During the last decade lung transplantation has become an option for those with end-stage respiratory disease, including Cystic Fibrosis. However, there appears to have been very little written about the experiences of those who
are on the lung transplant trajectory. Most of the previous psychosocial research in this field has focused on Quality of Life issues, functional outcome, and psychopathology. Moreover, most of the research uses quantitative methodology. Although there are a few descriptive papers in the literature, there do not appear to be any studies published that have used a rigorous qualitative methodology.
Therefore, the aim of this study was to use Grounded Theory to explore the experiences of adult lung transplant candidates and recipients with Cystic Fibrosis. Fifteen semi-structured interviews were conducted. One participant
was interviewed both before and after transplantation and one person had been accepted onto the active transplant list but had declined this offer.
Data analysis distinguished one core category, subsuming 11 conceptual categories and 31 sub-categories. The analysis has been conceptualised by way of the paradigm model (Strauss & Corbin, 1998), which is a method of incorporating both structure and process in a meaningful way.
The core category "Coping with living and dying" was identified as the central phenomenon which all the other categories either impacted upon or were
directed at managing. Findings are discussed in relation to already established models of coping. Four other conceptual categories which appeared to be of most consequence to participants have also been considered, with reference to the literature from more diverse fields, such as oncology. These conceptual categories are: "Perception of health status," "Closeness of death," "Awareness of time, " and "Medical management. " In addition, the psychosocial stages of the lung transplant trajectory, as outlined by Worby and Smith (1997), have been expanded using data derived from the analysis. Implications for future research
and clinical interventions are also discussed.