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Creating beauty: the experience of a fashion collection prepared by adolescent patients at a pediatric oncology unit

Abstract

Aims and background

Adolescent patients with cancer need psychological support in order to face the traumatic event of cancer diagnosis and to preserve continuity with their normal lives. Creative projects or laboratories may help young patients express their thoughts and feelings.

Methods

The Youth Project developed activities dedicated to adolescents to give them a chance to vent their creative spirit and express themselves freely. In the first project, the teenagers designed their own fashion collection in all its various stages under the artistic direction of a well-known fashion designer, creating their own brand name (B.Live), and organized a fashion show.

Results

In all, 24 patients from 15 to 20 years old took part in the project. The fashion project proved a fundamental resource in helping the young patients involved to regain a positive self-image and the feeling that they could take action, both on themselves and in their relations with others.

Conclusions

Facilitating the experience of beauty may enable hope to withstand the anguish caused by disease. This experience integrated the usual forms of psychological support to offer patients a form of expression and support during the course of their treatment.

Tumori 2015; 101(6): 626 - 630

Article Type: ORIGINAL RESEARCH ARTICLE

DOI:10.5301/tj.5000365

Authors

Laura Veneroni, Carlo Alfredo Clerici, Tullio Proserpio, Chiara Magni, Giovanna Sironi, Stefano Chiaravalli, Luisa Roncari, Michela Casanova, Lorenza Gandola, Maura Massimino, Andrea Ferrari

Article History

Disclosures

Financial support: None.
Conflict of interest: None.

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Introduction

Adolescents who develop neoplastic diseases find themselves having to deal not only with cancer and all that this implies (from the treatment to the risk of dying), but also with a traumatic disruption of their adolescence.

Developing individuality: who am I, and where am I going?

Adolescence is a time of transition when each person develops his or her own identity and relationships with others. To be able to develop relationships, people need to have the impression of being pleasing to themselves and appealing to others, a sense of mastery of his or her own body, and his or her ability to attract others. Adolescence is the age when people pay the most attention to the body: teenagers experiment with hairstyles and makeup, they shape their bodies with sports and diets, and they take an interest in their clothes. Adolescents who are constructing their own personal identity have to cope with 2 diverging dynamics: they need to retain some degree of continuity with their previous self-image, remaining themselves despite the changes underway, and they also need to construct their own individuality (1).

When severe physical diseases such as cancer occur in adolescence, they can interfere with these identity-building processes because they suddenly disrupt the continuity of the self-image that the individual had before. The disease generates a rift between what the patient actually is and what he or she would like to become—sometimes leading to his or her own body being rejected. Disease is a traumatic event that has the potential to interfere with adolescent patients’ normal behavior at this age: spending time with friends, establishing new relationships, falling in love, going to school, becoming increasingly independent of parents, and breaking the rules (2). In a word, a neoplastic disease can interfere with patients’ chances of inventing themselves and making plans for their future (3, 4).

Preserving the development of individuality

In recent years, the oncologic community has acknowledged that adolescent patients have special needs (2). They warrant a holistic approach to their care to avoid the risk of their disease and its treatment interrupting their physiologic development. Managing adolescent patients warrants specialist psychological support, but the environment in which they are treated should also be designed to give them the opportunity to preserve continuity with their normal lives. Specialist research has also shown that enabling normal, day-to-day activities to continue can offset the psychological trauma of the disease, helping to prevent psychopathologic consequences in the long term (5). With this in mind, various projects have been developed to enable adolescents to continue their schooling while in hospital, to stay in touch with their friends and companions (also using modern technologies such as Facebook, Skype, and YouTube) (6, 7), and to ­continue to be involved in their favorite sports. The value of creative activities has also been emphasized (8-9-10-11), conceived as a way to reinforce the adolescent patients’ sense of their own value, of their ability to influence reality in a manner that other people can recognize; ultimately, exploiting their creative spirit becomes a way to define their identity and see themselves appreciated in their relational world. Using their creative spirit can also be a way to go beyond the limits imposed by their disease. Forms of artistic expression give adolescent cancer patients a chance to demonstrate their capacity for independence and action even when their disease and its treatments obligate them to put their life on hold. They can regain control at a time when everything seems to be beyond their control, even though they are no longer able to do what they did before, their hair falls out, or they gain or lose weight.

