How to Start a Support Group The Alliance on Mental Illness NAMI Chicago 1536 West Chicago Avenue Chicago, IL 60642 Phone: (312) 563-0445 Fax: (312) 563-0467 Website: www.namichicago.org Revised November 2009 How to Start a Support Group TABLE OF CONTENTS Tips for Starting a Support Group ………………………………2 Group Guidelines – General ……………………………………...5 NAMI Support Group Guidelines – Specific ……………………5 Responsibilities of Group Members to Each Other …………..5 Eight Step Agenda for Support Group ………………………….6 Alcoholics Anonymous’ Twelve Steps…………………………..7 Factors to Consider in Planning Your Discussion Groups…..7 LETTING GO…………………………………………………………..8 Assertiveness is…Assertiveness is Not………………………...9 Tips for Handling Common Group Problems ………………...10 STRESS: The Wear and Tear Syndrome……………………….12 The information in this guide was gathered from a variety of source materials that have been in use in the NAMI Chicago office over the years. We have edited and revised much of the material to suit this present purpose. The original sources are not known and therefore are not cited here. We hope that you find this material useful in your planning for and hosting of a support group. Compiled November 2009 1 How to Start a Support Group Congratulations! You have interest in, or have already begun, starting to put together a support or self-help group. You'll find lots of help available to make it easier and even fun. Today, you have a choice of having meetings face-to-face, by telephone conference, or by Internet "chat" or "bulletin board". Support groups can be very useful. Talking and sharing experiences with understanding others helps most people. Others who have dealt with similar issues are the most likely persons to be understanding. Before you begin, measure your own commitment to the project. As all projects go forward some ideas will fall right into place while others will require some hard work and disappointment. Be certain that your commitment will be able to withstand some setbacks. Tips for Starting a Support Group 1. Don't Re-invent the Wheel Chances are that a group focused on your particular concern already exists. If you have a local self-help clearinghouse serving your area, call to whether or not there is already a group in your area. If you find an existing national group, contact them and ask for any "how-to" guide or starter packet they may have. Ask about group leaders nearest to you and consider calling them. If you are contacting a model group for your issue, ask if they might send you sample material they have used (flyer, press releases, etc.). If there is a local self-help clearinghouse in your area, also determine from them what assistance they can provide to you in developing your group. If you can, consider attending a meeting of one or two other local self-help groups that may be somewhat similar to the group you are starting, simply to get a feel for how they operate, then borrow what you consider their best techniques to use in your own group. Before going to any such group, call first and ask if you may attend. The most valuable person to contact is someone who has founded and led a group very similar to yours. Be sure to ask for ideas that have worked, as well as things they did which did not work! 2. Work with others from the start. Think "Mutual-Help". You do not have to start a group by yourself. Find a few others who share your interest by circulating a flyer or letter that specifically states how to contact you if they are interested in "joining with others to help start a group". Include your first name, phone number, and any other relevant information. Make copies and post them at places you feel are appropriate, e.g., library, community center, clinic, or post office. Mail copies to key people who might know others interested in this issue. You can also ask if the notice might be published in your local church bulletin and newspaper. When you receive a response, discuss with the caller what their interests are and what you would like the group to do. Ask if they would be willing to share the responsibilities of organizing a group for a specific period of time. By involving several people in the initial work of the first meeting, they will model for newcomers what your self-help mutual-aid group is all about: a cooperative effort. Also, consider obtaining the assistance of any professionals who may be 2 sensitive to your needs and willing to assist you in your efforts. Physicians, clergy, and social workers may be helpful in various ways, from providing meeting space to locating needed resources. If you start the group alone, it will likely forever be identified by members as "your" group. You then have the pleasure of doing all the work and often figuring out why so few people attend. If you as "founder" of the group identify a few others as "leaders" and all of you start the group, you then have a group started where every member feels some ownership of the group and is invested in its success. In addition, as new folks join, they are more likely to recognize that it is important for every member to make some contribution to the group. 3. Advance Planning Before Your First Meeting Decide your audience. Do you want a support group for family members and caregivers, parents, teens, teachers, consumers, women, or any other designated grouping of persons, start small with just one group in mind. Meet with your other leaders and set an itinerary for the meetings. What do you want to accomplish at each meeting? Who will be responsible for what? Will you have refreshments? Can child care be provided? Write up a handout with all of your information to be handed out to each individual that shows up for the meeting. Make sure your handout includes all contact names, phone numbers and email addresses. 