The HEP Support Group Handbook
Prepared by the Hepatitis Education Project (Oct.
'96)
The Hepatitis
Education Project (HEP) is a non-profit corporation chartered
in the State of Washington. Formed by hepatitis patients and
medical professionals, its mission is to provide support and
educational materials for hepatitis patients and their families,
and to help raise awareness among patients, medical personnel and
the public of the facts concerning hepatitis and the resources
available to help those who suffer from the disease.
In 1993, HEP formed its first support group in the city of
Seattle. In the following three years the number of groups expanded
gradually until today we have over 15 groups throughout the Pacific
Northwest. The experiences gained in creating and maintaining these
groups are the basis for this handbook. We know from our contacts
around the country that there are many individuals who want to
start support groups but are not sure how to start or what steps to
take. We hope that this handbook will help you to achieve your
goal.
It can be done. Many of our members have started support groups,
with no more experience than you have, and with little or no money.
What it takes is the will to do it, a little preparation, and some
hard work. Above all, the cardinal virtues of support group
formation are patience and persistence. Support groups do not form
overnight, and it takes time for people to get to know and trust
the group and for the word to spread. But once it does the rewards
are great. People really appreciate the work you are doing and you
can easily see how much good you have done when a successful
support group meeting concludes.
The handbook is broken down into five simple steps. We know that
each individual situation will be different, and no "cookbook"
formula will always work - everyone needs to use good judgment and
adapt to their local situation. But the issues that we talk about
in each step are the ones that we think are most important to focus
on for successful support group formation. They've worked for us in
a variety of contexts, urban and rural, across the Pacific
Northwest.
Step 1
Form a core group - link up with others to get
started.
There's no need to reinvent the wheel or go it alone. There are
others out there who have knowledge and expertise that you can use
and who want to help. Seek them out, contact them and learn from
them - it'll make the process much easier. The information you
gather during this stage and the experience you gain will be very
helpful when the support group has been formed.
Linking with other support groups - there are lots of people who
have organized support groups around the country, and it makes
sense to talk to these people before beginning your process.
Forming a support group is not an extremely demanding or complex
process, but there are some right ways and wrong ways to do it, and
it helps to talk with others who have experience and can tell you
what works for them and what doesn't.
Our organization can provide help and tips, and we've provided a
list of Hepatitis Organizations (see below) that
can provide you with many other pointers. Follow these up, talk to
folks who have built successful support groups, and listen to what
they say. Everyone who has done this will want to help - we all
realize how important this is and what a great need there is for
support.
While you're making these contacts, be sure to collect
brochures, handouts, and information from these organizations.
Start to look these over and evaluate them to see if they fit into
your own vision of how your support group will work. Having some
information gathered ahead of time will get you off to a good
start.
Finding allies locally - while it is possible to do this
entirely on your own, it really helps to have some friends. Each
person you add to your core group brings resources, ideas and
support for everyone, and makes the whole process run more
smoothly. It will help you through the rough spots, because the
process can be frustrating sometimes, and sharing ideas,
inspiration, and work will really help.
So where do you find these allies? The first place to start is
with your doctor, nurse, or other medical professional. Ask them to
spread the work that you're trying to start a support group - ask
if they know of any other patients or medical professional that
might be interested. By law they cannot directly give you the name
of other patients. But they can pass on information to those
patients, and then if the patients are interested they can call
you. Medical professionals also talk a lot with their colleagues
and can spread the work that a support group if forming.
