The continuous daily work of living with chronic obstructive pulmonary disease: An ethnographic study

Introduction: People with COPD struggle to self-manage and engage in health behaviour. Most behavioural interventions target motivation. Aim: To understand the lived experience of people with COPD using an ethnographic approach. Methods: Participants aged ≥50y diagnosed with COPD took part in home observations and a subset were interviewed. Analysis used first-generation grounded theory and findings were cross-referenced with another dataset (n = 15 interviews). Results: Nine observations (>18hs, 82–150mins) and five interviews (74–114mins) were conducted. Other data confirmed themes. People with COPD plan every element of their daily lives to monitor for potential threats such as breathlessness, falling and incontinence. This constant strategic thinking requires considerable mental effort and time. At home, people have carefully curated routines e.g. having ready meals to avoid washing up, but in unfamiliar spaces greater effort is required. To attend new appointments, they need to learn about the local geography e.g. distance from a parking bay, location of the toilets in hospital, resting places. Routines are delicately balanced and when disturbed e.g. spilling cereal on the floor before a hospital appointment, it means physical exertion, breathlessness, panic, impacting on the next 2–3 days due to fatigue. There is variability in peoples’ capacity to adapt at pace, dependent on social capital, financial resources and social support. Conclusion: People with COPD feel compelled to engage in constant risk monitoring and self-surveillance. This continuous ‘cost-benefit analysis’ limits capacity to incorporate additional activities into their routine and has strong implications for service design.