4. Finding a Suitable Meeting Place and Time Try to obtain free meeting space at a local church, library, community center, hospital, or social service agency. Chairs should be arranged in a circle. Avoid a lecture set-up. If you anticipate a small group and feel comfortable with the idea, consider initial meetings in members' homes. Also, try and set a convenient time for people to remember the meeting, e.g., the first Tuesday of the month. Keep your meeting at the same place, same time during the beginning weeks. Have your meeting, whether or not any outside guests show up. Sometimes it will take a few weeks for you to start getting some people on a regular basis. 5. Publicize and Run your First Public Meeting Start small. This will give you a chance to work out the bugs, make some mistakes, and generally get things in order before you do your marketing to the general public. To reach potential members, consider where they might go to seek help. Would they be seen by particular professionals or agencies? If the answer is yes, try contacting these professionals. Posting announcements in the community calendar section of a local newspaper, library or community center can be especially helpful. The key is to get the word out. At the beginning of each meeting, have handouts with the goals for that night, contact names and phone numbers and reminders of when the next meeting will be held. That way all visitors will have a written reminder. 3 The first meeting should be arranged so that there will be ample time for you and other core group members to describe your interest and work, while allowing others the opportunity to share their view of how they would like to see the group function. Identify common needs the group can address. Although you do not want to overload your new arrivals with information, you do want to stress the seriousness of your intent and the necessity of their participation. Make plans for the next meeting and consider having an opportunity for people to talk and socialize informally after the meeting. Tips for the Meetings: • Place chairs in a circle and close enough that all members can hear. • Observe time limits. Start on time and end on time so that members feel you are reliable and if they should have babysitters, they will be able to work with them easier. • Be up front if no child care is available, let members know ahead of time if children are welcome and if not, don't start making exceptions. • Be prepared to have you or your co-leaders do most of the speaking initially until your members begin to feel comfortable with each other. • Set up a support system and network for your members in between meetings. Encourage your members to exchange contact information and talk with each other in between meetings. • Contact local professionals about being a guest speaker. • Give your support group at least 2 months to get going. In the beginning members may come and go but if you keep at it, you will eventually have a small core group that is always there. • Keep injecting fresh ideas, new guest speakers and have a written plan for each meeting to keep everyone on track. Keep it lively and interesting so the members look forward to getting together. 6. Future Meetings For future meetings consider the following: • Purpose: Establish the purpose of the group. Is the purpose clear? Groups often focus upon providing emotional support, practical information, education, and sometimes advocacy. Also determine any basic guidelines your group will have for meetings to possibly ensure that group discussions are confidential, non-judgmental, and informative. • Membership: Who can attend meetings and who cannot? Do you want membership limited to those with the problem? Will there be membership dues? If so, how much? • Meeting Format: How will the meeting be structured? How much time will be devoted to business affairs, discussion time, planning future meetings, and socializing? What topics will be selected? Can guest speakers be invited? If the group grows too large, consider breaking down into smaller sub-groups of 7 to 12. • Roles and Responsibilities: Continue to share and delegate the work and responsibilities in the group. Who will be the phone contact for the group? Do you want officers? Consider additional roles members can play in making the group work. In asking for volunteers, it is sometimes easier to first ask the group what specific tasks they think would be helpful. • Phone Network: Many groups encourage the exchange of telephone numbers or an internal phone list to provide help to members between meetings. Ask your membership if they would like this arrangement. • Use of Professionals: Consider using professionals as advisors, consultants, or speakers to your groups, and as sources of continued referrals and information. • Projects: Always begin with small projects, then work your way up to more difficult tasks. 