Living with severe physical impairment, Duchenne's muscular dystrophy and home mechanical ventilation

Int J Qual Stud Health Well-being. 2010 Aug 2;5(3). doi: 10.3402/qhw.v5i3.5388.


Aim: To study life-experiences of people living with Duchenne's muscular dystrophy (DMD), home mechanical ventilation (HMV) and physical impairment.

Background: Since the introduction of invasive HMV in the late 1980s people with DMD in Denmark live longer and have the experience of adulthood and a high degree of physical dependency.

Method: Nineteen patients with DMD and invasive HMV were interviewed in 2007. The interviews were recorded, transcribed verbatim and analysed according to a method inspired by Ricoeur's theory of interpretation.

Findings: HMV not only extended the participants lifespan, it also gave them the capacity to live an active life. They were totally dependent in everyday living, but in spite of this, they did not see themselves as physically impaired. They realised that there were activities that were physically impossible, but they considered themselves to be just the same person they had always been. This dependency was described as "independent dependency".

Conclusion: The lived-experience of physical impairment is found to be "independent dependency" in an active life. To solve problems with loneliness, society needs to work with prejudice and misunderstanding and for better physical accessibility to enable full participation.

Keywords: Duchenne muscular dystrophy; Physical impairment; Ricoeur; home mechanical ventilation; respiratory failure.