Alternative methods of support empower patients

Although most people are familiar with stroke, rehabilitation staff at St. Joseph's Hospital in Atlanta saw the need to teach survivors of stroke and their families how to maintain a quality life despite disabilities. "Stroke survivors may make a lot of improvements, but at the same time, they need to learn to compensate for their problems for a lifetime. Learning how to make those lifestyle changes and compensations is very important," says Melanie Schleicher, MS, manager of the Communication and Swallowing Disorders Department at St. Joseph's and chair of the committee that created the self-help group. (See sample education materials for stroke patients, pp. 145-146.)

A common thread of self-help groups is patient empowerment. Not only do the courses teach people to manage their symptoms more effectively, but they also teach them to take an active role in their health care.

Technology links hard-to-reach patients

Technology provides another avenue for patient support and education. In mid-1996, Oakland-based Kaiser Permanente of Northern California launched a telephone peer support project at the urging of a former bone marrow transplant patient. This pilot project seeks to make peer support more accessible for patients spread across a wide geographic region or who find their illness prohibits them from attending meetings in person. Because bone marrow transplant patients undergo a debilitating treatment and have a recovery of up to two years, often with complications, troubling symptoms, and deep emotional lows, they are often cut off from outside life.

The groups meet twice a month with the aid of a conferencing bridge. The group facilitator opens the bridge by entering an access code, and members call in.

"It is very similar to a face-to-face group where there is a check-in to see how people have been doing over the last couple of weeks, and if they have any particular issues they want to talk about, then the discussion starts," says Beth Eshelman, LCSW, manager of the telephone discussion group project, which is part of Kaiser's Interactive Technologies Initiative. (For structure and facilitation tips for nontraditional support groups, see story, p. 144.)

Currently, there are four telephone discussion groups that will meet for six months. Two of the groups are for breast cancer patients who have undergone bone marrow transplants, and two are for patients with other conditions requiring bone marrow transplants such as leukemia or lymphoma. Each group has seven to eight members.

Am I going crazy?

A pre-pilot test group found the method to be successful, with one participant commenting during a follow-up survey that "[the group made an incredibly big difference for me. I seriously was starting to think I was going crazy. Connecting with this group showed me that others were experiencing the same side effects as me, [which] doctors never told me . . . was normal."

The Internet is another technology that can be used by patient education managers to provide peer-to-peer support for patients. This medium offers several opportunities for people to obtain information to help them manage their disease, says Joyce Flory, PhD, creative director for Alliances Interactive, an Internet consulting firm in Alexandria, VA.

Many Web sites and commercial services, such as America Online, have chat groups that focus on specific topics. They are generally moderated and have a scheduled time when a limited number of people "meet" to talk. When the chat room is "full," no one else can enter. These groups vary in style, says Flory. Some allow everyone to ask a question; others are sharing- and comment-oriented, while others focus on a particular topic at each session. Some sites provide transcripts of former chat topics for people who were not able to attend.

Also, the Internet has mailing lists people can subscribe to that can be a means of support, says Flory. For example, people who subscribe to a list for stroke survivors automatically receive information on strokes from other subscribers. They can post a question, and others will post answers.

To learn more about the stroke self-help course, contact: Melanie Schleicher, Communications and Swallowing Disorders Dept., St. Joseph's Hospital of Atlanta, 5665 Peachtree Dunwoody Road NE, Atlanta, GA 30342. Telephone: (404) 851-5586. For information on the telephone discussion group, contact: Beth Eshelman, The Permanente Medical Group, Interactive Technologies Initiative, 1800 Harrison St., Suite 1301, Oakland, CA 94612. Telephone: (510) 987-3676.