Starting a Teen and Young Adult Support Group
A support group is a place where someone can come to talk, listen, share, cry and laugh. A support group is simply that- a place to find support. It is not a therapy group or a recovery group or a 12-step group. It is a place to BE. Don’t look to change anyone when you start a support group, yet attending your group will change many people.
A Support Group is a Place to Just BE!
A support group meeting doesn’t start with an agenda, in other words don’t set a topic for the start of your group meeting. If you do you may trample over what is on the mind of those attending. You never want to stifle events, feelings, or experiences that happened to anyone since your last meeting. Now, there is nothing wrong with determining at a meeting that, “Next week let’s talk about….xxxx……, but, at the next meeting be prepared to change that topic because something important came up in one of the group member’s life
Some Specifics on Holding the Meeting:
• Pick a comfortable place to be.
• Your space should be private.
• Your space should be quiet.
• Your space should not have distractions such as pool tables, foosball, ping pong, video games, TV, board games—nothing. It is a place to talk and relate.
• Ideally, your meeting place should be as sound proof as possible—so people outside the room can’t hear your conversations and outside noises and distractions won’t interfere with your meeting.
• There should be seating for people, but even pillows and blankets are ok. Some people may be confined to wheelchairs and of course, that’s Ok.
(Note: Don’t think you have to hold these meetings at your house….there are churches and community centers that welcome you using their spaces.)
• Meet frequently–A minimum of one time each week.
• Try and meet at the same time each week. People thrive on consistency and dependability.
Rules-Yep, Ya Gotta Have Rules:
The good news is that they are simple and only a few:
No disrespect to others.
Don’t disrupt the group. Showing feelings is not disruption—It’s Good.
Let’s keep our cell phones off, unless you have to take an emergency call.
Any topic is acceptable.
Language: Decide if you allow liberties with language such as swearing or vulgarities. But, never allow disrespectful slang derogatory to any race, gender, sexual orientation, religious orientation or physical disability.
This group is voluntary—no one should be ‘told’ to come or forced to come. If a member doesn’t want to be here—that’s their choice and only their choice—it should not be parents’ decision or your healthcare helpers decision—ATTENDANCE IS YOUR DECISION- THE MEETING IS FOR YOU.
This support group is for teens coping with cancer. Parents, caretakers, and other adults should not be in the room unless a group member needs their continual physical attention.
There is no Group Leader—We are all equal. Sure, someone needs to arrange for the place, set up the seating, etc. but because you do that, doesn’t mean you become a ‘Leader.’ Also, someone needs to start the meeting, YOU, but don’t try to be the Leader. If you do it will make the meetings less free and they will seem stiff.
How to Get Started:
You Need to Spread the Word:
Talk to your doctors, your nurses, the social workers, volunteers and everyone involved with care at your hospital or clinic and the local cancer organizations in your area. Let your caregivers know and ask them to invite their patients who would benefit. Create a one-page description of your group in your own words and include how people should get in contact with you. (Let’s call this your: 1-pager.) Leave several of these 1-pagers behind with your caregivers as reminders and reference. Post this 1-pager as a notice on the bulletin boards where you go for treatment. Go, or have someone else go to other treatment facilities and hand out and post your 1-pager. Post a flyer in local businesses, like the grocery store. Make phone calls and personally invite teens you may know from treatment. Use social media, FaceBook and Twitter to make a post. Call up the local radio and TV station and ask them to spread the word. This last one is easier than you think. News reporters are always looking for unique stories. Let us know and we will post it as well. Be creative and have fun spreading the word, it could be a family project. Keep repeating all of these ideas over and over, even when the group is going and attendance is good. You can always have someone from your original group start a second meeting.
IT WILL HAPPEN~~HOPE ALWAYS!
The First Meeting:
STARTING THE MEETING: Let everyone know what you are trying to do. My suggestion:
“ Hello, thank you all for coming and welcome everyone. I am________________I am just trying to create a place where you can come and talk about your illness–Share stories—Share information—Share Feelings—Share struggles—get tips on how to cope with your Cancer—How to cope with your family and friends, your treatment, your treatment helpers—ANYTHING.”
