Isolation and the feeling of being out of control of one's life are common experiences for cancer patients. The internet can be a valuable tool in helping to make patients feel part of an understanding community, said Mette Terp Hoeybye, from the Institute of Cancer Epidemiology, Copenhagen, Denmark, speaking at ECCO 12 - The European Cancer Conference.

Breast cancer patients participating in the Scandinavian Breast Cancer Mailing List were recruited to the eight-month study, which took the form of participants e-mailing each other about their personal experience of breast cancer. "For example", said Hoeybye, "a newly diagnosed woman would enter the group seeking experience and advice from other women who had already undergone surgery and other treatments. It gave the women the opportunity not just to talk about the technicalities of treatment, but also to share their feelings and emotions about having cancer."

Women took the opportunity to ask each other about such questions as how to tell their children of their diagnosis, or how to cope with a daughter's fears that she might also have breast cancer. Such posts would start a wider discussion in the group, where advice of both a practical and an emotional nature could be given.

Data were produced through participant observations on-line and face-to-face interviews by Hoeybye and the setting up of focus groups. Participants were also asked to keep diaries. The women said that they experienced both improved well-being and empowerment from being in the electronic group.

In Denmark, 77% of the population has access to the internet, and this makes it more than just the middle-class phenomenon it is in some European countries. But it is important to extend the opportunity of using the internet both for retrieving information and for social support to people in low income groups as well, said Hoeybye. "Health policymakers should think about giving priority to making the internet more widely available to all those who could benefit from it."

"Telling your own story on the internet becomes an empowerment strategy, and the mailing list is a unique room where the women can express their frustration or joy, or simply ask questions. This means a lot to them, and it is a kind of therapy. When you tell your story on the mailing list you become visible. Illness and suffering not only isolates, but makes you passive and unable to act. But when you tell your story, that is a form of action, and being able to act is vital to human existence," said Hoeybye.

SOURCE:
ECCO 12 - The European Cancer Conference, September 25, 2003, Copenhagen, Denmark