Starting a Support Group

PLANNING

Most will agree that preparation and knowledge help promote the success of a project. Starting a support group is no small matter. Its success is also related to knowledge and preparation. To assist your thinking and planning in starting a group, the following thoughts and strategies are offered:

1. Know Who You Want to Reach:

»   For who? Who needs it? The caregivers (e.g., family and friends of those living with HIV/AIDS; nurses, counsellors? Those living with HIV? Both?

Can you define the people you want to reach with your group? Who else shares your interest or problem? Think of your group as a circle. Some people will naturally fall within the borders of your circle and you will want to include them. However, some may want to be included in your circle who are not "matches" to the group and you will have to decide how - if at all - they are to be included. You might begin to make a list of other groups or persons who you believe share your interest or problem. Experience shows it is to your advantage to define your target population thoroughly. Once identified you need to ask: How do you locate them? And once you have found them, what are you going to do to get them involved with your group? Don't forget to include people from your community who may not be a member of the target population but could be helpful in reaching those that would.

2. Know What You Want to Do:

»   What do they/you need? Write down what you would like to receive from the group you are starting as well as what you would like to bring to it.

»   Define the purpose of your group. A very simple way of looking at this is, WHAT do you want to do and HOW will you do it? It's helpful to have a goal statement outlining the mission of the group. This is usually followed by specific objectives featuring the things you need to do to meet your goal statement. Together these provide a framework for the group - the ‘what?’ A good rule is to begin with easy objectives. By choosing simple objectives you don't overwhelm the group and help ensure its future success. Next, you need a ‘how’. The how consists of the methods you intend to use to accomplish your objectives and priorities that will organize and mobilize the group into action. As much as possible, be sure to include all members in this planning process. Some groups create a steering committee to be responsible for this process.

The Positive Living recommendations can form a basic framework in defining what you want to accomplish in the support group, over a period of a few months. For example, you can spend a few sessions going through the basics of HIV and AIDS, and then progress to foods that are healthy and unhealthy, how to clean water and keep your stomach clean, home remedies, and then the Mind-Body (PNI) and Soul Matters methods.

Alternatively, you can divide the time per session between (a) discussing how the members are coping, and (b) learning Positive Living methods. 

»   Gather information. Gather information about other support groups, if there are any in your Area. If possible, attend a meeting to watch, ask questions, and borrow ideas.

»   Finding people to attend.  Check with organizations, schools, churches, ask school officials or agencies working with people living with HIV/AIDS. A good starting point to find people is to go to the local HIV testing site and talk with the staff there and let them know what you are planning and ask for their support. Your local church is also a good place to let the community know what you are doing.

»   Promote. Promote the meeting through posters, flyers, press releases, ads, announcements or letters-to-the-editor in newspapers, church bulletins, local TV, and radio. Use whatever resources you have in your area and you'll be surprised how quickly the word spreads about what you are doing.  Ensure you say that the meetings are confidential, and what you intend to do at the meetings.

3. Know What You Need:

»   Best time(s)? Determine the best time of day to hold your first meeting. Evening may be better if the people are working during the day.

»   Conflicting duties. People may also need to find someone to care for their loved ones during the meeting. Consider finding volunteers to care for loved ones, coordinate activities for those capable of participating, or have a support group for them during your meeting.

»   Location. Find a convenient and safe meeting place for a two to four hour meeting, such as someone's home, a church, community centre, hospital, social service agency or community room.

Some needs are obvious and the group should spend time identifying and prioritizing these. However, during the organization of a group some needs are often overlooked. Please consider the following:

»   Organization: What format? Leadership?

»   Meetings: Where, when, how often, how long? How much structure?

»   Resources/services: Groups must learn to be good resource managers. Identify resource strengths and weaknesses. Will special services (child care, transportation, etc.) be needed by the group? How will the group use professionals from the community? (guest speakers, consultant, referral source, facilitator, etc.)

»   Time & energy commitments: Experience shows that it may take between 6 and 12 months to really get the group going. Members must understand this and be reasonable in their expectations of the group and themselves. However, members must be willing to make a strong commitment to the group and one another. The work of getting a group going is demanding but don't forget that the stakes are high and the rewards are great.

