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

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.

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.

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.

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.