Patients and families realising their future with chronic obstructive pulmonary disease—A qualitative study

Aims and objectives To gain insight into the lived experience of learning about having chronic obstructive pulmonary disease for patients and their families. Background Chronic obstructive pulmonary disease often progresses for years. Adjustment to declining health is gradual, and the disease may have developed considerably when health care is sought and people are diagnosed. Reaching patients at early stages is necessary to delay progression of the disease. Design Interpretive phenomenology. Methods Data were collected in four family focus group interviews (N = 37) and a subsample of eight family‐dyad interviews. Patients were eight men, and 14 women aged 51–68 years. Majority of the patients (n = 19) were at GOLD grades II and III, with three at grade IV. The family members were eight men, and seven women aged 29–73 years. Data were collected between June–November 2012. Results Five, not mutually exclusive themes, revealed a long and arduous process of learning about and becoming diagnosed with chronic obstructive pulmonary disease and how unaware participants were of the imminent threat that the disease imposes on life. The themes were as follows: burden of shame and self‐blame, enclosed in addiction, living in parallel worlds, realising the existence of the disease and a cry for empathy. Conclusions Learning about and realising the existence of chronic obstructive pulmonary disease and what it entails at present time and in the future was bleak for the participants. The patients tended to put aside the thought of being a person with chronic obstructive pulmonary disease and defer actions that might halter progression of the disease, particularly to quit smoking. Relevance to clinical practice Individuals and families need support early in the disease process to realise and accept the existence of chronic obstructive pulmonary disease and particularly to deal with the challenges that nicotine addiction, shame and self‐blame present. Increased public awareness about this enormous, but hidden, health problem is necessary.