Education and support on-line is winning combination
Homebound patients not forgotten
The on-line support group for cancer patients organized by James Cancer Hospital and Solove Research Institute in Columbus, OH, is like any other support group that meets in person except that it is two-dimensional, says Pat Schmitt, MA, CRC, program director for comprehensive oncology rehabilitation.
The group, which has a facilitator and a guest speaker, meets once a month. A handout with more detailed information often is 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, making it easy to collect data. Patients who were interested in trying an on-line support group said they wanted it to be educational as well as supportive.
The project team decided the group should be professionally facilitated, rather than being 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," says Schmitt.
People can choose when they want to participate based on whether or not 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.
On-line anonymity can facilitate questions
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," she explains.
Older adults are participating in the on-line support group, which particularly pleases rehab managers because they have had difficulties serving this patient group in the past. That’s because older adults don’t like to come back to the hospital in the evenings to attend a class, clinic, or traditional support group, says Schmitt.
In addition, the 30% to 40% of patients who live out of the area can take advantage of the on-line support group once they leave the hospital. It’s also convenient for chemotherapy patients who need to conserve their energy by running fewer errands.
The general attendance of the on-line group is between eight to 10 people, including a few regulars and several one-time 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.
Facilitation a challenge
To facilitate the communication process, Schmitt monitors the discussion. She tries to ensure that people who ask questions receive a response, and she redirects people when necessary by typing something like, "We have had many questions from Ian, let’s hear from Sally." Schmitt often takes notes to keep track of who is participating.
Sometimes a participant will type in several questions in rapid succession, so she will select the question she thinks will be of interest to most people and then ask 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 using the system. She will then spend about 20 minutes chatting via the computer with the guest speaker so that he or she can learn how long it takes to type answers, how long it takes for entered text to show up on the screen, and what it’s like to be reading questions 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 he or she can prepare brief answers. In this way, all the participants aren’t entering text at the same time during the session, barraging the speaker with a flood of questions that don’t have a proper flow. Also, this cuts the amount of time that the screen is blank as the speaker types in 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.
Working around the firewall
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 that provides a site from which group sessions are run.
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.
Need more information?
• Pat Schmitt, MA, CRC, Program Director, Comprehensive Oncology Rehabilitation, James Cancer Hospital and Solove Research Institute, 300 West 10th Ave., Columbus, OH 43210. E-mail: [email protected]. Web: www.jamesline.com.
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