So a crucial first step is to construct a list of names,
addresses and phone numbers of physicians, public health people,
social workers, etc. in your local area. Don't be afraid to call
around and ask medical people who in their area treats hepatitis
patients - not everyone will be interested. If possible, try to
find a medical professional who will mentor your group. Ideally
this person will be someone with a strong interest in hepatitis and
one who recognizes the need for these groups and is willing to put
time and energy into forming and supporting them. This person can
help you in several ways - by contacting medical professionals and
asking for their help, by contacting other patients to see if they
would like to join, and by attending your support group meetings
later on, giving advice, and providing information. Your mentor is
an invaluable ally and it's worth spending some time trying to find
one. Mentors can be physicians, such as gastroenterologists or
hepatologists. They can be nurses who deal regularly with hepatitis
patients. They can be recruited in departments of public health,
which usually have someone who specialized in hepatitis issues. Or
they can be from a social work background. Hemophiliac
organizations, blood banks, and narcotic addiction recovery groups
can all provide key people who have knowledge about hepatitis and
an understanding of the need for support groups.
But besides medical people, your primary need is to contact
other patients. Sometimes flyers or other publicity can help to
reach others. This can be as simple as printing up some 3x5 cards
by hand and posting them in clinics where hepatitis patients are
likely to see them. Or you can us a home computer to crank out a
simple notice, letting people know that there's a support group
forming and giving them a way to contact you. As you drop these off
in clinics, hospitals and treatment centers, be sure to stop by the
desk and let people know what you're doing - they may remember and
tell patients about it when they see them.
This brings up a key issue - contact phone numbers and
addresses. Like any chronic disease, hepatitis is a sensitive
issue, and many people are reluctant to have their name or phone
number publicized in that context. You will need to decide how
people should get in contact with you. If using your personal phone
number is a problem you can try to get a medical professional to
take the calls, or use a PO Box - those are relatively inexpensive
and don't give away your personal information.
You will also need to be sensitive to the privacy concerns of
those who contact you. Many hepatitis patients are reluctant to "go
public" with the disease, so you must be very careful not to
release names and addresses without a really pressing need and
appropriate permissions.
Step 2
Design your support group, decide on a meeting
place.
Once you have your core group, sit down and discuss how you want
your support group to work. You don't have to do too much designing
ahead of time - you can always just call together as many people as
you can and let the discussions be really informal. But here are
some concerns that you may want to talk about ahead of time.
Using a facilitator - some groups like to have a more formal
structure than others. In some, one individual will chair the
meeting and exercise some control over who gets to speak and what
the topics are. Sometimes that facilitator is a medical person or
therapist with formal training, other times simply a patient with a
lot of experience and knowledge about the disease. But the key
element is control over the flow of the discussion in the group. An
unstructured group can get chaotic, but it allows discussion to
range over all the topics that the members want to address and
everybody get to talk. Facilitated groups are more concentrated and
orderly, but pressing issues for certain individuals may be missed
if they are not on the topic.
Formal presentations - some groups like to focus on formal
educational presentations by experts with Q & A periods
following the presentation. In this kind of format, you find an
expert in a particular topic and invite them to give a
presentation, then advertise that to your support group membership
to be sure that they know what kind of meeting you're having. You
set the presentation up as a lecture/demonstration or discussion
group - whatever the expert is comfortable with, provide some
refreshments, and see how it goes. Sometimes it's good to have more
open coffee and discussions sessions after the formal presentation
to get the informal support that people need.
Expert presentations can cover a variety of issues that are of
concern to patients. The support groups within HEP have had experts
talk about treatments, research projects, virology, insurance
issues, disability law, naturopathic medicine, acupuncture, living
with chronic illness, diet and exercise, etc. And attendance is
usually good if there's an expert on hand - people like to hear
from these folks.
Most experts will do these talks free, at least once. However,
the more often that you use professionals in your support groups,
the more likely that costs are going to become an issue. In groups
where professional facilitators are routinely used, the group has
usually found a source of financial support, either a hospital,
drug company, or other benefactor who is willing to pick the costs
of an honorarium or other compensation for a least the expert's
travel time and sometimes an hourly charge. You can just charge for
the meeting to cover the costs, but that will usually cut down on
attendance - many chronic hepatitis patients can't handle much in
the way of fees.
