Cyber-solace provides patient support
On-line groups provide good alternative
Support for computer-literate patients is available 24 hours a day . . . on-line. That makes Internet support groups particularly beneficial for homebound patients, according to Paula Klemm, DNSc, RN, OCN, associate professor at the University of Delaware department of nursing in Newark.
Health care professionals needn’t fear the unstructured format, either. "If there is bad or incorrect information given, you’ll have 10 people correcting it immediately, so that is an advantage," says Klemm.
To determine what type of messages were left in "cyber-solace" groups, Klemm examined the contents of 300 messages to an Internet support group for people with colon cancer. A qualitative analysis of what people talked about yielded eight different categories. These included information giving and seeking, relating personal experiences by both patients and caregivers, notes of thanks, humor, prayer, and miscellaneous messages.
"Basically, people sought information about the disease as well as treatment and its side effects. They gave advice and personal opinions about treatment and how they felt," says Klemm. Because it was colorectal cancer, both men and women were involved in the support group, and Klemm saw no difference in their level of participation.
A second study was set up to determine if message content would be different for an all-female group vs. an all-male support group. To obtain this information, Klemm tracked messages on an on-line breast cancer support group and an on-line prostate cancer group.
She determined that men were technically oriented and most often sought or gave information. Women sought information too, but they also left a lot more personal support messages, such as "Keep up the positive spirit." Klemm says her findings agree with the literature that states men join traditional support groups to share information, while women are more social. (For more information on traditional support groups, see Patient Education Management, March 1999, p. 25.)
There are many benefits to participating in on-line support groups, says Klemm. Because there are no geographical restrictions, people can communicate with others all over the United States and around the world to inquire about the latest treatments. Also, the groups are available 24 hours a day, and a posted message often gets 25 to 50 responses. "People get home from work or home from chemotherapy and they just pop on the Net anytime. There are messages posted all times of the day and night," says Klemm.
Yet convenience doesn’t ensure ongoing participation. Certain people post a lot of messages, and then there are others who only post once.
One of the drawbacks of on-line groups is that it costs money to have a computer and connect to the Internet. Also, there is no actual personal contact. A third drawback is the fact that there is no professional facilitator. Most traditional groups are facilitated by such professionals as a social worker or a nurse. Without expert guidance, it is more likely for participants to pick up incorrect information, even though Klemm found that people do correct erroneous facts.
Before suggesting an on-line support group, patient education managers should subscribe to it for a day or a week to see what kind of information the group is sharing, advises Klemm. "It is good to know what people are saying on-line," she explains.
Just how much time people spend in on-line support groups is difficult to determine. Some answer a lot of messages, and others belong to more than one group. In Klemm’s next study, she will be asking people about the amount of time they spend on the Internet.
Research has suggested that people who spend a lot of time on the Internet are more depressed than other people. Therefore, she will compare cancer support groups in the traditional setting to the cancer support groups on-line to see if there are any differences in depression levels.
Information seeking usually draws people to an on-line support group, but once there they will realize many other benefits. They find they will receive support, get information they didn’t think to ask for, and make new friends, says Klemm.
Sources
For more information about on-line support groups, contact:
• Paula Klemm, DNSc, RN, OCN, Associate Professor, University of Delaware, Department of Nursing, Newark, DE 19716. Telephone: (302) 831-8501. E-mail: [email protected].
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