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Liesbeth 12-01-2006 12:25 AM

Research study results available
Hi everyone,

It's been a while since I last posted. I hope everyone is as well as can be!

For those who donít know or remember me: I am the mother of an almost 3-year old girl with an extensive leg PWS, and also a Masterís student in (health) communication at San Diego State.

Last Spring I announced my research study on the uncertainties that people affected by a vascular birthmark face, and how they find information and support. For this purpose, over 30 VBF visitors volunteered to take my online survey. I also content-analyzed a sample of messages posted to this board, to determine the most important discussion topics.

The paper I wrote based on this research is now completed! It will be made available on the VBF website in the next few days. One of the most important things my study found is that on-line communication about vascular birthmarks on the VBF discussion board most often (in 56%) concerns "information quality."

I am happy to announce that a smaller version of the paper has been accepted for presentation at the health panel of a large communication conference in Seattle this February. Already, this means more awareness for vascular birthmarks.

For my thesis, due this fall, I plan to focus more narrowly on people with PWS and include their discussions in other web-groups as well. More about this later.

Thanks so much everyone who participated in the project! I truly hope that my studies will benefit our community.


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