Parents have told us that they feel their old lives stop when they receive their child's diagnosis. Some feel they benefit from talking to people with similar experiences.
Online forums and self-help groups can provide this kind of support. At their best they can provide comfort, making you feel less alone or isolated. However, parents have also told us that some groups may not be so helpful.
Parents have helped us create these pros and cons of online support groups, blogs and forums.
If you join online groups, I'd say be selective and make sure it meets your needs.
They work well when:
- They provide moral support and understanding in a safe, responsible environment
- They reduce anxiety about the diagnosis or symptoms.
They don’t work so well when:
- Individuals within the group encourage others to use alternative therapies rather than prescribed medication
- Moderators are not suitably monitoring the group
- Posts are highly negative without being balanced by positive feedback
- Posts claiming to be factual prove to have no scientific basis
- You feel pressure to donate money or buy a product.
If you don't feel comfortable with a group, forum or blog you can always leave. If in doubt, talk to your CLIC Sargent Social Worker.
Content updated November 2015, next planned review 2016.