Miranda Kramer RN, MS
Anyone can start a sarcoma support group. That anyone could be You! Sarcoma support groups are currently few and far between and there is definitely a need for more groups. Here you will find some of the nuts and bolts of starting a support group. Each support group is slightly different and takes on its own shape and personality.
How to start
So, you decided to start a support group. Where do you start? Start by deciding the details of the meeting and then put the word out. Find your location and decide the dates and times of the meeting. Once that is done and you have done a little “advertising” you simply need to show up and be ready to greet people. It may be a little anxiety provoking to get going but if you don’t do this, who will? Participants also have anxiety about going to a new group until rapport is established. Just trust that once people do come, you will make new friends and connections.
Although there are many types of sarcoma, the unifying theme is that all participants have sarcoma or a loved one with sarcoma. Your participants will have had varying treatments and experiences. People who are newly diagnosed will have lots of questions. Having a group with 4 to 5 participants is usually good for generating enough conversation. However, sarcoma is a rare disease and depending on your location, you may get fewer participants.
What support groups do and don’t do
Support groups are for just that, support. It is not recommended that you give out medical advice to participants. Leave this for the patient to discuss with their licensed medical practitioners (physicians, nurses, physical therapists, etc.). Likewise, financial advising is not recommended. These issues are best handled by medical social workers, the patient’s individual insurance company, their personal financial planner, etc. In either case, it is okay to advocate for the participant to seek informed professionals to help with their decision making.
Support groups are great for building fellowship between patients who have undergone similar life situations and experiences. It is a great venue for people to share the feelings and insights in the care they have received (good and bad), their home experiences with family dealing with their care, etc. There is something very special about connecting with someone else that shares your experience instead of being told by a medical person what to expect in your care or treatment.
Also, support groups are just that and not “pity parties”. Patients often think, I don’t want to attend a group of people sitting around, whining about their problems. This isn’t the goal of a sarcoma support group. Yes, we all have set backs in our lives and are there to share these items as we see fit. But, it is not a place to “unload” your personal problems on other members. It is a place to empower, support and advocate for each other.
Getting the word out
Advertising your meeting can be done in any number of ways. First, look for the free or cheap ways to do it. These include:
- Ask to post a notice in your local eating establishments, supermarket, library, hospital, etc…Anywhere there is a public bulletin board is fair game. You never know how might see that posting.
- Ask your local hospital and/or cancer center if they have a place to post such listing. These include staff newsletters (they can refer patients to your group!), email lists, patient resource center, cancer resource centers, etc.
- Ask your local cancer society branch if they have a posting location or if they would refer patients to your group.
- Ask the oncology professional in your area or surrounding areas to send a note to their sarcoma patients or to refer to your group. Send flyers for your group along with your note to make it easy for them. You are offering their patients a valuable service!
- Tell us at the Sarcoma Alliance! We will post the details on our website and let people who call or write in know about it!
- Word of mouth…spread the word…it’s free.
- If you have the means and desire to pay for an advertisement, you can take out an ad in your local newspaper. Or, you could ask the newspaper to put it in their announcements section and ask to get it posted for free because it’s for a good cause.
The Sarcoma Alliance can help supplement the costs of flyers and advertising for your group. Contact us
Usually you will need at least one hour for the meeting but no longer than two hours. The first 15 – 30 minutes of the meeting should be open for people to come in, get settled and maybe get a little refreshment. Offering simple refreshments at a group meeting are comforting and lend a socializing air to the group. Tea is especially good for this. You can purchase a hot pot for under $20, paper cups, tea bags and plastic spoons. Other items such as cookies or fresh fruit are nice to have available. If your stomach is growling, it can make you distracted from the topic at hand. Asking for volunteer donation for these items is acceptable because it benefits all the participants. The Sarcoma Alliance can also help to supplement these costs. Let us know how we can help.
