Living with a Machine: The Experience of the Child Who is Ventilator Dependent

Abstract

While there are reports about depression in mothers caring for ventilator-dependent children in the home, little is known about the children's own perspective of living with a machine. The purpose of this phenomenological study was to obtain the first-person perspective of 11 children, ranging in age from 7 to 12 years, who were ventilator-dependent for a minimum of eight hours each day. The children's experience was contextualized by Others, both human caregiver-others and the mechanical-other. Because of the constant presence of these Others, the child is never alone. Three interrelated themes emerged against this contextual ground: “Can/Can't,” “Normal/Different,” and “I'm Still a Person!” These children exist as an outcome of extraordinary success in health care technology. Their needs, and those of their caregivers, challenge traditional nursing thought. Mental health nurses should be an ongoing part of the care team for these children and their families.