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Old 12-01-2006, 12:23 AM
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Default 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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Old 12-02-2006, 02:17 AM
hankbartenbach hankbartenbach is offline
Senior Member
Join Date: Oct 2002
Location: Nebraska
Posts: 533

Hi Liesbeth,

Congrats on the study completion, and haveing part of it go to Seattle.

I can not wait to see the results that you found.

Thanks for the good news.

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Old 12-02-2006, 02:40 AM
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Thanks Hank!

Have a look on the homepage at Recent Medical Papers and Research:

"Everyone Deserves to Look Normal":
The Communication of Uncertainty, Support, and Information in an Online Community for Families Affected by a Vascular Birthmark

Missy also posted a link in announcements.

You'll recognize yourself as "the heavy poster who skewed the data" :-)

Happy reading, everyone: please ask any questions you may have!

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Old 01-03-2007, 05:57 PM
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This project sounds very interesting, I wish I would have known about VBF at the time of the survey. I am the proud mom of an almost 3 year old little boy with extensive PWS, and I have searched for a support group of some sort (anyone who has been there) since mason's birth. It is a sad thing that information is so hard to find on this subject-- it seems that each affected family has a multitude of questions and trouble finding the answers...keep up the good work!
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