Edinburgh Napier University

  Home-based mechanical ventilation is a successful intervention for people with neuromuscular induced respiratory insufficiency. These people live with a high degree of disability, requiring care from nurses and others, and also the support of a variety of machines and equipment.

To date, the majority of research into home ventilation is from a biomedical perspective, but a small body of (largely Scandinavian) nursing research has begun to explore the complexity of people’s experiences of home ventilation. These studies focus on emotional, social and embodied aspects of home ventilation, but little attention has been paid to extending understanding beyond the ventilator, and to the sociomaterial production of home ventilation.

This paper reports on findings from a qualitative study of people with motor neurone disease or muscular dystrophy, who are living in Scotland and using mechanical ventilation at home. Semi-structured interviews were conducted with 14 patients and 5 family members, focusing on experiences of everyday life with a ventilator at home.