Résumé :
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A lengthy stay in a pediatric intensive care unit negatively affects a child?s wellbeing and places a heavy strain on the patients and family. In order to minimize the side-effects, a Long-term Intensive Care unit (LIVA), was opened in 1990 at the Children's Hospital, Stockholm. The children admitted to LIVA are either on non-invasive ventilation (NIV) or on tracheostomy ventilation. An early involvement of the family heightens the child?s quality of life. A discharge plan ismade soon after the admission in order to facilitate the transition from hospital to home care. Structured education and teaching programme is given to parents and home care providers, in the use of all necessary equipment and other aspects of therapy. Diagnosis (n=134) No Neuromuscular disorders 30 Congen. central hypoventilation syndrome 6 Upper airway disorders 20 Lower airway and pulmonary disorders 51 Cranio-facial malformations 12 Cerebral palsy 10 Miscellaneous 5 34 children have been decannulated. 27 children have died. 60 technology-dependent children are being care for at home.
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