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Table 1 Exemplar for child assisted by long-term ventilation

From: Key constituents for integration of care for children assisted with long-term home ventilation: a European study

Max is an 18 month old boy with a diagnosis of chronic lung disease due to bronchopulmonary dysplasia. Max was born at 26 weeks gestation weighing less than 1 kg. He had a diaphragmatic hernia, a gastrostomy tube placement at 3 months of age, and a Grade IV intraventricular haemorrhage requiring a cerebrospinal fluid ventricular shunt. Max has been ventilator dependent since he was born and is considered to have a life-threatening condition. A tracheostomy tube was placed at 6 weeks of age due to the need for ongoing ventilation. Max spent the first 3 months of his life in intensive care, followed by 4 months in a step-down/transitional care unit. At present Max has the following: impaired pulmonary function, developmental delay in fine and gross motor skills, and speech and language difficulties. His prognosis for weaning off the ventilator does not seem favourable at the moment and ideally he requires the healthcare input of the following healthcare professionals: community nurses, specialist consultants (respiratory, paediatrician, neurology), community general practitioner, pharmacist, speech and language therapist, physiotherapist, occupational therapist, social worker, dentist, home care nursing team and respite care services. He lives with his two sisters, aged 5 and 7 years, and his mother and father. He lives 120kms from the main children’s hospital and 40kms from his nearest regional hospital which has a small paediatric unit.