Résumé :
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Background : Persons with chronic respiratory failure due to neuromuscular disease (NMD) have been offered life-long ventilator support at home in Denmark since 1990. As a patient group they are small but increasing in size and some individuals have nearly 20 years experience with HMV. Aim : To study life-experiences of living with home mechanical ventilation (HMV) and Duchenne muscular dystrophy (DMD). Method : Nineteen persons with DMD and invasive HMV were interviewed. The interviews were 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. Findings : The participants described how the ventilator saved their lives and were the best thing that had happened to them, but they difficulty making the decision of when to start invasive HMV. Invasive ventilation was preferred to noninvasive ventilation by those who had experienced both. The participants wanted individualised care tailored to their needs in the home setting and failure to achieve this was described as being due to both human and technical factors, and resulted in inadequate ventilation. Adapting one's life to the ventilator was another important issue, where the ventilator was described either as being a part of the person and his wheelchair or as a part of the person's equipment. Conclusion : The findings indicate that invasive ventilation is a positive experience for the participants. It not only extended their lives, but also gave themcapacity to enjoy life; however they needed help in decision-making regarding when to start HMV.
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