Browse Items (8 total)

Over 42,000 children die each year in the United States, including those with intellectual disability (ID). Survival is often reduced when children with intellectual disability also suffer from significant motor dysfunction, progressive congenital…

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: Over 42,000 children die each year in the United States, including many with multiple complex chronic conditions (MCCCs), but little is known about whether the presence of MCCCs influences families to utilize pediatric hospice care.…

This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers' moral distress and decrease length of stay for patients with life-threatening illnesses. We…

Background: Pain is one of the most common symptoms in children and young people (CYP) with life-limiting conditions (LLCs) which include a wide range of diagnoses including cancer. The current literature indicates that pain is not well managed,…

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