(Pause, let someone speak if they want, but don’t ask for questions now.)
“There’s no topics for the meeting, we can talk about anything, anytime. This is our place. In fact, sometimes we may not even feel like talking, that’s Ok, we can just BE together.”
(Again, pause, go slow, let someone talk, but don’t ask for questions yet.)
“I got information on starting this group from the Becca Foundation web site: iamacancerkiller.org, the web site suggested just a few rules for our meetings and these are: We don’t disrespect others. Try and not disturb the meeting, if you need to get something or leave please do it quietly. Let’s keep our cell phones off, unless you are waiting for an emergency call. You can use any kind of language you want as long as it is not derogatory to any race, gender, sexual orientation, religion or physical disability. Attendance at meetings is voluntary—come here when you can and when you want. And finally, there is no leader, we are all equals here.
(Now ask if there are any questions.)
You may find that you are already into a great, lively discussion, BUT, if not, if the room is quiet, go ahead and introduce yourself and tell everyone your story or share whatever you would like about yourself.
By the time you do all this at the first meeting, that’s a lot.
Remind everyone of the time and place of the next meeting.
Keep the first meeting about an hour unless more than 10 people are going to show up, then you may need at least 1 ½ hours. But, keep the first few meetings to an hour and then if it seems like you need more time, discuss this with the group members and announce the new ending time in advance. Remember, ending times are important to keep. Plan to be at the meeting place for 1 ½ hours to 2 hours each meeting with setting up and clean up.
Snacks and refreshments are optional, but always great to have if no trouble. Allow people to volunteer to bring refreshments and snacks if they want to. But, be careful not to let parents dominate this. The group member should be the one to bring in their refreshments, if they physically are able.
Encourage people to give their names when they speak up, but it is not mandatory. Why aren’t names required? Because teens cope with illness in many ways, one is to be anonymous—it can help them share—so it’s ok not to give your name. I’m not a huge fan of ‘going around the room each meeting and introducing yourself. One, it is a time waster. Two, be natural, if you want to know someone’s name ask them. Three, let people cope with the nervousness of being in a group by hiding a bit. They are coping with enough, why make the group meeting another source of stress. Try this, people will like it.
After the First Meeting:
Listen—Learn—Share—Love— at each of the meetings. That’s your only task each meeting.
Story telling is a great way to get people to talk. You may want to begin each meeting with:
“Does anyone want to share something that happened to you since our last meeting? It can be anything, happy, sad, hard, easy, funny, inspirational, frustrating?”
Wait and let others talk. If people are not quick to talk, share something on your mind, but make it short and don’t dominate each meeting. After all the meetings are not just about you.
Remember what was said earlier, silence is ok. Get comfortable with silence. Don’t feel like the meeting isn’t going well just because there isn’t a lot of talking at first. People have to get comfortable and it takes time to trust. Don’t panic if people are not talking and don’t feel like you have to play games or have an activity during the meeting time because people are not talking. Doing so will prevent people from ever talking. These things are a distraction, not a stimulation to talk. And don’t pick a meeting place where these distractions are available, such as pool tables, video games, computers, board games, etc. That’s not what this support group is about. Providing such entertainments are for teen centers and other types of meetings.
When a new member joins the group—talk to them first—tell them about the group, how it is going, the general feeling of the members who attend, what they can expect by joining, what is being discussed lately and let them know the rules.
Always welcome each member at the beginning of the meeting. Again, you don’t need to call out his or her name, but just say, “Welcome everyone to today’s meeting.” And/or: “Everyone new here today, welcome and thanks for coming.” These are great ways to start the meeting.
Try to be true to start times and end times. Ending time is very important because some of the group members have caretakers that are waiting for them. You want to establish that the members and their caregivers can depend on the timing of the meetings, you may think running overtime is being a giving person, but it is even more giving to be reliable and consistent. Sometimes this is hard, but trust us, it is very important. But, don’t scold members for being late, they have lives and your attitude should be: it’s your meeting, if you missed time by being late, that’s your choice. But, again, ending on time is very, very important. Starting late is not an excuse to end late. Trust us.
