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Abstract
Introduction Non-invasive ventilation (NIV) is an effective treatment for acute type 2 respiratory failure, often avoiding intubation and improving mortality. However many patients struggle to tolerate NIV. There is limited understanding of patients’ or their relatives/carers subjective experience of NIV. As good patient experience is increasingly recognised to reflect high-quality care we conducted an in-depth experience-based questionnaire aiming to identify key concerns of patients, and their relatives/carers, treated with NIV, which would reflect potential targets for service improvement.
Method In a qualitative, exploratory study patients started acutely on NIV were identified. Patients and relatives/carers completed a questionnaire with both free text and Likert style responses. Data were analysed using thematic analysis.
Results 20 questionnaires were completed (15 patients, 5 relatives). From the responses we identified key themes. Emotional responses were positive and negative. Positively - all patients and carers felt that NIV had helped. However whilst all carers would wish their relatives to have NIV again, 2 of the patients felt they would not. Negative emotional responses were related to fear and anxiety of NIV. A significant theme emerged surrounding the physical discomfort of NIV. Descriptions of NIV are represented in Figure 1. Patients and relatives identified that negative feelings were partly due to lack of understanding. Only 9 patients felt that they were involved in decision making and only 6 felt that NIV had been adequately explained. 11 patients and all relatives felt that written information would be beneficial. Finally a further theme described different levels of competence between staff and across wards and the varying degrees of feeling safe that this created.
Conclusion This study enabled us to identify key areas to address when considering quality improvement for NIV service delivery. Whilst our sample size is small, and biassed towards survivors, the themes are strong and add significantly to the available literature. Some aspects of NIV are non-modifiable however focus on patient involvement and experience to provide high-quality care may facilitate improved experience and outcomes. We aim to address these points by expanding on this work in an experience-based co-designed project, funded by CLAHRC.
Word-cloud to represent patient experience of NIV (n = 15 patients, 5 relatives). (Size of word is proportional to the frequency of use of word in response to being asked to describe NIV, Black association with negative experience grey with positive).