TINA AND SHERRY ARE CANCER SURVIVORS. For several months, the two women attended the same weekly support group, and during one meeting in May 2008, Sherry shared a story so personal it reduced her friend to tears.
Sherry: “I was in the hospital for three days this week, and while I was there, I slept fitfully. But one of the times I was able to sleep, I had a very comforting dream in which I received a phone call from you, Tina. I wish I could remember the substance of what you said, but in the dream, your voice was so warm and comforting, and it was like you had been there, and you knew everything was going to be fine. I woke up remembering only that much, but it was a vivid feeling.”
Tina: “Oh Sherry, I am crying.”
Tina and Sherry have never met.
They are members of the same online support group⎯one of thousands of such groups for cancer patients and caregivers on the web, says nurse-researcher Paula Klemm, the assistant director of research and development at the University of Delaware’s School of Nursing in Newark. Tina and Sherry, whose names have been changed to protect their privacy, belong to a group facilitated by the Cancer Support Community. The nonprofit has set up more than a dozen virtual support groups since 2002, in addition to the 485 traditional face-to-face groups that the organization regularly hosts nationwide through its affiliates.
Though it’s unclear exactly how many cancer patients and survivors like Tina and Sherry are currently active in groups across the internet, researchers say the number of online cancer support groups has been rapidly increasing since the mid-1990s, despite the fact there’s no evidence the face-to-face variety is waning in popularity. It’s a phenomenon they attribute to the ubiquity of internet-enabled devices, such as smartphones and tablets, as well as the convenience of online support and rising worldwide internet access. A 2011 survey by the Pew Research Center and the California HealthCare Foundation found that one in four internet users with cancer or another chronic health condition go to the web to find others going through the same experience.
What seems clear is that sharing and empathizing in a virtual room can have the same payoff as being in a real one. “We have a lot of members who have been members for one, two or even three years,” says oncology social worker Erin Columbus, the program director of online client services for the nonprofit CancerCare, which today offers 25 online support groups, up from just a handful in 1997. “They’ve gotten to know each other intimately. Some of them have flown out to meet each other and have a reunion⎯or, I guess, rather a union⎯to meet one another and hang out. They really do become good friends.”
Keys to Support
Traditional support groups for people with cancer and other chronic medical conditions date back to the 1970s. The standard setup remains: At a certain time at a certain place, members sit face-to-face for an hour or so. Coffee and paper cups are on a back table, boxes of tissues are passed around. And people talk.
Online, people type. They type in chat rooms, on discussion boards and on sites like Facebook and Twitter. A patient starting out on the impersonal and solitary, if not altogether frightening, exercise of Googling a new cancer diagnosis will find countless invitations for human connection: social networking communities, message boards, chat rooms, listservs and email groups.
Though online support groups obviously lack some palpable benefits of face-to-face contact⎯a sorely needed hug, a sympathetic smile⎯chat-room meetings have the upper hand in specificity. (One Facebook support group: Pregnant With Cancer UK.) That means people who wouldn’t otherwise have found support can find it. A person with chronic myeloid leukemia (CML) in Bismarck, N.D., is unlikely to identify even a half-dozen similarly diagnosed patients locally who could lend a sympathetic ear or share their experiences with treatment side effects. But on the web, that same patient can join a CML chat group hosted by the Leukemia & Lymphoma Society or sign up for the CML mailing list offered by the Association of Cancer Online Resources, a listserv clearinghouse that maintains 130 email groups.
Helping people like that rural North Dakota patient is what drove CancerCare’s initial online offerings. “We really wanted to reach people who were isolated and who didn’t have access to the face-to-face services, even telephone services sometimes,” says Columbus.
Today, online support groups come in many forms. On the Cancer Support Community website, there are groups for patients and others for caregivers and the bereaved. For an hour and a half each week, members are signed into a live chat room while professional therapists or social workers moderate the discussion. Other virtual support groups, like those offered by CancerCare, operate like traditional message boards.
Facebook-style support groups are also gaining traction. On the site I Had Cancer, launched in August 2011, members post pictures and profiles and personal news feeds. Within a year, the site racked up more than 6,000 registered members. Founder Mailet Lopez says the idea for the website struck her after she was diagnosed with breast cancer at 33 and was unable to find anyone else her age with the disease. She calls her site part of a “movement about the e-patient.”
“For a support group that’s offline, it’s going to be more difficult to find a person that’s your age that has your cancer,” says Lopez, of New York City, now 38. “Then it’s a matter of when those meetings are scheduled. Also, sometimes people don’t want to talk about things in person, and it may be easier to write because you feel more anonymous.”
In September 2011, the American Cancer Society helped launch WhatNext, another online social network, which connects the newly diagnosed with those who can provide information about what’s ahead in the cancer journey. Carol Haines joined a couple of months after being diagnosed with stage III rectal cancer in July 2011, scouring the site for posts from people on her same chemotherapy regimen. For her, eschewing in-person support groups for the internet was an easy decision: It was all about time.
