Browse Items (6 total)

Background: Children suffering from adrenoleukodystrophy (ALD) requires life-long care. Little is known about the care needs of parents of ALD children at different stages of their disease. Purpose: The purpose of this study was to understand the…

BACKGROUND: Children with intellectual disability commonly lack access to pediatric hospice care services. Residential care may be a critical component in providing access to hospice care for children with intellectual disability.…

Background: Inpatient hospice care (IHC) for adults in Germany is used in the last weeks of life. Children, adolescents and young adults (ACA) with life-limiting diseases are entitled to 28 days/year of IHC during their lifetime. We explored various…

Decisions to initiate long-term ventilation (LTV) for children with medical complexities often involve unclear risk/benefit ratios. Although the technology may prolong a child's life, the added months to years could largely be spent in the hospital,…

Richard Griffith, Senior Lecturer in Health Law at Swansea University, reviews how the courts assist in settling disputes over the care of seriously ill babies and describes the test used to inform decisions about their treatment.
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