Il “Diario di bordo condiviso” come cura di sé nel vissuto di malattia oncologica delle persone assistite e percepito dell’utilità da parte degli operatori

Background Hematologic cancer diagnoses represents a traumatic event for patients because of its impact on both their physical as well as psychological health. The Autobiographic Narrative approach has been developed in clinical settings, to support patients in expressing and sharing their experience. The aim of this study is to analyze the experiences of patients and professionals following the introduction of the Patient Journal in a Hematology-Oncology ward in an urban Hospital in Turin (Italy). Methods Qualitative study and action-research approach. The Patient Journal Tool was created by a team of professionals and university researchers. Qualitative interviews with patients and focus groups with ward personnel were carried out in order to evaluate the Diaries' perceived benefits. Results Two main subjects emerged from the analysis of the interviews: the usefulness of the Journal as a mean to express as well as to share emotions with other patients, and the trauma of the illness. One main subject emerged from the focus groups: it’s the efficacy for the healthcare professionals in order to use the patients' experience to improve nursing care. The issue of how to introducing the Journal as a practice to the patient was analyzed. Conclusions The patient’s Journal tool in this specific experience as revealed to have two important effects. First, it offers the opportunity to share the illness experience with other patients as well as healthcare professionals. Secondly, it is a way to ease expressing emotions. It has been an opportunity for the team order to understand and improve the patients' experience in the ward. The diffusion of this tool within clinical settings needs further discussion.