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Study examines use of online breast cancer support groups

David H. Gustafson

David H. Gustafson (large image)

Stereotypes about who will use online support groups are wrong, according to research conducted at the UW-Madison Center of Excellence in Cancer Communication Research, led by Industrial and Systems Engineering Professor David Gustafson. The researchers found that age, income and education did not predict participation, although minorities were not as active as other users.

Bret Shaw

Bret Shaw (large image)

The percentage of women with breast cancer who participate in online support groups is significant and has grown steadily over the past decade. The new research, led by assistant scientist Bret Shaw, provides insights into 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 published in the January/February 2006 issue of the journal CIN: Computers, Informatics, Nursing, 144 women recently diagnosed with breast cancer received free computer hardware, Internet access and training in the use of 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, more active participants tended to report higher energy levels, a more positive doctor-patient relationship, fewer concerns about breast cancer and higher perceptions of support from their families.

According to Shaw, the research team expected free Internet access and training to greatly reduce usage differences one might expect based on age, education or income. However, the authors were surprised to find 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 women who are closer to 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,” says Shaw. “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.”

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). Researchers from several UW-Madison schools and colleges, including the College of Engineering, work together at the center to improve the quality of life for cancer patients and their families, particularly those from underserved populations.

The study's other authors include Neeraj Arora of the NCI and UW-Madison researchers Gustafson; Robert Hawkins, School of Journalism; Fiona McTavish, Center of Excellence in Cancer Communication Research; and Suzanne Pingree, Department of Life Sciences Communication. Access the article free-of-charge at