Experiences of supportive care when waiting for a lung re-transplantation

Abstract

Objectives: Lung transplant patients and their next of kin share the experiences of illness but little is known in the face of a lung re-transplantation. To describe patients’ and next of kin’s experiences of supportive care while awaiting lung re-transplantation and the objective was to highlight a small group with special circumstances and needs. Methods: Using qualitative content analysis, seven adult patients and seven next of kin were consecutively selected from a regional lung transplantation centre and individually interviewed shortly after decision about lung re-transplantation. Results: The experiences of supportive care were captured in one main category: ‘once again haunted by death’ and three sub-categories: ‘when life turns and death once again snorts down your neck’, ‘the importance of information’, and ‘perceptions of support’. A complex interaction between the experience of waiting, and communication patterns, emotional states, and social support was shown. Conclusion: This study provides insights into the complex interaction between the experience of waiting for a second lung transplant and communication patterns, emotional states, social support and social roles between patients, next of kin, healthcare professionals, and the health and social welfare system. There is a need for developing supportive care programme to achieve the best possible care.