On-line support: Should you or shouldn’t you?
Some groups are successes, but caution is required
Question: "Has your institution created any on-line support groups? If not, do you refer patients to existing on-line support groups? When referring to these support groups sponsored by hospitals or health care systems, how do you evaluate them? Have you had much interest in on-line support groups by patients? What are the advantages and disadvantages of going on-line for support?"
Answer: "We created an on-line version of each of our support groups," says Deborah Pfaffenhauser, RN, MSN, director of consumer health education at Bayhealth Medical Center in Dover, DE. The catalyst behind the on-line support groups was the desire to provide community services over the Internet. The groups are set up in bulletin-board fashion, meaning someone posts a question and others provide responses. However, none of the groups has been used much to date.
Marketing may boost group attendance
To encourage use of the on-line groups, Pfaffenhauser got the facilitator of some of the regular sister support groups to start a line of conversation, thinking that regular users may be reluctant to post the first message, but the tactic did not help. This summer, Pfaffenhauser plans to do a marketing blitz to employees as well as the community to determine whether publicity increases traffic.
The on-line support groups currently have no moderators, but as traffic increases, Pfaffenhauser hopes to have an appropriate educator monitor each group. For example, the cancer educator would monitor the on-line cancer support groups.
The Anderson Network, a group of current and former cancer patients who volunteer to offer support to others living through the diagnosis and treatment of cancer, created an on-line support group at Houston-based MD Anderson Cancer Center as a listserv. The volunteers used the listserv method because they couldn’t create a chat group in real time due to the institution’s Internet security. People who come across the listserv on the cancer center’s Web site can subscribe via e-mail. (For information on creating an on-line support group in real time, see "Education and support on-line is winning combination," in this issue.)
"As moderator, I read all the e-mail messages on the listserv, and if there is a question that is not being answered, then I answer it," says Linda Jones, moderator of the Anderson Network listserv. "Our group is fairly knowledgeable about use of the Internet, so I don’t say a lot to them. They are fairly self-monitoring."
Although there has not been much of a problem with incorrect information being provided on-line, there is a policy in place to handle the problem. Jones would intercede with a statement about MD Anderson policy on the issue or would refer interested parties to a web site that has correct information. Anyone signing up for the listserv receives an automated letter explaining the rules of participation. Advertising is not tolerated, and people who don’t obey the rules are removed from the listserv.
Set criteria for referral
Although USC/Norris Comprehensive Cancer Center and Hospital in Los Angeles does not sponsor on-line support groups, patients are referred to these groups. "In evaluating which groups we refer to, we look at the organization that the group is sponsored by and who the facilitator is. We only refer to groups that are led by a professional," says Carol Marcusen, LCSW, director of social services and patient education.
Patients who have participated in chat rooms or support groups that are not led by professionals have received invalid information and have had problems with people who monopolize the group and have their own agendas, says Marcusen.
Any on-line support group listed as a referral should be sponsored by a reputable organization and led by a well-credentialed health professional, agrees Mary Szczepanik, MS, BSN, RN, manager of cancer education, support and outreach for Grant/Riverside Methodist Hospital in Columbus, OH.
For example, a reputable institution for cancer support groups would be one that is a National Cancer Institute (NCI) -designated Comprehensive Cancer Center. The moderator for an on-line cancer support group should be a psychologist, psychiatrist, advanced practice nurse, or licensed social worker; all involved should have strong oncology experience. "Their credentials should be available on-line," she says.
Check into policies and procedures
Before referring a person to an on-line support group, Szczepanik would make sure it had policies and procedures that covered such issues as how a suicidal person is handled on-line, what is done when someone makes statements or asks questions that indicate he or she has a life-threatening medical condition, or how complaints about specific physicians, hospitals, or health care providers are handled.
"We provide one-on-one counseling over the phone, and since we have general and disease-specific live support groups, we funnel people into those. We rarely get questions about on-line support groups," says Szczepanik. Of the 600 to 700 calls received monthly on the information line, only one or two are requests for information about on-line support groups, she says.
"There are numerous on-line support groups on the web currently, but I have been very leery of recommending them to patients because I do not have enough time to frequent the groups myself and/or to assess the information that is shared within the group," says Barbara Petersen, RN, BSN, patient education coordinator at Great Plains Regional Medical Center in North Platte, NE.
One disadvantage of on-line support groups is that they cannot provide the trust and rapport that occur when people who share a medical problem meet in person. Often, the casual conversation that occurs as members enter the room before a support group meeting or walk to their cars afterward is more productive than the structured conversation, says Petersen.
On-line support groups are difficult to regulate, and it is easy for participants to misrepresent themselves. "Some of the ideas shared can be unproven or debatable issues and advice which can really lead someone astray," says Petersen. Also, people trying to make a fast buck prey on desperate people looking for a cure or alternative treatment. While she acknowledges that many on-line support groups have protection measures, such as passwords or registration methods, not all of them do.
An advantage of on-line support groups is that people do not have to leave home to attend. This can be especially advantageous for caregivers, says Pfaffenhauser. These on-line groups also are beneficial when there is limited space available for meetings. With on-line support groups, there is no limit to the number of participants you can accommodate, she says.
Another advantage on-line groups offer is anonymity, says Petersen. "The major advantage of an on-line support group is that someone can maintain their confidentiality when the patient does not wish to reveal to members of a community their illness or other reason for attending a support group," she says.
Need more information?
• Linda Jones, Listserv Moderator, Anderson Network, MD Anderson Cancer Center, Houston, TX. E-mail: email@example.com.
• Carol Marcusen, LCSW, Director, Social Services and Patient Education, USC/Norris Comprehensive Cancer Center and Hospital, 1441 Eastlake Ave., Los Angeles, CA 90033-0804. Telephone: (323) 865-3150. E-mail: Marcusen_C@norsur.hsc.usc.edu.
• Barbara Petersen, RN, BSN, Patient Education Coordinator, Great Plains Regional Medical Center, 601 West Leota, North Platte, NE 69101. Telephone: (308) 535-8640. E-mail: firstname.lastname@example.org.
• Deborah Pfaffenhauser, RN, MSN, Director, Consumer Health Education, Bayhealth Medical Center, 640 South State St., Dover, DE 19901. Telephone: (302) 744-7099. E-mail: email@example.com.
• Mary Szczepanik, MS, BSN, RN, Manager, Cancer Education, Support and Outreach, Grant/Riverside Methodist Hospital, 3535 Olentangy River Road, Columbus, OH 43214. Telephone: (614) 566-3280. E-mail: firstname.lastname@example.org.