Communicating the diagnosis of a hematological neoplastic disease to patients' minor children: a multicenter
Beatrice Manghisi1,2, Lorenza Borin1, Maria Rosaria Monaco1
1Hematology Division, Fondazione IRCCS San Gerardo dei Tintori, Monza, Italy.
Insights
The Emanuela Project facilitates open communication about hematological malignancies in children, involving healthcare professionals. This approach positively impacts children's well-being and the doctor-patient relationship, reducing separation difficulties.
Area of Science:
- Pediatric Hematology
- Child Psychology
- Family Medicine
Background:
- Hematological malignancies impact the entire family, often leading parents to shield children from difficult conversations.
- The Emanuela Project at San Gerardo Hospital (Monza) engages children with parents undergoing cancer treatment.
- This project utilizes psychologists and hematologists to explain the disease using simple metaphors.
Purpose of the Study:
- To evaluate the impact of illness-related communication on children's behavior.
- To compare the Emanuela Project's outcomes with other Hematology Units where communication is parent-led or relies on psychological support.
- To assess children's behavioral changes, including school performance, appetite, sleep, attachment, and family dialogue.
Main Methods:
- The EMY STUDY enrolled 32 patients (20 from Monza, 12 from other hospitals) between 2017 and 2021.
- Questionnaires were administered to sick and healthy parents to explore children's behaviors.
- Data collection involved 84 questionnaires globally.
Main Results:
- Monza's group showed no major behavioral changes in children, with open dialogue facilitated.
- Disease communication is viewed as a shared responsibility between parents and professionals, particularly hematologists.
- Patients reported satisfaction with the Emanuela Project, noting positive effects on the doctor-patient relationship and fewer separation difficulties compared to other centers.
Conclusions:
- Open communication about illness in children is vital for care.
- Hematologists can play a key role in facilitating this communication, improving children's well-being.
- The Emanuela Project demonstrates the benefits of professional involvement in disease communication for pediatric patients and their families.
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.