4 7. Final Thoughts • • Stay in touch with the needs of your members. Periodically ask new members about their needs and what they think both they and the group can do to meet them. Similarly, be sure to avoid the pitfall of core group members possibly forming a clique. Expect your group to experience "ups and downs" in terms of attendance and enthusiasm. It's natural and should be expected. You may want to consider joining or forming an informal coalition or association of leaders from the same or similar groups, for your own periodic mutual support and the sharing of program ideas and successes. Group Guidelines – General Remind your group members about these guidelines at the beginning of each group. • • • • • We want this support group to be a good, comfortable and safe place for everyone here. Everything we say here is confidential. What we say in this group stays in this group. We respect one another. We don’t curse, and we don’t criticize or threaten each other. It is important that everyone who wants to talk or share something during the meeting gets a chance to speak. If you come to the meeting too drunk or high to participate, you will be asked to leave that day. NAMI SUPPORT GROUP GUIDELINES - Specific Remind your group members about these guidelines at the beginning of each group. • • • • • • • • This is a self-help group for (family members) (consumers/patients) (siblings) (adult children) of the mentally ill, where support is exchanged between members. Each participant in this group is required to maintain confidentiality. This group encourages an atmosphere of support, education, and self-development. This group does not promote any particular view of mental illness, and we give advice only when it is invited. This group is conducted in a respectful manner. We respect others’ feelings, thoughts, and attitudes, and we do not expect every one to share the same beliefs or opinions. This group encourages all members to participate at their own pace. This group offers resources and literature about mental illness and family relationships. This group serves as a link to the local chapter of NAMI (the National Alliance on Mental Illness), for those who are interested in advocacy for better mental health care. Responsibilities of Group Members to Each Other One of the primary purposes of a self-help group is to provide an environment where people with common problems or similar stressful life situations can meet with one another and help each other cope with their problems in a supportive, caring and non-judgmental atmosphere. 5 In a self-help group, the role of facilitating or leading a group discussion is not the sole responsibility of one person but of the entire group. Thus, all members must be aware of their responsibility to: • • • • • • • • • • Help members feel comfortable and get to know each other. Be sure the speaker has finished describing his/her problem before offering to help him/her think of possibilities. Listen attentively when another member is speaking and discourage side conversations. Promote positive comments and new viewpoints (keeping the discussion upbeat) lest the discussion deteriorate into a gripe session. Keep a balance between ventilation of feelings and the possibility for moving forward. Notice silent people in the group and encourage them to contribute. Participate in the discussion – sharing his/her problems and offering ideas. Recognize when a member’s problem is beyond the group’s ability to help and be willing to suggest alternative resources outside the group. Allow a member to ventilate negative or angry feelings; often this must be done before positive suggestions can be given and received. Assure fellow members that whatever is said in the group stays there (maintain confidentiality), this is more important in some groups than in others, depending on the sensitivity of the issues discussed. Make a commitment to the group, contributing whatever talents, skills, resources or information necessary to assure the group’s success and survival. Eight Step Agenda for Support Groups The National Sibling Network promotes an eight step agenda for all sibling and adult children support groups. Many support groups use the following eight steps as a focus for the meetings. Step 1 – Awareness. I explore the ways in which the relationship has affected my life. Step 2 – Validation. I identify feelings I have in response to this relationship and I share these feelings with others. Step 3 – Acceptance. I accept that I cannot control any other person’s behavior and that I am ultimately responsible only for my own emotional well being. Step 4 – Challenge. I examine my expectations of myself and others and make a commitment to challenge any negative expectations I hold of myself and others. Step 5 – Releasing Guilt. blame. I recognize that mental illness is a disease for which no one is to Step 6 – Forgiveness. I forgive myself for any mistakes I have made. I forgive and release others who have harmed me. Step 7 – Self-Esteem. I return the focus of my life to myself and appreciate my own work, despite what may be going on around me. Step 8 – Goal Setting. I recognize my past and present accomplishments and set daily, monthly and yearly goals. 6 A Systematic Approach: Alcoholics Anonymous’ Twelve Steps Your way of doing things – your group process – can evolve over the course of time or you can borrow from existing systems. Some self-help groups dealing with life-disrupting problems use the AA model of a 12 step approach. Here is the famous 12 step program of recovery patented by AA: 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. We admitted we were powerless over alcohol – that our lives had become unmanageable. Came to believe that a power greater than ourselves could restore us to sanity. Made a decision to turn our will and our lives over to the care of God as we understood Him. Made a searching and fearless moral inventory of ourselves. Admitted to God, to ourselves, and to another human being, the exact nature of our wrongs. Were entirely ready to have God remove all these defects of character. Humbly ask Him to remove our shortcomings. Made a list of all persons we had harmed, and became willing to make amends to all of them. Made direct amends to such people wherever possible, except when to do so would