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Abstract: |
Hannah, you can do it! is an illustrated guide through the difficult stages of leukaemia: from diagnosis to recovery. It clearly explains to young leukaemia patients the necessary examinations and treatments that will be part of their therapy, and gives parents practical and psychological assistance so that together they can better cope with the disease. The authors deliberately called the book an illustrated guide; it can be read by older children, read to younger children, and, for adults, it is a handbook and a workbook, because it includes interactive elements.
Sometimes, life changes from one moment to the next—as it does in the story told in this book. This is a true story. There is a real Hannah. After her diagnosis and treatment for leukaemia, today she is cured.
When leukaemia is diagnosed, overburdened parents demand a lot of information about the nature of the disease: the prognosis, the therapy, disease duration, medication and its side effects, care and hygiene measures. This illustrated guide sensitively takes the reader from the beginning of little Hannah’s illness, through the entire course of her medical treatment. It fills gaps in knowledge and provides valuable psychological help, not only to children with cancer but also to their parents who, through reading this guide, can give information and emotional support to their sick child. The guide explains complex processes in simple words and vivid pictures to help children understand them and become cooperative partners in their own treatment. Difficult issues are conveyed through sensitive, humorous stories that also entertain children and encourage children’s involvement. The aim of the illustrated guide is to carefully prepare children and adults for the disease and therapy and remove as much of the accompanying fear as possible. Those who can better imagine their enemy can work better together to defeat it.
A complex message simply told
Child-friendly medical explanations make up the bulk of the illustrated guide. The book explains that the human body is made of billions of small building blocks. It describes the functions of the body, for instance, circulation of blood, cell division, methods of examination, e.g. EEG, ECG, ultrasound, MRT, CT, X-ray, treatments and stem-cell transplantation. Expressions such as ‘It does not hurt, just lie quietly’, help the young patients understand and prepare themselves for upcoming tests. Another main topic is the cancer cell, which is graphically depicted in the book as a dark blue, soft cell cancer, which we have called Shaggy. This results in constructive conversations with children who have cancer and who try to visually imagine their own destructive cells. The cancer cell may not be evil, or too hard, sharp or too threatening in its entirety, because it is in the bodies of children. However, the cell must be seen as an unwanted intruder. Particular emphasis is also placed on the priority of taking medication, its effects, and its often unpleasant but unavoidable side effects. The guide’s child-friendly explanations are intended to make it easier to give medication and trust in the medical and pharmaceutical industries.
The young patients are encouraged to imagine how the chemotherapy drugs damage and destroy their cancer cells. Such a visualisation process can promote recovery and strengthen the healing process to ensure that cancer is not seen as the finishing-line, but as a starting point into a manageable future.
Information is important
Many developmental psychology studies have shown that children’s ability to understand and deal with medical information is usually underrated. Children are very capable of not only handling their physical condition, but also gruelling operations if they are kept well informed. Therefore, it seems irresponsible to deny children information. It is during the exceptional situations when parents are trying to hide the truth, that children can feel most betrayed and helpless. These children face the risk of suffering trauma, and the additional danger that they lose all trust in medical staff and especially in their parents. Therefore, even small children, depending on their individual level of development, should be prepared for the therapy. To this end, we have incorporated into the story, tips for parents that are marked with symbols and coloured boxes. These give mainly psychological advice, but also tried and tested medical advice and practical tips.
Polly cuddle-cushion helps
Polly is Hannah’s cuddle-cushion. It comes to life in the story and helps Hannah to be healthy again. One Polly comes with every book to ensure that each child has their own Polly for comfort and support. The cushion has a removable washable cover to meet hygiene standards. Polly represents trust, comfort, friendship, affection and security, as well as joy and fun.
Children have a different concept of time
Children generally have no clear notion of time; their concept of time is different to that of adults. This means that they require the idea of forthcoming procedures to be broken-up into small stages and explained in sequential order. They need an understandable reference point. The book includes a therapy-plan leaflet developed by St Anna Children’s Hospital, Austria. The therapy plan consists of a Leporello, or seascape, with adhesive labels in the form of sea animals and a ship. The ship represents the position of the child. For every completed therapy, the child can choose a sea animal to add to the seascape, and advance the ship on its way towards the sun and into the harbour, where the child will be healthy. The medical therapy plan will be agreed with the medical personnel and the parents. Each child should have the chance to help design their own therapy plan. Additions can be made with coloured pencils and adhesive sea animals. In this way, the child is also engaged on an emotional level.
The friendly face of injections
Small children, preschool children, concentrate on only the obvious aspects of their situation. In hospital, lots of machines, strangely dressed people in white coats or medical equipment can, therefore, make them anxious. The book includes stickers: eyes, noses and mouths to cut out and stick on. The sheets include different facial expressions or moods, which the children can choose to stick on the syringe or infusion bags as they wish. In this way, they tackle their fear of otherwise scary objects.
Pre-school children have an egocentric perception. They see themselves at the centre of the world and are convinced that everyone knows how they feel. There is, therefore, a place for children to draw for self-expression: their favourite place at home, and how their bodies feel.
Hannah, you can do it! is a complex book that won first prize in the City of Vienna’s Health Awards in 2007. Since then, the book has been published in Arabic, English and Russian with further translations planned.
Camillo Pastillo – a children’s handbook for understanding chemotherapy
Said is not heard, heard is not understood, understood is not accepted! Doctors may think they have said everything, but this does not mean that the patient has understood the full message. The book titled Camillo Pastillo, aims to fill the gaps left when what is said is not heard, understood or accepted. It deals specifically with the effects and side effects of chemo therapy. A round pill in red rubber-boots called Camillo Pastillo does not want to be spat out by the children again and comes to life because it has so much to explain to the children. Camillo Pastillo talks about children’s cancer and the authors introduce a range of chemotherapeutic agents in a language that children can understand, and explain how they affect the body, why they are administered and what side effects to expect.
The result is a better understanding of the effects and the side effects of cancer medicines. Hopefully it will make the many tablets easier to take and the illness easier to overcome.
Distributed through the Children’s Cancer Help Parents’ Initiative and free for children affected.
Authors
Mag Eva Morent
Mag Danielle Willert
16A, 14 Beatrixgasse
AT-1030 Vienna, Austria
