Lining Up for Online Support

Online support groups are growing in popularity as an outlet for stressed caregivers.
Still, as they navigate the web, caregivers should consider the source when they read any medical information. Many experiences people share are anecdotal, and another patient may not have the same experience in regard to treatment, side effects and follow-up. Furthermore, information on some websites may be slanted or biased because the person or entity in charge is trying to sell a product. Finally, information may be incorrect because it is outdated, or the person who posted it was not properly informed.

While social media can be a good way to share feelings and experiences and seek emotional support, the best way to get accurate, personalized medical advice is to meet with a doctor who knows the patient’s medical history.


What makes social media so attractive to caregivers, though, can also be one of its drawbacks.

Posting information about a patient’s grueling treatment schedule and specific details about side effects and day-to-day struggles may help the caregiver in receiving support, but the patient may grow resentful if he or she isn’t comfortable with the information being put out there for friends and family. Sharing these details about a patient who is more private, or differs with the way the situation has been described online, may cause a rift in the relationship.

“Like any tool, social media may be helpful but needs to be used with thought and caution,” says Iris Cohen Fineberg, immediate past president of the Association of Oncology Social Work. She suggests that caregivers ask themselves these types of questions: Why am I using this tool? What do I hope to find or experience from this? How much information, especially personal information, should I share? How do I know that the information that I am reading is correct and reliable?

Experts suggest that caregivers begin to discuss their needs for social support early on to find out what the patient would be comfortable sharing, and with whom. There are a variety of privacy settings on Facebook, as well as protected tweets on Twitter and password-protected blogs on various websites. There are also closed Facebook groups, email listservs and private online communities where caregivers can go to discuss what’s on their minds.

“And if you are using social media to ‘blow off steam’ or ‘vent’ your feelings (frustrations, fears, worries), keep in mind that the information might get back to the patient as well,” Fineberg says. “Be sure that you only write something that you are willing for them, and others you know, to see.”


When patients are OK with being discussed online, caregivers may next want to consider whether they are sharing the right amount with the right audiences.

“There is still that worry about oversharing,” Brown says, whether it’s at a holiday dinner or on Facebook. “But when you’re with a (support) group of family caregivers, you can’t overshare, because it’s refreshing to hear someone else talk about their day being similar to yours, which gives you permission to say, ‘Oh my gosh, my day is like that, too.’”

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
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