Special Note: If there are issues that come up in the meeting that trouble you or problems with the group, we are here for you and will help you solve them. Just blog us or email us and we will answer as quickly as we can. We are here for you.
We would love to hear how your meetings are going, so give us some updates on the web site.
You are doing a wonderful thing for those who come to the meetings, but don’t expect to see the benefits of your efforts immediately. You may not ever see the tremendous benefit that members receive by being in the group. Trust us, it is there.
Dr. John Mayer
Frequently Asked Questions—-FAQ’s
In this section we will begin a list of questions and problems that may come up during your group meetings. Here are a few starter questions and as you write us we will add more.
What do I do if one of our group members dominates the discussion?
This is hard because we are all here to support people struggling with a disease that is scary and painful. We want to be kind and loving, but we are together for each member of the group. That always helps me to gently say, “I hate to interrupt, but we need to have enough time for everyone to speak here.” This is hard at first, but keep in mind you are helping everyone present, even the person who talks so much.
What can we do about people who interrupt others when they talk or are rude in other ways?
Like the answer to the question before, it is important to gently cut the interrupter(s) off. It is helpful for them and supportive of the person talking. Try this, “Please…. (Name of interrupter)…. I want to hear what…. (Name of person being cut-off)…has to say, please let them finish and then we can open it up for comments. Thanks.”
Two of the group members always seem to get into a disruptive private conversation while the whole group is talking about something. It is very annoying to everyone. How do we stop this?
It is important to understand that being in a support group is most likely new for everyone there, so people just don’t know how to behave. You may find these ‘side conversations’ most frequent in the first few meetings. Group members need to learn how to have one conversation together. I often say this, (pointing to one of my ears) “You know, it’s hard to follow the larger conversation when this ear is picking up other people talking. It is very important for us all to be on one conversation at a time. I know what you may be talking about is important (looking at the two who are talking in private) and we will all want to hear that in a minute.”
This all seems so much for me, but I really want to start a support group for the teens I have met in treatment. Should I get a professional to lead my group?
The Becca Foundation would never want you to be in an uncomfortable situation. Coping with your cancer is hard enough. But, you can do this! Think about organizing this support group as just being with friends. When you involve a professional remember a few words of caution: You lose control of the group and the group should always be about you and the members who come. A professional can take the focus away from the members and the discussions they want to have. Finally, with a professional involved the group can feel artificial.
Tell me how handle my parents? They have been so wonderful to me and they want to help with the group, but they hang around once the group starts and it makes the members feel uncomfortable.
This is why we suggest that parents not be in the room while the support group meeting takes place. Politely and lovingly tell them this and hey, use us here as your excuse: “The Becca Foundation web site says not to have parents around while the meeting takes place.”
Remember, if you have problems, questions, concerns, contact us here atwww.iamacancerkiller.org.
How To Find – Or Start – An Adult Support Group
Just like the recipe for your favorite dish, the recipe for a good support group relies upon each of the ingredients. And, like any recipe, it is the blend of all that creates something unique.
– Four to five adults; may go as high as eight if in season
– Comfortable meeting place
– Relatively quiet surroundings
– Equal parts compassion and humor
– Dash of irreverence
Put all ingredients into the meeting place, and slowly warm for ninety minutes. This process should be followed on a regular basis. In time, the ingredients will blend together, forming the unique blend that you can then call your support group.
It is fortunate today that a number of resources exist for someone diagnosed with cancer to turn to for support. One of the most accessible is a support group, which is a place for people diagnosed with cancer to give and receive social and emotional support as well as to exchange practical information. People with cancer often find that connecting with others who are going through a similar situation can help to reduce stress and improve the quality of their life. For many, the desire is to find others who can relate to what they are going through as they embark upon this journey many call “the new normal.” Support groups relate to what you are going through, and keep you from feeling like you are not alone in a way the most caring family and friends cannot always do – because they haven’t been in your shoes. Having been with Gilda’s Club Chicago for 15 years, I have repeatedly seen the benefits of participating in a weekly support group with other men and women diagnosed with cancer.
