New Study Examines Scope of Online Breast Cancer Support Groups

Stereotypes about who will use online support groups are wrong, according to research at the University of Wisconsin-Madison. The researchers found that age, income and education did not predict participation, although minorities were not as active as other users.

The percentage of women with breast cancer participating in online support groups is significant and has been growing steadily over the past decade. This new research provides insights about the characteristics of women who are more likely to participate in these groups when barriers to computers and Internet access are removed.

In the study conducted at the UW-Madison Center of Excellence in Cancer Communication Research, 144 women who were recently diagnosed with breast cancer were provided free computer hardware, Internet access and training in how to use an online health education and support system, which they were able to use for six months. The researchers then examined who was most likely to use the online support groups.

While socioeconomic status did not generally predict participation in these groups, there were trends toward more active participants expressing more positive physical, psychological and social status than less active participants. Specifically, there were trends toward more active participants reporting higher energy levels, a more positive doctor-patient relationship, fewer concerns about breast cancer and higher perceptions of support from one's family.

The study is published in the January/February 2006 issue of the journal CIN: Computers, Informatics, Nursing.

According to the lead author of the study, Bret Shaw, the researchers expected that that free access and training would be great equalizers in reducing differences one might expect based on age, education, or income. However, the authors were surprised by the results indicating that women with more positive appraisals of their physical, social and psychological states used the online support groups more frequently.

The most novel finding, according to Shaw, was that more frequent users reported having more support from their families. In reviewing the message transcripts, the authors determined that those who are closer with their family and friends perceive they have more to lose from breast cancer, and therefore are more inclined to communicate about those feelings with others.

"What women often wrote about their fears was that breast cancer might cut short their time to enjoy family and be around for important milestones as their children grow older. It appeared that the closer a woman felt to her family or larger social network, the more she feared her potential separation from them as a result of breast cancer," says Shaw.

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