In rural or more remote areas, experts are harder to find or may
even be unavailable, and travel and transportation often become a
much larger issue. In these cases, printed literature, videotapes,
medical libraries, and email or Internet access can sometimes be
used to provide expert information at a reasonable cost. Many of
the organizations listed at the end of this paper provide
videotapes that can help. And much information is now available
over the Internet, which can be very useful. However, there is a
caveat of information on Internet sources - they are not verified
in any systematic way, and you must be careful in using such
sources to check that the information obtained is accurate and
relevant before disseminating it to your support group.
But whether or not you use experts and facilitators, it's very
important to allow time for people to mingle, network, and talk
about their current situation, what their symptoms are, what their
doctor said, how high their lab test results are, and all the
critical minutiae that help patients to feel that their issues are
being heard by other sympathetic human beings. Many of our patients
are very worried about their situation, they need to hear from
others and they need to express their worry and concern in a
sympathetic environment, and they need to get new information if
any is available. So having that chance to circulate, talk and
listen, and carry something away is a very critical component of a
successful support group.
At this point, decide what your first meeting is going to be
like.
Step 3
Find a place and set up a regular
time.
Okay, so you have formed your core group and done some figuring
about how your support group is going to work. It's time now to set
up your first meeting, decide on a place and time for it and get
the word out. Fortunately, places to meet are pretty easy to find
for most of us, and they usually don't cost anything either. There
are lots of businesses, medical facilities, educational
institutions and churches that routinely loan space to patient
groups free of charge for evening meeting. Contact your local
organizations to see what might be available.
You can always meet at someone's house if they're willing. We
tend not to recommend that, because we like to have monthly
meetings at the same place and time every month, and the person
whose house is getting used can get quite overloaded with providing
hospitality for meetings. There are also the questions of
vacations, trips out of town, etc. which can adversely impact the
schedule. And the group may outgrow the home as it gets larger. But
in a pinch the family home solution can work, particularly for
smaller groups in rural areas where institutional solutions are not
as available.
Medical organizations such as hospitals and clinics can be picky
about who meets in their space, particularly if the are asked to
officially sponsor the group. They may require a licensed
therapist, or a non-profit organization status, or some other
verification of your identity, qualifications and intentions. This
is done usually for liability reasons, because they don't want
anyone treating them as the provider of the information that is
dispensed. But if you only want to borrow the space and don't want
their endorsement, they're usually quite reasonable. It's usually
better to avoid asking for official endorsement in the early stages
of a support group, unless you're particularly well connected to
the medical community. But if you can get official endorsement,
that often helps with free publicity and makes physicians more
likely to recommend your group.
When selecting a space, you need to look at the factors that
will tend to influence whether people will come to your meeting or
not. Is the meeting place convenient, does it have free parking, is
it easy to find, is the distance from the parking to the meeting
place reasonable for people who are disabled or aren't physically
strong? Is the area safe, is it well-lit, is there sufficient
security for the attendees? All of these factors can influence
attendance. It's important to check out the space ahead of time
before deciding to use it - changing meeting locations always
creates confusion, so it's better to be sure you can use it before
committing.
As to the space itself, you want a room that has the amenities
that are required for your group, or you need to be able to bring
them. You may need a podium, a screen, overhead projector, slide
projector, television and VCR, or computer system for some
presentations. Or you may just want a comfortable quiet room for
informal conversation, with chairs that can be arranged in a circle
for a more casual atmosphere. It's better if the space is not too
large to start with, since early group meetings tend to be small -
you don't want to make people feel like they're in a huge barn.
Having food nearby can be helpful. Some groups get rooms near a
hospital cafeteria, for example, as people can get refreshments
easily. If no food is nearby, at least an outlet or two for coffee
machines is helpful.
Try to get a commitment to use the room on a regular basis, at
whatever interval you've decided to meet. Many groups have monthly
meetings, but others prefer semi-monthly or even weekly if there
enough need. It's good to have a regular meeting time known in
advance, so you can put out flyers and people can get the regular
meetings on their calendars well in advance. For your first
meeting, be sure to leave yourself enough time to get the
arrangements made and get the word out.
