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Experience of long-term use of non-invasive ventilation in motor neuron disease: an interpretative phenomenological analysis
  1. Hikari Ando1,
  2. Biswajit Chakrabarti2,
  3. Robert M Angus2,
  4. Rosanna Cousins1,
  5. Everard W Thornton3 and
  6. Carolyn A Young4
  1. 1Department of Psychology, Liverpool Hope University, Liverpool, UK
  2. 2Chest Centre, Aintree University Hospital, Liverpool, UK
  3. 3School of Psychology, University of Liverpool, Liverpool, UK
  4. 4The Walton Centre for Neurology and Neurosurgery, Liverpool, UK
  1. Correspondence to Professor Carolyn A Young, The Walton Centre NHS Foundation Trust, Lower Lane, Fazakerley, Liverpool L9 7LJ, UK; carolyn.young{at}


Objective Although non-invasive ventilation (NIV) can promote quality of life in motor neuron disease (MND), previous studies have disregarded the impact of progression of illness. This study explored how patients’ perceptions of NIV treatment evolve over time and how this was reflected in their adherence to NIV.

Methods Five patients with MND (male=4, mean age=59 years), from a bigger cohort who were prospectively followed, had multiple post-NIV semistructured interviews, covering more than 12 months, along with ventilator interaction data. The transcribed phenomenological data were analysed using qualitative methodology.

Results Three themes emerged: experience of NIV, influence on attitudes and perceived impact of NIV on prognosis. The ventilator interaction data identified regular use of NIV by four participants who each gave positive account of their experience of NIV treatment, and irregular use by one participant who at interview revealed a negative attitude to NIV treatment and in whom MND induced feelings of hopelessness.

Conclusions This exploratory study suggests that a positive coping style, adaptation and hope are key factors for psychological well-being and better adherence to NIV. More studies are needed to determine these relationships.

  • Neurological Conditions
  • Psychological Care
  • Quality of Life

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