F133 How Can You Explain Cancer To Children? (Simone Mozzilli, Liliane Dubois, Beaba)
Simone Lehwess Mozzilli and Liliane Dübois both had cancer in their past. Liliane as a child, Simone as an adult. They are both an integral part of the Brazilian non-profit Beaba. Beaba offers support to children with cancer and their families by demystifying cancer and informing in a clear, objective, and optimistic way about the disease and treatment.
Beaba so far created various products: a printed book called Beabook which resembles a dictionary and explains more than one hundred and fifty terms about cancer. In this episode, Simone, who is the President of Beaba, and Liliane, who is the Strategy Officer, talked about how to approach children with cancer, what they’ve learned from the app and other products being used across the world, and talked a little bit about cancer care in Brazil.
Here is the full transcript.
Simone, Beaba is described as a company demystifying cancer and informing in a clear, objective, and optimistic way about the disease and treatment. How do you do that?
Simone Mozzilli.
Simone: We demystify the disease, treatment, and oncological environment throughout a methodology which we created using the principles of Information Architecture and Design, Usability, and Human-Centered Design.
There are a lot of things which we pay attention to, such as visual and textual information like target, clarity, images, colors. For example, if we will show an image in a difficult context, we avoid using red, because we know (studies show) that this color accelerates the heartbeats.
How does demystifying take place? Through an app or other means as well? The impact of color sounds fascinating - can you mention any other examples of what you discovered through the Usability and Human-Centered Design?
Simone: We use several approaches in order to demystify cancer. We do it through different platforms, such as online, through an app with 20 minigames. We use social networks as Instagram, Facebook, and also courses for health professionals. Offline, such as Beabook, Beaba Camping, workshops, and meetings.
About what we apply from usability and Human-Centered Design: in Beabook when we write about a cancer term, we always finish the sentences with a good word of encouragement.
In Beaba Camping we used gamification to influence children to do things they do not like such as try to eat broccoli or go talk with a psychologist. Many things that they never did before and started to love. In a few words, demystifying serves to encourage people to try or discover things they had never done.
What's the story behind the company? What is your WHY that pushed you to start Beaba?
Simone: For many years I had volunteered with children with cancer. Despite my background in Information Technology, I didn't know how to explain to children about the disease and treatment. Until I was diagnosed with ovarian cancer and realized that most of the materials didn’t represent much less engaged patients.
During the treatment, I started to talk about the disease, treatment, and oncology world with the children and these motivated them to understand and share procedures, fears, difficulties, and discoveries. So we founded Beaba, a nonprofit organization made up of patients, health and technology professionals.
You got cancer yourself. How did that experience change your perspective and impact the further development of Beaba?
Simone: I had cancer before starting Beaba. After years volunteering with children with cancer and their families, I felt at the same time grateful for learning so much with them about how to face treatment. On the other hand, I was afraid because the information and support tools were not suitable, they did not give clear information, or even helped me to face the treatment. That encouraged me to create better materials for us, the patients.
You are a nonprofit organization whose mission is to demystify cancer, providing information about the disease and treatment in a clear, objective, and optimistic way, for children, adolescents, and their caregivers. Can you further elaborate on what you identify as the biggest need in children's patient care?
Liliane Dubois.
Liliane: Normally people think that the most important thing for patient care is the treatment. As former patients, we can answer that actually the most important thing after a cancer diagnosis is having correct and clear information about everything you are going to handle from that day on.
In one day your whole world changes and you become a person with cancer, with all the difficulties you will have to face it beyond learning everything you have to learn about the disease, treatment, way of living, etc. So you have to learn everything about this whole new world and also teach your family and friends. It is much better to get this information in a clear and optimistic way.
What about when the news or the prognosis is not optimistic? Do you address that as well?
Liliane: People need to learn how to live with cancer, independent of their prognosis. As we don't know for how long we are going to be in treatment or if we are ever going to be cured, that is why we want people to have the best life they can during each day of the treatment.
This is the optimistic point of view, not only to believe we are going to be cured, but the most important is to believe that we are having the best quality of life during all the journey.
Normally people expect that you are going to receive your diagnosis, pause your life and only live like a sick person until the cure or the death, this is the pessimistic way of living. As we don't know the day after tomorrow, we have to learn how to live with cancer, still getting the best life with this condition can provide, this is the optimistic vision.
From my perspective, the immediate association with cancer is death. In your experience, do fears and worries across the countries you are present in differ?
Liliane: We understand that the fears and concerns are the same in different cultures, perhaps what changes is the way of dealing with it.
Brazilian people are optimistic by nature and in general, prefer to deal with it that way, believing that in the end, everything will work out. We brought this optimistic way to the communication of our materials and we realized how well it was received in different cultures.
Everyone wants to believe that they will be fine, the most important thing is how to go through this all over the treatment. Each day matters for those who are facing cancer. So, this is our focus, to help people to understand the "cancer world" and how to improve the quality of life during treatment.
How would you describe patient cancer care in Brazil? What are the challenges and the upsides?
Liliane: Brazil is a country with huge social differences and all the challenges that this implies, mainly economic and educational. On the other hand, Brazil is also a world reference with its public health system called SUS, which is far from ideal and has many management challenges to solve, but it guarantees access to adequate treatment for many people who would not be able to afford it. Unlike the USA, for example, where families need to put their homes in mortgage to pay for treatment. In Brazil, those who are able to obtain an early diagnosis and access to the major public health treatment centers have this privilege, I (Liliane) was one of them. Despite all criticisms of Brazilian public health, I owe my life to it, as do thousands of other patients. That is why we have to defend its maintenance and improvement.
