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The on-line support group for cancer patients organized by the James Cancer Hospital and Solove Research Institute in Columbus, OH, is like any other support group that meets in person except that it is one dimensional, says Pat Schmitt, MA, CRC, program director for comprehensive oncology rehabilitation. The group meets once a month, has a facilitator, guest speaker, and handouts with more detailed information frequently available for participants to download. To participate, people contact the webmaster via e-mail to obtain a password and instructions before logging on at the designated time.
"One of the reasons we started the on-line group is because we realized that traditional support groups are not for everybody anymore. We were trying to very deliberately expand the menu of options that we were providing to our patients," says Schmitt, who acts as the group’s facilitator.
To determine what people would want in an on-line support group the institute conducted a survey in the outpatient ambulatory area, which has a high volume of patients, so it’s easy to collect data. Patients who were interested in trying an on-line support group said that they wanted it to be educational as well as supportive. Therefore, the project team decided the group should be professionally facilitated rather than set up as a bulletin board or open chat. They also determined that an expert on the featured topic should be invited as a guest speaker. "Because this is offered by our institution, we wanted to bring a level of clinical expertise to it," Schmitt says.
People can choose when they want to participate based on whether the topic being covered meets their specific personal issues. Those with a password are sent an e-mail reminder. The information about the support group and the monthly topic also is on the James Cancer Hospital web site. Some patients log onto the support group on a monthly basis because they like the contact with other people. Others like the anonymity of the Internet environment. Some of the topics covered, such as dealing with changes in sexuality and intimacy, work really well on-line, says Schmitt. "Some of the questions people wouldn’t feel comfortable asking in person with a lot of other people around — they have no hesitation asking on-line."
Older adults are participating in the on-line support group, and the health care facility is pleased since this has been a patient group the hospital has had a hard time serving in the past. That’s because older adults don’t like to come back to the hospital in the evenings to access a class, clinic, or traditional support group, says Schmitt.
In addition, the on-line support group is one resource that the 30% to 40% of patients who live out of the area can take advantage of once they leave the hospital. It’s convenient for chemotherapy patients who need to conserve their energy as well. The most people who have participated in the on-line support group at one time have been 12. The general attendance is between eight to 10 people with a few regulars and several one-time only participants, which fits with the support group’s design. The cutoff point for the number of participants would be 15 because high numbers reduce the amount of time people actually have to communicate, says Schmitt.
To facilitate the communication process, Schmitt monitors the text, trying to ensure that people who ask questions receive a response and cutting off people when appropriate by typing something such as, "We have had many questions from Ian; let’s hear from Sally." She often takes notes to keep track of who is participating.
Sometimes a participant will type in several questions in rapid succession, so Schmitt will select the question she thinks will be of interest to most people and then asks the guest speaker to answer it. If time permits the other questions are answered later.
Often the guest speaker needs help getting used to the on-line chat environment. Therefore, Schmitt has the physician, dietitian, or other member of the health care team who is speaking arrive 30 minutes early to practice. She will then spend about 20 minutes chatting via the computer with the guest speaker so that he or she can see how long it takes to type answers, how long it takes for entered text to show up on the screen, and what it is like to be reading and thinking of answers simultaneously.
To make sure the session runs smoothly, Schmitt will send e-mail messages to everyone who has a password asking them to submit their questions in advance. Then she will conduct an interview with the speaker for the first 20 minutes so that all the common questions are addressed. The physician or other guest speaker is given the questions in advance so that they can prepare brief answers. In this way, during the group session, all the participants aren’t entering text at the same time barraging the speaker with a flood of questions that don’t have a proper flow. Also, it cuts the amount of time when the screen is blank as the speaker types in the answers to questions.
"It is helpful to have as much structure as you can bring to the format because discussion goes really, really fast," says Schmitt. Once the speaker has had time to present the topic, Schmitt opens the discussion up for questions that pertain to information that has been covered.
While practice makes perfect, many challenges have had to be addressed in order for the on-line support group to run smoothly. For example, the firewall that protects the hospital’s computer network system from hackers could not be removed to create the support group; therefore, the sessions take place off campus. The hospital had to contract with a company, and the group sessions are run from this site.
Another challenge has been finding enough generic topics to present to the general cancer group. Topics covered have included work-related issues, symptom management, and nutrition.
Also, people who participate are asking that the sessions be more frequent. "We are thinking about holding the sessions more than once a month. From the feedback we get from our participants it is too infrequent. If you are using an on-line modality on a frequent basis, a month seems like a really long time to go before you connect with people again," says Schmitt.
[For more information about facilitating an on-line support group, contact:
Pat Schmitt, MA, CRC, Program Director, Comprehensive Oncology Rehabilitation, James Cancer Hospital and Solove Research Institute, 300 W. 10th Ave., Columbus, OH 43210. E-mail: firstname.lastname@example.org. Web: www.jamesline.com.]