Volume 7, Number 4, 1998

On Research

Web offers on-line support for cancer survivors

Traditional support groups clearly help cancer survivors cope with their experiences, and Internet-based networks can offer many of the same benefits says a UD professor who examined the content, advantages and pitfalls of "cyber solace."

Paula Klemm, assistant professor and assistant chairperson of nursing, recently published an article entitled, "A Nontraditional Cancer Support Group: The Internet."

Advantages to participating in an on-line chat with other cancer survivors and their families include 24-hour availability-even to home-bound patients and their families-and an offer of anonymity that may be appealing to some, Klemm found. Internet support groups also attract more men than traditional once-a-week support group meetings at local hospitals, where women participants outnumber men four to one, she reports.

On the other hand, on-line groups lack comforting one-on-one personal contact, and whatever a participant writes is not really private, Klemm says. Participation in an on-line support group also assumes that the patient has access to a computer, is literate and is not visually impaired.

However, a previously expressed concern about such groups, the lack of a facilitator and potential for the spread of misinformation, is largely unfounded, Klemm says.

"These people are very well-versed in their disease, and for every one person who might post inaccurate information, there are at least five others who will correct it," she stresses.

For her study, Klemm found the address of a colon cancer Internet support group-a cancer that can attack both males and females. With undergraduate students Carla Reppert and Lori Visich, she collected 150 messages and, six months later, collected another 150.

Upon analyzing the messages, Klemm found they fell into eight categories: information giving and seeking, personal opinions, encouragement and support, relating of personal experiences by both patients and caregivers, notes of thanks, stories of humor, prayer and a miscellaneous category.

People involved in such chats become "as close as it is possible to be to someone over the Internet," Klemm says.

"Because participants come from all over the world, it wouldn't be unusual for someone to write that they were going to Boston for treatment and then have someone from the Boston area invite them to dinner," she says.

In her own life, Klemm attended a nursing conference in Philadelphia and met nurses who had treated one of the women from Binghamton, N.Y., whom Klemm "knew" from the on-line support group.

"People send expressions of grief to surviving family members when someone dies, sometimes they even go to each other's funerals," she says.

"It's not the be all and end all, but it's another resource: When you've gotten news that is hard to take, it's like having someone send you a cyber-hug," she says.

While the owner of the colon cancer list is a survivor who has been cancer free for 15 years, many of the people on the list stay involved for their period of crisis and then move on, Klemm found.

"Toward the end of a person's life, it's not unusual for a caretaker to start participating in the group, writing something like, 'George is lying on the couch and I just needed to talk to someone....'"

The research wasn't always easy in an emotional sense, Klemm concedes. "There was a husband who joined the list for a while after his wife died. She was in her 30s, and they had two young kids. On another Internet support group, there was a boy who was 7 and had been battling cancer since he was 3. You saw his illness through his mother's eyes. She belonged to the group and she fought for him like a pit bull. She wrote about his dying in her arms."

According to Klemm, the one topic that was not addressed in the chats was "sex." As a follow-up, she is studying a prostate cancer group and a breast cancer group-looking to see if there are differences in topics when all participants are of the same gender.

To date, she has noticed a strong interest in funding and activism among the prostate group-men who want others to write and call
their representatives and who are interested in developing a prostate cancer awareness symbol, similar to the pink ribbons used to promote breast cancer awareness.

Additionally, Klemm is pursuing research into the area of "cyber rights," investigating how much a researcher can gain from the web without running into legal problems. For her recently published study, she was careful to assemble composite statements and not quote anyone directly to avoid invading their privacy.

Klemm earned her master of nursing education degree from the University of Maryland and her doctorate in nursing education from Catholic University.

Prior to joining the University of Delaware in 1992, she was a nurse educator at the Johns Hopkins University Oncology Center and a clinical nurse at the Johns Hopkins Hospital.

-Beth Thomas