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

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/UCR0EVeYMAjgJlN95tSc_iPA).

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.

Introduction

A diagnosis of cancer is traumatic at any age, but even more so in adolescence (a time of transition that is already challenging in itself). The care of adolescents and young adults (AYA) with cancer is consequently particularly demanding.¹ Developing such a worrying disease at this age can severely interfere with various aspects of everyday life, with a negative fallout on a patient's body image, psychological wellbeing, quality of life, sense of freedom, and future prospects.^2,3 AYA with cancer need to feel that their independence, their relationships, and their projects for the future are not being held up by their disease, or not entirely at least.⁴ It is extremely important for them to process what is happening to them adequately so that they can face their course of treatment, and cope with the questions that inevitably emerge, such as “why me?.” This is one of the main challenges of managing these patients, and one of the reasons why we need to take care of them (and their families) as a whole, with the help of different professional figures working together in a multidisciplinary team.^5,6

Cancer bursts into an adolescent's life like a tsunami, and only someone their age going through the same hellish experience can fully understand them and find the right words to talk about it. This is why the Youth Project^7,8 has devised an innovative communication project that breaks the rules. The idea is to talk about the impact of cancer, how to find a way to look to the future, the disease's challenges and the patients' hopes, and a few little survival tricks. The patients themselves talk, in their own words, about their day-to-day experiences, and situations they have shared. The aim is to offer encouragement and support for their peers embarking on the same long journey, who feel fragile and flustered by the diagnosis they have received. The project is called Tumorial and consists of a series of brief video tutorials on cancer-related topics that the patients chose to speak about because they judged them particularly important.

The current article describes this project, aimed at illustrating an innovative approach to communication and patients' involvement to caregivers dealing with young people with cancer.

Methods

This study was developed as part of the Youth Project, which involves adolescents (15–19 years old) with any type of solid tumor, and young adults (up to 25 years old) with pediatric-type solid tumors being treated as inpatients or outpatients at the Pediatric Oncology Unit of the Istituto Nazionale Tumori in Milan.^7,8 The Youth Project has two main goals: to optimize clinical aspects (such as the inclusion of young patients in clinical trials), and to promote a sense of normality during the course of care for these young cancer patients. To achieve the latter goal, patients are provided with age-specific spaces within the hospital, and special artistic and creative projects are developed to give them opportunities to express themselves through different media.^9–16

The different issues covered in the Tumorial videos were suggested by the patients, and discussed with the Youth Project team (which includes not only the medical staff, but also two dedicated psychologists, a youth worker, and an art project director). As in previous projects, an outside professional was also involved—a film director in this case (Valerio Rocco Orlando). The project was developed during group meetings that take place every Wednesday afternoon in a room near the ward set aside specifically for our AYA patients. After choosing the most interesting issues to develop, each weekly meeting focused on a single topic. A member of staff (one of the psychologists specifically dedicated to the Youth Project) moderated the meetings. However, the discussion was led by the patients themselves, who talked about their experiences. The meeting was generally attended by 15–20 patients. Another member of staff took notes, which were then used to prepare the script for a video. One of the patients was then chosen as a spokesperson: this was generally the boy/girl who showed a major interest on the given topic and offered him/herself. He/she recorded what had emerged from the discussion in a video tutorial, which always dealt with a single topic. The live-recorded videos underwent little or no editing. They generally ended with the patient/presenter offering some advice on how to cope with a particular aspect of cancer or its treatment, and with a sentence appearing on a banner that summarized the key point being made. All the videos have English subtitles, except for one on the issue of sex, which was recorded by a patient whose mother tongue is English, who produced his own bilingual version.

All patients (or their parents/legal guardians for underage patients) gave their written informed consent to their involvement in the project.

Results

The Tumorial project was implemented by the Youth Project in Milan between March 2018 and June 2019. It involved 53 patients (15–27 years old), 33 receiving treatment and 20 in follow-up when the project began. The patients taking part had been diagnosed with different types of tumor: 22 bone sarcomas, 9 soft tissue sarcomas, 9 brain tumors, 8 lymphomas, 2 germ cell tumors, and 3 other tumors.

The participation to the project was offered to 59 young patients: 6 of them preferred to not join it (the reasons why they did not participate in the project were not collected).

There were 23 video tutorials produced in all. Ten were presented in June 2019, and published on the Youth Project's YouTube channel (https://www.youtube.com/channel/UCR0EVeYMAjgJlN95tSc_iPA). The other 13 videos were then released one a week as of September 2019 (Table 1). The videos last from 30 seconds to 5 minutes. They were deliberately kept short to give a concise but effective message, without boring the potential viewer. Table 2 contains quotes from some of the most significant passages in the videos, or some particularly evocative comments emerging from the notes taken during the meetings.

