Background Chronic illness in a child is a complex reality for all involved. The child often feels confused and afraid. He doesn't understand why he is sick and in pain, he worries about the doctor and hospital visits, as well as the medications and shots to which he is subjected. Parents are unsure how the illness will affect their child, and how to best prepare him for future challenges. Both parent and child are not always sure how to communicate to the Doctor their needs and concerns. Communication, however, between parent, doctor, child and health professional is critical for the effective treatment of the disease.
Objectives This book attempts to open lines of communication between parent and child, to educate, give coping tools, and a voice to the young patient in a fun and optimistic manner. The book targets many of the children's challenges through identifying with Kipo, the young monkey who also has JIA.
The objectives: 1. To give the child strength and tools to deal with his illness. 2. Improve compliance through a better understanding of treatment.
Methods A list of challenges young children with JIA face was compiled through meetings with parents, doctors and children. Next, a list of coping strategies was produced based on discussions with parents and health professionals. The story addresses the challenges and methods of dealing with them in a fun and optimistic manner through young Kipo's routine. Included are also messages addressed to the parent and doctor. To keep the child an active part of the story, thus allowing him to voice his concerns and discover coping skills, the story line requires active participation through “reading the pictures” which accompany the text. (The book includes a “how to read” guide). The back page includes a brief description of the illness, as well as other useful web addresses: parents associations, PRINTO, etc'.
Results Working jointly with the illustrator an illustrated children's book in 3 different languages (Hebrew, English and Arabic) was published. The book addresses the challenges and difficulties of a young child with JIA through the story of Kipo the monkey who is also ill. Included are a visit to the doctor, getting an injection, going to the physiotherapist, etc. The book is distributed free of charge though the paediatric rheumatologists to the families, and is received very enthusiastically by parents, children and doctors. The children read and reread the book sharing it with family, friends and kindergarten classrooms. They use the terminology introduced in the book to describe their own physical and emotional feelings, and adopt coping strategies used by Kipo.
Conclusions The success of the book motivated us to allow for a more international distribution. The illustrations and the text are available allowing it to be used by any national group.
Acknowledgements Inbar, Mifrakim Zeerim, ENCA, Dror Adam (illustrator), anonymous unaffiliated donors, doctors, parents and translators.
Disclosure of Interest None declared