Support Group Tips

Introduction

Lymphedema support groups are an important part of living well with lymphedema and this article contains planning suggestions that can help you have more successful support group meetings.

Meet Lymphedema Resources, Inc

It order to have a highly successful support group, it is important that you have clearly stated goals for your group. The following information, which was provided by Claire Hauenstein of Lymphedema Resources, Inc.is an excellent description of clearly stated, and highly successful, goals.

“The mission ofLymphedema Resources, Incas a community-based volunteer organization is to raise awareness of the potential for development of lymphedema, to assure availability of the resources for treatment and to eliminate barriers for those with lymphedema.”

Lymphedema Resources, Inc. which is a 501c3 nonprofit charity was organized in 2005 in southwest Florida. Our mission as a community-based volunteer organization is to:

• Raise awareness of the potential for development of lymphedema,
• Assure availability of the resources for treatment, and
• Eliminate barriers for those with lymphedema.

Lymphedema Resources, Inc.is a five-time grant recipient from the Susan G. Komen for the Cure Southwest Florida Affiliate. Through this we have been able to provide financial assistance for bandages, compression garments, and for physician-prescribed lymphedema therapy for underinsured/underserved breast cancer survivors in a five-county service area.

As facilitators of the Lymphedema Education Awareness Support Group at Lee Memorial Hospital’s Regional Cancer Center in Ft. Myers, we meet the second Saturday of each month from October through May. Speakers on various topics of interest are presented along with educational materials on lymphedema.

Funded by a grant from The League Club, Inc. of Naples FL, we developed and presented a new six-session program, at no charge, entitled, “Movin’ On: Exercise & Movement for Breast Cancer Survivors” which includes information on the risk of development of lymphedema. We are now presenting this program at five other locations in southwest Florida.

We also receive requests for financial assistance from all over the country and work very hard to help with the purchase of compression garments whenever possible. To learn more about how your support group can work with the Komen Affiliate in your area, read the article Komen for the Cure.

 Successful Meetings

Successful groups actively work to involve and welcome new members. here are some of the ideas that have worked well for them.

A successful group depends on planning successful meetings and ways to involve your members. The following are ideas that have worked well for other groups:

• Caring and Sharing is an important part of each meeting; however, it is often important to limit this time so that the session is not taken over by a few people.
• Getting to Know You Old timers remember the overwhelming feelings of those days and weeks that followed their diagnosis of having lymphedema. They also remember those awkward feelings of being a “newbie” at their first meeting. Using a “buddy System” is a great way of taking advantage of their knowledge and helping new members feel more at home.
• Use a Buddy System. Once a year members are invited to bring a personal item that “Provides an insight into who you are and what makes you happy.” This might be a favorite hobby, a prayer that is special to you, picture you painted or photos you have taken, a prayer you say, or photos of family, friends, or pet.
• A Just for Fun Event. The program should be planned to be fun and to celebrate life. You might give this program a pompous title such as “Stimulate your Immune System Night” as a reminder that laughter is a great stimulant to the immune system. You could ask members for suggestions as to how they would like to have a good laugh while taking care not to make anyone uncomfortable.

Take Part in Community Outreach Programs

Participating as a group in a Community Health Fair is an excellent way to spread the word about lymphedema. Part of a meeting might be dedicated to planning your participation (keep it simple) and appointing a committee to arrange your participation. Group members can take turns staffing your booth at the event.

If you need hand-outs for such an event, contact ann by e-mail at ann@lymphnotes.com and request the free and colorful PDF titled “Are You at Risk of Lymphedema.” (This is available both English and Spanish.) You are welcome to print and share as many copies as you need. (They also are a great resource for providing physicians.)

Support Group Guidelines

• Have a regular time, date, and meeting place so that people can depend on when and where the meetings will be. (You can move it for special events.)
• As an outreach activity, ask members to bring a friend who might be interested or at risk.
• Advertise your meeting well in advance. Post announcements in treatment facilities, local newspapers, healthcare facilities (if they permit it).
• Have a contact person listed with your announcements so people can call for more information.
• Have a time limit for the meeting and stick close to it.
• When you are having group discussions, put a time-limit for speaking and enforce it. Make sure everyone who has something to say gets a chance to speak.
• Have a social time at the end of the meeting. If possible, serve simple refreshments since they tend to make conversation easier as people chat with each other.
• Offer a chance to sign upon a contact list and circulate that list to all who voluntarily sign it.
• If meeting in an eating establishment,try a place where you order and pay at the counter, or one that will do separate checks. Encourage people to tip generously so you are more likely to be welcomed back.
• Sometimes,but not always, have an outside presenter. Ask the group what they’d like to do at future meetings.
• Try to give all participants a sense of ownership and inclusion find a role for everyone who is willing to serve.
• Just asking for “help” may not get many responses.Ask people to do specific tasks.
• Change leadership from time to time. There are always newly diagnosed and they too become old-timers. Fresh blood is good for keeping things interesting and active.

Thank You

Our thanks to the support group leaders who shared their insights for this article.

© LymphNotes 2010. This information does not replace the advice of a qualified health care professional.

Got a question or comment? Post in the 'Living With Lymphedema' forum.
Category: Living With Lymphedema Updated: 2010-04-09