"Me and ' that' machine": the lived experiences of people with neuromuscular disorders using non-invasive ventilation.

Meredith A Perry,Matthew Jenkins,Bernadette Jones, Jarrod Bowick, Hannah Shaw, Emma Robinson, Morgan Rowan, Kate Spencer,Alister Neill,Tristram Ingham

Disability and rehabilitation(2022)

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摘要
The findings highlight the broad ranging positive and negative effects that may occur for people with NMD when using this important therapy. Ongoing non-judgemental support and empathy are required from health professionals as the use of NIV challenged concepts such as 'living life well' for people with NMD. IMPLICATIONS FOR REHABILITATIONNeuromuscular disorders may result in respiratory weakness requiring non-invasive ventilation (NIV).When prescribed early, NIV can results in fewer hospital admissions, a lower mortality rate and improved quality of life.The relationship of people with NMD with their NIV machine is complex and impacts on and requires adjustment to their identity.NIV users acknowledged that NIV provided hope but simultaneously recognised the precariousness of NIV on their life.In order to better support people with NMD healthcare professionals need to better understand how the physical, psychological and social implications of NIV affect an individual's life.
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关键词
Lived experience,identity,interpretive phenomenological analysis,neuromuscular disorders,non-invasive ventilation,qualitative
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