these materials provide a good reference point for those just starting a
vicug.
kelly
>From the web site http://www.cmhc.com/selfhelp
CONTENTS
What is a Self-Help Group?
The Value of Self-Help Support Groups
Research Related to Self-Help Support Groups
Starting a New Self-Help Group
Starting an Online Self-Help Group
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What is a Self-Help Group?
Self-Help groups can be more appropriately
called "mutual help" groups. Essentially
there are four characteristics that make
them what they are:
* Mutual help - This is the primary
dynamic process that takes place
within the group -- it's people
helping one another and helping
themselves in the process.
Experiences are shared, knowledge is
pooled, options are multipled, hopes
are reinforced, and efforts are
joined as members strive to help one
another.
* Member-Run - Member run and "owned".
Providing a sense of belonging and
reflecting members'felt needs. They
are not professionally run groups.
If professionals are involved (and
in many cases they are) they serve
in ancillary supportive roles, i.e.,
they are "on tap, not on top" as
some groups describe it.
* Composed of Peers - members share
the same problem/experience,
providing a powerful "you are not
alone" sense of understanding, which
can often lead to an almost instant
sense of community at the first
meeting.
* Voluntary Non-Profit organization -
volunteer-run, no fees; dues if any
are minimal. They are, as described
by A. Tofler in his 1980 book, The
Third Wave, as "prosumers," rather
than "consumers.
The most exciting and important capability
of self-help support groups is that ordinary
people, in joining with others, start these
groups in their local communities when none
exist, and then they often become an
extraordinary resource to others. They don't
need a grant, an agency, or even a office -
just the inspiration and a few other people
who share their experience and common sense.
When there is no national organization, what
significantly helps is simply knowing that
there indeed is a group that has already
started somewhere, that shows such groups
can be developed and can provide information
so that others don't have to re-invent the
wheel. When there is a national group, a
model group can also show how such a group
might be run differently. But in either
case, it greatly encourages others to take
those steps.
----------
The Value of Self-Help Support Groups
Former Surgeon General Koop has noted that "My years
as a medical practitioner, as well as my own
first-hand experience, has taught me how important
self-help groups are in assisting their members in
dealing with problems, stress, hardship and pain...
Today, the benefits of mutual aid experienced by
millions of people who turn to others with a similar
problem to attempt to deal with their isolation,
powerlessness, alienation, and the awful feeling that
nobody understands." - former Surgeon General Koop (in
the book, Self-Help: Concepts and Applications, edited
by A. Katz, et. al,Charles Press, 1992).
"Mutual help groups are a powerful and constructive
means for people to help themselves and each other.
The basic dignity of each human being is expressed in
his or her capacity to be involved in a reciprocal
helping exchange. Out of this compassion comes
cooperation. From this cooperation comes community." -
Phyllis Silverman, PhD, Dept of Psychiatry, Harvard
Medical School, from Introduction to the "Self-Help
Sourcebook," 1995, p. 24.
"These groups make significant contributions to
positive outcomes for persons affected by mental &
behavioral disorders." - from "Healthy People 2000:
National Health Promotion and Disease Prevention
Objectives" (1991) report issued by U.S. Dept. of
Health & Human Services, setting the establishment of
self-help clearinghouses in 25 states as one of the
official national health objectives for the year 2000.
"It is one of the most beautiful compensations of this
life that no man can seriously help another without
helping himself." - Charles Dudley Warner, 1873,
American essayist, editor, novelist
The future of health care in these troubled times
requires cooperation between organized medicine and
self-help groups to achieve the best care for the
lowest cost" - former Surgeon General Koop, (in the
book "Self-Help: Concepts and Applications" edited by
A. Katz, et. al, Charles Press, 1992).
In an interview (in NJ Monthly, January, 1992, p. 32),
national pollster George Gallup commented upon the
despondency and apprehension that many Americans felt
in the face of the problems of the economy, crime,
drugs, and education. When asked if all the future
trends were doom and gloom, he concluded the the
interview by answering: "Not at all.... there is a
widespread tendency among Americans to get together in
small groups - support groups, self-help groups,
groups of all kinds, really. In our fragmented
society, where loneliness and isolation are so
prevalent, it is encouraging to see so many people
reaching out to each other. It's a very hopeful sign
for the future."
