Life with home mechanical ventilation for young men with Duchenne muscular dystrophy.

摘要

AIM: This paper is a report of a study from a patient perspective of the life experiences with home mechanical ventilation among young men with Duchenne muscular dystrophy. BACKGROUND: People with chronic respiratory failure due to neuromuscular diseases have been offered life-long ventilator support at home for more than a decade. People having this treatment are positive about it and agree on having made the right choice about receiving it. METHOD: Nineteen people with Duchenne muscular dystrophy and invasive home mechanical ventilation were interviewed in 2007. The interviews were tape-recorded, transcribed verbatim and analysed according to a method inspired by Ricoeur's theory of interpretation, which consists of: a naive reading, a structural analysis, and a critical analysis and discussion. FINDINGS: The participants described how the ventilators had saved their lives and were the best thing that had happened to them, but they had had difficulty making the decision of when to start invasive ventilation. Invasive ventilation was preferred to non-invasive ventilation by those who had experienced both. The participants wanted individualized care tailored to their needs in the home setting. Problems were described as being due to both human and technical factors, and sometimes resulted in inadequate ventilation. CONCLUSION: Society needs to discuss if it is a basic human right to be able to breathe, and whether people with Duchenne muscular dystrophy therefore have the right to invasive home mechanical ventilation. Healthcare professionals need to guide ventilator-users in decision-making about when to receive invasive home mechanical ventilation.