»   Shared responsibility: Make the group exactly what that word says, a group. Each member shares responsibility for the development of the group. Help members to become more than "joiners" by involving them in the group. Members wanting to participate in leadership or organizational type roles should feel encouraged to do so. From the very beginning of the group, think shared leadership. This will help prevent leader and member burnout. It will also promote the longevity of the group.

4. Know That You Are Not Alone:

Although you may not believe it at times, there are people who care and are interested in your problem or concern. Many of these are, of course, the members of your group. Yet there are supportive people and services in your community that should not be overlooked. Take advantage of every resource.

Before the Meeting STARTS

1. BEFORE PEOPLE ARRIVE:

»   If possible, fill out a profile card on each participant upon first contact. By reviewing these cards before each meeting, you will know the story of each person and the particular strengths and needs they have. Respect privacy and confidentiality, let people know they can reveal information later when they are comfortable and know more about the group.

»   Arrange the seating so everyone is comfortable. Seating arranged in an oval, circle or rectangle is most effective.

»   Have an agenda or list of activities posted so people know what to expect.

»   Use male and female co-facilitators when possible so both sexes have role models. 

2. WHEN PEOPLE ARRIVE:

»   Greet each participant. A support group staff member should warmly greet each participant with a "hello" at the door, or as they arrive in the meeting space and show them where the seating and refreshments are. Try to personally greet as many attendees as possible before the meeting to put a face with the name so you can call on them by name during the meeting

»   Introduce members to each other, pointing out commonalities they might have such as the same profession, interests, children the same age, etc. You may have this information from the profile card. 

»   If possible, seat new members next to or close to the support group staff person they spoke with. It will make them more comfortable being close to someone familiar.

The first meeting

1. BASIC GUIDELINES:

»   Keep the first meeting simple and start small: two or three people in the beginning are fine.

»   Allow one to two hours for your first meeting, then let the group decide the time, length and place of future meetings.

»   Introduce yourself and share your story; invite others to share their stories, but do not force anyone to talk before they feel comfortable.

»   Collect contact information from all who attend.

»   Ask for volunteers to help plan and run future meetings. Assign specific roles.

»   Provide refreshments and continue to provide them if the group agrees on this. Maybe one day you can bring tea and the next meeting somebody else does and so on.

»   Choose a name and decide the purpose of your support group.

For example: The purpose of the group is to:

»   Provide information, hope, support and to share successes and hardships.

»   Provide a safe place for people to express their feelings openly, without fear of judgment.

»   To learn from each other.

»   Decide what kinds of activities and speakers you would like to have. Ask a local minister or doctor to come and speak with your group. Or perhaps a nurse who can give you practical advise. Topics could include legal, economic, health, school, childcare, emotional, substance abuse, stress, behavioural issues, how to find resources, etc.

»   Plan your meeting schedule.  At least every second week is recommended.

»   Decide how you'll handle any group expenses. How will refreshments be provided?

»   Create a plan for care and activities if the members will be bringing those they care for.

2. ESTABLISH Ground Rules

Ground rules for support groups are important. These may be drawn up before the first meeting, but it is important that they be discussed and agreed upon by all participants at the first meeting and all subsequent meetings. Members should be able to suggest modifications or additions. This process not only establishes ground rules for the group; it also promotes ownership in the group by members and aids in the reestablishment of personal control.  Listening, compassion and empathy are important characteristics of all participants. Explain what those are.

Some Suggested Ground Rules:

»   Everyone will have a chance to speak, but will not be under obligation to do so.

»   Everyone agrees that any and all information disclosed in this group is private and totally confidential.  (Explain how it is very important that what is said in the support group stays within the group, and is not discussed outside the structure of the group. People have to feel safe to share their thoughts, feelings, frustrations and fears. They will not do this if there is a danger that what they share will be discussed outside the safety of the group).

»   All expressions of feeling, including laughing and crying, are allowed with the exception of physical violence.

