Câncer não é brincadeira. Mas pra crianças, pode ser. | Simone Lehwess Mozzilli | TEDxSaoPauloSalon

Summary

In this heartfelt and inspiring talk, Maricene Crus, a communication expert and cancer survivor, reflects on her journey from volunteering with children with cancer to becoming a patient herself. She highlights the challenges of communicating cancer treatment to children and the importance of patient-centered information. Maricene shares her experience founding Beaba, an NGO dedicated to providing accessible, compassionate, and accurate information to young cancer patients. Through illustrations and guides, Beaba engages children and demystifies the treatment process, emphasizing the power of empowering, positive information in healthcare.

Takeaways

• 😀 Maricene Crus, a communication professional, shares her journey from volunteering with children with cancer to becoming a cancer patient herself.
• 😀 Despite her knowledge in communication, Maricene struggled to explain cancer and treatments to the children she worked with, highlighting the challenges of conveying medical information.
• 😀 Maricene's personal experience with cancer involved a shocking diagnosis and a difficult hospital stay, leading her to reflect on the lack of accessible and patient-centered information.
• 😀 The turning point in her journey came when she was encouraged to undergo surgery at the same hospital where she had volunteered, facing the treatment process firsthand.
• 😀 Maricene realized that information in healthcare is often overwhelming and not always helpful, particularly for children facing cancer treatments.
• 😀 To address the gap in information, Maricene and her team founded Beaba, an NGO that focuses on creating clear, understandable resources for children undergoing cancer treatment.
• 😀 Beaba’s approach involves involving patients, especially children, in the process of creating educational materials, ensuring they are tailored to their needs and comprehension levels.
• 😀 One of Beaba’s key contributions is a guide that illustrates medical procedures and terminology, empowering children to understand and engage with their cancer treatments.
• 😀 Maricene emphasizes the importance of empathy and accessibility in medical communication, especially in the context of childhood cancer, to reduce fear and provide reassurance.
• 😀 The NGO Beaba has expanded its reach, distributing thousands of guides annually to hospitals across Brazil and beyond, helping children worldwide better understand their treatment process.
• 😀 Maricene’s story also challenges societal perceptions, such as the stigma surrounding baldness in cancer patients, and encourages more positive and supportive representation of children with cancer.

Q & A

What is the main theme of the speaker's experience?

The speaker discusses the personal journey of being diagnosed with cancer while volunteering with children suffering from the same condition. The narrative highlights the importance of clear, compassionate communication and patient-centered information, as well as the creation of an NGO to help children with cancer better understand their illness and treatments.

How did the speaker's experience with cancer challenge her understanding of communication?

The speaker realized that despite her extensive background in communication, she struggled to explain the complexities of cancer and its treatments to children. This led to a deeper understanding of the limitations of information available and the need for more accessible, patient-focused communication.

What role did the children play in the speaker's understanding of their own illness?

The children she worked with played a key role in helping her process and understand her cancer journey. They shared their own experiences and provided feedback on medical procedures, which helped her engage more meaningfully with her own treatment and find ways to explain it better to others.

How did the speaker's involvement with children influence her approach to information dissemination?

The speaker recognized that children not only understood medical terminology but could also engage with the process of learning about their illness. She created a guide to help explain oncology terms and procedures, which was patient-centered, involving children in the development process.

What is the purpose of the NGO 'Beaba'?

Beaba is an NGO founded by the speaker and her collaborators to create accessible, patient-centered information for children with cancer. The NGO focuses on demystifying medical terms and procedures, using visuals and simple explanations, and ensuring that the children and their families are better informed and engaged.

Why is it important to have patient-centered information, according to the speaker?

Patient-centered information is crucial because it involves patients in the process of understanding their own treatment, empowering them to make informed decisions and feel more engaged in their care. The speaker emphasizes that this approach should be collaborative, not just professional-driven.

What impact did the Beaba guide have on hospitals and families?

The Beaba guide has been highly requested by hospitals, both in Brazil and internationally. It has been distributed to over 40 hospitals in Brazil and is particularly helpful in regions with high illiteracy rates. The guide helps children understand their procedures better and eases the emotional burden on families.

What does the speaker mean by saying that sometimes information doesn't need complex explanations?

The speaker suggests that not all medical information needs to be explained in technical or complex terms. Using simple, relatable illustrations and metaphors, such as drawing a heart when expressing love instead of detailing its ventricles, can make the information more accessible and less intimidating.

How does the speaker address societal perceptions of cancer patients, especially bald children?

The speaker points out that society often associates baldness with cancer and sees bald children as 'sick' or 'needing help.' However, she challenges this perception, noting that a child’s baldness doesn’t necessarily correlate with their current health status, as some may be cancer-free while others may not be under chemotherapy.

What message does the speaker convey about the role of empathy in healthcare communication?

The speaker emphasizes the importance of empathy in healthcare communication, noting that patients should be treated with dignity and respect. She critiques materials that focus on depicting cancer patients in a way that evokes pity or sadness, arguing that this approach often diminishes the self-esteem and empowerment of patients.