TUMORIAL is the series of video-tutorials produced by the adolescent and young adult patients of the Youth Project: in 24 monothematic videos, the patients tell about the impact of the disease, the difficulties and hopes, everyday life and the most common situations, their ways to find a way of looking forward, the “little tricks to survive”.
TUMORIAL represents and innovative approach to communication in the context of the oncological disease of young patients. The idea is for the patients themselves (who better than them, who are experiencing a similar story or have already lived it) to create video-tutorials that answer the questions they have asked themselves, with the aim to help other young patients. A kind of “survival handbook for the young cancer patient”.
TUMORIAL differs from other projects realized within the Youth Project, which – focused on art, music, photography as means of telling about oneself – narrated the experience of patients somewhat filtered by the artistic tool. In the TUMORIAL project the experience is directly reported. The project required each patient to read inside oneself and to lay bare, to bring out their personal experiences, to confront others on the most intimate aspects of their story. It was sometimes a tiring journey, especially regarding some issues.
The project, the result of over a year of work (from March 2018 to June 2019), involved 47 young people between 14 and 25 years old and was carried out thanks to the fundamental contribution of Valerio Rocco Orlando, artist and director.
The project followed a very precise working policy. First of all the patients, together with the staff of the Youth Project, identified the various themes: school, sex, hair, parents, social media, isolation, who to tell, fuckups to avoid, privacy, passions, changes, the relationship with doctors and nurses, scars, ward mates. Each individual theme was then discussed collectively, in one or more meetings (on Wednesday afternoons): guided by a minimal moderating work by a staff member, the patients told their experience, others commented on it, everyone gave their contribution; one of the patients (or a staff member) took notes (that would then become the script of the video). Then, one of the patients offered to be spokesperson for what emerged and the video tutorial was recorded: he filming of the monothematic videos was almost always live, without editing (used only in two cases). Each video ended with a piece of advice and a phrase on a signboard that represented the essence of what was said. In addition, each video was subtitled in English.
“Parents should remember that even if we are sick adolescents, we are always adolescents” (Cecilia)
“Isolation is a state in which you are practically obliged to stay inside a room as a consequence
of the absence of immune system: if you understand the importance of it, you can accept it” (Yari)
“I was ashamed to leave the house, people’s looks hindered me (…) hair is a part of our identity” (Martina)
“We no longer have our spaces; it is no longer possible to choose one’s own way of doing things because things must be done in the way that is imposed on us or required; and you can’t rebel” (Stella)
The videos TUMORIAL can be found on the Youth Project’s Youtube channel:
Like all projects, TUMORIAL was made possible thanks to the contribution of the Associazione Bianca Garavaglia ONLUS (which has always supported the activities of the Youth Project) and the support of the Associazione Dudù for You Onlus.
The Youth Project, thanks to TUMORIAL, was awarded in October 2019 the Aretè 2019 Award for Responsible Communication, with two certificates: the Award for the best Public Communication and the General Award.
Pagani Bagliacca E, Sironi G, Veneroni L Gaggiotti P, Silva M, Signoroni S, Casanova M, Cattaneo F, Chiaravalli S, Puma N, Gattuso G, Bergamaschi L, Schiavello E, Clerici CA, Massimino M, Ferrari A. TUMORIAL: video tutorials produced by young patients on the Youth Project to voice their experiences. J Adolesc Young Adult Oncol. 2020 Jun;9(3):436-440. doi: 10.1089/jayao.2020.0008.
Ferrari A, Silva M, Pagani Bagliacca E, Veneroni L, Signoroni S, Massimino M. A new video Tumorial by young cancer patients dedicated to COVID-19 pandemic and lockdown. J Adolesc Young Adult Oncol. 2020 Jun;9(3):453-454. doi: 10.1089/jayao.2020.0068.