So in short, Brazil has excellent public hospitals and highly trained professionals, but unfortunately, this reality still cannot reach the most distant regions and the poorest population. Other than that, we can say that the general problem of the patients in Brazil, even from the public or the private system, is the same as in almost all countries: the lack of adequate information and the humanization of treatment.
Your app is available in countries across the world - did you have to adapt the content based on culture?
Simone: We still don't have all the adaptations needed to many countries, but we tried to develop it since the beginning in a more transcultural way. We really want to adapt it for different cultures but we need to have financial support to develop it in a more specific way for different countries.
You offer a range of products to make people better informed - people can listen to a podcast, you have an app, but it all started with a printed guide for children, which was designed in collaboration with children with cancer. Can you tell me a bit more about what kind of information is in the guide?
Simone: Beabook is like a dictionary that explains more than one hundred and fifty terms about cancer. All terms are nicely illustrated, very fun and joyful, in an easy way for children and family to learn about it. Beabook also helps health professionals to explain treatment and procedures to the children and caregivers. This helps the family to be more prepared and empowered to face the treatment. We just got the third edition and will donate six thousand books from all over Brazil. Beabook is already translated into English and Spanish and we are looking for partners to help to distribute them in other countries.
Children are curious. Do they get all the information an adult would? How do you adapt the information delivery so it's for children?
Liliane: Yes, children are smarter than we think. They can understand everything that is going on. They feel their bodies, perceiving the changes, and experience the pain, especially in cancer treatments, where the journey is long.
If you go to a hospital you are going to see children playing with dolls in the exact same way as what they see people doing with them. They pay attention to everything and copy that on their gameplay. I can say it about my experience. I had leukemia when I was 7 and one of my favorite plays was taking care of my dolls and even my parents, giving them fake injections, changing wound dressings, everything that I lived in my reality. Beaba learned how to adapt the information with specialized professionals and the children themselves. Children want to know the truth, they want to be part of the treatment and what we do is adapt this information in a way that is easier for their understanding. We use simple and objective writing, directed to children, as well as figures that help to illustrate the texts. Every detail of Beabook was precisely thought out, like format, colors, material... Everything has a purpose.
In child cancers or any diseases to that matter, we focus on the patient, but in reality, the whole family "gets sick". How do you see the support needed to the whole family, parents, are you looking in that realm as well?
Liliane: Beaba understands that cancer education has to be done for all participants in this ecosystem, from the patient to the health professionals team. The Beabook, for example, is used not only by children but also by families and caregivers, since everyone needs to step in on this topic with easy information.
The health professionals also use it to standardize communication, learning the best way to make itself understood by the families.
A few years ago you also designed a game Alpha Beat Cancer which aims to bring relevant information to young children through gamification. Can you talk more about the app and what has it taught you about the approaches in information delivery to children?
Simone: Alpha Beat Cancer is an educational app developed with Mukutu, a game studio led by Ludmilla, a friend of mine who had cancer too. The app is about cancer and treatment designed to serve as a learning tool for children diagnosed with the disease. The main goal is to provide information through challenge and recreation, using the principles of Information Technology combined with Design, Usability, Gamification, and User Experience. The content of the app came from Beabook and it uses linear narrative, presenting and following the path of treatment: symptoms, diagnosis, and the treatment itself, counting on logical support of time, space, and characters.
At the same time the user takes over the patient, they also control procedures such as biopsies, application of radiotherapy and patient care in order to encourage identification with the character and his or her own treatment. This way, passivity is reduced and the patient is encouraged to take control over the situation.
The team that made the game included cancer survivors, and it consulted with patients and doctors to try to get the facts about cancer and its treatment right. The title is a collection of 20 mini games.
Simone: Yes, the app has 20 minigames that bring entertainment and information about cancer and its treatment. The development was made with the effective participation of all the stakeholders: patients, caregivers and health professionals. Alpha Beat Cancer strongly motivates us to stay strong and keep moving forward down that path.
Is the app continuously updated with new games? After all, cancer treatment is long, I imagine children would love to play for a long time?
Simone: Yes, sure! We would love to add many other games to go along with all treatment phases, this is the idea for the next steps. Unfortunately, we did not have more financial support to continue the game development. We hope we can get a sponsor in the future to update and upgrade the game.
Did COVID affect the company in any way?
Liliane: Yes, actually in a good way. People are giving more value to information. In the specific case of Covid, for many months all we had was some information about the disease, which made people understand that information often helps as much as remedies.
Also because of this, people are looking for more information on subjects that are not studied in formal education, like mourning support and palliative care. We got this and launched educational projects for health professionals, which have been a success and are also helping to support Beaba's work.
What are your plans for the next 10 years?
Simone: Just as cancer needs to be demystified and better informed, so are many other diseases. We want Beaba to be a partner that people can trust and use in times of illness and recovery. So in 10 years, we want to not only support all cancer patients but patients, caregivers, and health professionals from all diseases.
Beaba is a non-profit organisation. If you would like to support or sponsor the organisation, visit the website and get in contact.
***
Beabook
Beabook is a book that explains more than 150 terms connected with cancer. All terms are nicely illustrated, very fun and joyful, in an easy way for children and family to learn about it. Beabook also helps health professionals to explain treatment and procedures to the children and caregivers, which helps them to be more prepared and empowered to face the treatment.
It was made by a lot of people as little patients, families, health professionals, hospital custodial, and advertisers. We just got the third edition and will donate 6.000 books from all over Brazil. Beabook is already translated to English and Spanish and we are looking for partners to help to distribute them in other countries.