One area I believe that online communities can really, really make a difference is with parents who are struggling with sick kids. Being up in the middle of the night, worrying and then being able to get online and chat/post about your concerns with other parents who are also up in the night worrying helps assuage those concerns. All those unanswered fears and questions and doubts that are disappear during daylight are impossible to ignore at 3am!
An example of a health community for children that has moved from portal and information dissemination to community and conversation is Children with Diabetes.
“Children with Diabetes is the online community for parents, kids, adults, and families living with type 1 diabetes.”
The forums have had up to 85 people at a time, there are polls (they give you the results of previous polls), organised Chats, headlines and links to articles on diabetes, studies and research, an impressive support Diabetes clinic section and so on.
But the most important quality I found was a sense of positivity and humour. Not only do the forums allow parents to share information (yes from time to time it will be incorrect, but that usually gets corrected, wiki-style), but there is a humour section – humorous tidbits and parent humour. And the I BELIEVE bracelet is for “I believe there is a cure”. A really fantastic use of content management makes it easy to find information on the home page. and look at this – Family Support Network.
The Family Support Network includes 1860 people and 1306 children from all 50 US states and 52 countries.
The Family Support Network is a database of parents, children, teens, adults, relatives and friends willing to exchange mail or e-mail about diabetes. If you’re struggling with a new diagnosis, have a question that you can’t seem to answer, or want to help others, this is the place. Once you’ve found a friend, click on their name to see their personal information (and photo) or click on the ‘Send a Message’ link to send them an e-mail.
Search for a Friend Find someone else just like you, whether you have diabetes or care for a child who does. Find yourself if you’d like to change your information.
Become Part of the Family Support Network Join the other parents, teens, kids, adults and friends.
These people really understand the value of community and people helping people. All in all, an important and worthwhile site!