Adolescents with cancer on privacy: Fact-finding survey on the need for confidentiality and space.

BACKGROUND: Cancer diagnosis and related treatment can limit young patients' privacy. Their need for private physical and psychological spaces can be impeded by limited freedom, e.g., sharing hospital rooms with others and exposing their body to their parents and doctors. METHODS: We conducted a survey among young patients of our center to investigate how their perception of privacy changed after being diagnosed with cancer and their need for hospital dedicated physical spaces and time for patients to enjoy their privacy. A questionnaire with 16 items was developed by the staff involving psychologists and physicians. The relevance of changes before and after the cancer diagnosis was assessed by calculating two scores indicating the situation before and after diagnosis for each answer, as well as a delta score. RESULTS: Between May and June 2020, the questionnaire was completed by 60 patients aged 16-24 years. The median delta scores describing the changes before and after diagnosis were -8 points for perception of privacy, indicating a significant decrement of the level of privacy perceived. A major issue was the constant presence of parents being perceived as intrusive. Concerning hospital dedicated physical spaces and time for patients to enjoy their privacy, respondents requested dedicated spaces (50% of patients) and opportunities to have private interviews with medical personnel (88%). CONCLUSIONS: Our study offers a snapshot of how young people with cancer perceive the impact of the disease and its treatment on their privacy with the restrictions imposed on their individual freedom. Patients' personal needs must be taken into consideration to adopt appropriate measures and better organize wards.

The Youth Project at the Istituto Nazionale Tumori in Milan.

The paper describes the key issues of the Youth Project launched in 2011 at the pediatric oncology unit of the Istituto Nazionale Tumori in Milan dedicated to adolescents (over 15 years old) and young adults (up to 25 years old) with solid tumors. The Youth Project was developed within the pediatric oncology unit in the conviction that adolescent patients may benefit from the multidisciplinary team typical of the pediatric oncology setting, as well as the expertise in treating pediatric-type malignancies and enrolling patients in clinical trials. The project was an offshoot of existing activities, making no major changes to the hospital's organization and posing no major demands on the institution's administration and board. Patients are managed by the pediatric oncology staff, but they have access to particular services (e.g., regarding their psychosocial support, fertility preserving measures, access to care after completing therapy); dedicated, adequately equipped multifunctional rooms have been provided. The location of the pediatric unit within a cancer referral center and the cooperation with divisions dedicated to adults have played an important role in the project's creation.