Starting an A.W.A.K.E. support group can help your patients become more compliant with sleep apnea treatment.
If you have worked in the sleep field for any length of time you have probably heard the phrase alert, well, and keeping energetic (A.W.A.K.E.) to describe a support group, sometimes even if the group is not affiliated with the American Sleep Apnea Association (ASAA). The A.W.A.K.E. Network of support groups—established in 1989 by Lucy Seger, with the support of a committee made up of Joyce Black, Nancy Kern, Jean Hardy, and Linda Napierala—actually predates the creation of the ASAA by 1 year. Seger and her dedicated committee understood that by using mutual support it is possible to improve adherence to therapy among sleep apnea patients using CPAP.
Today, the nearly 300 groups around the United States and in British Columbia, Canada, that have signed statements of understanding with the ASAA provide a place for sleep apnea patients and their families to go for three things: mutual support, continuing education, and empowerment. Many sleep apneics feel, at least initially, that they are all alone with their condition. For many, there are challenges with treatment, such as becoming comfortable using the mask, getting used to the air pressure from the device, and feeling embarrassed to use the device in front of a spouse or companion. A group meeting can reassure patients that there are others just like them and there are strategies for overcoming most CPAP treatment compliance challenges. For example, if mask fit is a problem, switching to a different mask than the one provided by the home care company may bring relief. In some cases, simply knowing that there are others with machines set at higher pressures than theirs can help with getting used to the positive air pressure. Finally, some may simply need reassurance that their bed partners would rather not hear them snore or worry about whether they are breathing than see them wear a mask during sleep. The format of most meetings allows for individuals to ask questions and to share their experiences with treatment.
Another important element of participation in a support group organized under the A.W.A.K.E. model is continuing education. We encourage coordinators to find speakers on a topic related to sleep apnea, including sleep hygiene and other sleep disorders. One group in an upcoming meeting will have a state highway trooper speak on drowsy driving. The possibility of subject matter is limited only by who is available to speak. Nearly all groups have equipment fairs where representatives from the various device and mask manufacturers come to display their latest models. The fairs are an opportunity for patients to bring in their machines to have the pressure checked and for a general “look-see” inspection.
Mutual support combined with continuing education equals an empowered patient that is more likely to adhere to treatment. The primary goal of the group is to help patients to comply with their therapy. An additional benefit of participation is that some patients will become interested in helping others get diagnosed and/or overcome challenges with treatment compliance. We can certainly use all the help we can get to make the millions who have sleep apnea aware of the condition.
Why Start an A.W.A.K.E. Group?
The best benefit of being part of the A.W.A.K.E. Network of support groups is increased visibility. Member groups are listed in the support group search engine on the ASAA Web site. The search engine is in the top 10 most frequented pages on our Web site. Other benefits include being able to use the trademarked ASAA logo and the name A.W.A.K.E., and receiving a subscription to the ASAA’s quarterly newsletter WAKE-UP Call.
Starting an A.W.A.K.E. support group is fairly simple. First, check if there is an existing group in your area. If there is, contact it to see how your organization can partner with it. If there is not a group in your community, setting up a group begins with following the guidelines published by the ASAA. You can get a set of the guidelines by becoming an organizational member of the ASAA (which comes with additional benefits), or by just ordering the guidelines through our Web site.
Once you have reviewed the guidelines, complete and sign the “Statement of Understanding” and the form “About My A.W.A.K.E. group” and fax both to the ASAA office. In addition, we ask that groups fax us their meeting summaries after each A.W.A.K.E. event so that we can keep track of the active groups. We also use this information in the “A.W.A.K.E. News” column in the newsletter.
The guidelines indicate that groups should be patient-led. This is the ideal leadership model, since the group is first of all for the benefit of the patients. The meetings will help sponsoring sleep centers and sleep laboratories, but this is an added bonus and not the primary purpose of the group. However, from a practical standpoint, most groups will require a dedicated nonpatient coordinator, such as a sleep technologist or a respiratory therapist working for a durable medical equipment (DME) company involved with the group.
The ASAA does not specify any schedule for how often a group meets. It depends on what works for the coordinator and for those in the group. There are groups that meet monthly and other groups that meet three times per year.
The association is fortunate to have Dave Hargett as its chair. Hargett coordinates two groups in the Chicago area and had a hand in establishing several others. He and I are available to answer questions and to provide support to coordinators with questions or concerns.
In addition to the groups that meet in person, the association established an Internet-based or virtual support group called the Apnea Support Forum located online at apneasupport.org. The forum is subdivided into different topic areas, where patients can post their questions and comments. There is also a chat room feature where people gather to exchange information in real time.
The online group is meant to complement the A.W.A.K.E. groups by providing a place for people with questions to go between meetings and a way for those who don’t have a group nearby to get the help they need. This online community has participants from all over the country, Canada, and around the world. It is interesting to see that challenges to treating sleep apnea and using CPAP are the same everywhere.
The forum celebrated 1 year of service to the apnea community in June and now has more than 3,000 registered members. The latest improvement to the site was the addition of a Spanish language section. Dr Alberto Servin, a pulmonologist specializing in sleep medicine in Tijuana, Mexico, has very generously offered to moderate this new section. He is also working to establish the first A.W.A.K.E. group “south of the border.” In addition, our online community has topic areas exclusively for sleep professionals and A.W.A.K.E. coordinators.
When I travel on behalf of the association, I make a point of visiting A.W.A.K.E. groups if there are ones in the areas I visit. I am pleased to report on the activities of the ASAA to those present and to offer words of praise for the coordinators of the group.
Factors For Success
Opinions vary on what makes a successful A.W.A.K.E. group, but my prescription is:
• The right frequency of meetings for your community.
• The proper mix of educational presentation and time for sharing personal experience.
• A regular opportunity to see new equipment and help making sure existing equipment is working well.
If you are interested in establishing a group or bringing an existing group under the A.W.A.K.E. Network umbrella, please feel free to call or send me an e-mail.
Edward Grandi is executive director of the ASAA, Washington, DC. Founded in 1990, the nonprofit ASAA is dedicated to reducing injury, disability, and death from sleep apnea and to enhancing the well-being of those affected by the disorder. Its Web site is www.sleepapnea.org. Contact Grandi at (202)293-3650 or firstname.lastname@example.org.