How To Start A Support Group

Anyone can start a sarcoma support group. That anyone could be you! Sarcoma support groups are currently few and far between, and there is a need for more around the world.

Thinking about starting a support group? Read on.

Get Started

It can be very beneficial for cancer patients and survivors to join a sarcoma support group. Some research shows that joining a specific type of support group may even improve one’s quality of life and enhance survival. Group members may feel better about themselves, find a new life focus, have better pain and side effect management, and make new friends. In addition, it may elevate one’s mood, and help the needs of others become more transparent.

Support groups can also provide a safe space to talk about feelings and work through them, while also addressing practical problems, such as getting to doctor visits, or sorting through problems at work or school. The main reason people join a support group is to be with other people who have “been there.” It is not due to a lack of support from friends and family, as it supplements the needed support from a different angle.

If you are thinking about starting a support group, you may wish to research whether any groups exist that would be a good fit. It can be better to join forces than to start your own. Many local sarcoma centers offer support groups, or you can check with the Cancer Support Community’s website to see if there is a local group that may meet your needs.

If you do decide that starting a new group is best, where do you start?

Meeting Goals and Purpose

First, you will want to establish the purpose of your group. In general, it is best to have a separate group for patients and support system members. It will be more comfortable for patients (and survivors) to speak candidly without worrying about upsetting loved ones with frank concerns or discussions. Support groups are great for building fellowship between patients who have undergone similar life situations and experiences. They offer a platform to share feelings—there is something special about connecting over shared experiences rather than being told by a medical professional what to expect during treatment.

Next, you will want to establish the ground rules of your support group. It should be clear that the support group is there to offer support and not medical or financial advice. Also, a support group is not a “pity party.” Potential members may feel that a support group is not for them, as they don’t want to sit around and whine about their problems. This isn’t the goal of a sarcoma support group. We all have setbacks and are there to share these issues, but the group is not a place to “unload” problems on other members. It is a place to empower, support and advocate for one other.

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.

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Establish Meeting Time and “Place”

Time

Think about who will be coming to the meeting. Many sarcoma patients try to return to work after treatment when possible, making weekends or early evenings a good time. Elderly people may prefer daytime. A time too early or too late in the day may not be ideal for anyone. You may want to survey the group after the first call to see if the time works for most. Also, be sure you obtain contact details so that if a change occurs, members can be notified. It is best to maintain consistency and reliability, so pick a time that will not be subject to frequent changes.

Place

During the ongoing pandemic, members will likely feel most comfortable participating in virtual meetings. Google Meet is a free, no-cost alternative to Zoom that doesn’t include time or participant limitations and is easy to use. You will want to practice using it in advance of the call, so that you are familiar with it from a host-perspective.

Meeting Format

The meeting should be planned for 60-90 minutes; anything longer may create meeting fatigue. The first 15 minutes of the meeting can be used for introductions and announcements. This would include information about the next meeting or any news in the sarcoma community (fund raising events, new online information, etc.). Allow everyone in the group to introduce themselves. A good reminder to share is that participants should not discuss others outside the group by name and treatment or diagnosis.

Spread the Word

There are many ways to advertise your group. Inexpensive or free options include sharing flyers or information with the:

  • Local eating establishments, supermarkets, library, etc.
  • Community hospital and/or cancer center
  • Nearby cancer society branch
  • Oncologists in surrounding areas that treat sarcoma
  • Sarcoma Alliance—we will post on our website and share

The Sarcoma Alliance can also help supplement the costs of flyers and advertising for your group: contact us.

Pitfalls

There are many reasons why group membership may change, including the need for treatment, side effect difficulties, or even death. If a group member dies, it can be very scary for the rest of the group because it reflects each person’s mortality. This may be too heavy and intense for some to handle and they may wish to leave the group. In addition, some members may get tired of being thought of—or thinking of themselves—as a “cancer patient.” They want to return to their life pre-diagnosis as they move through the phases of their individual recovery. Finally, support groups are not for everyone. A participant may come to a meeting only once and decide it is not for them. It is important not to take that personally.

Special Topics

Once established, you may wish to canvass the group to see if they would be interested in guest speakers. The inclusion of guests can help draw in new participants and add dimension to your meeting. It could also cause discomfort if your group does not want an outside participant. Depending on the group, suggestions for guest topics could include symptom management, clinical trials, complementary therapies, cancer-associated mental health challenges, or diet and nutrition.

The Big Picture

The first few meetings may be anxiety-provoking until rapport is established. Trust that once people do come, you will make new friends and connections. Knowing that all participants have (or had) sarcoma will serve as a unifying theme. Your participants will have had varying treatments and experiences, and may be at different places in their cancer journey to share.

Running a support group is a very meaningful and enriching life experience. By hosting a support group, you are providing a tremendous service to affected individuals and bringing hope. You will likely receive a lot of positive feedback.

Please reach out to the Sarcoma Alliance at info@sarcomaalliance.org and let us know what we can do to help you make your group a success. We wish you the very best.

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