Support groups have traditionally been a place where people who are dealing with a disability or a personal situation or some kind of issue are able to discuss their lives, the effect of what they are dealing with on their lives as well as their family and friends and support groups are a places where people find information and peer support. Many times someone goes to a support group and for the first time they come face to face with people who have gone through what they have and because of that, people find a level of understanding, empathy and support that may not exist outside of the group.

Our feature is to highlight useful and interesting websites and this month we have selected three sites that are online support groups for individuals with traumatic brain injury and related conditions.

Since the advent of the web and the browser, people have been finding support online. As we have noted before in this series, since the very beginning of the web there has been a long-established community of survivors who use the web as well as websites for information and support. These online support groups come in the form of message boards, Listservs or email lists and chatrooms. Our focus here is on message boards.

Our three sites are good examples of how support groups for TBI on the web are being used and thriving.



tbihome.org

tbihome.org has been online since 2000. It uses the traditional message board software that was so prevalent from the early days of the web. Since its inception tbihome.org has a history of being an active board and remains so. tbihome.org has twelve different message boards including a general TBI discussion board, a support board, a caregiver board, a survivor board, an employment board and several others. There are also archives of older message threads.

This is a hopeful message board. Reading the postings you find a lot of people trying to rebuild and get on with their lives after a TBI and a lot of positive feedback in the form of support and information. If you are a family member of someone who had a brain injury recently and want some insight into what some of the struggles will be for them in the future you can get a good sense of that from the tbihome.org members. If you are a service provider working with individual’s with TBI you will find the same insight.

There are also other features on tbihome.org including links to other TBI resources and members pages where people are able to post their own personal story of injury, and recovery along with pictures if they choose. Each story is in the person’s own words and is unique. Some of the stories are written by spouses, and family members.



BIA4KIDS

BIA4KIDS (Brain Injury; Alternatives 4 Kids) is a Yahoo! Group that provides support and information for parents of children suffering from Brain Injury and related diagnosis. In order to access this group beyond the homepage, you must first join the group. Both Yahoo! and MSN gives people the ability to start groups, but also  the ability to manage who can join the group and who can post messages. Likely, you would have to be a parent of a child with a brain injury in order to be able to join BIA4KIDS. This allows the group to consist of only persons who have similar issues and allows for greater privacy for the participating members. It also eliminates spamming.

Yahoo! and MSN groups can be very active and just like message boards its members can provide support and information. When you join a Yahoo! or MSN group you can choose to receive new postings by email either electing to receive each message individually or in a daily journal form. You can also elect to not receive any messages and read them by actually going to the group site.

If you have never visited a Yahoo! group here are some tips: Above the description of the group on the homepage you will see a display of recent activity that will tell you if there has been any activity in the past week as well as how many new messages have been posted. Below the description is a table that will show you the monthly activity in the history of the group. BIA4KIDS was established in July of 2005 and you can see their history from that date up to the current month. Also in the left-hand column you can see how many members a group has. These tools let you see how active a group it is as well as if there is current activity in a group - something you want to know before you join. Sometimes groups become inactive over time, or abandoned by the group owner. If you see a lot of activity over time it is a good indication that you are joining a healthy, ongoing group community that has good participation by its members. Based on the information on the homepage it's clear that is the case with BIA4KIDS.

We have featured one group here for illustrative purposes; however, it may not be the kind of group you are looking for. You can easily do a search for groups about brain injury (or any topic) at the Yahoo! Groups main page. You can also search MSN groups on their homepage. northeastcenter.com  also has a page of links to active Yahoo! and MSN groups here. BIA4KIDS looks like an informative useful group so if you are the parent of a child with a brain injury this group may be one you want to investigate.



TBI Support Group

TBI Support Group is a group offered on the Daily Strength website. Daily Strength is a social networking site. An outgrowth of Web 2.0, it offers the same ability of message boards and Yahoo! Groups but with a lot more tools for the individual participant to use.

Not unlike Face Book or MySpace, TBI Support group is not a mere posting of messages, it gives member the opportunity to post profiles about themselves, images, and how they are feeling. They can also have "avatars" which can be an image of themselves or a representative image such as a kitten, cartoon character, etc. Members can also post journals, similar to that of a blog and the feedback is more personalized because other members also include images of themselves, personal profiles and journal, postings.

The TBI Support Group appears to be open not only to TBI survivors, but also caregivers, family members and persons with related conditions. Some of the members’ pages have a lot of information like a Face Book of MySpace page, including a section of “friends,” a “hugbook,” and other Web 2.0 features. You can see listing of all members (when you put your cursor over an avatar a small box opens up telling you some brief information about each person), you can also see who is online at the time you visit the site, who the newest members are, members that are in need and even chat with members who are online.

TBI Support Group has postings that are similar to message boards and Yahoo! Groups, the however, the availability of tools gives the group more of a feel of an active community since you have the ability to communicate with members on a number of different levels. Some of the members have had serious brain injuries with extensive rehabilitation and long recoveries. It is impressive to see how these individuals use the group and the tools available to them and how much cross communication goes on between members - just like people on Face Book and MySpace. TBI Support group is a useful web community for TBI survivors.

This article is only a thumbnail look into online support for individuals with traumatic brain Injury. There is more out there but you have three good starting points in your search for such a community. tbihome.org, BIA4KIDS and TBI Support Group are our sites for the month. They are just a click away and don’t forget to bookmark them so you can visit again.


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