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
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.”

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