----------
Research Related to
Self-Help Support Groups
Please see also a review article on the
effectiveness of self-help groups.
It's not easy to capture the value of self-help groups
through empirical studies. But some researchers have
partnered with self-help groups to find appropriate
ways. For those with interest, here are some studies.
Several professionally run support group studies are
included. Teachers at all levels might note that the
personal stories which people tell within and about
mutual help groups can often convey more understanding
of their value - consider adding it to the curriculum.
Results of a University of Chicago Medical School
study of older men with DIABETES found that those who
learn self-care techniques and participate in
member-run support groups two years later are less
depressed, less stressed, gain more knowledge, and
rate the quality of their lives higher than those who
didn't take such actions ("Diabetes Support Groups
Improve Health of Older Diabetic Patients" by Janice
Gilden M.D., et.al., "Journal of the American
Geriatrics Society." vol. 40, pp 147-150, January,
1992). One of the researchers, Dr. Michael Hendryx,
also noted that "a group leader does not have to be
experienced for the session to be valuable."
Similar research on group benefits has already shown
the value of groups for YOUNG DIABETICS ("Effects of
Peer-Group Intervention on Metabolic Control of
Adolescents With IDDM" by Barbara Anderson, et. al.,
"Diabetes Care," vol. 12, no. 3, March 1989, pp.
179-183), suggesting that "problem-solving groups can
be more effective with young adolescents with IDDM
than conventional treatment."
A Duke University study in the Journal of the American
Medical Society (vol. 267, no. 4, pp. 520-524),
examined 1,368 HEART PATIENTS over time and found that
those persons who lacked a spouse or confidant were
three times as likely to die within 5 years of
diagnosis than those who were married or had a close
friend. As reported in the New York Times of Feb. 5,
1992, Duke researchers noted that... "A support group
may be as effective as costly medical treatment."
In terms of addiction, research reported in the
"American Journal of Psychiatry" (vol. 151, February,
1994, pages 254-259) by James McKay and colleagues
reflected how a sample of 180 substance dependent, low
income patients (who were 82% African American),
showed that post treatment self-help group affiliation
predicted lower rates of SUBSTANCE ABUSE after
treatment. They showed that this effect was not due to
patient motivation or any other individual
characteristic, and they did not just rely on
self-report, but also did urine tests.
In a study reported in the "Archives of General
Psychiatry," 1993, Dr. Fawzy I. Fawzy found results
that suggest that being part of a support group for
persons at the early stages of SKIN CANCER can
increase their chance of survival threefold over a
five-year period. Six months after the group sessions
ended, two-thirds of the patients in the
professionally assisted support groups showed an
increase of 25 percent or more in what are called
natural killer cells, cancer fighting cells in the
immune system. No such increase was found in the
control group.
In his noted research, Dr. David Spiegel of Stanford
University, noted that women with BREAST CANCER in a
professionally run support group, where one of the
professional facilitators had breast cancer, the group
members had a survival rate double that of the control
group. ("Effect of Psychosocial Treatment on Survival
of Patients with Metastatic Breast Cancer by Speigel,
D, J. R. Bloom, H. C. Kraemer, & Gottheil, E., "The
Lancet," 8668, 2, 1989, pp. 888-891).
Patients DISCHARGED FROM A PSYCHIATRIC HOSPITAL who
participated in a Community Network Development (CND)
Program required one-half as much rehospitalization,
ten months after discharge, as a comparable group of
non-participating ex-patients. Self-help and mutual
support were emphasized in the CND program. CND
ex-patients also required one-third as many patient
days of rehospitalization (7 vs 25 days) and a
significantly smaller percentage of them needed to
continue to attend Community Mental Health Centers and
other mental health agencies for services (48% vs
74%). (Gordon, R.E., Edmunson, E., and Bedell, J.
"Reducing rehospitalization of state mental patients:
Peer management and support." In A. Jeger and R.
Slotnick (Eds.) "Community Mental Health," New York:
Plenum, 1982.)
