For this blog I will be posting about three different online communities that offer support and networking for people with Traumatic Brain Injuries. I chose this topic in particular as it was the setting for my first placement and so holds particular meaning for me. The availability of online healthcare information and support has seen many individuals and healthcare providers start communities where individuals can go to learn more about their impairments and connect with others whom share their disabilities. Social isolation is often a common side effect of TBI and can lead to depression and other negative side effects. These internet applications can be useful for occupational therapists during therapy sessions, or as a means for furthering functional independence (Griffiths et. al, 2003).
The first online community is a Brain injury support group: http://www.dailystrength.org/c/Brain-Injury/support-group. On this site people can chose to post anonymously on issues they may be having relating to TBI, and receive feedback or support from other posters. This site allows members to make contact over great distances, as it is a worldwide posting and can generate understanding and unity between its posters. It gives observers the opportunity to participate or not as they chose and does not require money to join. There does not appear to be any professional advisor's however, in the way of health professionals and I was unable to detect any moderators for the site. This means that the posts are open to abuse, which could be detrimental to its users.
The Second online community is the Brain Song Community:http://brainsong.site-ym.com/ , which is an online community for female survivors of TBI. This is a non-profit organisation, with a board of directors complete with a mission statement. It offers resources and information for members, and requires its posters to sign up with a username and password. Again this site is a worldwide posting, but I imagine many of its members are from the USA as it has its origin there. As this site has built in security features you are unable to browse through postings without first joining the community. This has advantages in that you know the site is being moderated and is unlikely to be abused.
The third online community is the TBI survivors worldwide community: http://tbisurvivors.net/. This site has information on the causes of TBI and a Facebook link where they promote brrain injury survivor advocacy, information, networking, peer support and resource exchange. Although they are not specifically an online community themselves they do give guidelines for rating other brain injury websites and online social communities. This includes criteria on who operates the site, your privacy, information accessibility, activities of the site you should be told about up front and honesty and candor. These are all relevant and important things that one should consider when posting personal information onto a worldwide site and I think that this site is important for people to read and understand before doing so, which is why I have included it on my list.
The anonymity that these sites provide allow posters to contribute and ask questions online that they may be reluctant to do face to face with a health provider or family member. Knowing that there are other people out there sharing similar experiences can give a great sense of relief to some, and the advice and comments shared can break down the isolation barriers that can lead to secondary illnesses such as depression.
Information on these sites is shared usually via two ways. The first is one-way information where information is presented in a way where it can not be commented on or interacted with, this is usually based on medical information where there is no expected reciprocation. The second way information is shared is via discussion and chat rooms, where information is reciprocal and the poster can share their thoughts, feelings, opinions and experiences on a topic and expect feedback from moderators and other posters.
References:
Griffiths, M., Davies, M.N.O., & Chappekk, D. (2003). Breaking the stereotype: the case of online gaming. Cyber Pschyology and Behaviour, 6(1), 81-91.
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