Support Groups in Sleep Disorders Medicine
Starting a support group for your patients can be very rewarding. They can be beneficial for the community and for the sleep center as a way to market the program. There are many different types of support groups — OSA, RLS, insomnia and narcolepsy being a few.
Is a Support Group Necessary?
This is a great first question before planning to start a group meeting. When the UCSF Sleep Disorders Center and I started our support group for patients with sleep apnea, we sent out a survey to find out the level of interest, meeting topics, time of the meeting (day or evening) and frequency (monthly, quarterly, etc.) of our patients.
In the age of online communications, you can also consider creating or joining an existing online community, such as one within social media (e.g., Facebook).
Who Leads the Meetings?
Now that you have your framework down for which group you wish to form, you need to decide if it will be sustainable if you or someone from the sleep center is to lead it.
You may be lucky and find a volunteer meeting attendee who can take over leadership, or at least be an active participant and assist with running the meeting or planning the speakers. Making the time for you or one of your staff to coordinate the meeting is best, and if the sleep center has a room available for the meetings to take place, even better.
Our group is attended by one of our lead technologists, who introduces the speakers and is available after the meeting for questions. I coordinate the website and schedule, and book the speakers.
We also invite different DME companies from the community to support the meetings with refreshments and a knowledgeable respiratory therapist (RT) for mask or PAP machine questions.
Virtual/Online Support Groups
The idea of online support may be appealing to some, especially if the patient is homebound, lives far from the facility, or if the facility is hard to get to (parking, city, traffic). During the current pandemic - this may be your only option for awhile!
If you decide to pursue an online support group, there are many different ways to do this. You can have a synchronous “virtual” meeting using some of the many platforms available like WebEx or Zoom. This would allow for a set time, and all members can get online and have a real-time discussion or view a presentation.
You would want to make sure everyone has access to the technology needed to do this. Another way to achieve an online support system involves asynchronous contact, which means patients can post questions, videos, etc., and read or post responses at other times. Examples of asynchronous contacts are Facebook posts, group email and online discussion boards.
General Rules of Support Groups
No matter the type of group you create, you will want to make sure you lay out some ground rules prior to each meeting to make sure your patients have a meaningful and respectful experience.
Here are some general support group ground rules:
- Keep what you hear confidential
- Do not talk when others are speaking
- Allow others to ask questions
- Do not monopolize the time of the speaker; three minutes per person if others are waiting is standard
- Be respectful of other’s opinions
As a support group, patients should support each other and assist with each other’s success with therapy. If they cannot commit to these ground rules, then we ask them not to attend until they can.
These rules may seem like common sense; however, if you have ever been to a support group, I’m sure you have experienced people who monopolize the meeting and talk over others.
There are resources for starting whichever type of support you are interested in. Below are the four main sleep disorders that have established support groups and their resources.
OSA Support Groups
For a sleep apnea support group, as with any, you have to decide if the group is for the community or for your sleep center patients only. The upside to opening it to the community is the sleep center exposure and marketing opportunity.
We have offered different types of meetings, including those with guest speakers and a yearly equipment fair. Topics have included Understanding Your Sleep Study Results, Current Research in Sleep Medicine and Coping Strategies for Using PAP Therapy.
We began our meetings years ago by utilizing the ASAA AWAKE resource. They have a great website and a virtual online presence on Facebook.
Restless Legs Syndrome (RLS) Support Groups
The Restless Legs Syndrome Foundation has a great website for patients to get information about support. The groups have a similar framework as OSA support groups. Guest speakers talk on topics such as medications, supplements and behavioral aspects of treatment, as well as advocacy. These groups also share coping strategies.
Insomnia Support Groups
When I did a search on insomnia support groups, there were many online forums and discussion boards. The search also came up with some informational websites sponsored by drug companies (surprise, surprise). I also saw some Facebook groups dedicated to those suffering from insomnia. I did not, however, find a single go-to website or organization that could support the foundations of creating an in-person group.
There were a few clinics that see insomnia patients in groups, but they are considered services, with payment necessary. Similar to these clinics, and different than a support group, is cognitive behavioral therapy for insomnia, or CBTI. CBTI group sessions last approximately eight weeks and are also billable services. The results of CBTI are very promising. Online CBTI used to be offered for a fee through a company called SHUTi, but these services are no longer available. There may be other online resources available.
Narcolepsy Support Groups
The Narcolepsy Network (NN) is a great resource for patients with narcolepsy and for those interested in starting a narcolepsy support group. You can also direct your patients to the NN website for their personal support and information. This nonprofit group has been around since 1986 and is a great advocacy organization that has a wealth of information. They have annual conferences for people living with narcolepsy and their families. Online support might be the best way for your patients to connect with others, as they also have a Facebook page.
Regardless of what type of meeting you decide to create, it is important to evaluate the necessity of the meetings periodically, to make sure you are meeting the patients’ needs and balancing the time you or your staff can devote to these ongoing activities.
Don’t be afraid to change the format, or if you feel the meetings are no longer attended regularly, then perhaps, in these changing times of getting most of our information through the web, you may find an in-person meeting is obsolete and you need a creative online presence.
About Kimberly Trotter, MA, RPSGT, FAAST
Kimberly Trotter, MA, RPSGT, began her sleep career while completing her master’s degree in psychology with an emphasis in behavioral sleep research. She started as a clinical sleep technologist, conducting sleep disorders testing in a sleep disorders center, and has been in the field of sleep for over 30 years. Over the years, she has published and presented sleep research, created and taught insomnia classes, coordinated support groups for sleep apnea sufferers, presented educational talks on sleep and health to the public, written numerous articles on sleep, taught sleep disorders medicine to future technologists and physicians, and accredited two sleep disorders centers. She served on the AAST Board of Directors from 1996-1998, was the 1999 recipient of the Carskadon Research Award, and the 2006 recipient of the Allen DeVilbiss Literary Award. She is currently the administrative director of the University of California San Francisco Adult and Pediatric Sleep Disorders Center, AAST Ethics Committee member, founding member of the California Sleep Society, adjunct professor at Skyline College and has a very active support group for sleep apnea sufferers.