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Starting a Local Support Group

The following excerpt is taken from Chapter Eight of Hydrocephalus: A Guide for Patients, Families, and Friends by Chuck Toporek & Kellie Robinson, copyright 1999 by O'Reilly & Associates, Inc. For book orders/information, call 1-800-998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

Many parents have taken it upon themselves to start up a hydrocephalus support group to share information and support other families in their area. Hydrocephalus support groups vary in format and size from several parents who get together for coffee once in a while to a formal group with regular meetings and agendas. Before you start, take into consideration:

  • What do you want your group to accomplish?
  • Should your group be affiliated and/or registered with one (or all) of the national organizations?
  • How large do you want your group to get?
  • How will you recruit new members?
  • How will you promote your group?
  • How will you fund your group?

Getting started

When the time comes that you decide to form your own support group, there are some things you can do to get organized. Make a list of the goals for your support group, including the following:
  • How many times a week/month do you want to meet?
  • Where will you hold your meetings?
  • Will your meetings be structured (i.e., will there be an agenda?), or will people be invited to come in and just talk openly?

Finding members and promoting your group

Make a list of neurosurgeons, neurologists, neuropsychologists, imaging centers, and hospitals in your area with whom you can promote your group. Talk with the nurses in the intensive care units at local hospitals and let them know of your group, as most patients who are having a shunt operation will spend time in an ICU. Since these people are likely to treat patients with hydrocephalus, they're your best bet for finding new members.

Other ways you can promote your hydrocephalus support group include:

  • Have your group listed with one or all of the national hydrocephalus organizations. People call these larger organizations from time to time looking for information about hydrocephalus and support resources near them. The national organizations can also supply you with information materials that you can hand out to new members.

  • Have your group listed with other organizations, such as the American Association of Neurological Surgeons (AANS), The Brain Tumor Society (TBTS), and the National Head Injury Foundation (NHIF).

  • Post notices in hospital waiting rooms (if permitted), libraries, and doctors' offices.

  • Submit press releases about your group to local newspapers and radio and television stations. If you are affiliated with a non-profit organization, radio and television stations can run a 30-second public service announcement (PSA) about your group. PSAs should be submitted as a double-spaced, typewritten document, and should include information about hydrocephalus, when your group meets (including the time and location), and a name and phone number that people can contact for more information.

  • Work with your local media to produce a human interest story about hydrocephalus.

Securing a meeting location

To begin with, meetings can probably be held in one of the members' house. But eventually, word will get out about your group, and you might find yourself in need of another place to meet. When your group starts to outgrow the space available, one of the following may work as an alternate meeting site:
  • Schools
  • Churches
  • Libraries
  • A meeting room or auditorium at the local hospital

Inviting speakers

When your group begins to grow in size, you may want to think about inviting guest speakers to give presentations on different aspects of hydrocephalus. Your initial contacts in the medical community will come in handy when searching for speakers. Although very busy people, most medical professionals (neurosurgeons, neurologists, nurses, etc.) welcome the opportunity to meet and talk with patients and their families to help them better understand the condition. Make an extra effort to promote the meetings that feature speakers.

Taking field trips

Every once in a while, it's good to break up the usual routine of meeting at someone's house or the library. If you have a good rapport with your local hospital, you should try to arrange field trips and tours that all family members can attend, including small children. Your members and their families will have an opportunity to take a behind-the-scenes look at an emergency room, CT or MR imaging center, operating room, and ICU. By planning the tour ahead of time, you can also try to have the hospital's public affairs coordinator arrange for people in each department to meet your group and talk with them about that particular area of the hospital. Some groups also like to plan one or two outings each year, such as a picnic in the summertime. Here, children and parents can meet more informally and have some fun.

Membership

Keep in mind that the size of your support group will ebb and flow. Once people learn about your group, you may see an initial influx of new families, which may taper off over time. And as time passes, people may decide that your group isn't right for them, or that they've received enough information to help them deal with hydrocephalus. When people want to leave your support group, they usually have a good reason. Let them know that you understand their needs and that they are always welcome back at any time.
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