injure them or others. Continued to take a personal inventory and when we were wrong promptly admitted it. Sought through prayer and meditation to improve our conscious contact with God as we understood Him, praying only for knowledge of his will for us and the power to carry that out. Having had a spiritual awakening as the result of these steps, we tried to carry this message to alcoholics, and to practice these principles in all our affairs. Factors To Consider In Planning Your Discussion Groups What follows are some factors to consider in planning your discussion groups. Pick and choose which will serve your needs best: 1. Size of group. Group discussions can be any size from two people upwards, but if everyone is to participate equally and to get the full benefit from the discussion, then an ideal size is 6 to 10 people. If your group has more people than this (and most do) don’t overlook the chance to break down into small groups for discussion purposes. If the larger group has just listened to a speaker, they can then break down into small discussion groups afterwards. This gives everyone a chance to express themselves on a topic rather than letting a few aggressive members dominate a question and answer period. 2. Role of a facilitator. The person who runs the discussion can be and usually is a participant in the talk as well. His or her function is to keep things moving and on the topic. As a facilitator, be aware of people who try to dominate discussions. Learn how to handle them effectively. Encourage, but do not pressure, quiet members to contribute. 3. Confidentiality. Assure members that whatever is said in the group stays there. This is more important in some groups than in others. It may depend largely on the sensitivity of the issue with which your group deals. 7 4. Disturbances. Take care of anything immediately that’s bothering you. If immediate disturbances (someone smoking, a dog barking) aren’t taken care of they can hurt everyone’s full participation in the discussion. 5. Speak in the first person. Avoid generalities about “one does this or that.” Stick to your own experience. 6. Seating. Sit in a circle so that every member can see every other member. Avoid traditional “classroom” style set-ups if possible. 7. What to share. Share as much or as little as you want. 8. Questions. Other members may ask questions for clarification of what is being said, but should not ask “leading questions” which require analytical responses or which imply an analysis in themselves. LETTING GO Letting go doesn’t mean to stop caring; it means I can’t do it for someone else. Letting go is not to cut myself off; it’s the realization that I cannot control another. Letting go is not to enable; it is to allow learning from natural consequences. Letting go is to admit powerlessness, which means the outcome is not in my hands. Letting go is not to try to change or blame another; I can only change myself. Letting go is not to care for but to care about. Letting go is not to fix but to be supportive. Letting go is not to be a judge; but to allow another to be a human being. Letting go is not to be in the middle arranging all the outcomes; but to allow others to effect their own outcomes. Letting go is not to be protective; but to permit another to face reality. Letting go is not to deny but to accept. Letting go is not to nag, scold, or argue; but to search out my own shortcomings and to correct them. Letting go is not to adjust everything to my desires; but to take each day as it comes and to cherish the moment. Letting go is not to criticize and regulate anyone; but to try to become what I dream I can be. Letting go is not to regret the past, but to grow and live for the future. Letting go is to fear less and love more. 8 Assertiveness is…Assertiveness is Not… ASSERTIVENESS IS: 1. expressing your needs clearly and directly 2. expressing your ideas without feeling guilty or intimidated 3. sticking up for what you believe your ill family member needs – even though professionals may not agree 4. knowing your rights and how to get them 5. documenting what your family member needs and all facts pertaining to his/her case 6. treating professionals like a partner 7. effective communication 8. conveying your feelings of self confidence when you communicate with others 9. advocating effectively on your own behalf 10. self reliance and independence 11. persisting until you get all the services needed 12. analyzing a problem and pinpointing area of responsibility before you act 13. agitating to get necessary legislation passed and get it implemented 14. organizing for change 15. having a positive attitude at all times ASSERTIVENESS IS NOT: 1. beating around the bush before stating your needs 2. feeling too guilty or afraid to express your needs 3. agreeing with professionals – no matter how you feel – because “professionals know what’s best” 4. ignorance about your rights 5. leaving everything to others because “they know how to do these things” 6. apologizing when asking for what is rightfully yours 7. ineffective communication 8. begging for what is legitimately yours by law 9. abdicating to others your right to advocate on behalf of your own ill family member 10. reliance and dependence on others 11. giving up when you run into red tape 12. acting precipitously before you get all the facts 13. letting the politicians “take care of laws and all that political stuff” 14. acting “only” on your own behalf 15. giving in to defeat 9 Tips for Handling Common Group Problems Every support group meeting is different because you may have different people in your group. People are unique. However, there are certain situations or problems that may happen in any group. Here are some tips for handling common group problems. • The Dominating Group Member is a person who is really talkative and takes over the group discussion. This person may take up a lot of group time giving his or her opinions, telling others what to do and how to do it, or going over details of his/her own life. This person is likely to be controlling, may get easily offended, and often is a poor listener.  