»   Full names of non-participants should not be mentioned, as this may unfairly undermine a current relationship between a group member and that individual, i.e. doctor, hospital, social service organization, etc.

»   No information from will be released by this group to any outside agency or individual without the written consent of the member.

»   Participants should feel free to get up and move around during the course of the meeting should they feel the need to do so.

»   Participants are encouraged to exchange phone numbers and call each other between meetings.

»   THIS IS YOUR GROUP! If any member has any suggestions or criticisms they are encouraged to voice them to the group facilitator or staff.

DURING ALL meetingS

Many skills go into effectively facilitating a support group meeting. Actual facilitation begins before the meeting starts and ends after the meeting is over. During the meeting itself, there are specific techniques successful facilitators use in listening and probing. Suggested ideas in this section have proven to be helpful in running and facilitating the support group.

»   Personally set the tone of the group. For many participants the persona of the facilitator at the first meeting will set the tone of the meeting. If the facilitator is quiet, with a sad energy, the group my take on those characteristics. If the facilitator is open, warm, humorous, the group will unconsciously adapt that behaviour.

»   Use written notes to avoid forgetting things and straying off the topic.

»   Begin with announcements, ground rules and the meeting agenda. If you’re working with religious people, maybe an opening prayer would be appropriate.

»   Lead the group to a more emotional or intellectual level by reading a short poem, letter, or quote you think is meaningful and appropriate.

»   Introduce the topic of the night and ask everyone to tell their story and their thoughts or feelings on the topic.

»   If possible, start with a participant who has been to the group before.

»   Focus on each person as they talk.

»   Encourage active participation by all members in the group.

»   If others ask questions or jump in, you will need to bring the group back to the next person.

»   If several members change the subject and most seem interested in the new direction, you may be flexible and go along. If most members are not interested in the new subject, then restate the topic with the next person.

»   If someone starts crying, let them go. They are not broken, so don’t try and fix them! Usually they will stop themselves and it gives the group the message that tears are okay. If they can't stop crying or ask you to go on, do so, but try to bring them back in at a later time.

»   If a participant should break down in tears and suddenly leave the room, someone should follow and comfort them. Simply listen to them and once again, they are not broken so don’t try and fix them.

»   Take a break about half way through the meeting, or when people seem fidgety.

»   If someone is talking too long, try to find a good place to step in and summarize what they are saying and go back to the next person or the person who was talking. This is where knowing names is helpful.

»   If the atmosphere becomes oppressive, try to lighten it up with humour. A good group is able to laugh or cry, a good group ebbs and flows.

»   A good facilitator will say very little and model good listening to the group.

»   Feel safe to speak your mind freely, to reach out for support and to share from your own experiences.

»   People can be very much in need of having questions and answers responded to, especially when an emergency is at hand.

»   Do not interrupt while someone is speaking about something important to them.

»   Please be sensitive to the feelings and the opinions of others.

»   Support groups are no place for judgments nor for holding grudges against one another. If a problem arises, support one another to move through it quickly for the highest good of all those present.

»   Do not encourage aggressive, confrontational, insulting or harassing behaviour

»   Remember to celebrate your accomplishments, your healing, and your growth.

»   Take pride in creating a safe and nurturing environment.

»   Leave on an upbeat note.

ENDING the Meeting

»   End the meeting when everyone has a chance to speak and the formal discussion seems to be over. Once again, if a prayer will work for the group, then invite someone to end with one.

»   Restate your group's policy about confidentiality.

»   Allow everyone to talk informally for a few minutes. 

»   Encourage people to spend time together outside the group. Networking and the establishment of an intra-group support system is extremely important.

»   Try to thank everyone individually for coming.

»   After everyone has left, make notes for yourself as to the 'pulse' of the group so when you are all together, you as the facilitator can check in on where people are at the next meeting and how they have been since the last meeting.

Co-facilitating

»   Co-facilitating can be quite difficult. Learning to work as a team is not easy and it takes time, hard work and experience. Here are some suggestions if you are in a position to co-facilitate.