Table 1.

The List of “Tumorials”

First series of video tutorials released in June 2019

• Introduction

• School

• Sex

• The turban

• Parents

• Hair

• Hair 2.0

• Social networks

• The port

• Isolation

Second series of video tutorials released weekly starting from September 2019

• When, who and how to tell

• Brothers

• Fuck-ups to avoid

• Love

• Changes

• Privacy

• Passions

• Relating with doctors and nurses

• Side effects

• Therapies

• Scars

• Follow-ups

• Ward companions

Table 2.

Citations from the Videos or from Notes Taken During the Meetings

Tumorial title	Particularly significant citations
School	“I believe school is very important to getting back to everyday life. It helped me a lot because going back to normality is fundamental: taking the bus, sitting written tests, worrying about an oral test, instead of worrying about a possible injection.”
School	“To avoid being excluded, and being treated like a stranger, my advice is to talk about it with your classmates and teachers, because if you don't let others understand you, they can't help you. It's up to you to take the first step.”
Sex	“No one can tell you what you have to do, what you can or can't do. Nobody can stop you having a relationship.”
	“Even if there are physical changes, we aren't changing as people.”
	“When we were about to have sex, my girlfriend told me she didn't want to have sex with someone who had cancer. I got dressed and threw her out of the house.”
Parents	“Parents have to strike a balance between breathing down their kids' neck and pretending they aren't worrying about them.”
Parents	“It's important to remind our parents that we're sick teenagers, but we're still teenagers.”
Hair	“The first thing I thought about when I found out I had cancer was losing my hair. I thought about it all night. Our hair is part of our identity.”
Hair	“I don't like it when they tell me hair loss isn't a problem, and I don't like it that some doctors don't understand the problem.”
Social networks	“When you start sharing your story you have to bear in mind very clearly that you expose yourself to people's judgement. Sometimes people's comments may hurt, sometimes they can be annoying and mean.”
Social networks	“Social media have been a way of accepting myself. If I published a photo, I was indirectly accepting the idea of seeing myself like that.”
Privacy	“We don't have our own space any more. You can't choose your own way of doing things because we have to do as we are told and we can't rebel.”
Changes	“It's inevitable to change. We discover new resources. We learn to look at the world from a new, deeper perspective.”
	“Many people tell me I look stronger, more mature. I actually have the impression that nothing goes in the right direction, that I'll never go back to being like I was before.”
	“You can analyze and review your goals, and start again from there. The important thing is for the goals to be achievable, which implies accepting (not without difficulty) your limits and changes. And then, if it takes a bit longer to reach these goals, it doesn't matter!”
Relating with doctors and nurses	“Before being patients, we are people; and before being doctors, they are people.”
Relating with doctors and nurses	“We want to say to our doctors: take off your white coats, get out of the role, at least once in a while.”
Ward companions	“The Youth Project gives us opportunities to create bonds that are true and profound, and different. Meeting someone who was in the same situation as me was enormously helpful, but these friendships can also turn into something terribly painful.”
Ward companions	“It's as if someone who is no more survives in the group. What he was, his words, his way of doing things stay with us forever.”

Some of the videos are humorous, self-mocking, and understated, like the one about stupid “things to avoid” (Table 3), or the one about privacy in which the presenter is filmed from behind. The group felt that some of the topics were especially important and deserved to be approached in more than one way. After filming a first video about hair loss, for instance, the patients decided to shoot another in a more playful and irreverent vein. It shows a boy staring at the camera and trying on various different wigs and caps, one after the other. Then he shows his bald head and says with a smile: “Bald heads identify us as cancer patients, but I like my new look.”

Table 3.

The List of “Things to Avoid”

Don't flirt with the doctors to get discharged earlier

Don't ask an anxious doctor if you can play football when you have a port

Don't bribe the nurses to get more morphine

Don't secretly leave the hospital to eat an ice-cream

Remember you're bald: watch out for the sun and sunburn

Don't arrive at the clinic with a suntan

Don't do wheelies in a wheelchair

Don't use the floor lamp as a skateboard

Don't have your eyebrows tattooed because you don't know where they'll grow back

Don't eat five hamburgers and a kilo of mascarpone cheese

Don't watch “The Fault in Our Stars” on your own

Don't snog while you're in isolation

After their presentation in June 2019, the Tumorials appeared in various newspapers and other mass media (in roughly 100 articles), and on TV. In October 2019, the Youth Project was also awarded the Aretè Prize for Responsible Communication for its Tumorial project.