Projects such as art laboratories can be an important way to provide adolescents with the means to express their thoughts and feelings, enhancing their short- and long-term psychological well-being as a result. The latest psychological research suggests that the potentially traumatic impact of disease can be countered by therapeutic measures that help the experience of disease to be expressed, given a place in an individual’s life story so that it can be shared with others and help patients to distance themselves from their anxiety. Not all young people succeed in speaking openly about their ­feelings, however, especially to a doctor or a psychologist. Drawings, photographs, phrases, a poem, or a song can help adolescent patients to express their feelings, fears, and hopes in forms that are more appropriate to their age group. They can express thoughts without having to explain them, and above all they can use communication styles that their peers find easier to interpret.

Methods

Art and fashion at the youth project

The Youth Project was created at the Pediatric Oncology Unit of the Istituto Nazionale Tumori in Milan, Italy, in 2011, for the purpose of developing an organizational and cultural approach to the treatment of adolescent patients (12). The project focuses on optimizing purely clinical aspects (e.g., the inclusion of adolescents in clinical trials, their psychosocial support, fertility-preserving facilities) while creating spaces inside the hospital and activities specifically dedicated to patients between 15 and 19 years of age. Multifunctional spaces have been provided (a multipurpose room, a classroom for academic study, a 30 m2 gym where patients can work out under the supervision of personal trainers) and special activities have been organized, scheduled once every 1-2 weeks. These encounters generally focus on artistic activities and are organized with the support of various professionals. The aim is to give adolescent cancer patients a chance to vent their creative spirit and give them an opportunity to express themselves freely.

The first project, undertaken in 2012, proved particularly important. It focused on fashion: the teenagers designed their own fashion collection, creating their own brand name (B.Live), and they organized a fashion show and produced a book of photographs. The project lasted 6 months, with fortnightly meetings lasting 2-3 hours held in the rooms set aside for adolescents at our Pediatric Oncology unit (Figs. 1-2-3). The project came under the artistic direction and coordination of a well-known Milanese fashion designer (Gentucca Bini), aided by several other professionals (including a fashion journalist, a professional photographer, a writer, an artist, and a make-up artist).

Patients at work in the multifunctional room at the Pediatric Department, studying models and choosing colors, patterns, and fabrics (photograph by Laura Larmo).

Patients at work in the multifunctional room at the Pediatric Department, studying models and choosing colors, patterns, and fabrics (photograph by Laura Larmo).

Patients at work in the multifunctional room at the Pediatric Department, studying models and choosing colors, patterns, and fabrics (photograph by Laura Larmo).

In all, there were 24 patients from 15 to 20 years old who took part in the project: 18 were receiving treatment at the time, while the other 6 had completed their treatments and were returning for follow-up visits. The meetings were attended by inpatients and also by adolescents who had returned home (and who came to the hospital specifically to take part in the project). Web-based communications using a closed group on Facebook, on a dedicated channel, enabled patients to take part in the project even if they were at home.

The adolescent patients designed and developed a genuine fashion project in all its various stages, learning the tools of the trade. They studied models, beginning with a review of the fashion iconography of the last 30 years, analyzing the images used in advertising, films, fashion magazines, and cartoons. Then they chose the colors, patterns, fabrics, and accessories they wanted to use. They created the B.Live trade name and a symbol—a metal bolt—to convey the idea of linkage and represent the strength of the young people who adopted it.

The B. Live project gave rise to an enterprise and brand, established at the hospital and developed owing to the support of 2 associations—the Fondazione Magica Cleme and the Associazione Bianca Garavaglia. The ‘B.Live’ brand now produces fashion clothing and uses it to convey a message, to improve people’s awareness of the clinical and psychological conditions with which adolescents with cancer have to cope.

