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Cancer patients get emotional benefits from participating in online support groups

David H. Gustafson

David H. Gustafson (large image)

Bret Shaw

Bret Shaw (large image)

Women with breast cancer who participate in computer support groups can obtain emotional benefits when they openly express themselves in ways that help them make sense of their cancer experience, according to a new study conducted by the University of Wisconsin-Madison Center of Excellence in Cancer Communication Research directed by Industrial and Systems Engineering Professor David Gustafson.

“Even though there are many women with breast cancer participating in online support groups, this is among the first research studies to demonstrate measurable benefits from participation in such groups,” says assistant scientist Bret Shaw, lead author of the study. The results were published in the March issue of the journal Health Communication (volume 19, no. 2).

The analysis was conducted on message transcripts from 66 breast cancer patients participating in an online support group integrated with the Comprehensive Health Enhancement Support System (CHESS) “Living with Breast Cancer” program, a computer-based health education and support system.

The patients were recruited from Madison, Wisconsin; Chicago, Illinois; and Indianapolis, Indiana. Text messages within the computer-mediated support groups were analyzed using a text analysis program, which measured the percentage of words that suggested learning or understanding, such as “aware,” “feel,” “know,” “realize,” “see,” “think” and “understand.” A higher percentage of these words were associated with improved emotional well-being and reduced negative mood in follow-up surveys.

Earlier studies have shown that women with breast cancer use online support groups because they can anonymously communicate with other patients and don't need to maintain a show of strength, as may be required with family and friends. Additionally, these resources give patients the convenience of communicating with other breast cancer patients as needed based on their own schedule.

“Computer support groups are often conceived of as places where people exchange information, emotional support and encouragement, but it's interesting that another possible benefit appears to come just from having the opportunity to talk openly and constructively about living with breast cancer independent of actual support they receive from others,” says Shaw.

The Center of Excellence in Cancer Communication Research at UW-Madison was funded in June 2003 by a $10 million grant from the National Cancer Institute (NCI) to improve the quality of life for cancer patients and their families, particularly those from underserved populations.