Lining Up for Online Support

Online support groups are growing in popularity as an outlet for stressed caregivers.
BY ELIZABETH WHITTINGTON
PUBLISHED: FEBRUARY 18, 2015
Denise Brown, founder of CareGiving.com and moderator of a regular chat on Twitter about caregiving, says it’s the connection and convenience of interacting with others who understand your situation that makes it so powerful.

“As a caregiver, you can feel detached from your community—however you define a community: your workplace, family, neighborhood, church — because of caregiving,” she says. “If you can go somewhere that everyone else uses and find a community, it’s very comforting. It normalizes the experience of caregiving; it provides an interesting way to talk about your day without worrying about filtering your day.”

For Hopkins, one important lesson was to rely on different forms of social media for her needs. For caregiving concerns, she goes to CareGiving.com. The pancreatic cancer discussion board at CancerForums.net provides medical information on her husband’s cancer. She uses WhatNext.com for general cancer support and encouragement.

“I actively use seven different social media, and they all serve different needs,” she says. “If I can’t sleep at night, I go to the chatroom of the American Cancer Society’s Cancer Survivors Network, because I know there will be a group of people carrying on a lively discussion.”

[Read "Being Social" for social networks available for patients and caregivers]

But what if a caregiver isn’t especially computerliterate, and joining even one or two online support groups sounds overwhelming?

Michael Sola, executive vice president of Fight Colorectal Cancer, said the group recently hosted several TweetChats and discovered that some caregivers were uncomfortable with the technology.

“When we first were explaining the benefit of using Twitter to share their voices, it wasn’t until they did their first tweet that they got over the fear. Same applied to Facebook. Our recommendation for newbies to the genre is it’s OK to watch and listen. It’s OK if you don’t like the medium,” he says. “Try something that you’re comfortable with, but try. There is no one tool or one medium-fits-all approach. In many cases it’s just about taking that plunge.”

Danielle Burgess, director of communications at Fight Colorectal Cancer and a stage 2 cancer survivor, says caregivers who are not currently using any form of social media could choose a trusted organization, like the American Cancer Society or Fight Colorectal Cancer, as their focus as they begin exploring different forms of social media. She suggests that caregivers look at what the organization has to offer, starting with its website. “Most community and support groups will be engaging in many ways and offer all types of trusted resources, all housed and linked from their website.”

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