Lining Up for Online Support

After several months of long-distance caregiving, Linda Goin moved from her home in La Grange, Ky., to Virginia to care for her mother after a diagnosis of advanced bile duct cancer. Shortly before her mother’s death, her father received a diagnosis of bladder cancer.

“I didn’t have a sense I was a caregiver,” she says, so she didn’t actively search for caregiving resources or support. Three months before her mother’s death, she began writing gratitude lists on her personal Facebook page, which she says became a form of journaling. Eventually, people began responding with comments and questions about their own caregiving situations.

It was only after the day-to-day caregiving duties subsided that she became involved in an online caregiving community, offering help and support to those new to the role.

Linda Goin found it helpful to express herself online while caring for her parents, who both had cancer. Photo by Todd Pellowe.

“If I had to do it over again,” she says, “I would have gotten involved early on and used it more.”

In fact, a growing percentage of the millions of Americans who care for loved ones with cancer use online forums to vent their feelings, ask for advice and seek emotional support. While 20 years ago help for caregivers came almost strictly from in-person support groups—which required driving somewhere and did not always address relevant issues for all members—there has been a sizable shift over the past decade toward finding, connecting and building upon virtual support systems.

In a survey by the Pew Research Center, 52 percent of caregivers responded that they had participated in an online social activity related to health, and this number is expected to grow.

Such involvement may provide measurable help to caregivers. In a small 2014 study, family caregivers of patients with chronic disease experienced fewer depressive symptoms and improved quality of life after participating in professionally facilitated or moderated online support groups for 12 weeks.

CONNECTING ONLINE

Shelley Hopkins turned immediately to an online community for support and knowledge after her husband was diagnosed with pancreatic cancer in October 2013.

“I live in a very rural area where in-person resources are limited,” she says. “After his diagnosis, it was natural that I begin searching for support resources through social media.”

Since then, Hopkins has embraced the rewards that can come with being connected online. While an in-person meeting might not always be feasible for her, a couple of minutes on the computer or even a smartphone can provide almost immediate support and advice.

“I post when I can, and I check back for feedback or comments or new posts at a time that is convenient for me,” she says. “The conversation need not be carried on in real time.”

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.”

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.

KEEPING PRIVATE

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.”

CHOOSING THE RIGHT AUDIENCE

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.’”

A caregiver may be perceived as oversharing if he or she uses only one online outlet, particularly one not specific to the caregiver community, such as a personal Facebook account, Brown cautions. If the caregiver only posts about difficulties on such a site, friends and family may not know how to help and, over the long haul, some may distance themselves.

“You always want to keep in mind your audience. Sometimes on Facebook, you’re not reaching the right audience,” she says.

Brown recounts an example from one of the CareGiving.com members who was struggling with her emotions during the holidays. She posted her feelings to her personal Facebook page and someone mentioned how negative she was being.

“She posted the same thing on CareGiving.com and within an hour had several comments about how they understood where she was coming from,” Brown says. One commenter replied: “You’re not being negative, you’re being real.”

While posting to social media involves navigating the concerns of going public with private information, it can also represent an advantage over in-person support groups. Online, caregivers can sometimes share their feelings more openly.

“There’s something about talking about a very personal situation in a support group where everyone sees who you are: You lose some of that privacy,” Brown says. “Support groups are great, but there is something about that inherent anonymity in social media that can be very comforting. It can make it easier to talk about what is really going on.”

While using social media can offer an added layer of support, Brown recommends not using it exclusively. Balancing it with in-person support groups, an involved circle of friends or family, or just having a person to talk to on the phone or over coffee can help.

“Sometimes a virtual hug is no substitute for the real thing,” Hopkins says.