A new guide for children with cancer has been created to provide parents and children aged two to 12 years old with vital information about what lies ahead after diagnosis.
The Oncology Guide uses videos by children who have been treated for cancer to help families cope with what can be a frightening diagnosis. Every year in the UK, more than 1,800 children are diagnosed with cancer.
Charley Scott got the idea for the guide after her daughter was diagnosed with T-cell non-Hodgkin lymphoma at the age of two. “Everything just happens very fast. You’re very overwhelmed, you’re frightened, you’re very emotional, and this world you’re about to enter is a whole new information level that you hoped you would never come into contact with.”
Suddenly having to explain to her daughter a whole lot of procedures and treatments was really hard, says Scott. “If you’re not medical in any way, what exactly is a CT scan? How do you explain chemotherapy to a two-year-old so they are not terrified?”
Jess, now eight, has been cancer free for a few years, but her family’s experience prompted Scott to create the guide, which aims to be a one-stop shop for families with childhood cancer diagnosis.
The oncology guide contains videos and animations by children who have been through treatment, designed to help other children understand their particular form of cancer, and what chemotherapy, radiotherapy and surgery entail, as well as other common procedures such as X-rays and MRI scans. There is also a section where families can get guidance on where to find extra help – from grants, wigs and days out to respite care.
All clinical information in the videos has been accredited by King’s College hospital NHS foundation trust, while the Children’s Cancer and Leukaemia Group provided medically verified written information for parents.
Stephanie Seales Gabbitas says she would have found the app a lifeline. When her daughter Ariana was told she had B-cell acute lymphoblastic leukaemia in 2020, their world “turned upside down”.
“Everything I thought I knew about being a parent and keeping my children safe went out of the window. The available information was delivered piecemeal, depended on the individual delivering it, and was sometimes contradictory. You have nowhere to turn for a real life viewpoint unless you search online, and that can send you down a rabbit hole of things it’s not helpful to see.”
Gabbitas adds: “The app is important because it delivers the information you need, exactly when you need it: at the beginning of treatment. Access to answers on a whole range of practical, emotional and medical questions. Featuring children who are on or have finished the journey, along with their parents, brings a feeling of relief: we are not alone, and there is a way through this.”
Ariana, now eight, says having videos from other children explaining what was going to happen to her would have made her feel less scared. “I imagined really bad things and would sometimes run away and hide from the nurses and my parents,” she says. “Hearing this from other children who had already been through [cancer] would have helped me feel less alone.”
Aneesa, who is now 11, and helped make the videos on CT scans, X-ray and general anaesthetic, says she took part “to show other people I have done it and that it’s OK, they shouldn’t be scared”.
Harry, nine, who features in a video about Hickman line and chemotherapy, agrees. “The cartoon bits are really cool and would have helped me to understand things much better.”
Dr Omowunmi Akindolie, a consultant paediatrician at King’s College hospital NHS foundation trust, says the guide is “a truly positive step forward for young cancer patients and their families”. “It’s vitally important to give [children and families] access to engaging and easy to understand information about the many aspects of their cancer diagnosis and treatment.”
Dr Laura Danielson, the children and young people’s lead at Cancer Research UK, says the initiative will help clinicians as well as families by providing reliable and easy to understand information at the start of families’ cancer journey. “It also offers doctors, nurses and other healthcare professionals a valuable resource that can help them to support families at a time when they need it most.”
Scott says she wants to develop a similar guide for adults, too. “Having watched family and friends go through cancer treatment, I’ve realised it’s not just children who need that vital guidance and information at the start of their journey, adults do too. So we’re really excited to be working on the adult version and hope to bring that to fruition next year.”
