In this issue of NeuroNews we have chosen to focus on the usefulness of support groups to help survivors weather the trials that come with TBI. In "Let's Get Started," Barbara Corkadel, the facilitator of our local TBI support group outlines the steps necessary to get a group started and keep it going. In "An Outside Perspective," Bill Eldridge makes some salient points from the perspective of an Independent Living Facilitator. Finally, in "Support Groups Surveyed," Jean Dwyer synthesizes her experience with the viewpoints of various support group members from our informal support group survey.

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Lets get started ! by Barbara Corkadel

It takes time and a lot of hard work to develop a support group. Here is very brief overview of how to do it, accompanied by the specifics of how I started our local group: First, establish that there is a need for a support group. There may already be a group in your area that serves your population. In our case, there had been a support group in the area some years earlier that had been discontinued, and I made contact with the persons responsible for facilitating that support group. They shared with me the names of persons who might be interested in such a group and confirmed my suspicion that there indeed was a need for such a group in our area. The second task is to identify a location in which to host the meetings. A location having access for people with all types of disabilities is an important consideration. Try to find a public facility in a central location that is easily accessible by public transportation that will be willing to host your group. Libraries, Town Halls, and Public Schools are three examples of public facilities that often allow their spaces to be used for such purposes as holding support groups. In our case the site which became available was a local hospital that had hosted support groups previously. The third task is to find a sponsor to help offset the costs of running the support group. Very often you will find survivors or family members that are willing to donate time, but there will be other more tangible costs, such as producing and mailing notices for the meetings. In our case, NeuroAdvance offered to fill this position. Other suggestions for finding funds: contact local Health Care Organizations (hospitals, HMO's, to see if there would be money available to help you fund your group. The Fourth task is to promote your group. Notify people in the community. Post materials at local business and health organizations. In our area I was able to use local access TV to get the message out. I also approached existing organizations to notify potential members of the new local group. Once the group has been established, your job as a facilitator is to plan meetings on a regular basis and encourage participating members to keep coming. Planning meetings at regular intervals may help to give the meetings a sense of ritual. Telephone reminders can be helpful as long as you are sure you are not being invasive. Most of all your role will be to build trust among the members of the group and yourself in order to have an open dialog at the meetings. Planning additional informal recreational outings can help to foster a sense of community. Maintaining the support group will be a lot of work, but the benefits will be evident in the ample appreciation of your members.

An Outside Perspective by Bill Eldridge

As an Independent Living Facilitator I have had an opportunity to accompany clients to many support group meetings. I feel that the support group meetings encourage the head injury survivor to interact with others who are experiencing similar challenges brought about by their head injury.

I also believe that friends and families should be encouraged to attend support group meetings, in order to gain a better understanding of what the head injured person maybe experiencing in regards to rehabilitation and all other aspects of surviving a head injury.

All support group meetings should be kept informative without being negative or becoming complaint sessions. Last but not least the support group should continue to offer fun social events such as bowling and picnics; this gives the head injury survivors a chance to socialize with peers who have experienced similar hurdles in the recovery process.

Support Groups Surveyed by Jean Dwyer

An informal survey was conducted during the last month at our support group meetings in Milford and Danvers. Participants were asked to talk about their reasons for attending support groups, what they found helpful about them, what makes them difficult, and to detail some of their best and worst experiences. What follows is a consolidation of their answers and the opinions of the support group facilitators.

It is important that the support group provides a non-judgmental environment where feelings and concerns can be openly voiced and heard. Going to a support group helps the individual to recognize that there are other people in similar positions, sharing the same difficulties. Hearing others views can also illuminate new ways for the individual to cope with and adapt to TBI.

When different participants share thoughts on a specific problem, it is important that they listen to and validate the concerns and experience of all of the other participants. If participants are belittled or feel that they are not being respected, they may withhold valuable insight or experience out of fear. It is helpful for a facilitator to be present and aware to assist with this. Only in this environment will all of the participants feel comfortable in working towards solutions. It is also important that the facilitator and all participants keep in mind the importance of working toward the resolution of problems, rather than simply continuing to offer a never ending grocery list of grievances.

Revised: Saturday, February 23, 2002 08:42 AM