The various stages in the creation of the fashion collection were photographed and this gave rise to a book telling not only the story of how the collection was prepared, but also the stories of the young people involved, in the words, images, and colors that they chose to represent themselves. The collection was presented at a fashion show, and is on sale to finance further projects (Fig. 4).

Some of the patients pose at the end of the fashion show (photograph by Matteo Volta).

The project attracted the attention of the mass media and, owing to the space dedicated by the media to the artistic aspects of the project, enabled an important message to be circulated concerning the particular problems of adolescents with cancer. It gave doctors a chance to make the point that there are problems to solve concerning the early diagnosis of adolescent patients and their access to treatment protocols. That is why adolescents have a lower likelihood of survival than children with the same disease. The patients involved in the project appreciated the chance to be active partners, together with their doctors, not only in their personal battle against their own disease, but also as testimonials of an important message for themselves and for other patients like themselves. These teenagers spoke about how they had to battle not only against their disease, but also against everything that the disease could mean in terms of isolation, being unable to plan for the future, feelings of inadequacy and powerlessness, and of losing control.

Results

What the patients had to say

The fashion project proved a fundamental resource in helping the young patients involved to regain a positive self-image and the feeling that they could take action, both on themselves and in their relations with others. It enabled them to construct or reconstruct their own individuality: through fashion, they could find fulfillment and beauty.

Valeria (a 15-year-old girl with soft tissue sarcoma) explains: “This was a creative way to go beyond the limits that have been imposed on us by the doctors and our parents. We created something beautiful, and not only for ourselves, but for others too…” In their search for their own personal style of dress, the adolescents took action not only on themselves, but also on their relationships with other people, changing their approach to the world of their healthy peers. They were no longer on the sidelines of what was happening in the world; they became creators of new trends, an inspiration for others. While fashion represents inventing beauty (for healthy people too), for our young cancer patients, it proved to be a way of inventing themselves and life.

“Behind every item of clothing there was a choice, an act of self-determination against everything that had been done to my body,” said Federica (a 16-year-old girl with Ewing sarcoma). At a time when they experience a loss of control over their own bodies, designing their own personal style of clothing can help adolescents to feel some degree of control over the changes underway in their bodies. A colorful bandanna, a particular set of earrings, a certain way of using makeup, a special hat become opportunities to gain a self-awareness in a way that may be unexpected but pleasing to the patients and to others around them. “I realized that I didn’t need to feel ashamed of having no hair, that I didn’t need to be afraid of looking at myself in the mirror. I realized that I look good even like this.” In illness, these adolescents have a body that is different from the self-image they had before they became ill, and far from the one they had idealized or longed for. This situation can make their body feel foreign, and make them want to conceal it. An interest in fashion and an effort to ­identify their own personal style helped these young people to focus on their own bodies again, to take care of them and repair the fracture between their real self and their ideal self, to assert their individuality. Federica also said, “Many people ask me how I managed to be so strong. The answer is simple: I had no choice. But B.Live helped me to see that I had to resist, I had to fight, solid as a rock and as proud as a lioness. Before there was an abyss all around me, and especially inside me. Now I am a warrior.”

Fashion generally implies following models and a sense of belonging to a group. The concept of the group was fundamental to the adolescents involved in the B.Live project. “With B.Live, we feel we are part of something again, part of a group where everyone is equal, happy to meet and spend time together,” says Eleonora (a 17-year-old girl with osteosarcoma).

“Fear is the main thing we feel. Fear that we won’t make it, certainly, but especially fear of being alone. With B.Live, I realized that I was no longer alone in this difficult journey,” said Alessandro (a 16-year-old boy with Hodgkin lymphoma), “B.Live became a way of meeting other young people who know what it’s like to go through all this, to see people who had been through it all before me. It was also an opportunity to do something to help the people who come after me.”

Another particular aspect of the fashion project experience at the hospital was the chance to create something beautiful in the place where people generally suffer. This became a sort of reparatory experience. As Alessandro said, “Suddenly, a funny thing happened. While before I was anxious every time I went to the hospital for treatment and follow-up, I was always agitated and worried, afterwards the hospital became a place where I wanted to go even when I didn’t have medical appointments because that was where I met my friends and felt that I was part of an important project.”

