Surviving vulnerability: an ethnographic study of people living with chronic obstructive pulmonary disease

Background

People with chronic obstructive pulmonary disease (COPD), particularly those in deprived areas, face poorer health outcomes and lower physical activity levels. Interviews or focus groups investigating lived experiences may underrepresent the impact of socioeconomic status and people’s environments. This study aimed to investigate the lived experience of COPD using ethnography.

Methods

People with COPD recruited from pulmonary rehabilitation services participated in home-based ethnographic observations and interviews. Fieldnotes were written immediately, and interviews transcribed verbatim. Analysis used first-generation grounded theory. Data were cross-referenced with an alternative data set of 15 interviews.

Results

Five out of nine people lived in the lowest two deciles of deprivation. Participants were observed for over 18 h (n = 9, 5M:4F, age 66–82 y) and interviewed for almost 8 h (n = 5, 2M:3F). We describe an experience of vulnerability in people with COPD stemming from dangers outside the home and complex lives and relationships, which requires curating and adapting the home to support living and well-being.

Conclusions

People living with COPD experience environmental and socioeconomically driven vulnerability. Coping behaviours necessary to stay safe can inadvertently lessen physical activity and worsen their health. There is a critical need for physical activity options that are both safe and easily accessible within home and community settings.