Communicating the diagnosis of a hematological neoplastic disease to patients’ minor children: a multicenter prospective study

Abstract

Abstract Background When a hematological malignancy is diagnosed, the whole family carries the burden of the disease; parents often try to protect minor children from suffering by avoiding communication about their disease. Since 2009, patients with minors at the Adult Hematology Division at San Gerardo Hospital (Monza) can take part in the “Emanuela Project”: children can visit parents and talk with psychologists and hematologists, who explain the disease through simple metaphors. Materials and Methods The EMY STUDY aimed to evaluate the impact of illness-related communication on children’s behavior, comparing Monza’s experience with other Hematology Units, where the communication is delegated to parents or psychological support. Questionnaires exploring the children’s main behaviors (school performance, appetite, sleeping patterns, attachment to family figures, and family dialogue) were administered to both sick (SP) and healthy (HP) parents. From 2017 to 2021, 32 patients were enrolled, 20 from Monza and 12 from other hospitals; 84 questionnaires were globally collected. Results In Monza’s group, no major changes in children’s behavior were observed and an open dialogue about the disease was often possible. Disease communication is considered crucial and perceived as a responsibility of parents together with a professional figure, mainly the hematologist. Patients were satisfied with “Emanuela Project,” reporting positive effects on doctor-patient relationship. Difficulties in separation were significantly higher at other hospitals (P = .019) than in Monza. While at other centers communication is considered parents’ responsibility, Monza’s patients emphasize the role of professional figures (P = .007). Differently from other hospitals, the role of the hematologist is crucial to Monza’s patients (P = .001). Conclusion Disease communication to patients’ offspring is a crucial moment in the process of care, and the hematologist can play a major role in this difficult task, with potential positive effects both on children’s well-being and on doctor-patient relationship.