The HEP Support Group Handbook

The HEP Support Group Handbook



Prepared by

The Hepatitis Education Project

October 1996


The HEP Support Group Handbook

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 own 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 back page) 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 word that you're trying to start a support group - ask if they know of any other patients or medical professionals that might be interested. By law they cannot directly give you the names 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 word that a support group is 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 - i.e., act as a guardian angel and advocate with other professionals. 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'd 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 specializes 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 folks 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 use 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 to 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 also will 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 FORMAT

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 dicussion to range over all the topics that the members want to address and everybody gets to talk. Facilitated groups are more concentrated and orderly, but pressing issues for certain individuals may be missed if they're 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 discussion 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, you name it. 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 up the costs of an honorarium or other compensation for at 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 are disabled or low income and 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 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. Select a facilitator or expert speaker if necessary, line up any resources you'll need such as handouts and documentation. Think about your requirements for audio-visual equipment, refreshments - all the details of the meeting. Then decide what kind of space you'll need for a meeting like that. Then move to step 3 to finalize the arrangements.

STEP 3 - FIND A PLACE AND SET UP A REGULAR TIME

OK, 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 meetings. 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's also the question 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 they 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 in 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 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 not physically strong? Is the area safe, is it well-lit, is there sufficient security for the attendees? All of these factors can effect 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, so 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's 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 ne ed 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 previous steps. You've compiled a list of local medical personnel with an 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 is 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 our own area, the Pacific Northwest, we circulate our HEP 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 organizations 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 this 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 disappointed 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 draw large turnouts consistently month after month. Initial meetings can be poorly attended, but as the 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 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 wil l 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 a 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.

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
4603 Aurora Ave. North
Seattle, WA 98103
206-732-0311(message phone) or 206-732-0312 (FAX)
hep@scn.org
http://www.scn.org/health/hepatitis

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

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
ALF Homepage

HEPV-L - THE hepatitis email list
To get on this list, send email to
LISTSERV@MAELSTROM.STJOHNS.EDU
With the message: subscribe HEPV-L (your name), e.g. subscribe john doe
Be warned - this is a very lively email list - over 100 messages per day

Schering Corporation - Interferon manufacturer - drug info
Commitment to Care line
1-800-521-7157
Reimbursement info, drug resource programs, patient information

HEP Support Group Handbook October 1996