Abstract
BACKGROUND: Chronic obstructive pulmonary disease (COPD) exacerbations are clinically significant events that affect millions of people globally. AIM: To explore patients' and carers' experiences, understanding, and expectations of, as well as their responses to, exacerbations. DESIGN & SETTING: Semi-structured interviews conducted with patients who have COPD and their carers from four sites across England. METHOD: Interviews were conducted with a purposive sample of patients with COPD and their carers recruited from four sites in England: two in Yorkshire, one in Hampshire and one in London. Interviews were theoretically informed by the Breathing Space concept and analysed using reflexive thematic analysis. This research is reported in line with the Standards for Reporting Qualitative Research. RESULTS: Forty patient participants were recruited: 21 were female, 28 were White, with a mean age 69 years (standard deviation [SD] = 8.1 years), mean COPD duration = 11.3 years (SD = 8.3 years), median exacerbations in past year = 1.5 (range 0-9). Seven carer participants were recruited; of these, six were female and six were White. Three themes were identified: the language that clinicians use in COPD is important; episodes of symptom worsening have profound impacts on patients and carers; and patients' early experiences, including the responses of clinicians to their help-seeking, have a lasting effect on their behaviour. How patients respond to symptom worsening can be considered holistically in the context of the Breathing Space framework. Breathlessness affected all patient participants and was a key symptom that precipitated action. CONCLUSIONS: Our findings show how early help-seeking experiences shape later behaviour. Early emphasis on symptom management, preparation for exacerbations, and post-exacerbation reviews are practical ways that clinicians can support patients and carers to manage these events better. The Breathing Space concept provides a useful framework to identify needs and tailor COPD management appropriately.