The internet and online communities

This blog post is about paediatric online communities. There are three online communties described and linked below. Following that are ethical considerations when using an online community discussion forum and benefits and limitations these have.

http://raisingchildren.net.au/forum/Forum133-1.aspx

The intended purpose of this site is to provide a discussion forum for parents and carers of children with autism spectrum disorder (ASD). The blog is interactive however you do need to create an account and log in to contribute to discussions. An example of what people can contribute is evident through a recent post about a family whos son was recently diagnosed with ASD. They are asking for help interpreting some of the hospital results and asking ‘where to from here’. People are responding with kind messages and support.

http://www.cerebralpalsyforum.net/

This discussion forum is active with a range of people- people with cerebral palsy (CP), carers, friends and others interested in CP. There is a wide range of discussion about recent diagnosis, links to other resources and mobility tools. You need to create an account and log in to contribute to discussions.

http://www.downsyn.com/phpbb2/index.php

This forum is designed for those where someone they love has Downs syndrome. There is a huge variety of forum topics to post in. These include general information, dual diagnosis, education for the person with Downs syndrome and a ‘Brags’ section to brag about how well your child is doing. You need to create an account and log in to contribute to discussions.

I believe that people contribute to an online community to find people who may be dealing with some of the same things in life. It is a reciprocal exchange of information. Ethical considerations that need to be taken into account are that the information is not from a medical source- it is a personal, subjective experience. This can provide very beneficial/useful information but may be contradictory to what the health professions say. With an online community/discussion forum there is also a lack of accountability due to being relatively identity free. While all of the sites will eventually remove any post that is malicious or hurtful, once something is on the internet it is hard to fully get rid of.

Benefits of online communities/discussion forums are that it allows people to talk to others who may be experiencing similar things. Some people may feel embarrassed or intimidated by their health professional and are unwilling to talk to them about issues they may be facing. It can provide a great deal of support for people.

Limitations could be the accuracy of the information and the relevance for one child to another. (As in what may work for one child may not for another).

All in all I believe that online communities/discussion forums are predominantly beneficial offering information, ideas and support.