After that initial settling period, get participants to find a seat. Having participants sit in a circle is a good format. Everyone can see each other and no one feels left out. An environment that is quiet, comfortable, and without distractions is best. Because what you will discussing is personal, make sure the location is private as well. If there are any announcements, make them at this point. This would include the next meeting information or any news in the sarcoma community (fund raising events, new stuff on the internet, etc). Then, let everyone in the group introduce themselves one at a time. It is helpful for group members to know when each individual was diagnosed, what type of sarcoma they have/had and what treatment they have received. This information is totally kept within the group for individual confidentiality. Participants should not discuss others outside the group by name and what treatment or diagnosis they have had. The group at this point may just run itself and dialog between participants usually starts up naturally. It is usually a good idea when you start your group that you set up some ground rules together. For example, only 1 person can speak at one time or everyone should have a chance to speak. You may want to assign someone to watch the time. Every group is different and you can all decide together what works for you.
It is recommended that the meeting not extend over two hours. Meetings over two hours can create fatigue and emotional strain for participants.
Once your group is well established, it is important to periodically check in with group members about how they feel about the group. Be open to any suggestions for improvements or changes. Work together to make the group successful and rewarding for everyone.
When to hold your group meetings
Think about who will be coming to your meeting. Most sarcoma patients do try to return to work after their treatment whenever possible. Thus weekend meetings or early evenings work well for working people. Elderly people tend to want daytime meetings so they don’t have to drive in the dark. Also, think of the time that will work for you so that it will be reliable for participants. If you go to visit family once per month or have other routine commitments that are always on your schedule, plan the meeting around these events since you are setting yourself up for reliability. Alternatively, you can find a co-leader/facilitator that can keep the meeting times going if you have other commitments. Meetings that are too early in the day or too late in the evening are also hard for participants. Make sure you have your group members contact information so that if a change occurs, you can let people know.
Where to hold your meetings
You can likely find a public place to hold your meeting for free. Check with your local churches, libraries, cancer center and similar places. Community centers will often allow you to use their facilities or charge a small fee. The Sarcoma Alliance can also help support these costs. It is not suggested that you hold a group in your home. By doing this, you are opening your private and safe environment to strangers. It is best to hold the meeting in a space that is neutral, public and does not “belong” to any one participant. Also, always remember to be a good guest. Make sure the space you use is always left clean for the next group to use. If not, you will wear out your welcome.
Loss of participants
Loss of participants can happen for multiple reasons. First, you are dealing with a group of patients with a terrible disease. We pray that each and every sarcoma patient will be cured but not everyone is at this point. You can lose participants because of tumor recurrence or metastasis requiring more treatment. This makes it difficult for the patient to attend the meeting because how they feel going through more treatment (nausea, fatigue, etc). Transportation or traveling in a car can be an issue. When this occurs, it is a nice gesture to have participants in the group send their wishes to the participant who is kept from the meeting.
Second, because of the type of disease that sarcoma is, we lose people to it. Thus, you can lose participants due to death. Also, the death of a participant can be very scary for the other participants because it reflects your own mortality. This may be too heavy and intense for some participants to handle and they may wish to leave the group. This is their choice and must be respected. They may return in the future and the door should be open to their return.
Third, patients get tired of being thought of or thinking of themselves as a “cancer patient”. They want to return to their life before their diagnosis. At some point there may be attrition as they move through the phases of their individual recovery.
Fourth, support groups aren’t for everyone. A participant may come to a meeting only once and decide it’s not for them. Don’t take that personally.
Participants who monopolize the session
There are many types of personalities out there in the world. Some people are “talkers” and naturally jump into the conversation. Others are more introverted and quiet. It is important to ensure that all participants have equal time at the meeting. If a participant is monopolizing the meeting you will need to interject by saying, “thanks for your comments Jane but we haven’t heard from Bob yet today”. This will redirect the focus to the next participant. If it is a severe problem, speak separately with the participant after the meeting about getting individual attention as they see fit.
Adding guest speakers to your meeting
Assess whether or not this is something your support group would be interested in. An outside speaker can be a draw for new participants and add dimension to your meeting. Ask the group what they would be interested in hearing about. Some suggestions would be symptom management, clinical trials, complementary therapies, diet and nutrition, etc. You can ask your local medical providers for suggested speakers based on what your group’s interest.
The big picture
Running a support group is a very meaningful experience. Your life will be enriched. You are providing a tremendous service to individuals and you will get lots of positive feedback. You will bring hope to people affected by sarcoma.
Please let The Sarcoma Alliance know at firstname.lastname@example.org what we can do to help you make your group a success. We wish you the very best!