At the beginning of each group, remind everyone that it is important that everyone who wants to has a chance to speak. Remind the group that they need to be sensitive to this and let each other have a turn to share their thoughts and opinions.  Interrupt the dominating group member with respect and tact. For example: “Bill, I’m sorry to interrupt you but there are several people who haven’t had a chance to talk. We want to give everyone the chance to talk about this important topic”. OR: “Bill, I hate to interrupt you, but others need to have an opportunity to talk about their concerns”. You may need to repeat these phrases several times during group until the person ‘gets’ it. Try not to get frustrated; speak calmly and clearly, and continue on with your group. • The “It’s All About Me” Group Member is a person who contributes to the group discussion, but always turns the discussion around to him or herself. This person generally turns every discussion into a conversation about his or her own experiences, problems, or needs and always asks for advice about what to do. • The Negative Group Member is a person who may criticize the meeting and/or the topics you are discussing in group. He or she may question why anyone like him/her should come to a support group meeting. A negative group member may complain a lot and seem angry.  During the break or after group, encourage the person to give the group a chance. Tell him or her that everyone finds different things to be helpful. For example: “Bill, it may be that our topic today isn’t very interesting to you. Sometimes people find different topics more interesting than others. I encourage you to stick with us for a few more weeks before making a decision to drop out”.  Use reflective responses to validate the person’s feelings. You don’t have to agree or disagree with him or her, just make the person feel ‘heard’. “Bill, I hear that you feel that today’s topic isn’t helpful to you.” Sometimes, just simply acknowledging people’s opinion is enough for them to stop complaining.  If the person continues to feel—and tell you—that the group is not helpful to him or her, it’s ok. Tell him/her privately—during a break or after group—that everyone has different needs, and it’s ok if he/she decides to drop out. Remember: Every participant has the right to decide to drop out. • The “Side-Conversation” Member is a person who is always starting conversations with other people sitting next to him or her during group discussions. If these side 10 conversations are long or keep happening, it can be very distracting and disruptive to the rest of the group. It often leads to the rest of the group into their own side conversations, and you and your co-teacher will have to keep re-focusing the group on the topic at hand.  Ask for everyone’s attention to the topic being discussed, and let them know that they each have a valuable perspective or insight on the topic. Remind everyone that it is important that everyone has a chance to speak and be heard.  Speak privately with the individual during break or after group. Ask if he or she feels that he/she is given enough time to talk and contribute to group discussions, or is afraid to share his/her opinions with the group. Sometimes, side-conversation members talk to their neighbors because they feel that the group won’t listen to them. Remind the side-conversation member that you value his/her opinions, that he/she should share this with others, and that everyone needs equal time in the group.  Set a good example: Don’t start side conversations with your co-teacher or other participants during group. • General Tips  In any situation, your goal is to eliminate or minimize the disruptive behavior so that your group can continue, go smoothly, and everyone feels comfortable in the group.  Don’t make the person who is causing the problem feel bad. There is probably a very good reason why he or she is causing a problem in your group. Try to be empathic and understanding. Blaming the person may only make him/her feel worse, or cause him/her to continue to cause problems in your group.  It is important that groups are comfortable for everyone. Remind participants of this before each group, and tell them that this means that people who come to group drunk or high and who can’t participate will be asked to leave the group, and try again next time.  You and your co-leader are a team! Be sure to talk with your co-leader about how to handle a problem, particularly if the same person keeps disrupting the group each week. For example, one of you may want to talk to the person who is having side conversations while the other teacher gets the group back to the group discussion.  Keep your cool. It’s easy and natural to get frustrated when someone is negative or keeps interrupting the group. When you are calm, it helps your participants to be calm, too. Don’t share your frustration or anger with your group participants, or in your group. “Vent” your feelings after group with your co-leader.  Consider forming a support group with other group leaders to share and learn from each other.  If someone in your group becomes violent, call 911 for assistance. Don’t assume that you can handle it yourself. 11