LLC). LLCs are classified by the ACT (Association for children with life-threatening or…

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…

Background: Historically, the social aspects of death, dying and bereavement have been given insufficient attention by palliative care services; this has had an adverse effect on how patients and their families experience end-of-life and bereavement.…

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…
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