Online Breast Cancer Support Groups Beneficial

WASHINGTON—In recent years online chat rooms and list servers devoted to a vast array of special interests have become a staple of American life. Now a pilot project has shown that an internet support group significantly benefits women coping with breast cancer, said Mitch Golant, PhD, vice president of research and development for The Wellness Community (TWC) National, Santa Monica, California.

At its 21 brick-and-mortar locations, TWC provides a range of educational and psychological services to cancer patients, including support groups facilitated by mental health professionals knowledgeable about cancer. "We have preliminary evidence," he said, "that women who participate in small, professionally facilitated, online breast cancer support groups can obtain benefits on a number of psychological and quality-of-life variables thereby allowing for the possibility of helping those who do not or cannot come to a central location either because they are too ill or live too far away."

The implications of the study are "far reaching," Dr. Golant said at the American Psychological Association Conference on Enhancing Outcomes in Women’s Health. A randomized study is now underway to compare the benefits of face-to-face support groups with those of online support groups, he said.

The Virtual Wellness Community

Based on the results of the pilot study of online support groups, as well as the need across the country for access to professional support services, The Wellness Community (TWC) has launched The Virtual Wellness Community located at www.thewellnesscommunity.org.

The website will provide free, professionally moderated support groups in real-time for people with cancer.

The presenting sponsor is Amgen, Inc. Their sponsorship includes a lung and breast cancer support group, the patient education library, and several patient networking groups.

Other founding sponsors of the website include GlaxoSmithKline, sponsoring an ovarian cancer and lymphoma support group; Eli Lilly and Company, sponsoring a lung and pancreatic cancer support group; and Roche Laboratories Inc., sponsoring a colorectal cancer support group.

Online support groups cost only a fifth as much as face-to-face sessions. TWC has initiated The Virtual Wellness Community (see box) and has produced experimental manuals on running online groups that may help in creating similar groups for people with other diseases.

In the pilot project, eight breast cancer patients and a professional facilitator met online in four different groups for 1½ hours each week for 16 weeks (a total of 32 patients).

Discussion ranged across medical, personal, and emotional topics chosen by the participants. In addition, the group members had 24-hour-a-day access to a private electronic bulletin board where they could continue their exchanges when the group was not in session and where they could read transcripts of any meetings they had missed.

The women experienced a significant drop in depression, an improved ability to handle their pain, and increased "zest for life" and enhanced spirituality on a measure of "post-traumatic growth," Dr. Golant said. In follow-up interviews, three quarters of participants said they believed the group had helped them.

Just under half of the women (49%) lived in rural areas or small towns, 39% in moderate-sized cities, and the remainder in large metropolitan areas. They ranged in age from under 30 to over 60, with 54% between 40 and 49. Ninety-one percent were white and the rest Hispanic and Asian. Seventy-one percent were married, 20% divorced, 4% widowed, and the rest single. A third each had either been to or graduated from college, and a quarter had graduate education. Forty-eight percent had stage II disease, 22% stage I, 12% stage III, and 4% stage IV; the remainder either had other forms of the disease or had not yet been definitively diagnosed.

The professional facilitators have the same goals in both face-to-face and online support sessions, but the differing demands of the two environments require them to behave somewhat differently, Dr. Golant said.

Because electronic sessions lack such cues as tone of voice, body language, and facial expression, the facilitator has to use somewhat different techniques, asking more questions than would be appropriate in person in order to clarify and direct interactions. Although facilitators may do only 10% of the speaking in face-to-face sessions, they may take up to 25% of a group’s time in virtual groups. The virtual session nonetheless helped fill most members’ need for emotional support, Dr. Golant concluded.