Adapting to domiciliary non-invasive ventilation in chronic obstructive pulmonary disease: a qualitative interview study

BACKGROUND: Domiciliary non-invasive ventilation may be used in palliative care of patients with chronic obstructive pulmonary disease, although there is uncertainty regarding effect on quality of life.

AIM: Explore experiences of domiciliary non-invasive ventilation in chronic obstructive pulmonary disease, to understand decision-making processes and improve future palliative care.

DESIGN: Qualitative interview study, based on constructivist grounded theory, and using the framework method for data management and analysis.

PARTICIPANTS: 20 chronic obstructive pulmonary disease patients, 4 carers and 15 healthcare professionals.

RESULTS: Most patients had very severe chronic obstructive pulmonary disease. Data were categorised into four domains - clinical, technical, socio-economic and experiential. Healthcare professionals felt uncertain regarding clinical evidence, emphasising social support and tolerance as deciding factors in non-invasive ventilation use. Conversely, patients reported symptomatic benefit, which generally outweighed negative experiences and led to continued use. Healthcare professionals felt that patients chose to be on non-invasive ventilation; however, most patients felt that they had no choice as healthcare professionals recommended non-invasive ventilation or their poor health mandated it.

CONCLUSIONS: Our study identifies 'adapting to non-invasive ventilation' as the central process enabling long-term use in palliative care, although the way in which this is approached by healthcare professionals and patients does not always converge. We present ideas emerging from the data on potential interventions to improve patient experience and adaptation.