The Great Connection

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.

In 2003, Golant and others from what was then The Wellness Community published a study looking at the effectiveness of electronic support groups for breast cancer patients. Almost half of the 67 women involved with the study were from a rural or small town. That holds true for the individuals the CSC serves online now, Golant said.

In his research study, Golant found that 67 percent of patients found the online group to be beneficial. The women in the study said they benefitted from communicating with others dealing with similar issues and changing their focus from preoccupation about their cancer to helping others.

“The women in the study with breast cancer, in particular, had significant reduction in depression, significant reductions in their negative reactions in pain,” says Golant. “And they had significant increases in zest of life, spirituality, and finding new meaning.”

CSC chose to mirror traditional groups when creating its online support groups. After enrolling, patients are assigned to a professionally facilitated group that meets once a week for 90 minutes. Times are spread throughout the day and evening to accommodate different schedules and time zones. The only difference is, instead of talking face-to-face, all discussion is text-based.

Online groups are also proving to be an ideal medium to reach childhood and young adult cancer patients and survivors. Not only is this patient population relatively small—many hospitals, clinics, and cancer centers lack the numbers to provide face-to-face groups—but this age group generally spends a lot of time on the Internet.

As a result, many online groups have emerged. For example, CSC developed Group Loop (www.grouploop.org), LiveSTRONG has Planet Cancer (www.planetcancer.org), and the Childhood Cancer Foundation in Canada created Teen Connector (www.teenconnector.ca).

Another online support group geared toward teens is Cancer Really Sucks, sponsored by Gems of Hope, an organization whose mission is to inspire cancer patients and their families. While childhood cancer patients and survivors are welcomed, its purpose is primarily for teens dealing with a family member or friend going through cancer.

Aside from message boards and private messaging, Cancer Really Sucks also hosts a live chat twice a month. These chats are generally teen-led and run. Sometimes, the teens don’t talk about cancer at all but just about what’s going on in their lives.

Using the Internet as a medium for online support groups, however, does pose its challenges. For one, it is impossible to interpret physical or non-verbal cues in a text-based situation, which can lead to miscommunication and conflict between participants. The anonymity and limited social commitment to online groups can also pose problems for professional moderators trying to perform an accurate clinical assessment of a participant’s psychosocial situation.

The Internet also has been shown to have negative psychological effects in users who are overly dependent on it. In some recent studies, depression and social isolation have been associated with increased Internet usage, a danger Richard Hara says his organization CancerCare is well aware of.

“There’s a concern that people who are socially isolated might become even more so if they rely entirely on an online group and sort of don’t avail themselves to some locally available resources,” says Hara, director of online services at CancerCare. Social workers at CancerCare assess individuals before suggesting they join an online group, making sure they have other resources available to them locally as well. Medical and ethical dilemmas also present themselves in online support groups. With groups that are not professionally facilitated, there’s always the danger of false information being passed around and promoted. Klemm believes that researchers are just beginning to scratch the surface of online support groups and their benefits. With so many different formats out there, she still has lots of lingering questions.“Is one format of online support better than the other? Or is one better than the other for certain categories of the population?” Klemm asks. “I think those questions still remain to be answered.”

“It was a source of great information in the archives and of constant communication and reassurance from others throughout the country in the same dilemma,” says Lois. Online support groups can be especially helpful for those, like Dick, with rare cancers and for their loved ones, she says.

“You get a lot more contact and kind of a satisfaction or comfort level of knowing your family is not alone in all this,” Lois says. “There’s a lot you can learn from people who’ve been there, done that.”

After being in the ACOR group (www.acor.org) for a while, she (Dick never made any posts himself) also began to use the online mailing list for grassroots advocacy, another reason individuals often use online cancer support groups. She believed that people weren’t getting enough information about esophageal cancer and joined forces with others from the e-mail list to create the Esophageal Cancer Awareness Association (www.ecaware.org). They began sending out a quarterly newsletter called “Swallow Tales.” They also created an awareness brochure, which they asked group members to distribute.

“For me it was very rewarding, because I didn’t want anyone to ever be as completely as devoid of information—of help—as I was when Dick was first diagnosed,” she said.

Because Dick’s cancer metastasized to his liver, Lois Dickerman also became involved with the e-mail support group sponsored by YES, an organization for individuals with liver tumors. Through this group, the Dickermans met Meegan Hodges, a colon cancer patient with liver metastases.

The Dickermans’ relationship with Hodges, from Penrith, Australia, shows another benefit of online support groups: without the YES group, Hodges would never have gotten the support from a family half-way across the world.

“It’s good because you’ve got information coming to you that you wouldn’t have had available to you at times,” she says. “There are people who are going through the same thing, people asking questions all the time. And with so many other people around, you’ve got the opportunity to learn.”