Abstract

Summary This qualitative study adopts an interpretive approach, in order to explore patients' perspectives of the experience of living with chronic lung disease, and the impact that participating in a pulmonary rehabilitation programme has on that experience. Patients who had completed a course of rehabilitation took part in a focus group. The results were transcribed and subjected to systematic semiotic analysis to identify categories and themes. Living with chronic lung disease was found to produce an overall feeling of frustration culminating in a loss of self, through loss of self-esteem, role and identity. The stigma attached to what is perceived as a self-inflicted illness, and the anti-social nature of the symptoms, make chronic lung disease particularly isolating. The diminishing social support that results contributes to a lack of resources to combat the relentless demands of the illness. Pulmonary rehabilitation increases those resources, producing an overall effect of confidence culminating in a redefinition of self through increased self-esteem, new roles and re-established identity. In examining the benefits of rehabilitation it is evident that the delivery of a one-off, eight-week rehabilitation programme is unrealistic in its expectation of producing lifetime coping and health behaviours. This study illustrates the value of listening to patients' perspectives and the need for pulmonary rehabilitation programmes to be set up as part of a framework of lifelong support for those with chronic lung disease. Empowering people with chronic lung disease not only facilitates coping and the adoption of health behaviours, but also the strength to voice their need for ongoing support.

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