Patients' experiences of information and support during the first six months after heart or lung transplantation

Abstract

Background: Heart or lung recipients are taught about a new lifestyle, risk factors, medication, food restrictions and exercise so they can take an active role and responsibility for disease management after transplantation. However, little is known about patients' experiences of information and support in these situations. Objective: The aim of the study was to illuminate how patients, six months after a heart or lung transplantation, experienced the information and support they received in connection with the transplantation. Methods: Sixteen patients were included in the study, and interviews were analysed using a qualitative content analysis method. Results: The findings are presented in three themes: Alternating between gratitude and satisfaction and resignation, Striving to follow treatment strategies and Returning to a relatively normal life. The patients expressed gratitude when their health improved markedly but resignation when complications or side effects occurred due to the lack of information and support they received. Conclusions: Healthcare professionals can make specific improvements in the information they provide to patients to increase their preparedness. Information and support should be provided regularly so as to avoid non-adherence to essential guidelines. To return to a normal life, patients need support from healthcare organizations, families, employers and society in general. These findings should be taken into account in the clinical management of transplant patients, particularly those with dependent children or failing social networks. © 2012 The European Society of Cardiology.