“I would go have treatment, go to the office and by the time I got home, I was exhausted,” says Haines, 38, who works as a project manager at the University of Pittsburgh Medical Center. “There was no way I could make it to a support group in the evening. The biggest factor for me is that I could do it at midnight. I could do it at 5 a.m.”
Limits and Benefits
Convenience, however, comes with a few catches.
It’s hard to ignore someone spilling vulnerable, private fears and feelings when they’re sitting in the same room. But not on the web, where giving the cold shoulder is easy. Countless message boards for online support groups are littered with lengthy emotional posts on deserted threads with no replies. Columbus calls it “feeling abandoned.” Haines says that before joining WhatNext, she belonged to other sites, investing a lot of time sharing her stories only to have group members drop in and out.
Posts also can get lost in translation. Without the benefit of body language, facial expression and intonation, group members sometimes misunderstand one another, says Columbus, who moderates CancerCare’s blood cancers patient group and its young adult bereavement group. “You’re seeing a post and having your own reaction. ... This is where the moderator is trained to step in and navigate that.”
But despite the drawbacks, research suggests that virtual support groups do work⎯that the benefits of face-to-face cancer support groups carry over to the web. In CancerCare’s 2011 survey of its online support group members, about 85 percent “strongly agreed” with the statement that the virtual groups made them feel more emotionally supported, says Columbus.
According to another study, breast cancer patients were less depressed after participating in a professionally moderated or peer-led online support group than before joining the group. “The important thing was belonging to a group, no matter how it was run,” says Klemm, the lead researcher on the study, which was published in January 2012 in the journal
CIN: Computers, Informatics, Nursing.
However, women in the moderator-led group were much more active, posting more than twice as many messages as women in the group led by peers. The more “talkative” moderated group may benefit in ways not looked at in the study, Klemm says. “It might be that the more you post and the more information you receive, the better you’re able to cope with your disease,” she says.
Women with breast cancer who receive online support also may reduce their stress, according to research published in 2003 in the journal
Cancer. In addition, many cancer patients have a newfound sense of empowerment, and some even experience a decreased negative reaction to pain, Klemm says.
Lopez has seen members of the site I Had Cancer sharing information about treatments, side effects and even diet. “People are then empowered to take that information back to their doctor and say, ‘I heard about this treatment. Is that an option for me?’ The time you spend with your doctor is going to be so much more valuable than if you hadn’t connected with anyone,” Lopez says.
Give it at least two weeks. It takes time to get into the rhythm of written conversations. A two-week trial period can also give you a good idea about the variety of topics discussed in online groups. Even if you don’t find the first week’s topics helpful, stick around and see what the next week offers.
Make sure safeguards are in place. Trustworthy sites are password-protected and require you to register before you can connect with other members.
Consider joining an online support group moderated by a professional. Moderators are trained to communicate effectively online and deliver written messages in a clear and gentle manner. “The facilitator is an expert in connecting people and helps members deepen the conversation,” says Anne Gessert, a marriage and family therapist who moderates three online support groups for the Cancer Support Community.
Find online support that’s right for you. Whether they are structured online support groups or social networking sites, try out different types of support outlets until you find the best fit. Be sure to take into consideration how much time you have to participate.
- Get support, then give support. Stay active in the online support community after you finish treatment. Survivors and caregivers have a wealth of knowledge they can pass on to others, says breast cancer survivor Mailet Lopez, who founded I Had Cancer. “Just remembering what the experience felt like can help someone else,” she says.
Many people are skeptical about whether real connections can be made online. Tom Reece was one of those people. Diagnosed with pancreatic cancer in 2011, Reece assumed he was accepting second best when he joined an online support group after chemotherapy left him too worn out to make the 30-minute drive to a face-to-face one. He thought he wouldn’t connect with people as well as at an in-person group.
“But we do connect. It has kind of been a mystery to me,” says Reece, 50, who lives in Fishers, Ind. Since February 2012, he has logged on every Tuesday night to a group hosted by the Cancer Support Community. “It’s almost like the connection is in the way somebody says something. Or even what they’re not saying. You find out their fears and their needs.”
It’s not such a mystery to health psychologist Mitch Golant, the senior vice president of research and training at the Cancer Support Community. “Online, the way you connect is by self-disclosure,” he says. “Just by talking about yourself and sharing and having others listen has a tremendous impact on your quality of life.”
Writing itself can also be therapeutic, he adds: “Being able to put your thoughts and feelings into words provides a cognitive processing that reinforces the value of online support.”
At the Cancer Support Community, Golant estimates he has read about 1,000 transcripts of its online support groups. He says the words start to have a rhythm with each person’s way of expressing themselves. Each pattern is “kind of like a fingerprint, and you start to develop a connection with the other members,” he says.
For support group buddies Tina and Sherry, their virtual connection turned into something real and meaningful. Through tears brought on by hearing Sherry’s dream, Tina went on to write: “I have head and neck cancer and because of all the surgeries, I hadn’t spoken for over a year before joining the group. The thought that you heard my voice makes me cry and feel so connected.”
December 31, 2012