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Need tips from you parents - studying chronic condition in children

Original post made by rouja , another community, on Oct 24, 2011

I'm pursuing my Masters of Fine Arts in interaction design at California College of the Arts. For my thesis, I've chosen to focus on the physical and emotional challenges faced by children with chronic condition and explore ways technology can be designed to provide positive and encouraging interactions for specific ailments.

Per National Institutes of Health, asthma continues to be number one leading chronic condition in children in US. Although the rise of information accessibility, social networks and health applications have dramatically changed how families with children diagnosed with asthma cope and self-manage, there seems to still be some missing opportunities to better facilitate these families and children to self-treat. My passion for improving the quality of life of these families and children led me to focus on this topic for my research.

Here is the challenge: you'd think with 20 million americans affected with asthma and the majority of them being children between 4 and 14, I'd have an easier time to reach these families. But that hasn't been the case. I've been speaking with clinics and some schools in the neighborhood and they haven't been willing to help me access my target audience. I'm not asking my resourceful contacts at schools, clinics and childrens' hospitals to pass on the contact information of these families; I'm only asking them to give me permission to post posters and pass on post cards so the families who ARE interested can participate in my design research. But, no. I can't even do that.


I'm curious to know what are some thoughts of you parent/s. Would you be willing to participate in a study which is more like playing games and doing some group activities, not any clinical trial or using drugs or any of that? Why or why not?


More information:
My project is not aimed at medical remedies or cures, but improving the quality of the child's life through re-framing their condition in positive and empowering ways. How can intelligent design motivate the child to keep up with medication and therapy? How can everyday toys, objects, and activities be augmented in ways that encourage and reward the child's abilities rather than expose her disability?

Thank you.

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