Patient Education Quarterly

On-line support: Should you or shouldn’t you?

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, she 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 wants to have the appropriate educator monitor the site — the cancer educator would monitor the on-line cancer support groups.

Although USC/Norris Comprehensive Cancer Center and Hospital in Los Angeles does not sponsor on-line support groups, patients are referred to them. "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 have received invalid information from chat rooms or discussion groups that were not led by professionals, she adds.