Getting on with life : the lived experience of four adults with cystic fibrosis : a thesis presented in partial fulfilment of the requirements for the degree of Master of Philosophy in Nursing at Massey University

Abstract

Cystic fibrosis (CF) is a progressive, life limiting disease that requires relentless life long management. Although there are a small number of adults with CF in New Zealand, the disease is significant because of the duration and intensity of the health care they require. A phenomenological hermeneutic approach has been used to explore the lived experience of a small group of adults with CF. Their experience is primarily one of getting on with life rather than dwelling on illness. Knowing that they have the disease all their lives leads to a difference in experience from people who are diagnosed with a chronic illness in adulthood. They experience a gradual realising of CF when they begin to understand the meaning of the disease, and after they have experienced significant disease related changes in their bodies. Adolescence and young adulthood are times of learning to live with CF. They learn their own limits, learn to look after themselves and manage their illness. The desire to get on with life leads people with CF to minimise illness to themselves and to others, and to reject aspects of the patient role. They see themselves as being relatively healthy much of the time. This is a different way of looking at health and illness from the traditional disease focused approach. Nurses and other health professionals can use this new understanding of living with CF to better support these people to lead meaningful and purposeful lives rather than to simply look after their disease. As a consequence of this study, an increasing move to home care with an enhanced continuity of care across of hospital and community settings by health professionals who understand the illness experience are advocated.