Chronic Obstructive Pulmonary Disease (COPD) patient experiences of COPD and pulmonary rehabilitation: an applied phenomenological study

Abstract

Attendance at Pulmonary Rehabilitation (PR) in the UK is sub-optimal and reasons for this have been explored. However, Chronic Obstructive Pulmonary Disease (COPD) patient experiences have rarely been explored longitudinally through PR regardless of patient participation. Therefore, understanding sub-optimal attendance remains limited for the broad population who are referred. Furthermore, limited Primary Care PR research has been performed, where many programmes are run in the UK. This research aimed to explore COPD patient experiences before and after PR, whether they completed, did not attend, or dropped out of PR. Twenty five participants with COPD (14 males, 11 females) were recruited from two Primary Care Trusts in the UK. These 25 participants were interviewed before PR. Fifteen of the 25 participants were interviewed again after PR regardless of attendance or completion status. Data were collected during semi-structured interviews using phenomenological research methodology. In the pre-programme interviews, participants experienced uncertainty living with COPD in their past, present and future. Uncertainty manifested itself in participants' experience of panic. However, participants compared their condition with others positively. Participants were uncertain about what to expect from PR and the causes and pathophysiology of their COPD. Prior to PR participation, participants were brought closer to the experience of dying, through their breathlessness. The experience of uncertainty reduced following PR programme completion. Non-completers seemed angry with their care, less able to cope with comorbidities or wished to remain naïve regarding COPD. Pulmonary Rehabilitation seemed to enable participant completers to push their perception of being close to dying further into their future. This appeared to strengthen hope and enable a positive attitude to develop. The importance of social comparison in PR and how to manage patients who wish to remain ‘in the dark’ requires further research