Find out if a support group exists in your community. Start by asking your oncology nurse, patient navigator or social worker if s/he knows of any groups in your community. The Cancer Support Community, our headquarters organization, has affiliates across the country running many groups –
http://www.cancersupportcommunity.org/MainMenu/Cancer-Support/Find-a-Local-Program. Our Helpline (888) 793-9355 Counselors can also help you locate support groups close to you. The American Cancer Society is another great resource. Your place of worship may also provide a group. Check online resources. If there is something, great – see if the group is the right fit for you. If it isn’t and the option exists, try a different group.
If you don’t have a support group in your community, you may have an interest in starting one. People with cancer tend to get on similar treatment schedules with other patients. Reach out to the woman you’ve talked with while in infusion clinic, and see if she has an interest in getting together to talk. Know ahead of time that starting a new group is time consuming and takes a lot of work. Reach out to your health care team and see if they can help, both in terms of resources (space) and by getting the word out among their patients.
You may also have an interest in online support. The Cancer Support Community offers The Living Room for individuals who are unable to or choose not to participate in face-to-face programs. There are both real-time online support groups and discussion boards at www.cancersupportcommunity.org
Things to Consider
What kind of group you want to have?
Groups can be general in nature or specifically focused as:
o Groups for people with specific types of cancer (breast cancer, colon cancer, lung cancer, etc.)
o Groups that are gender-specific (just for men or for women)
o Groups that are age-specific (teens, young adults, seniors, etc.)
o Groups just for patients, for caregivers or family and friends or a combination
o Groups for various stages of the cancer experience (newly diagnosed, treatment, post-treatment, metastatic or advanced disease, long-term survivorship, bereavement)
What would you like the focus of the group to be?
Cancer support groups can be designed to be:
o Educational in nature with guest speakers who share medical and other resource information
o Focused more on emotional issues such as coping with the illness and treatment, side effects, family issues, death and grief, etc.
o A combination of both educational and emotional support
o A time-limited series such as a six week series for women newly diagnosed with breast cancer or an on-going meeting that meets for example monthly.
How do you think the group should be facilitated?
Cancer support groups can be:
o Peer-led by a fellow patient or survivor or caregiver or what are also called “self-help” groups
o Professionally-led by an oncology social worker, nurse, psychologist, chaplain or other health or mental health professional trained in facilitating a support group
o Co-facilitated by two professionals, two peer leaders, or a combination of the two
Qualities of a good support group leader
Here are several questions to consider that will help you decide who might lead the group.
o Are they a good listener?
o Can they be realistic about why they want to do this?
o Can they be objective and not promote a certain belief system or way to cope with cancer?
o Do they have the time necessary to plan and publicize the meetings, coordinate special events, and talk with individual group members who call with problems?
o Are they committed to attending the meetings regularly?
o Are they able to be assertive enough (in a kind way) to keep the meeting on track?
o Do they maintain a positive, encouraging and hopeful attitude?
o Are they able to not give advice or tell others what to do?
o Are they prepared to share in other people’s struggles with cancer or their grief and fears?
o Do they know what do to if there is a difficult, rude or unpleasant group member or conflict in the group?
Once you have a small core of interest and have answered these questions, You should consider when and how often you want the group to meet. . It can be weekly, every other week, or monthly. The duration of the group is determined by its purpose and the needs of its participants. Find a spot to meet that is convenient and easy to find. The group should meet somewhere that offers privacy.
For those of you who are fans of David Letterman, I will leave you with the top ten list of the benefits of a support group from the survivors I have met:
10. No one should have to face cancer alone.
9. People will look at you funny if you still have hair – not the other way around.
8. If you want to talk about something other than cancer, you can.
7. You can say things to someone you’ve just met and they understand, sometimes more so than even close friends or loved ones who have not experienced cancer before.”
6. Laughing about cancer with those who understand is a wonderful release.
5. Crying about cancer with those who understand is a wonderful release.
4. You will acquire a lot of wisdom on this journey – please share it with others.
3. You will find people doing better and people doing worse – remember, sometimes it doesn’t have to be better or worse, it can all just equally be bad and unfair.
2. Speak your truth kindly and honestly.
1. Remember, even though you may have cancer, you are not cancer. It does not define who you are.
Chief Executive Officer
Gilda’s Club Chicago