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How to Start a Diabetes Support Group

Organizing The Group

Gather together your initial organizing committee for a planning meeting. The purpose of this meeting is to decide in general terms what your self-help group is about and where it is going. You can then present your ideas at the first general meeting for feedback and revision

1. Define your group’s shared concern.

This concern might be a medical disorder, mental illness, loss, disability, addiction, family issue, or other life experience that you share with others. (Examples include AIDS, depression, unemployment, autism, gambling, adoption and breast feeding.)

2. Decide who can join your group.

At the beginning, most self-help groups include only those who have the shared concern or problem. Family, friends, relatives, and visitors can be included at a later date.

3. Establish the group’s initial focus.

Don’t try to do everything at once. Consider focusing on only one or two activities at first. Here are some suggestions to choose from:

	Share the feelings and experiences.
	Exchange information and resources.
	Discuss new ways to solve old problems.
	Find ways to reduce stress and anxiety.
	Allow your group to develop slowly. Groups that choose to do public education or take social action may find it helpful to delay these activities until they are well established.

4. Try to keep it small at first.

Since discussions are usually the main activity of a new group, it is wise to try to keep the size between 4 and 15 people. This is large enough to bring a variety of experiences to the group, yet small enough to allow everyone a chance to participate.

5. Pick a name.

This can be fun. Although you may want the name to define your purpose or area of interest, a touch of humor can be appropriate. One group of people with leg amputations named their group Prosthetic Education and Group Support (PEGS).

Be sure to make the name inviting. "Parents Supporting Parents" may be more appealing that "Parents Overwhelmed by their Kids".

6. Define your relationship with professionals.

The real experts are the people who have the problem. They become more powerful and healthy by learning how to help each other as well as themselves. This is what the author of "Death to Diabetes" learned. He believes that taking notes and listening to the stories of all the other diabetics helped to accelerate his learning process tremendously. Of course, at that time, he didn't realize that what he was learning was going to help him write a top-selling book about diabetes!

Professionals can be very helpful as resources for your group. For example, a physician, diabetes educator, nurse, nutritionist, or a diabetes author can serve as a guest speaker, spread the word about the group, or provide you with technical information.

7. Establish levels of anonymity and confidentiality.

In an anonymous meeting, people are given the option of not revealing their full names. In some instances, such as an Incest Survivors Group, this is very important. In others, it may be unnecessary.

Confidentiality is the practice of keeping private what occurs and is discussed during a meeting. Since members often interpret this idea in different ways, it is important to define what your group wishes to keep confidential. Most groups ask members to say nothing about what was seen and heard in the meeting outside the group.

Some groups practice a less strict degree of confidentiality. They allow members to talk about the meeting with people outside the group as long as no identifying information is used. Still other groups have no need for confidentiality.

8. Consider whether or not your group really needs to collect money.

Many groups do not need to handle money. A friendly organization, such as a church, synagogue or mosque is often willing to donate free meeting space and other resources.

You can also ask members to buy and bring specific things (such as refreshments) or ask for a small donation to cover specific costs.

9. Incorporation.

Many groups remain small or medium sized and informal. Others are already incorporated in a way because they are sponsored by a non-profit group. Some self-help groups decide to incorporate as a non-profit, become an association and to have meetings or chapters in various locations. The Neurofibramatosis Foundation began at a kitchen table, but within 5 years, had chapters across the country! If incorporation is your goal, a lawyer who is a member or friend of the group may help get the ball rolling.

10. Decide how often to meet.

Every self-help group is different. Some groups meet weekly. Others (such as those that deal with addictions) meet more frequently. Still others (such as those that deal with rare illnesses) may meet only a few times a year.

Meet often enough to provide steady group support, but space the meetings far enough apart to leave people looking forward to the next session. Invite members to stay in contact by telephone or email.

FYI: Two-hour meetings held every other week seems to work best for most diabetic groups.

11. Prepare a list of possible activities.

Activities may include reviewing current literature, a field trip to other groups as well as providing each other with support and exchange of ideas.

12. Think "Mutual-Help" from the Start.

Give every new member the opportunity to contribute to the group and feel appreciated from the beginning. Here are some ways to do this:

	Look within the general membership for programs and ideas.
	Rotate tasks among group members. Share in leading meetings, providing refreshments and other tasks.
	Essential ingredients. Choose where to meet.

Pick a location where people will feel comfortable in sharing feelings and experiences. Some groups meet in libraries, schools or churches. Other groups rotate their meetings in members’ homes.

