Band-aides and blackboards: When chronic illness goes to school
Joan Desmond Fleitas, Teachers College, Columbia University, United States
Teachers College, Columbia University . Awarded
This project involved both a qualitative investigation of the worlds of children with chronic illness, and the formative evaluation of a health education strategy designed from the data gathered. The strategy was multi-focused and designed to sensitize others to what it is like to grow up with medical problems. Housed on the universal platform of a website, it was available to children and adults who had computer access to the Internet through their schools and their homes. The co-authors of this effort were those children around the world growing up with long-term medical problems who agreed to share their stories. The narratives are poignant, varied, and speak of the stigma that so many of them have experienced. Riding on the coat-tails of this stigma, the deep desire for normalcy had a firm hold, and the comments of the children gave it healthy voice.
A comprehensive website was built with the materials gathered from the children. Their discourse crafted a web that sparkled, and in its luminance continues to attract authors and visitors from around the world. The site contains their stories, their comments, their poetry and their art. Through these media, the needs and dreams of children from around the world were exposed. In response to them, strategies of inclusion and empowerment have been designed to make the world a little softer for this very special population.
The development of the website was enhanced by an ongoing critical review of its pages, review that was actively sought from children, parents, health professionals, educational specialists, and Web design professionals. An evaluation of the impact of the site was incorporated into the pages, and strategies were designed to address the feedback received.
Fleitas, J.D. Band-aides and blackboards: When chronic illness goes to school. Ph.D. thesis, Teachers College, Columbia University.
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