Volunteer leaders in Recovery, Inc., a self-help group
for people who have been treated for MENTAL HEALTH
problems (half of whom had been hospitalized for
mental illness) felt they benefited from their
participation. Leaders' ratings of their overall
satisfaction with life and health, as well as their
satisfaction with work, leisure, and community were
high, and equivalent to the general public's levels of
satisfaction. (Raiff, N.R. "Self-help participation
and quality of life: A study of Recovery, Inc.",
"Prevention in Human Services," 1 (3), 1982.
CHILDREN OF PARENTS WITH DRINKING PROBLEMS who
participated in Alateen, a self-help group sponsored
by Alcoholics Anonymous, suffered less emotional and
social disturbance than peers who did not belong.
(Hughes, J.M. "Adolescent children of alcoholic
parents and the relationship of Alateen to these
children" in the Journal of Consulting and Clinical
Psychology, 45 (5), 1977.
Participating in a self-help group for FAMILIES OF
PSYCHIATRIC PATIENTS reduced the family's sense of
burden. Members found the group helpful because it
provided them with information about schizophrenia and
coping strategies which professionals didn't provide.
Participation also helped parents to develop
supportive social bonds with others who were
experiencing similar problems. (Potasznik, H. &
Nelson, G. "Stress and social support: The Burden
Experienced by the Family of a Mentally Ill Person.
American Journal of Community Psychology, 12 (5),
1984.
Parents Anonymous seeks to break the vicious cycle of
CHILD ABUSE by halting parental abuse of children who
would otherwise grow up to be abusive parents
themselves. An independent national evaluation of
Parents Anonymous conducted by Behavior Associates of
Tucson, Arizona revealed that of the 19% of group
members who physically abused their children on a
daily basis before joining Parents Anonymous, only 1%
reported continuing such abuse immediately after
joining the group. "Parents Anonymous Frontiers"
Newsletter, (Winter, 1976).
Another study found that Parents Anonymous parents
reported that they gained insight into their reactions
to the abuse they typically experienced as children
and that they learned new ways of expressing love and
affection to their own children. (Comstock, C. M.
"Preventive processes in self-help groups: Parents
Anonymous" in Prevention in Human Services: Helping
People Help Themselves, 1 (3), 1982.
Participants in national self-help group for parents
of young drug and alcohol abusers -- (PRIDE - Parent
Resources Institute for Drug Education) -- reported
that their participation was associated with
improvement in their children's DRUG PROBLEM. A
majority of the participants also reported
improvements in their children's general discipline
problems and in adjustment outside the home.
(Galanter, M.D., Gleaton, T., Marcus, C.E. & McMillen,
J. "Self-help groups for parents of young adults and
alcohol abusers" in the American Journal of
Psychiatry, 141 (7), 1984.
----------
Starting a New Self-Help Group
The following guidelines are based on the experiences
of the American & N.J. Self-Help Clearinghouses. While
there is no one recipe for starting a group in your
community (different national groups rely on different
models), we have listed a few ideas you may find
helpful.
Table of Contents
* Don't Re-invent the Wheel
* Think "Mutual-Help" From the Start
* Find a Suitable Meeting Place and Time
* Publicize and Run your First Public Meeting
* Future Meetings
* Final Thoughts
Don't Re-invent the Wheel
Chances are that a group focused on your particular
concern already exists. If you have a local self-help
clearinghouse serving your area, call to confirm that
there isn't already a group in you area. Check the
database here. If you find an existing national group,
contact them and ask for any "how-to" guide or starter
packet they may have. Ask about group leaders nearest
to you and consider calling them. If you are
contacting a model group for your issue, ask if they
might send you sample material they have used (flyer,
press releases, etc.). If there is a local self-help
clearinghouse in your area, also determine from them
what assistance they can provide to you in developing
your group. If you can, consider attending a meeting
of one or two other local self-help groups that may be
somewhat somewhat similar to the group you are
starting, simply to get a feel for how they operate,
then borrow what you consider their best techniques to
use in your own group. Before going to any such group,
call first and ask if you may attend.
Think "Mutual-Help" From the Start
You do not have to start a group by yourself. There
are others who share your problem.
Find a few others who share your interest by
circulating a flyer or letter that specifically cites
how if one is interested in "joining with others to
help start" such a group, they can contact you.
