Illness representation and treatment beliefs in liver transplantation: an exploratory qualitative study

Summary Background The objective of this study was to gain detailed insight concerning liver transplanted patients’ representations about transplantation, graft rejection and immunosuppressive drugs to adapt the educational follow-up. Patients and methods Semi-structured interviews were conducted with 8 patients. Each interview was recorded and fully transcribed. The verbatim was first coded according to the themes of the Common Sense Model and an inductive approach for the remaining text. Results Transplantation is perceived both as a recovery and a new chronic condition. Participants feel powerless in the face of the risk of graft rejection. This risk is perceived as out of control as it is not associated with specific symptoms and external causes. The individual knowledge gained about transplantation relies on real-life experience shared between patients. Many participants feel anxiety. It responds to stress caused by immunosuppressant medication intake, routine check-ups, potential side effects and chronicity of immunodepression. Messages stressing the importance of the tacrolimus in the medication therapy are strengthened by a pre-discharge pharmaceutical consultation. Discussion and conclusions This study suggests that healthcare providers should systematically seek to determine illness representations to optimize the educational follow-up. The patient education program for liver transplanted patients should include three types of intervention: individualized education, behavioral intervention and psychological support. It should provide a support for stress management and acceptance of the new chronic condition. The involvement of a clinical pharmacist is relevant.