The Great Connection

Online support groups flourish, providing ample meeting time, space, and care.

BUNMI ISHOLA
PUBLISHED: 1:00 AM, TUE SEPTEMBER 7, 2010
Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
Even with 50 sites and 100 satellite  locations, one of the largest providers of psychosocial support for cancer  patients and their loved ones couldn’t meet the needs of everybody seeking support and solace from the struggles of cancer. The demand was too grand, the need too deep to bring help that would make a difference. 

“There are so many patients and families who need support who either live too far or are too ill to get support services,” says Mitch Golant, PhD, senior vice-president of research and training at the Cancer Support Community (CSC), a union of The Wellness Community and Gilda’s Club.

In 1998, The Wellness Community began running online cancer support groups. In the 12 years since, the CSC has seen a surge in the number of people who use its online groups, and other organizations have started similar online support groups. 

Surveys by The Pew Research Center suggest that the number of people served by online groups is high. Last year, more than 60 percent of Americans used the Internet to find health and medical information, and 6 percent of this group said they participated in some form of online discussion group or mailing list. 

Participants in online support groups don’t have to worry about inconvenient meeting locations or times; childcare or caregiver concerns; or small patient population numbers because of the rural setting or rare cancer type. Some researchers have also described these groups as an “equalizer” because of the anonymity online support groups provide—there’s no age, gender, or social status visibly apparent to other members.

People can choose from a variety of options—message boards, e-mail lists, chat rooms, live chats. Some online groups are professionally managed. Some are peer-mediated. Most groups are accessible around the clock, but some occur in real time. 

“There are different choices and formats for online support, and each has a niche,” says Paula Klemm, PhD, RN, assistant director of the School of Nursing at University of Delaware. “It’s helpful that there are so many choices to fit people’s different needs and preferences.”

Klemm conducted a review of research literature on online cancer support groups in 2003. She found that information seeking and sharing, social support, and personal empowerment were three major dimensions of online support groups, making up almost 80 percent of the types of messages posted in online cancer support groups. The research showed a difference between what men wanted and what women wanted. Seeking and giving information were priorities for male participants, while giving and receiving support and encouragement were priorities for women.

Both were a priority for Lois Dickerman. Her husband, Dick, was diagnosed with stage 4B esophageal cancer in 2004. 

“I’d never heard of esophageal cancer,” she says. “So, I just basically went online, and there was something called the Esophageal Cancer Group.” 

This Esophageal Cancer Group was managed by the Association of Cancer Online Resources (ACOR), which began in 1995. Today, ACOR has almost 160 mailing groups available and hosts a real-time support community on Oncochat.org.

You get a lot more contact and kind of a satisfaction or comfort level of knowing your family is not alone in all this.

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