To effectively plan and deliver complex multidisciplinary healthcare packages for long term ventilated children and their families, health professionals need to understand their needs and experiences. A search for published research in this issue revealed eight small-scale studies that reported similar themes: the prolonged stay in paediatric intensive care, discharge planning, life at home and dual role: parent and nurse. Two studies explored children's views which included not having control and not being able to live a normal life. Although there have been improvements, these children and their families still have significant unmet needs, particularly when they must remain in the unsuitable environment of the intensive care unit.