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

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

Pagani Bagliacca, Elena;Sironi, Giovanna;Veneroni, Laura;Gaggiotti, Paola;Silva, Matteo;Signoroni, Stefano;Casanova, Michela;Cattaneo, Francesca;Chiaravalli, Stefano;Puma, Nadia;Gattuso, Giovanna;Bergamaschi, Luca;Schiavello, Elisabetta;Clerici, Carlo Alfredo;Massimino, Maura;Ferrari, Andrea;
journal of adolescent and young adult oncology 2020
297
pagani-bagliacca2020tumorialjournal

Abstract

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. 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. 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/UCR0EVeYMAjgJlN95tSc_iPA). 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.

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