Exploring the experiences, understandings, and expectations of exacerbations of patients with COPD and their carers: an interview study.

Background: Chronic Obstructive Pulmonary Disease (COPD) exacerbations are clinically significant events that affect millions globally.

Aim: To explore patients' and carers' experiences, understandings and responses to exacerbations.

Design & Setting: Semi-structured interviews with COPD patients and carers.

Method: Interviews were conducted with a purposive sample of COPD patients and carers from four centers in England. Interviews were analysed using reflexive thematic analysis, theoretically informed by the Breathing Space concept. This research is reported in line with the Standards for Reporting Qualitative Research.

Results: Forty patient-participants were recruited: 21 female, 28 white, mean age 69 years [SD 8.1], mean COPD duration 11.3 years [SD 8.3], median 1.5 exacerbations in past year [range 0-9]. Seven carer-participants were recruited: 6 female, 6 white.Three themes were identified: 1) The language clinicians use in COPD is important; 2) Episodes of symptom worsening have profound patient and carer impact and 3) 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 novel 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.