1.)
Starting a New Self-Help Group; Things to
Consider.
- Purpose: Decide on the
purpose of the group. Will the group provide emotional
support,
education, advocacy?
- Membership: Who can attend
the meeting who cannot?
- Meetings: Where, how often,
how long? Guest speakers, lectures, group discussions?
- Use of Professionals:
Consider using professionals as advisors, consultants, or
speakers and
as sources of information and referrals.
2.) Get
Organized.
- See if there is a group
already in your area.
- Check the
S.O.S. Support Group Database.
- If you find a existing group
contact them and ask for guidance they might have.
3.)
Consider Going to a Similar
Group.
- This will give you a
feel on how they operate*. You may consider borrowing
their best techniques
to use in your own group.
*Before going to any group
it is best to call and ask if you can attend.
4.)
You
Don't Have
to Start a
Group by Yourself.
There are
others that share your disease.
To generate interest you
can:
- Circulate a flyer or
letter to doctors and hospitals asking for their
patients with sarcoidosis letting
them know how and where they can contact you.
- Make copies of
flyers and post them in places you feel appropriate.
e.g. library, community center,
clinic, post office.
- Publish a notice in
your church bulletin and newspaper.
5.) At
the Meeting.
- Try finding free
space at a church, library, hospital, community
center, etc.
- It is best for your
group to meet at the same time, place and weekday
each month, week, etc.
e.g. third Wednesday of the month at 7:00 p.m., Rush
North Shore Medical Center.
- Ask everyone
attending if they would be interested in sharing the
responsibilities of organizing the
group. Involving several people in the initial work
of the first meeting will show that the group is a
cooperative effort.
- Expect your group to
experience "ups" and "downs" in terms of attendance
and enthusiasm.
- Stay in touch with
the needs of your members.
IDEAS
AND CONSIDERATIONS FOR STARTING A SELF-HELP
MUTUAL AID GROUP FOR SARCOIDOSIS excerpt from
Sandra Conroy's book Sarcoidosis Resource Guide And
Directory ©
A self-help group can offer persons with sarcoidosis an opportunity
to meet with others and share their experiences, knowledge, strengths
and hopes. Run by, and for their members, a self-help group can be
described as a "mutual help" group since members are helping one
another. Dozens of different self-help groups are started each week
across the nation by ordinary people with a little bit of courage, a
fair sense of commitment, and a heavy amount of caring. The following
guidelines are based on experiences at the Self-Help Clearinghouse,
helping hundreds of individuals to start different groups. While there
is no one recipe for starting a group (you will be looking at local
resources and members specific needs), we have listed below a few
general considerations you may find helpful.
1.) Do not try to Re-invent the Wheel.
- If you are interested in
starting a sarcoidosis group, talk to people who are involved in
groups now or have started ones before. Check with your Sarcoidosis
Resource Center to find out about existing groups. Contact some of
those groups by phone or mail. Ask for any sample materials they
have flyers, brochures, newsletters, press releases, or other
printed material. If you have a local self-help clearing house in
your area, determine what help they can provide you in developing a
group. Consider attending a few meetings of other types of self-help
groups to get a feel for how they operate--then borrow what you
consider their best techniques and formats to use in your own group.
2.) Think "Mutual-Help" From the Start.
- Find a few others who share
your interest in starting, (not simply joining) a self-help group.
Put out flyers or letters that specifically cite this. Your "core
group" or "steering committee" can help prevent you from "burning
out". But perhaps more importantly, if several people are involved
in the planning and initial tasks (refreshments, publicity, name
tags, greeters, etc.), they will be role models for others at the
time of the first public meeting. They will demonstrate what
self-help mutual aid is all about not one person doing it all, but a
group effort. Try to enlist the aid of professionals who may see
sarcoidosis patients. Ask if they would refer to you any patients
who may be interested in helping to start a group. Ask those same
professionals if they would be willing to speak before any group
that is eventually started.
3.) Find a Suitable Meeting Place and Time.
- Try to obtain free
meeting space at a local church, synagogue, library, community
center, hospital or social service agency. The facilities should be
barrier free. If you anticipate a small group and feel more
comfortable with the idea, consider initial meetings in members'
homes. Would evening or day meetings be better for members? Most
prefer weeknights. It is easier for people to remember the meeting
time if it's a regular day of the week or month, like the second
Thursday of the month, etc. Some people like to have the meeting
around an informal supper, such as a potluck. A few even have
meetings at a diner or restaurant.
4.) Publicizing and Running your first Meeting.
- Reaching potential
members is never easy. Consider where people with sarcoidosis would
go. Wouldn't they be seen by particular doctors or at pulmonary
clinics at local hospitals? Contacting physicians and other health
professionals (e.g., local Lung Associations) can be one approach to
try. Flyers in post offices, hospitals, and libraries may help. Free
announcements in the community calendar sections of local newspapers
can be especially fruitful. Better yet, try phoning the editor, and
simply explain what type of group you want to start. Indicate how
you would like to reach out to other people who have this condition,
while educating the public to the problem. Be prepared with some
facts on the disorder that can be expressed in non-medical terms.
Also consider providing the names of physicians or health
professionals who know about sarcoidosis and would be willing to
speak to a reporter. Remember to clear the use of their names with
them before using them as spokespersons.
- The first meeting should be arranged so that there will be ample
time for you to describe your interests and your work, while
allowing others the opportunity to share their feelings and
concerns. Do those attending agree that such a group is needed? Will
they attend another meeting, helping out as needed? What would they
like to see the group do, what issues discussed or presented? Based
on members' needs, interests, and responses, make plans for your
next meeting.
5.) Future Meetings.
Other considerations for future meetings may be
the following:
- Defining the purpose of the group to provide education and
support? This may be added to any flyer or brochure you have
for the group. Include guidelines or agenda you have for your
meetings.
- Membership.
Who can attend meetings? Should regular
membership be limited to those with sarcoidosis with an
associate membership for spouses, other family members and
friends?
- Meeting format.
What combination of discussion time,
education, business meeting, service planning, socializing, etc.
suits your group best? What guidelines might you use to assure
that discussion be nonjudgemental, confidential and informative?
Topics can be selected or guest speakers invited. A good
discussion group size is seven to fifteen. As your meeting grows
larger, consider breaking down into smaller groups for
discussion.
- Phone network.
Self-help groups should provide an atmosphere
of caring, sharing and support when needed. Many groups
encourage the exchange of telephone numbers to provide help over
the phone whenever it is needed.
- Use of professionals.
Consider using professionals as
speakers, advisors, consultants to your groups, and sources of
continued referrals.
- Projects.
Always begin with small projects. Rejoice and pat
yourselves on the back when you succeed with these first
projects, like having a flyer or a brochure printed, or
developing a library or service project. Then, with time, work
your way up to the more difficult tasks.
6.) Lastly, expect your group to experience "Up's and Down's" in
terms of attendance and enthusiasm. Such fluctuations are natural
and to be expected. You may want to consider joining or forming a
coalition or a group of leaders, for periodic mutual support and the
sharing of program ideas and successes.
A
special thank you to Brenda Harris
and Sandra Conroy for
outlining these fundamental
steps for setting
up a support group!
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