Include your first name, phone number, and any other
relevant information. Make copies and post them at
places you feel are appropriate, e.g., library,
community center, clinic, or post office. Mail copies
to key people whom you think would know others like
yourself. You can also ask if the notice might be
published in your local church bulletin and newspaper.
When, hopefully, you receive a response, discuss with
the caller what their interests are and what you would
like the group to do. Ask if they would be willing to
share the responsibilities of organizing a group for a
specific period of time. By involving several people
in the initial work of the first meeting, they will
model for newcomers what your self-help mutual aid
group is all about: a cooperative effort.
Also, consider obtaining the assistance of any
professionals who may be sensitive to your needs and
willing to assist you in your efforts. Physicians,
clergy, and social workers may be helpful in various
ways, from providing meeting space to locating needed
resources.
Find a Suitable Meeting Place and Time
Try to obtain free meeting space at a local church,
library, community center, hospital, or social service
agency. Chairs should be arranged in a circle and
avoid a lecture set-up.
If you anticipate a small group and feel comfortable
with the idea, consider initial meetings in members'
homes. Also, try and set a convenient time for people
to remember the meeting, e.g., the first Tuesday of
the month.
Publicize and Run your First Public Meeting
To reach potential members, consider where they might
go to seek help.
Would they be seen by particular
professionals or agencies? If the answer is
yes, try contacting these professionals.
Posting announcements in the community
calendar section of a local newspaper,
library or community center can be
especially helpful. The key is to get the
word out.
The first meeting should be arranged so that there
will be ample time for you and other core group
members to describe your interest and work, while
allowing others the opportunity to share their view of
how they would like to see the group function.
Identify common needs the group can address. Although
you do not want to overload you new arrivals with
information, you do want to stress the seriousness of
you intent and the necessity of their participation.
Make plans for the next meeting and consider having an
opportunity for people to talk and socialize
informally after the meeting.
Future Meetings
For future meetings consider the following:
* Purpose: Establish the purpose of the group.
Is the purpose clear? Groups often focus upon
providing emotional support, practical
information, education, and sometimes
advocacy. Also determine any basic guidelines
your group will have for meetings (to possibly
ensure that group discussions are
confidential, non-judgmental, and informative.
* Membership: Who can attend meetings and who
cannot? Do you want membership limited to
those with the problem? Will there be
membership dues? If so, how much?
* Meeting Format: How will the meeting be
structured? How much time will be devoted to
business affairs, discussion time, planning
future meetings, and socializing? What topics
will be selected? Can guest speakers be
invited? If the group grows too large,
consider breaking down into smaller sub-groups
of 7 to 12.
* Roles and Responsibilities: Continue to share
and delegate the work and responsibilities in
the group. Who will be the phone contact for
the group? Do you want officers? Consider
additional roles members can play in making
the group work. In asking for volunteers, it
is sometimes easier to first ask the group
what specific tasks they think would be
helpful.
* Phone Network: Many groups encourage the
exchange of telephone numbers or an internal
phone list to provide help to members between
meetings. Ask your membership if they would
like this arrangement.
* Use of Professionals: Consider using
professionals as advisors, consultants, or
speakers to your groups, and as sources of
continued referrals and information.
* Projects: Always begin with small projects,
then work your way up to more difficult tasks.
Final Thoughts
* Stay in touch with the needs of your members.
Periodically ask new members about their needs
and what they think both they and the group
can do to meet them. Similarly, be sure to
avoid the pitfall of core group members
possibly forming a clique.
* Expect your group to experience "ups and
downs" in terms of attendance and enthusiasm.
It's natural and should be expected. You may
want to consider joining or forming an
informal coalition of association of leaders
from the same or similar groups, for your own
periodic mutual support and the sharing of
program ideas and successes.
While you can obtain the best "how-to" literature from
existing self-help groups, as well as from any local
self-help clearinghouse, there are other suggestions
provided (to include those for professionals seeking
to help initiate the process) in the Self-Help
Sourcebook on pages 195 to 216.
