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.
Benefits of online support groups
Online forums and self-help groups can provide this kind of support. At their best they can provide moral support and comfort, making you feel less alone or isolated. They work well when:
- They provide moral support and understanding in a safe, responsible environment
- They reduce anxiety about the diagnosis or symptoms.
Choosing the right group
However, some parents have told us that online support groups or forums aren't always positive places. They don't work so well when:
- Individuals within the group encourage others to use alternative therapies rather than prescribed medication
- Moderators are not monitoring the group suitably
- 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 join online groups, I'd say be selective and make sure it meets your needs."
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.
Our Facebook group for parents
Join our private Facebook group to meet other parents and carers with similar experiences, share your views and have your voice heard. Find us on Facebook or email firstname.lastname@example.org for more information.
CLIC Sargent's online forum
CLIC Sargent has a safe and supportive online community called The Forum. You can create your own profile, share your story and meet other parents on our moderated message board.
- Join CLIC Sargent's Forum and meet others
- You might not be ready to connect with other parents yet but you can read their stories and experiences
- It's important to build a support network. Make sure you reach out to your friends for help with these tips
Updated February 2017, next review due February 2018.