RT Journal Article
SR Electronic
T1 Experience of long-term use of non-invasive ventilation in motor neuron disease: an interpretative phenomenological analysis
JF BMJ Supportive & Palliative Care
JO BMJ Support Palliat Care
FD British Medical Journal Publishing Group
SP 50
OP 56
DO 10.1136/bmjspcare-2013-000494
VO 4
IS 1
A1 Hikari Ando
A1 Biswajit Chakrabarti
A1 Robert M Angus
A1 Rosanna Cousins
A1 Everard W Thornton
A1 Carolyn A Young
YR 2014
UL http://spcare.bmj.com/content/4/1/50.abstract
AB 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.