title: Experience of long-term use of non-invasive ventilation in motor neuron disease: an interpretative phenomenological analysis.
abstract: 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.
authors.affiliation: Department of Psychology, Liverpool Hope University, Liverpool, UK.
authors.forename: Hikari
authors.initials: H
authors.lastname: Ando
authors.forename: Biswajit
authors.initials: B
authors.lastname: Chakrabarti
authors.forename: Robert M
authors.initials: RM
authors.lastname: Angus
authors.forename: Rosanna
authors.initials: R
authors.lastname: Cousins
authors.forename: Everard W
authors.initials: EW
authors.lastname: Thornton
authors.forename: Carolyn A
authors.initials: CA
authors.lastname: Young
mesh_terms: D000223:Adaptation, Psychological; D000368:Aged; D000818:Animals; D001294:Attitude to Health; D018450:Disease Progression; D005260:Female; D006801:Humans; D007407:Interviews as Topic / Q000379:methods; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D016472:Motor Neuron Disease / Q000150:complications* / Q000523:psychology; D063087:Noninvasive Ventilation / Q000379:methods* / Q000523:psychology / Q000706:statistics & numerical data; D010166:Palliative Care / Q000379:methods* / Q000523:psychology / Q000706:statistics & numerical data; D010349:Patient Compliance / Q000523:psychology / Q000706:statistics & numerical data; D011446:Prospective Studies; D011788:Quality of Life; D020318:Rats, Long-Evans; D012131:Respiratory Insufficiency / Q000209:etiology* / Q000523:psychology / Q000628:therapy*
keywords: Neurological Conditions; Psychological Care; Quality of Life