Health Gateway Program  

At Tutu's House

“Exploring health information on the Internet"

Online Support Groups

Individuals with the same medical conditions are banding together in online support groups that meet in chat rooms, use dedicated message boards and newsgroup forums to share medical information, receive and give emotional support, and, in general, help one another live with their condition.

An Internet Newsgroup is a type of electronic “place” where people with similar interests can exchange thoughts, opinions, experiences and ideas. Health- and support-oriented newsgroups offer a way to join an active network of self-helpers in an ongoing discussion of just about an imaginable health-related topic of special interest to you, including adoption, asthma, cancer, depression, diabetes, general health etc.

Newsgroups differ from "chat rooms" in that they are not "real-time." They work like this: John "posts" a message (a letter, an essay, a question) to the newsgroup. That message gets distributed all over the world. It'll be sent to thousands of different "news servers”, archives of posts where it is kept for days, weeks, or months, depending on how the news server is set up. Then, anyone can post replies to John's message if they want, or just read it, along with other people's replies.

Of course, not all information passed around at online support groups is accurate. Some may even be dangerous, should someone choose to ignore his or her current therapeutic regimen in favor of a false cure.

Support groups are especially helpful for people in six categories:

1)     Rare diseases. In the past, few if any groups were available for people afflicted with rare diseases. Only the largest metropolitan areas could possibly supply a sufficient number of patients to form a group. Net-based groups join people from all over the world, making the formation of groups for rare disorder relatively easy.

2)     Rural communities. Many individuals in rural areas can not find enough people to form a group for even relatively common conditions. Also, many rural areas are so spread out that attendance in a group may require hours of travel, making attendance sporadic at best.

3)     Disabled. Many disabled people don’t drive or cannot leave their houses without assistance. Forming a live group of patients who have a disabling condition is therefore very difficult. Net-based groups join disabled people everywhere.

4)     Caregivers. People who are caring for another person, such as a child, spouse, or patent, often can’t get away in the evening to attend live support groups.

5)     People who need or want to attend groups very often. In some cases, online support is used to supplement live support. This is especially true in addiction support groups. Many people do not have the time to go to a group the 7 days week (sometimes 2 times a week) they may need during tough times. Instead they may go to a live group as often as they can, say three or four days a week, and attend an online group on the other days.

6)     People who prefer anonymity. Some people feel more comfortable attending an online group because it is anonymous. Some people, especially those with addiction or psychiatric disorders, are afraid of meeting acquaintances or people who may know their acquaintances at a group.

(Source: Medicine On The Net, May 1999, Volume 5, No. 5)

The largest newsgroups are international and have hundreds of regular participants ("posters"), and tens of thousands of regular readers. There are dozens, if not hundreds, of online self-help forums. Finding one that meets an individual’s needs only requires a little browsing.

One place to start a search is a search engine like Yahoo! (http://www.yahoo.com) or HotBot (http://www.hotbot.com). For example, searching Yahoo! For “diabetes” and “discussion” led to four possibilities. Searching Yahoo! For “diabetes support group online” yielded another four results.

Web Sites With Online Support Groups:

American Self-Help Clearinghouse Self-Help Sourcebook Online (http://www.mentalhealth.net//selfhelp/) includes a searchable database that houses information on more than 800 self-help support groups. While the vast majority of them are live groups, there are a number of online ones as well. The site also includes information on starting your own support group.

The Ability to Share (http://www.ablelink.org/) is an online support network that connects young people with disabilities or chronic illness to disabled and non-disabled peers and mentors. It provides opportunities to form friendships, build self-confidence, exchange information, and share hope and encouragement through email messages. Valuable resource for families and friends are also available.

Deja News (http://www.deja.com) provides archives of newsgroups to search for advice or opinions from others.

Drkoop.com (http://www.drkoop.com) provides discussion support groups in 9 categories: Physical Conditions, Mental Health, Parenting & Children’s Health, Aging Healthy, Women’s Health, Addiction & Recovery, Men’s Health, General Health and Blood Donation, as well as patient education material on a wide range of topics.

Liszt’s Usenet Newsgroups (http://www.liszt.com/news/) provides a list of over 30,000 Usenet newsgroups.