On-line support: Should you or shouldn’t you?
On-line support: Should you or shouldn’t you?
Some 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, where someone posts a question and others provide input. However, there has not been much traffic on any of them to date.
To encourage their use, Pfaffenhauser had the facilitator of some of the regular sister support groups start a line of conversation, thinking that people may not want to post the first message, but the tactic did not help. This summer, she plans to do a marketing blitz to employees as well as the community to see if publicity increases traffic.
Currently, the on-line support groups have no moderators, but as traffic increases, Pfaffenhauser hopes to have the appropriate educator monitor the site. For example, the cancer educator would monitor the on-line cancer support groups.
The Anderson Network, a group of volunteers of current and former cancer patients who 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 article on p. 90.)
"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. Our group is fairly knowledgeable about use of the Internet, so I don’t say a lot to them. They are fairly self-monitoring," says Linda Jones, moderator of the Anderson Network listserv.
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 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 if a person persists, he or she is 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 that 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-designated Comprehensive Cancer Center. For an on-line cancer support group moderator, she recommends selecting a group led by 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.
Before referring a person to an on-line support group, she would make sure it had policies and procedures that covered such issues as how a person who is suicidal is handled on-line, what is done when someone makes statements or asks questions that indicate he or she is in 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 600-700 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 an on-line support group is that the trust and rapport built when two people who share a chronic illness, injury, or other life-altering event meet in person cannot be duplicated. 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 people 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 do.
The advantages of on-line support groups are 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 you can offer, she says.
Another advantage 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.
For more information about the use of on-line support groups, contact:
• Linda Jones, Listserv Moderator, Anderson Network, MD Anderson Cancer Center, Houston. E-mail: [email protected].
• 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: [email protected].
• Barbara Petersen, RN, BSN, Patient Education Coordinator, Great Plains Regional Medical Center, 601 W. Leota, North Platte, NE 69101. Telephone: (308) 535-8640. E-mail: [email protected].
• Deborah Pffaffenhauser, RN, MSN, Director, Consumer Health Education, Bayhealth Medical Center, 640 S.State St., Dover, DE 19901. Telephone: (302) 744-7099. E-mail: [email protected].
• 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: [email protected].
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