Discussion

This is an innovative approach to communication in the world of oncological disease in the young that can be an extremely useful tool as part of their course of care.

Providing appropriate and exhaustive information for AYA with cancer is fundamentally important. It is now clear that teenagers and young adults go online more and more. When diagnosed with cancer, the first thing they do is search the web for details about their tumor, often checking for videos on YouTube.¹⁷ Unfortunately, these media frequently provide information that is unreliable or useless. In a study conducted some years ago, we investigated how many and what types of video regarding a certain pediatric tumor (rhabdomyosarcoma) were available on YouTube.¹⁸ We found 149 videos, and only one of them was scientifically sound. Many of the videos contained potentially harmful and erroneous information (such as alternative therapies with no scientific basis proposed with a profit-making intent). Most of them were commemorative videos prepared by families who had lost their children to rhabdomyosarcoma, which give a very distorted image of a disease generally associated with a good chance of survival.¹⁸ The study underscored the need for doctors to produce more appropriate and informative videos, aimed not only at patients seeking a better understanding of their disease, but also for the general adolescent population. It is common knowledge that teenagers and young adults are sometimes diagnosed late due to a lack of awareness regarding the possibility of developing cancer at this stage in life.^19,20 It is up to the experts to find ways to raise awareness about cancer in adolescence, but anyone wishing to offer scientific information to the young should learn to use their potential audience's preferred communication channels and tools, such as the web and YouTube.

The Tumorial project was based on this premise. The core idea was to let the patients produce video tutorials on the issues they themselves had considered important, with the aim of helping other adolescent patients. We felt that someone who was or had been in a similar situation would know best what to say in something like a “survival guide for young cancer patients.”

Tumorial is very different from previous Youth Project activities, which revolved around art, music, and photography as instruments through which patients could tell their stories.^9–16 The patients' narratives were filtered by the artistic medium they used. In the Tumorial project, their experiences are narrated directly. The project involved patients reading their innermost feelings, letting their personal experience surface, talking to each about the most intimate aspects of their stories.

The group's meetings and sharing of ideas enabled newer patients to ask a lot of questions “live,” which helped them to develop the project, and indirectly helped them too. They found answers from other patients sitting next to them who had already been there. This made the patients feel they could all contribute to the video tutorials. It also promoted cohesion among the patients, who got to know each other better.

In many cases, the topics discussed at the group meetings were then taken up, at the request of individual patients, during private psychotherapy sessions. At times, working on Tutorial was a very difficult journey, especially when dealing with certain issues, and the patients involved were always free to choose whether or not to join in. During the meetings, the doctors and psychologists on the staff had the fundamental task of keeping the conversation from getting too distressing.

For the adult care providers involved, it proved a remarkable opportunity to come into close contact with the inner life of our patients, and it taught us a lot. First, the project was helpful to understand what are the most relevant issues AYA wish to discuss with their caregivers. We learned, for instance, that we also need to talk to our young patients about their sexuality, and that we should never, ever belittle the problem of hair loss, joke about it, or try to shift the focus elsewhere by saying that curing the disease is what really matters. We realized just how strongly teenagers feel that their care paths (seemingly mandatory or routine to us) are imposed on them, and severely limit their freedom. We discovered that, in coping with the changes associated with their illness and care, our patients can show great resilience, but also fragility and insecurity. We learned from their voices how our patients long for doctors who “look us in the eye,” and “speak a language we can understand,” doctors who “know how to listen to you,” and who “find time outside their clinical activity to be with us, talk about hobbies, sports, or girlfriends.”

Patients and caregivers developed the Tumorial project together in a significant example of cooperation. As caregivers, we frequently ask ourselves whether we might be at risk of overexposing our patients. As a matter of fact, it's the patients themselves who ask us to be directly involved in our projects, to “stand up” for the cause and let their voices be heard directly. Young patients are therefore the precious testimonials side-by-side of their doctors and psychologists even in those activities, where promotional work and informing the mass-media is involved.

The Tumorial project goes to show how our patients' contribution is fundamental to the success of our communication efforts. It is essential for doctors and all other staff involved in taking care of adolescent and young adult patients to understand the importance of giving them a voice. They need a chance to tell their stories to other people, and to share them with peers going through a similar experience. As caregivers, we should remember not to say what our patients need or think. We should get them to say it instead.

Footnotes

Acknowledgments

The authors wish to thank the Associazione Bianca Garavaglia Onlus, which supports the Youth Project, and the Associazione Dudù for You Onlus, which supported the Tumorial project. The authors thank also the film director Valerio Rocco Orlando.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

No funding was received for this article.

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