Starting a New Self-Help Group; Things to
- Purpose: Decide on the
purpose of the group. Will the group provide emotional
- 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
as sources of information and referrals.
- 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.
Consider Going to a Similar
- 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.
to Start a
Group by Yourself.
others that share your disease.
To generate interest you
- 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.
- Try finding free
space at a church, library, hospital, community
- 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
- Expect your group to
experience "ups" and "downs" in terms of attendance
- 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.
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.
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
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.
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.
Other considerations for future meetings may be the
- 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
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
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.
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.
special thank you to Brenda Harris
and Sandra Conroy for
outlining these fundamental
steps for setting
up a support group!