This paper explores the challenges of resolving conflicting feelings around talking with a child about their terminal prognosis. When children are left out of such conversations it is usually done with good intent, with a parent wishing to protect…
AIM: To identify the nature of services for children and young people with progressive neuromuscular disorders (NMD) provided by Children's Hospices in the UK. METHODS: A questionnaire requesting aggregate data on the number of patients with a…
BACKGROUND: Progressive neuromuscular disease in children is life limiting and these children and young people would benefit from palliative care services, but data are limited on the number and demography of these children. AIM: To describe the…
BACKGROUND: Numbers of children and young people with life-limiting conditions are rising, and increasing lifespans require young adults with life-limiting condition to transit to appropriate adult services. AIM: To describe the prevalence of…
OBJECTIVE: To determine where children die following discharge from paediatric intensive care units (PICUs) in Great Britain and to investigate if this varies by discharge to palliative care. DESIGN: National cohort of PICU admissions linked to…
BACKGROUND: Life-limiting conditions (LLCs) describe diseases with no reasonable hope of cure that will ultimately be fatal. For children with these diseases, palliative care services should be available but few data are available to estimate the…
BACKGROUND Recent research shows a rising national prevalence of Life Limiting Conditions in children identifying an escalating need for paediatric palliative care services in the UK.(1) Hospice services must ensure quality, sustainable care and…
This retrospective study analysed data for 703 children who died from 2000 to 2006 to examine where children with a broad range of progressive, life-limiting illnesses actually die when families are able to access hospital, paediatric hospice…