Technological dependency – the experience of using home ventilators and long‐term oxygen therapy: patients’ and families’ perspective

Abstract

Technological dependency is defined as a short or long-term reliance on machines and techniques to evaluate, satisfy or resolve health problems. In nursing technological dependency has been explored in the context of caring. Hitherto it has been maintained that technology and caring are contradictory, but a more prominent view is that technology and caring can and must be reconciled to provide high-quality care. This study describes patients' and families' experience of long-term home treatment with noninvasive ventilation during sleep with or without additional oxygen therapy. Considering the potential burden of undergoing this treatment the research question is: What is patients' and families' experience of being dependent on technical breathing assistance during sleep? The methodological approach draws from interpretive phenomenology and narrative analysis. Participants were six patients aged 45-70, five spouses and one daughter. Data, generated through two 1-hour semi-structured interviews with each pair of participants, were analysed into themes. Results are presented by the following narratives: (i) mixed blessing: life-saving treatment - meaningless exertion; (ii) compassion and understanding central amid use of complex machines; (iii) listening to the body; (iv) wanting to be seen as healthy; (v) dominance of technological thinking; and (vi) sustained work in maintaining the treatment. It is concluded that being dependent on technical breathing assistance during sleep, with or without oxygen, was a major life event for participants. The treatment was experienced as constraining and intrusive, particularly at the beginning, but concurrently it dramatically relieved difficulties for most participants. Regardless of its usefulness it provoked questions on purpose, indicating that the way to implement the treatment is crucial. Professionals need to pay close attention to how they introduce noninvasive ventilation technique, putting caring concern and respect for unique needs of patients and their families at the forefront.