Introduction Home non-invasive ventilation (NIV) is prescribed to patients suffering from severe chronic obstructive pulmonary disease (COPD) with chronic respiratory failure. Uncertainty exists regarding clinical efficacy and the effect on a patient’s quality of life (QOL) during long term use. This qualitative study aimed to explore the perceptions and experiences of healthcare professionals (HCPs) involved in the management of COPD patients, COPD patients themselves and the patient’s carers regarding the use of home NIV, with the aim of understanding decision making processes and improving its future use.
Method 15 HCPs including doctors, nurses, physiotherapists and physiologists, 20 COPD patients with moderate to very severe disease and 4 carers (3 patient spouses and 1 patient sibling) were recruited to participate in a semi-structured interview from a tertiary NIV hospital, a hospital providing home NIV services and the community. All interviews were transcribed verbatim and analysed using framework analysis.
Results Two major themes emerged from the interviews. The need for ‘adapting to home NIV’ was reported by all patients. This corresponds to the need for acceptance of the NIV and the ability to overcome NIV specific problems. Patients expressed that this change was forced upon them by their HCPs. It was evident from the interviews that carers also experienced this need for adaptation. Another theme that emerged from the interviews was of ‘negotiating the evidence’. HCPs reported that due to the lack of evidence and guidance available for home NIV use, they encountered difficulties when deciding which patients to start or continue on home NIV. Patients faced a dilemma of whether to accept the doctor’s ‘orders’ to use home NIV, despite distressing NIV experiences at hospital. Nevertheless improvements in the patient’s QOL, particularly in their day-to-day functions, were reported.
Conclusion This study demonstrated that patients find the use of home NIV acceptable once they have adapted to it. Recommendations include providing patients with greater technical NIV support, a better experience of NIV at hospital and improving communication between HCPs and patients to allow for greater understanding of the patient’s perspective.