Understanding the purpose of support groups is one way for each
member to understand his/her role in the group. In order to keep the
group focused, the members need to determine the reason they are coming
together each time. It often helps for the group to develop guidelines
together, make a copy for each member and review them at the beginning
of each meeting to remind the members of the purpose of the group.
Some guidelines are given below to help you develop your own ideas.
- A support group is a way for people with the same concerns
to strengthen each other. The support needs to be gentle,
helpful and positive. In some ways, it replicates family
and friends coming together to help each other and chat
about an issue or a concern. It also is a time to share joys
and visions for the future.
- Sometimes, a professional may facilitate the group, but
most of the time it is best if parents choose a facilitator
from within the group.
- It is important that parents and caregivers feel they can
safely tell the other members their feelings and concerns and
to know that their comments will not be repeated to others.
The motto might be: "what is said here, stays here".
- Some groups like to have a specific theme for discussion at each meeting. Other groups like to let the members’ needs determine the focus of the meeting. In either case, it may be wise to keep a record of the topics that were discussed.
- Taking turns during the sharing time is very important for keeping the group together. Often allowing members an agreed upon length of time for sharing, and sticking to it, helps everyone feel that they are equal members of the group. Regular members may wish to share first so that new members can become more comfortable. New members may need a little more time to tell their stories.
- Perhaps the most important point for all members to understand is that a support group is not a place for members to tell each other what to do, what not to do, or what they should have done. Each parent and family must make their own decisions based on their child’s needs and the family’s situation. Providing information that can assist each family in making appropriate changes is one of the benefits of belonging to a support group.
- Members and the facilitator need to avoid words like: "should", "never" and "always".
- It is often better to suggest an idea that might work or has worked for other members. Suggesting is a gentle, supportive and respectful way to help another parent or caregiver.
- If an idea has not worked for a member, sharing that information as a "possible pitfall" to be avoided can be helpful. It may be that the idea or part of the idea may work for another family with different circumstances.
- Provide an opportunity for members to share phone numbers with each other. This will enable them to support each other and network between meetings. Some members may not be comfortable giving their phone number to others until they feel they truly are part of the group. Allowing time for an informal exchange, after the meeting, may be more respectful than asking new members to add their name to a formal listing of names and phone numbers.
- It may be helpful to have a number of meeting places if the members must drive long distances to meet. When meeting in members’ homes, it may be nice to rotate the location to spread the responsibility of hospitality among the members.
- Closing the meeting on a positive note will
encourage the members to return because they have felt support by the
others. If they have been struggling with a problem, they may be
strengthened in their efforts toward a solution.
A few more thoughts:
As parents pass through a crisis or confusing time, they may no longer
need to attend the group. Accepting that the group membership will change,
will help to maintain a positive attitude in the group.
Giving warm hospitality to new members will help them feel part of the
group and help them to have a sense of responsibility to the group. Many
people have been raised to solve their own problems and may be somewhat
uncomfortable going to a group of strangers for help or going to an
Members of the group may feel a need to address advocacy issues or to
learn more about their children’s disabilities, special education laws or
funding issues affecting adults by inviting speakers to present
information. Groups may want to make public announcements about
informational meetings to reach more parents and/or caregivers.
An outgrowth of the support group may be the formation of a
parent-to-parent network of parents with older children helping parents
of newborn or newly identified children with developmental disabilities.
If the purpose of the group is to provide positive help to each of
the members, the benefit to parents and caregivers will be on going and