Tumorial: Video Tutorials Produced by Young Patients on the Youth Project to Voice Their Experiences.

Elena Pagani Bagliacca, Giovanna Sironi, Laura Veneroni, Paola Gaggiotti, Matteo Silva, Stefano Signoroni, Michela Casanova, Francesca Cattaneo, Stefano Chiaravalli, Nadia Puma, Giovanna Gattuso, Luca Bergamaschi, Elisabetta Schiavello, Carlo Alfredo Clerici, Maura Massimino, Andrea Ferrari

Research output: Contribution to journalArticlepeer-review

Abstract

Purpose: Adolescent and young adult patients of the Milan's Youth Project developed a new communication project aimed at young people with cancer: in a series of video tutorials called Tumorial, they talk about their day-to-day experiences, offering "survival tricks" to their peers. Methods: The project was developed during group meetings taking place every week in a dedicated room near the ward. Each meeting focused on a single topic and was led by the patients themselves, who talked about their experiences; staff members moderated the discussion and took notes, which was used as script for a video, recorded by one patient as a spokesperson. All the videos had English subtitles. Results: The project was implemented between March 2018 and June 2019 and involved 53 teenagers and young adults (15-27 years), 33 receiving treatment and 20 in follow-up when the project began. There were 23 video tutorials produced in all, with various topics, for example, school, sex, hair, privacy, social networks, fuck-ups to avoid, scars, ward companions. The videos are published on the Youth Project's YouTube channel (https://www.youtube.com/channel/UCR0EVeYMAjgJlN95tSciPA). Conclusion: This innovative approach to communication in the world of oncological disease in the young can be a useful tool as part of their course of care. It appears of great importance considering that social networks-and YouTube in particular-frequently provide unreliable or useless information. In making the project, patients told their innermost feelings, promoting cohesion among them. Patients and caregivers developed the project together in a significant example of cooperation.
Original languageEnglish
JournalPediatric Blood and Cancer
Issue number3
Publication statusPublished - Jun 1 2020

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