Living with chronic obstructive pulmonary disease: The experience of patients and their carers.

This thesis explores the subjective experiences of patients and carers living with chronic obstructive pulmonary disease (COPD), a degenerative respiratory condition. It aims to improve understanding of the illness trajectory experienced by sufferers as they respond to the physical and psychological impact of COPD on their body, self- identity, relationships and daily living. The illness COPD is poorly recognised by health policy makers, the media, health professionals and patients alike, despite being predicted to become the third leading cause of death worldwide by 2020. Even less is known about the lived experience of COPD as perceived by the individuals themselves. A qualitative approach based on symbolic interactionism was employed to collect and analyse narrative data obtained from a purposive sample of 53 patients with moderate to severe COPD and 15 family carers. Exploration of the illness trajectory through narratives recounted by patients and carers highlighted the impact of COPD on their lives. The study identified conceptual illness phases experienced by patients as: the early days, adapting to changes in self and lifestyle, the daily struggle and living with severe COPD: fears and facing the future. Individuals revealed how they perceived their disabled body, dependency on others, and the cumulative life losses they experienced, together with feelings of vulnerability, as contributing to a sense of altered self and identity. The illness phases were reflected in the role of the relative who moved through the transitional phases from being a caring relative to a care-giving relative, caring through crisis periods, and eventually becoming a full-time carer. The study provides insights into the perceived issues and concerns of patients and carers living with the consequences of COPD. It may provide lessons for health professionals, which will contribute to more appropriate and acceptable healthcare to support patients with COPD and their carers