----------
Starting an Online Self-Help Group
We're glad that you are thinking about the possibility
of starting an online self-help group. To assist your
particular needs, here are a few ideas that will help
you get started:
Table of Contents
* Existing Services
* Don't Romanticize
* Look and Learn
* Taking the Big Step: Planning the Online
Conference
* Final Thoughts
Existing Services
While on-line "real time" meetings occur on commercial
services like CompuServe, America Online, and Prodigy,
more often live meetings are developing at Internet
forum sites, e.g., the Transformations Forum
(http://www.transformations.com/) or ParentsPlace
(http://www.parentsplace.com/). Meetings usually take
place at a preset time on a weeknight or weekend. You
might want to begin your effort by posting a message
in forums on one or more of the national commercial
systems. Ask if there are any other individuals
interested in learning more about the problem and/or
are interested in starting an online group.
[Compuserve, for example, provides three
forums to post messages: the Health and
Fitness Forum (type "go Goodhealth"), a
medical professional forum called MedSig
(type "go SFP5"), and the disabilities forum
(" go disabilities"). In each health-related
forum of interest, register your name and
interest in their "Member Directories" by
typing in your specific problem as one or
more of the keywords." Check if any others
have already registered there within your
interest.]
If you know of a national self-help group that exists
for your disorder, request a short item be placed in
their national newsletter describing the online
efforts, asking if others have access to that service
and are interested in exchanging experiences and ideas
on-line. Try to elicit a response from the following
questions in your letter:
* Is the national self-help group interested in
having its officers meet on-line?
* What about state coordinators or local
self-help group leaders?
Remember to include your e-mail address and any other
relevant information.
Don't Romanticize
Visions of sophisticated real-time, on-line meetings
are natural, and with hard work, a definite
possibility. Yet, don't become mesmerized with this
goal that you ignore the rich value of message threads
on message boards. Consider posting a question,
thereby starting a "message thread" that might focus
on one or two of the questions of key relevance to
your illness or concern. This method of "mutual help"
allows individuals to ponder the question(s) at their
convenience, thus avoiding the difficulties of
planning an on-line conference. Message boards may be
found on BBSs, Fidonet conferences, Internet mailing
lists, and news groups.
Look and Learn
Demonstration often is the best teacher, and what
better way to gain a feel for the dynamics of an
on-line support group than to attend one or two
on-line conferences. By observing a well organized
on-line conference, you should learn how one is run,
the function and duties of a facilitator, and
conference commands you can use.
[Using CompuServe again as an example, one
uses the command "/name" to shorten your
nane while in conference, or "/exit" to
leave. Other commands in conference include
"!" to indicate you have a comment or "?" if
they have a question waiting. Also, emember
to check the necessary baud rates for the
meeting. Compuserve charges more for higher
baud rates.]
Taking the Big Step: Planning the Online Conference
Once you have five or more interested volunteers, set
a tentative date for the actual real-time conference.
The most convenient times often are on the weekends.
Post messages in related Newsgroups to publicize your
first meeting. Some inaugural meetings start with a
guest speaker in order to attract new recruits. If you
want a guest speaker for your first meeting, arrange
and confirm the speaker's appearance well in advance,
and make the systems operators of related Forums aware
of your efforts.
Newsgroup announcements are the best way to gain
publicity for your conference. Include in the message
the speaker's background and main points of his or her
presentation. If your guest is not on-line or does not
subscribe to a particular service, it is your
responsibility to find an individual with your on-line
service that lives near the speaker who would be
willing to host him or her. In many cases, you might
be required to serve as the guest's host.
Constantly try to recruit others interested in your
endeavor. It is all too easy for one individual who
believes they can manage an on-line group to burnout
early in the game. Indicate to others that this is
something you cannot do alone. One easy way to attract
new members is to create a LIBrary file of the most
frequently asked questions about your topic. Include
information about your on-line activities and meeting
times.
Final Thoughts
* Be patient. A successful on-line support group
cannot be built overnight.
* Be supportive of other forum members who share
the same needs as yourself. They may be able
to offer you valuable "how to" information in
complex or difficult situations.
* Be demonstrative. You are there to share and
educate others about your concern. Arguing and
over-reacting does not help your cause, even
if your are trying to prove a point.
* Try to understand the person's feelings, while
remaining welcoming and non-judgmental.
Good Luck!
----------
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