Background: Juvenile Idiopathic Arthritis (JIA) is a chronic inflammatory disease characterized by persistent joint inflammation that manifests as joint pain and swelling and limited range of joint motion.Theability to communicateisan importanttherapeutic instrumentin order to achievea good qualityoflifein childrenand adolescentsaffected by this disease. Objective: To build a book to explain Juvenile Arthritis to newly diagnosed children, starting from the narratives of currently ill children. Methods: Book's development followed a socio- constructivist approach and occurred throughseveral stages, which included: designing of a comic-based workbook; conducting a workshop with ill children to listen to their experience; collecting and organising narratives into a children's book; adding physicians' explanation; consultation with parents and medical practitioners; design of the final product. Results: All stages led to meaningful enhancements to the book. The socio-constructivist approach and the workshop's open and warm climate allowed children to express their conception of the illness and to listen and understand their peers' points of view. Paediatric practitioners contributed to the project and provided clarity to the book and helped to guarantee that it would be scientifically solid and usable within the paediatric setting. Conclusion: Written material addressed to children needs to be developed with a systematic methodology taking children's voices into proper account. This can be achieved using a socio-constructivistapproach and through a proper listening setting. Practice implications: The methodology described here can be used as a guide for the development of similar materials, using children's experiences as a starting point.

CONSTRUCTING AN EXPLANATION OF ILLNESS WITH CHILDREN: A SAMPLE CASE STUDY OF JUVENILE ARTHRITIS: "MARIO AND THE ARTHRITIS"

CAPURSO, Michele
2015

Abstract

Background: Juvenile Idiopathic Arthritis (JIA) is a chronic inflammatory disease characterized by persistent joint inflammation that manifests as joint pain and swelling and limited range of joint motion.Theability to communicateisan importanttherapeutic instrumentin order to achievea good qualityoflifein childrenand adolescentsaffected by this disease. Objective: To build a book to explain Juvenile Arthritis to newly diagnosed children, starting from the narratives of currently ill children. Methods: Book's development followed a socio- constructivist approach and occurred throughseveral stages, which included: designing of a comic-based workbook; conducting a workshop with ill children to listen to their experience; collecting and organising narratives into a children's book; adding physicians' explanation; consultation with parents and medical practitioners; design of the final product. Results: All stages led to meaningful enhancements to the book. The socio-constructivist approach and the workshop's open and warm climate allowed children to express their conception of the illness and to listen and understand their peers' points of view. Paediatric practitioners contributed to the project and provided clarity to the book and helped to guarantee that it would be scientifically solid and usable within the paediatric setting. Conclusion: Written material addressed to children needs to be developed with a systematic methodology taking children's voices into proper account. This can be achieved using a socio-constructivistapproach and through a proper listening setting. Practice implications: The methodology described here can be used as a guide for the development of similar materials, using children's experiences as a starting point.
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Utilizza questo identificativo per citare o creare un link a questo documento: https://hdl.handle.net/11391/1353728
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