Dr Keep said for people considering joining an online support group, it is important to read a group’s guidelines and note their privacy settings. Also, shop around.https://www.abc.net.au/news/health/2018-02-27/how-social-media-is-connecting-people-living-with-illness/9484574
“Look at a number of different communities, look at their terms of conditions and their rules of engagement,” she said.
“Does it have a good sense of community? Or are people putting each other down? Do people get positive, supportive messages when they’re responding to others and making their own posts?”
It is also important to be aware of the risks of misinformation or false advertising, especially given patient support groups on social media are rarely run by qualified medical professionals. So while they can be a good place to get support and make connections, you should seek medical advice from your doctor.
But the benefits of online support groups can be significant, Dr Keep said, especially for people not able to access support offline.
“I think the support that people receive out of these online communities outweighs the potential risks, especially when there are systems in place to try and prevent those risks,” she said.
“It’s the value of talking to someone whose been through it all before, and can make things less scary, however awful it may be,” she said.