»   Decide who is the main facilitator; who does all the talking and interacting with your group. The other co-facilitator needs to ay attention to the group so that nobody is ignored or missed.

»   Each take a turn in facilitating however it is advisable that if you start the group as the facilitator, that week, then do not change until the following week. The facilitator can change from one meeting to the next.

»   Make sure that regardless as to your role on any specific week, that you both say as little as possible.

»   Never disagree with your co-facilitator and if you don't agree with what is being said, find a way to get your point across without making your co-facilitator look bad, ignorant or stupid.

»   Always meet with each other after the group to discuss the meeting with one another. It is important to give each other honest feedback and do not see this as an attack on you or your skills/knowledge. Learn from each other and this will help you become a better facilitator.

Some problems which may occur with any support group are out of your control. Others relate to the group and/or individual participant and can be handled or diverted if caught in time. Being aware of the following potential problem may reduce the likelihood of their occurrence.

»   Too Few People: Some support groups have a more difficult time finding members than others. If you have too few people, those who attend may feel obligated to talk even if they are reluctant. A meeting can be a struggle. You may want to explain that in this circumstance each member will be given more time to share stories and interact with each other

»   Too Many People: When more people show up than expected it can be an indication of the group's effectiveness, but it can cause problems. There could be too little time allotted to each member resulting in a rushed, 'cramped' meeting, particularly is a speaker is planned. If this happens, split the group into two with a mix of old and new members. Have the co-facilitator or another staff member take over the second group, or you may ask two experienced members to facilitate both groups while you move between them.

»   The Dominating Member: This is the member who takes too much time, asks too many questions, or dominates the topics under discussion. You can reduce the likelihood of this happening by reviewing the ground rules before each meeting, and setting a clear agenda. If you know the person's background, you can divert the person by saying a line like.. "Jose, your anger at the authorities is normal... Maria, didn't you have a similar experience?..." and then turn to Maria and let her share her experiences.

»   The Imposing Member: The Imposer feels that his or her coping skills, religious outlook, or general solutions are absolutely correct. Comments like "Here's how to handle that", "This is what you need to do now", or "If you have faith..." will tip you off. You can usually prevent 'imposing' by catching the first occurrence and saying something like: "Well Edna, it sounds like you found something that works for you. Now, what are some things that worked for the rest of you?"

»   The Inadequate Member: Often a new member, who after listening to everyone else's story, feels that their experience is negligible. This can result in a reluctance to tell self-perceived insignificant stories at future meetings. The person may even drop out of the group, Consequently, it is very important from the first interaction, to ensure that the stories and pain or joy of each member is unique and valid.

»   The Dependent Group: This group is characterized by low participation and energy. The members just sit there. No one offers to begin, disclose, share ideas or participate in topic discussion, yet they come to the meetings. In other words, the members are dependent on the facilitator or another group member for direction. In this type of group, a "dominating member" is a hero. This is a real problem and if not fixed, the group can develop into a Social Group instead. To overcome this, you must instill a sense of ownership in each member. Begin by delegating certain tasks that the group takes care of, such as bringing refreshments, managing the library, setting up the room.

»   The Social Group: This can develop when, after many meetings, no new members appear and everyone feels comfortable with each other. The meetings tend to start later and later because everyone is visiting, and 10 minute breaks stretch to 20. Stories are hurried through. Topic discussions turn into bull sessions. Should this occur, you need to look closely at the progress of the participants; perhaps, some no longer need to be there. This is a particularly difficult and dangerous problem, as it suggests the group, including the facilitator, has lost its effectiveness as a self-help group. When a new member does attend, there is a real possibility that he or she will feel excluded from the group and not come back.  Should this happen, you must re-establish control of the group. At the next meeting, cut the story telling period and schedule a speaker who will dominate the evening. Not who objects and who doesn't. It is time to shake up the group.

»   A special note: It is important to distinguish between the social and 'stuck' member. A member who is truly stuck may need to be retired from active group participation. There are some members of groups that attend meetings for 7-10 years. This news can have a devastating effect on a new member joining to learn coping skills.  It is very important to identify this type of group and seriously reassess the group's purpose and progress.