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 a while, 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—actually predates the creation of the ASAA by 1 year. Seger and her 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 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 HME 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.

We encourage coordinators to find speakers on topics related to sleep apnea, including sleep hygiene and other sleep disorders. 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 inspection.

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. 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 ordering 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. However, most groups will require a dedicated nonpatient coordinator, such as a sleep technologist or a respiratory therapist working for a DME company involved with the group.

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. The ASAA Web site is www.sleepapnea.org and Grandi can be reached via e-mail: egrandi@sleepapnea.org.