When selecting a meeting place, look for the following:

• Central locations that are easy to find.
• Long-term availability.
• Facilities or rooms that can grow with your group.
• Parking nearby.
• Access for people with disabilities.
• Access to public transportation.

Set a day and time. Make it as convenient as possible for all members.

13. Community Outreach

• Contact your local hospital, social services department and community health department.
• Approach local industries/business about getting ads in their periodicals or newsletters.
• Contact local offices, associations and foundations that address your area of concern (e.g. office on aging, handicapped, March of Dimes, mental health association, etc.)
• Call you local information centre and referral helpline/ hotlines --make sure they know of your group’s existence.
• Write a brief notice and ask that it be placed in church bulletin or newsletters. Consider other newsletters and the YMCA, etc.
• Write letters to the editor of a local newspaper, explaining the group’s purpose. It is especially likely to be printed if you comment in response to a current article or editorial.
• Write a brief public service announcement and send it to local radio and TV stations.

14. Share the work.

Everyone can help; share tasks to help people feel more involved in the success of the group. Here are some things to accomplish before the first general meeting:

• Prepare the meeting space.
• Arrange refreshments.
• Decide on an agenda.
• Provide name tags, pens and paper.
• Select one or two people to lead the first general meeting.
• And before you go home... Exchange names and phone numbers if members are comfortable sharing this information. This list will allow you to call each other not only about organizational matters but also for encouragement and support. Your committee is a self-help group in itself!

How to Make It Work Over Time

1. Welcome everyone.

If you use a sign-in sheet or name tags let people know that these are voluntary. This shows respect for their privacy and confidentiality. People may be more comfortable revealing their identity later in the meeting after they know more about the group.

2. Open the meeting

The opening sets the tone for the entire meeting. Here are some hints for the leaders:

• Start on time.
• Welcome everyone.
• Describe the group’s purpose and guidelines. This serves as an orientation for new comers as well as a reminder for returning members.
• Review the agenda. Also note the closing time, but let people know it’s okay to leave early if they need to do so.
• Emphasize confidentiality (if it applies to your group). Explain exactly how your group uses this term.

3. Introduce members.

Invite all who wish to do so to introduce themselves. You may also wish to invite them to share their reasons for coming to the group.

4. Have an activity that is meaningful to the members.

Although you may wish to include a special program at your first meeting to attract new members, it is best to make the organization of the group your main topic of discussion. Present the suggestions of the initial organizing committee and open the floor for comments and additional ideas. Be sure to let the members know that this is their group.

At subsequent meetings you can use this time to feature speakers, hold discussions, share information and experiences or have special social activities. Some groups choose to alternate program meetings with social or informal discussion gatherings. Larger groups sometimes break into smaller groups to work on projects, programs, or to share experiences.

5. Deal with practical matters quickly.

Allow a few minutes for group business, announcements and promotion of future meetings.

6. Closing the meeting

Make positive closing remarks. This will leave people with good feelings and a desire to return.

	Keep it short.
	If a goal of the meeting was to work on a task, remind people in a positive way how much was achieved.

Allow time for informal sharing after the formal meeting closes.

7. Post-meeting Logistics

8. Issues and problems

Ups and downs in attendance are normal.

Other problems may include:

• Monopolizers who talk forever. Set up guidelines for discussions. Some groups sit in a circle, allowing each member in turn to talk or pass. A specific time limit can also help. Also ensure the chair or leader of the group gives everyone his or her own turn.
• Not enough active listening. People respond positively when others genuinely listen to and care about what they say. Consider having "active listening" training sessions to help members improve their verbal and nonverbal communication skills.
• Too much negativity. Refocus the group from negative to positive. Give members a task, such as listing common and unusual ways of solving shared problems.
• Leader burn-out. Encourage shared leadership.

Re-evaluate periodically. Be sure that the programs, meeting place, time and frequency continue to match the needs of group members.

Check Your Progress!

Here are some yardsticks to measure what your group has accomplished:

Do members give and receive support on a regular basis?

Do `older’ members help out newcomers?

Are members "graduating" from the group?

Is the group achieving all its goals and no longer needing to meet?

In short, accept that your group needs to be flexible and adaptable to meet its members’ changing needs. Build review and change into the way you run it as well as making special efforts to check on what you’re doing. Be proud of your achievements!

Note: Make sure you bring in role models -- people who have been successful with controlling or defeating their diabetes. These types of people bring hope and inspiration to your group members. Don't bring in too many conventional doctors who may tend to "push" the drug message. Also, be wary of people who want to "push" their own pills or product.