The time of day is important too. Most people would rather meet
in the evenings after work. Give people enough time to leave work,
travel to the meeting and get any food they need before the meeting
starts. We've found that 7pm to 9pm is a pretty good slot, but
others can work too. Weekends are usually not too popular - people
want their time off to be uninterrupted. But things like workshops
can go well on the weekends.
Step 4
Get the word out.
In previous steps, you've selected a time and place and lined up
a speaker and lined up any information you're going to hand out and
the resources you'll need for the meeting. Now it's time to get the
word out to everyone. Hopefully you've been keeping some lists of
contact people as you went through the previous steps. You've
compiled a list of local medical personnel with interest in
hepatitis. Some you may have contacted individually and told about
your efforts. Others will be new to you. You may also have a list
of patients that you've compiled over time. Now it the time to get
in touch with these people, let them know about your group, and ask
them to help you advertise it and reach the patients who need the
support.
Call your patient list individually and let them know about the
meeting. Get notices into as many publications as you can.
Hospitals and medical centers often publish newsletters that can
carry a notice of your meeting. Your local department of public
health may also publish one - their readership often has an
interest in hepatitis and will spread the word and join up. Blood
banks, hemophiliac support groups, and narcotics treatment centers
also see a large number of hepatitis patients - they should know
about your group.
Notices in the regular newspaper can be effective, especially if
the newspaper has a special section for medical support groups. You
might try contacting the health editor of your local paper - there
might be some possibility of getting a brief mention in a column
which would reach a broader audience. An alternative is a flyer or
specific notice about your meeting. There are lots of home
computers around now that can print up cheap and effective flyers
using desktop publishing programs. You can post these in clinics or
doctor's offices throughout your local area.
Within the Pacific Northwest, HEP circulates our own newsletter
to doctor's offices and use that to advertise all of our support
groups. There's a page in the newsletter that lists them all and
gives locations, dates, and times. That's been effective in getting
the word out about our meetings. We also have a brochure that we
use for the same purpose. It gives a brief description of hepatitis
and the issues for patients, then lets the patient know that there
is a support group in their area. We leave a blank box in the
middle of the brochure for you to put your name, phone number and
any information about the meeting.
You can order copies of that brochure from us, fill in the
information about your support group, and send the brochure to
local physicians, clinics, medical centers and others on your
mailing list. They can then hand the brochure to patients to let
them know about your meetings.
Step 5
Holding the meetings - persist and
grow.
After all this preparation, the first meeting will likely go
very smoothly. Be sure to collect the names of everyone who attends
and get addresses and phone numbers. Having a handout is good too,
with a list of resource groups for people. Our list of hepatitis
organization can be used, or any similar list. It helps people to
know that there are resources out there and they're not alone.
When the first meeting is over, sit down, review the situation
and decide how to go forward. What was particularly successful
about the first meeting? What fell short of your expectations? How
will your next meeting be organized? Is there anything you can
learn from this first one? Should you publicize differently? Use a
different format? Organize in a different way? Everything you're
doing should be reviewed based on this new experience.
Don't be too discouraged if the initial turnout isn't as large
as you hoped. In our experience it takes time for a support group
to take root and begin to grow large turnouts consistently month
after month. Initial meetings can be poorly attended, but as word
spreads and as people get to know your group the turnout will
increase. It's important to stay with it. Remember that there is a
tremendous need out there, but most hepatitis patients have few
sources of information and it will take time for them to find you.
Don't give up.
And be sure to let others know about your group. Plug into the
national hepatitis groups. Subscribe to the newsletters of other
groups, and get yourself on the email lists and world wide web
sites that advertise hepatitis support groups. You'd be surprised
how many people learn about your group from sources like that.
