The primary purpose for having a support group is to provide education, information and mutual support for glaucoma sufferers and their family and friends.
There are many benefits to peer support groups: (taken from the University of Kansas Community tool box)
When someone doesn’t know many – or any – other people who are going through what he is coping with, he/she can feel isolated and stigmatized. Support groups help people with a problem or illness feel less alone and more understood.
Support groups don’t cost much to run – advertising for the group and maybe some refreshments are all you’ll probably need to pay for. Another cost might be meeting space, but you can usually get someone to donate it.
Support groups empower people to work to solve their own problems.
Members can share information, keeping one another up to date on news of interest to them.
Among people who are experiencing similar problems, there is a unique emotional identification that is different from the type of support that can be gotten from professionals.
Members act as role models for each other. Seeing others who are contending with the same adversity and making progress in their lives is inspiring and encouraging.
A support group is a safe place for someone who needs to talk about intensely personal issues, experiences, struggles, and thoughts.
Talking to a counselor or doctor can be very intimidating for some people, because those relationships tend to place more power with the professional. In a support group, members are equals; this can make people feel much more comfortable opening up about their problems.
Talking to others in support groups reduces anxiety, improves self-esteem, and helps members’ sense of well-being overall.
What follows is an outline for elements that should be considered when starting a support group.
Identify a central location that is easily accessible by day, preferably a weekend that offers free parking. Glaucoma patients can have a difficult time seeing at night and some are still working hence why a weekend day is optimal.
1.1 Good meeting locations can be a hospital, a library, church or an organization that support the visually impaired (i.e. Aurora of Central New York – http://www.auroraofcny.org/home-page/)
Identify an Ophthalmologist who is treating glaucoma patients who is willing to be a resource for your group including being a speaker from time-to-time. Having this relationship can also help provide a free meeting location.
Let the local community know that you have started a support group. In my case I approached the local newspaper and asked if they would do an interview about Glaucoma and the importance of a physical support group.
3.1 Use a well-known non-for-profit to spread the word like a Glaucoma Research Foundation, The Glaucoma Foundation, Prevent Blindness or Bright Focus for example.
3.2 Ask you local ophthalmologist to let patients know that a support group exists. In my case I put together a flyer (please see attached) that the doctors could hand out to patients.
3.3 Reach out to the local/regional medical society, and ask them to spread the word to doctors who may be seeing patients with glaucoma to let them know a support group exists.
Meeting once a month for 90-120 minute seems to work best for most people. In our case we meet on the third Saturday of every month from 1:00pm – 2:30pm. That way people can plan for the meetings and build it into their schedule. We always made sure to provide a snack, water, and coffee.
At the first meeting, have a sign-up sheet to collect names and contact information. In my case I also asked who they were seeing, what kind of glaucoma they had, how long were they living with the disease, was there family history, what eye drops they were on and what surgical procedures if any they had. The goal here is to immediately identify commonalities with patients and provide bases for future conversations and topics. Also stress that the goal of the group is both for providing mutual understanding and support as well as educating the patient so they will feel less in the dark about their disease, and thus hopefully begin to feel less anxious.
Be prepared to have educational literature available to pass out for free. In my case I had copies of Doctor I have a Question from The Glaucoma Foundation since I did not know of the Glaucoma Research Foundation. With the help of the WGA and organizations like Glaucoma Australia, we may have access to all kinds of information patients may find valuable. In addition, you may wish to have a list of different online resources like APUP, the Yahoo Chat Group for patients with Glaucoma, which the patients might find helpful.
When starting a new group, be prepared to ask the members what they would like to get out of the group and what topics might be of importance. This will help with any additional educational information patients may want to know about.
On the educational front try to bring in a specialist such as an Ophthalmologist, Pharmacist, Nutritionist, Psychologist, and someone from an organization that deals with the blind and visually impaired. Ask each subject matter expert to discuss topics that you collected from the group. The pharmacist for example can talk about drug interactions that patients may be concerned about with their eye drops. The nutritionist can address any myths that might exist between diet and glaucoma. The psychologist can talk about methods to help you reduce your stress or anxiety. Our contact from Aurora talks about visual aids and special glasses like yellow tinted sunglasses that can be used by patients who drive at night to cut down on the glare of oncoming headlights.
It is important at the beginning of each meeting to let every member talk about how things are going in their lives and any changes that may have occurred since the last meeting. Reassure them that what is said in the room, stays in the room unless they give permission to talk with others outside the room to help get answers. Knowing that another patient may have gone through a procedure that you are about to, and being able to ask them questions about that procedure is invaluable. If they choose to bring a friend, or family member that is fine. Just be sure to have them introduce themselves.
As the support group leader, be prepared to talk with group members in between meetings. Every member in my group has my personal email and cell phone should a situation arise where they feel the need to talk or ask for help.
Work on getting the community involved. Every January is National Glaucoma Awareness month in the USA. Try to work with local glaucoma doctors to offer free screenings at least in the month of January.
Be creative. In addition to having in-person presentations we have watched educational videos and even had people join us via video conference to talk about a certain topic or issue.