Original article What does it mean to live after heart transplantation? The lived experience of heart transplant recipients. A qualitative study

Abstract

Background Despite significant improvements in physical state after heart transplantation, the majority of adult patients struggle with continuous psychological distress. The aim of the study was to explore the lived experiences of adult heart transplant recipients in order to understand the inner background of these difficulties. Participants and procedure Unstructured, in-depth interviews, based on the Life Story Interview of D. P. McAdams, were performed with 8 adults, aged between 50 and 60 years, who had undergone heart transplantation a year before the research was conducted. Interviews were tape recorded and transcribed verbatim. Data were analysed using narrative methods. Results The central themes of the patients’ lived experience were the illness itself and the feeling of being very different from others and from oneself remembered in the past – the times before the transplantation. The experienced discordance between their inner world and the expectations to get better presented by other people (the family, health care workers, etc.) implies that these patients struggle with others’ lack of understanding and therefore suffer from a lack of effective psychological support. Conclusions This study shows that the life stories of patients after heart transplantation are in fact stories of their illness and the consequences it brought. It seems important to take this into consideration when constructing rehabilitation programmes for these patients in order to offer them the most effective support possible.

Keywords

• lived experience
• heart transplantation
• narratives