Finally, once you're an experienced veteran of support group
formation, don't forget to help others in your area and elsewhere
to set up their own groups. The need is enormous all over the
country, so help others to get started. Remember how you felt when
you began, and reach out to others who are just beginning.
Future Plans
As the group grows, you may need to make some decisions about
how to organize it more formally. Several options are available to
you. You can take a very formal approach, incorporate as a
non-profit corporation in your state, and seek tax-exempt status
and donations from large companies or foundations to support your
work. You can ally yourself with another organization in your area
which has tax-exempt status. You can set yourself up as a chapter
of another organization - several national hepatitis organizations
are seeking to form local chapters and will work with you to do
that. Or you can just keep your informal arrangements going.
A lot depends on whether you want to seek grants or other
support from foundations or charitable organizations in your area
or nationally. Granting agencies will want to formal declared
tax-exempt status for your organization before they will fund it.
You will need to incorporate, get a tax ID number, and file
paperwork with the IRS to gain tax-exempt status under section
501(c)3 of the Internal Revenue Code. All of this takes time and
money. It often can take a year or more to get all this set up, so
it's a considerable undertaking, and should not be done lightly.
However, it does give you substantial advantages when dealing with
physicians, hospitals, charitable organizations, corporations,
foundations or other large granting agencies. They can routinely
make small grants to your organization once they know it has
achieved formal tax exemption.
So best of luck with your efforts. Please keep us informed about
your work and what's happening. And if you have any comments on our
handbook or suggestions for revisions, we'd love to hear them. Let
us know if it was useful, what you found helpful, and what didn't
work. Contact us at our regular mail address, by email, or by phone
(see below).
- Snail Mail Address:
Hepatitis Education Project
PO Box 95162
Seattle, WA 98145-2162
- Phone (you can leave a message): 1-800-218-6932
- Email: hep@scn.org
- HEP also has a website at http://www.scn.org/health/hepatitis
Note from the webmaster: You can notify me when you
have your support group in place and I will put the information on
my website. My email address is hepcprimer@attbi.com
©1996, 1997 - Copyright Hepatitis Education Project
The Handbook can be downloaded, printed, or copied as long as it is
for personal use or non-commercial purposes.
We're always looking for ways to improve the brochure. Do you
have any comments? Any suggestions for improvements? Email the
author, Steve Graham, at graham@wolfenet.com.
HEPATITIS ORGANIZATIONS AND RESOURCES
Here's a list of hepatitis organizations with information that
you could find useful. Please contact these organizations to help
you set up your group, and keep in contact with them as the group
continues. We all need to stick together.
Hepatitis Education Project
P O Box 95162
Seattle, WA 98145-2162
1-800-218-6932 (message phone)
hep@scn.org(Internet email]
http://www.scn.org/health/hepatitis[World
Wide Web Site]
Hepatitis Foundation International
30 Sunrise Terrace
Cedar Grove, NJ 07009
1-800-891-0707
Call for their special packet on support group formation
The HEP C Connection
1714 Poplar Street
Denver, CO 80220
303-393-9395
hepc-connection@worldnet.att.net(Internet
email]
Hepatitis C Foundation
1502 Russett Drive
Warminster, PA 18974
215-672-2606
215-672-1518 (fax)
HEPATITIS_C_FOUNDATION@msn.com
(Internet email)
American Liver Foundation
1425 Pompton Ave
Cedar Grove, NJ 07009
1-800-223-0179
http://sadieo.ucsf.edu/alf/alffinal/homepagealf.html
(World Wide Web Site)
HEPV-L - A hepatitis email list. To get on this list, send email
to
listserv@maelstrom.stjohns.edu
with the message
subscribe HEPV-L [your name]
Be warned - this is a very lively email list - over 100 messages
per day
Schering Corporation - Interferon manufacturer - drug info
Commitment to Care line
Phone: 1-800-521-7157
Reimbursement info, drug resource programs, patient
information
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