Alternative methods of support offer self-help techniques, empower patients
Technology, special curriculum target overlooked patient populations
When first diagnosed with fibromyalgia syndrome, a musculoskeletal pain and fatigue disorder, Kay Starnes, LMT, couldn’t find much information on how to cope with the chronic condition. Starnes is a massage therapist and head of the fibromyalgia program at St. Joseph’s Specialty Center for Wellness & Rehabilitation Care in Atlanta.
Traditional support groups she attended were often complaining sessions without many real solutions, and her physician was of little help. "When I was diagnosed with fibromyalgia, my doctor said, This is what you have, here are some drugs, you will have it the rest of your life.’ I thought there must be something I can do for this," says Starnes.
It quickly became evident during her research that help for this patient population was long overdue. Starnes began advocating a self-help course for the general public, using information developed by the Atlanta-based Arthritis Foundation. The day the newspaper ad for the course ran, the Specialty Center at St. Joseph’s Hospital of Atlanta received more than 200 telephone calls for a 15-person group.
The response did not surprise Starnes. Fibromyalgia is the most common musculoskeletal disorder in the United States, yet it is not readily understood by either the medical community or the general public. Information is hard to come by, and patients often feel alone and isolated by their disease.
St. Joseph’s and other health care facilities have begun targeting patient populations often overlooked, using a variety of methods from the Internet to conference calling. The emphasis is usually on self-help and peer access and the response is often large and remarkably grateful.
St. Joseph’s is focusing on self-help groups with a strong education component that teaches management skills. Unlike traditional support groups that continue for an unlimited amount of time, the self-help groups are finite, lasting six or seven weeks, with some time for personal discussion. Because the courses run in cycles, the educators have the potential to serve more people, they reason.
"We often have people who need the information and some support. Those who need more of the support part often continue with that independently with one or two people they meet," says Joyce Dittmer, RN, MSN, director of education services at St. Joseph’s. So far, the hospital has launched self-help groups for Sarcoidosis and stroke as well as fibromyalgia.
Although most people are familiar with stroke, rehabilitation staff at St. Joseph’s 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.
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. (To learn how self-help groups work, see story, p. 67.)
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 non-traditional support groups, see story, p. 68.)
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 has seven to eight members.
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 which 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 find out how to find and evaluate support opportunities on-line, see story, above.)
[Editor’s note: For more information on the fibromyalgia self-help course, contact: Kay Starnes, Specialty Center for Wellness & Rehabilitation Care, St. Joseph’s Health System, 1155 Mount Vernon Highway, Suite 900, Atlanta, GA 30338. Telephone: (770) 730-2776. 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 Technolgies Initiative, 1800 Harrison St, Suite 1301, Oakland, CA 94612. Telephone: (510) 987-3676.]
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