Support groups form in response to people's needs to share information, feelings, and resources with others in a similar experience. ALS support groups have been in existence since the early 1980s, and the Internet has opened up a new way to be together.
Joining a support group can cause people to feel anxious because going to the group acknowledges the reality of the diagnosis. They approach the group with interest and caution. They wonder how much to reveal and who they will feel. Everyone, too, may have a different reason for being there.
It helps when people know what to expect. Most people have similar questions about the group so answering those questions ahead of time make a more comfortable atmosphere. Typical questions are:
Who facilitates the group?
What is the facilitator's background with ALS?
How frequently does the group meet?
Where does the group meet?
How accessible is the meeting area?
Is there a schedule of events or open discussion forum?
Am I required to talk?
Are my family and friends welcome to attend?
Name tags help people get acquainted with each other. Usually, the facilitator will ask everyone to introduce themselves to the group. Once the discussion begins, the facilitator will keep the conversation going and works to keep the atmosphere safe and welcoming.
In an ALS support group, the themes of change and loss are common. Death is, too, an ever-present reality. Other issues typically incuse living situations, mobility, home accessibility, risks associated with living alone, health care delivery system, inadequate government support, end-of-live care issues, and feelings of depression and dependency. People may quit the group when their disability becomes too restrictive.
At the end of the session, a date and agenda for the next meeting are announced. People ideally leave with a sense of accomplishment and eagerness.
"Periodically, the group and the facilitator allow time to evaluate what the group has accomplished, where it would like to go, and its influence with regard to informing, educating, and supporting its members. A group needs to reflect on its success as well as the concerns it wishes to further address. The life span of a group may be many years because new members continue to join. A support group is not rigid but reflects the changing life circumstances of its members. The group experience exists solely for the support and benefit of its members, and as such participants feel pride, responsibility, and ownership for the unique involvement that they have with each other." (p. 267) #1607
Ciechoski, M. (2001). Managing communication and swallowing difficulties. In H. Mistumoto and T. L. Munsat (Eds.) Amyotrophic lateral sclerosis: A guide for patients and families(pp. 261-270). New York: Demos.
Keyword: Mutual support |
