On Being Dependent on Home Mechanical Ventilation: Depictions of Patients' Experiences Over Time

Abstract

In this study, the authors describe the meanings of experiences of being dependent on a ventilator (HMV) and living at home as narrated by 13 people who had been using a ventilator via a mask or tracheostomy for half a year. The analyses revealed various movements across time toward the goal of using the ventilator successfully, and some narratives depicted suffering caused by care. The analyses also yielded different representations of embodiment. These findings were abstracted into two contrasting meanings of the experience of using HMV over time: a closing in or an opening up of the lived body, oneself, to other people and to the world. The authors illustrate this interpretation with two images. Ignorance and negative attitudes on the part of professionals working and/or managing care in the patients' homes are interpreted as causing suffering and intensifying a closed-in mode of being.