Exploring the culture of waiting: Illness narratives of lung transplant candidates

The purpose of this study was to conduct a narrative analysis that investigates the illness narratives of lung transplant candidates participating in a parent study: Symptom Management and Self-Care Monitoring in Lung Transplant Candidates. Exploring the Culture of Waiting is a two-part study that utilizes Arthur Kleinman's Explanatory Model (1988) as a conceptual framework to examine the process of communication between patients and their healthcare providers. The first part of this study explores the illness narratives of seven lung transplant candidates over a series of five interviews, conducted during a six-month period from 2006- 2007. This study examines the lives of the candidates after the lung allocations scoring system has been implemented. The second part of this study is a discourse analysis between healthcare provider and two lung transplant candidates that explores the challenges of listening and attending to their experiences of waiting. In order to perform this analysis, I use structural, thematic, dialogical performance analysis and feminist narrative inquiry. Results for part one of the study illustrate that lung transplant candidates need to talk and express their emotions of waiting from their own point-of-view. Lung transplant candidates who accrued time before the changes to the lung allocation scoring system felt cheated from getting their donor lung. Status change on this type of waiting list can be a devastating experience and social and emotional support is needed after the patient receives the news. Results for the second part of the study identified the process of partnership through dialogue that enables patients' voices to be heard. Constraining factors were also identified, such as how healthcare providers' agendas can dominate over the patients' voices in dialogue. Illness narratives of waiting need space in healthcare encounters to be told. This study provides practical insights for healthcare providers, who need to be able to listen and attend to the human condition of suffering while patients wait for a transplant.