School of Health Professions and Rehabilitation Sciences, University of Southampton

Chronic Obstructive Pulmonary Disease (COPD) is a chronic respiratory disease that gives rise to symptoms of breathlessness, chronic fatigue and cough. The impact of COPD on patients’ quality of life has been widely acknowledged, yet it appears that little has been published regarding what really matters to these patients.

A first, exploratory phase of this research aimed to explore the issues that matter most to people with COPD, using a qualitative approach. Six patients were interviewed. The main findings informed the development of the second phase, which explored the nature and experience of activity for people living with COPD, and how attending a pulmonary rehabilitation (PR) programme affected this experience.

This qualitative, interview based research employed a Grounded Theory approach throughout. In the second phase, 18 patients with COPD (59 to 84 years old; 12 men and six women; COPD severity ‘moderate’ to ‘very severe’) were recruited from a) a PR programmes and b) self help groups for people living with chronic respiratory conditions. Interviews were tape-recorded and transcribed. Data were analysed to derive themes of importance to participants.

‘Activity’ and ‘social participation’ were the main themes identified as important to people with COPD during the first phase. During the second phase, the two main themes that captured participants’ experience of activity were ‘stagnation’ - as linked to being confined to indoors; and ‘movement’ - associated with being outdoors. Stagnation affected participants on a physical and psychosocial level and affected their perception of themselves and their breathing. Movement, including physical and psychosocial aspects and perceptions of movement, was perceived as having a positive effect, enabling people to escape feelings of stagnation. Fresh air was identified as the single most important aspect of spending time outdoors and was associated with a sense of freedom from their usual experience of having tight airways, having breathing difficulties and being 'shut in'. PR positively affected participants’ perception of their breathlessness, and their experience of physical and social activities.

This thesis identified the environment as an important context influencing the experience of COPD and activity. The stagnation-movement theory explains the experience of activity within its environmental context and how this experience may be affected on a physical, social and psychological level. PR supported the stagnation-movement model by impacting on participants’ perception of their breathlessness and therefore positively influencing their experience of physical and social activities. The findings of this research suggest a link between the environment and the experience of illness and activity, and indicate that health care professionals need to consider individuals’ experiences of activity in order to provide care that is beneficial to COPD patients on a psychological as well as a functional level.