“For me, fashion is a sort of personal comeback,” says Diego (a 21-year-old man treated 3 years earlier for non-Hodgkin lymphoma), “an added value in my life, something that identifies me. It is a way of expressing ourselves and making us look better. There is still a whole lot to discover in B.Live—a whole ‘forest of symbols’ full of light and shadow, a creative act and a privilege. It is the best way to make a gray day colorful.”

The book telling the story of B.Live constantly refers to the colors that the teenagers wanted to use in their clothing. Megi (a 16-year-old girl being treated for rhabdomyosarcoma) quoted Kandinsky: “Color is a means of exerting direct influence on the soul. Color is the keyboard, the eyes are the hammers, the soul is the piano with many strings.” Then she added, “I wanted to design T-shirts and sweatshirts in yellow, sharp lemon yellow or mellow yellow like cheese. Yellow is the color of warmth and summer, and hay.”

“With B.Live, we can create beautiful things based on our own senses,” says Elisa (a 16-year-old girl being treated for Ewing sarcoma). Senses and colors are mentioned in combinations: “I create with purple, like the smell of lavender and the flavor of grapes, purple like cold, melancholy and envy.”

Valeria wrote, “Life is made of colors. When you discover you have a disease like this, it feels like you’re falling into a bottomless void, down and down, and nobody can help because you are alone now, just you and your disease. Everything turns black. Then something happens. You look into the eyes of family and friends, and of other young people like yourself here in the hospital, and you see in them a light that shines in the dark, in the depths of blackness. It’s the small things, a smile, or a cuddle, and then the world turns green. Green is the color of hope.”

Our adolescent patients play with colors. “I want to dress in white,” says Marina (a 17-year-old girl with Ewing sarcoma), “white like milk, like washing and clean things. White like infinity.”

“I love blue,” says Eleonora, “blue like the deepest sea, and the cold up in the mountains.”

These teenagers’ words reveal their strength and their pride. “For me, ‘B.Live’ is a way to make everyone else understand that cancer can’t stop you, that you can still do everything other people do. You can even do more,” says Marina.

“I don’t want to forget everything that happened. I want to remember everything so that I can find the strength that got me through these past months every time I need it,” says Megi.

Gabriel (a 19-year-old boy being treated for a brainstem tumor) wrote, “We adolescents need to leave our mark on the world.”

Discussion

Our fashion project, like other projects revolving around art and creativity, enabled the value of beauty to be brought inside the hospital. An attention to beauty maintenance and invention should become an important facet of medicine. Patient care must succeed in sustaining hope as a nonsecondary goal. A sense of hope often escapes attempts to support it using biological means, but may be strengthened by human relationships and the search for beauty, because where there is room for people to think about beautiful things, then people can be spared suffering, temporarily at least. Facilitating the experience of beauty thus enables hope to withstand the anguish caused by disease. This is a matter that should be borne in mind when we organize our in-hospital activities and create spaces for our inpatients. Such considerations are generally applicable, but even more so to patients who ­become ill in adolescence. For our young patients, the B.Live experience proved valuable. It could be used as a model for other schemes, integrating the usual forms of psychological support to offer patients a form of expression and support during the course of their treatment.

Acknowledgment

The authors thank the Associazione Bianca Garavaglia and the Near/Magica Cleme Foundation for supporting the Youth Project at the Pediatric Oncology Unit at the Istituto Nazionale Tumori in Milan; Gentucca Bini and all those who contributed to the creation of the B.Live project; and the patients and families.

Disclosures

Financial support: None.
Conflict of interest: None.
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Authors

Affiliations

  • Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan - Italy
  • Department of Biomolecular Sciences and Biotechnology, Psychology Section, Faculty of Medicine, University of Milan - Italy
  • Clinical Psychology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan - Italy
  • Pastoral Care Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan - Italy
  • Radiotherapy Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan - Italy

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