‘Ventilator‐dependent’ children who spend prolonged periods of time in intensive care units when they no longer have a medical need or want to be there

• Children who are dependent on ventilators currently spend many months and in some cases years in intensive care units when they no longer have a medical need to be there. • This article presents the views of 18 young ‘ventilator‐dependent’ people (and their parents) who experienced prolonged periods of time in intensive care units and compares their experiences with published literature. • Findings strongly suggest that living in an intensive care unit is inappropriate and detrimental to health and well‐being. • Recommendations are made regarding the need for alternative placements, appropriate nursing care, the review of funding and discharge management procedures, and upholding children’s rights.