How To Develop an Online Support Group or Web Site
by Ed Madara
Because of the Dotcom bust in 2001, there are fewer online services
that provide free mailing lists or message boards. Many of the surviving
online service providers, who previously provided free community sites, now
charge fees. Yet there are still a few free services available at this time.
E-mail discussion groups are the most popular. For developing your
own free e-mail discussion group, free ad-supported services are currently still
available from Yahoo (http://groups.yahoo.com/group)
and Topica Exchange (www.topica.com).
You just answer their questions, as you create the type of mailing list group
you want to have: "open" so anyone can join, "restricted" where you approve
each membership, etc.. Of possible interest to community group leaders is that
both Yahoo and Topica have an option for making your list a one-way e-mail newsletter.
Below we explain in detail how to set up a Yahoo mailing list.
Free chat rooms are still available at Yahoo.com (click on "create
a room" after entering) and www.parachat.com.
But like anything "free" on the Net these days, you have to put up with multiple
ads that make these "free" online service possible.
The options for obtaining a free message board are more limited.
Delphi Forums (www.delphiforums.com)
and MSN Clubs (http://groups.msn.com/home)
currently still provide free message boards but with multiple banner and pop-up
ads. For access without ads, you would have to pay for their "Plus" membership
which is sixty dollars a year. Another alternative is to consider approaching
any existing web site that deals with your condition. Then ask the webmaster
if he or she would be willing to add a message board.
For building a free website (but with a variety of banner and possible
pop-up ads), there's still Angelfire (www.angelfire.com).
If you are seeking a free online website for your local self-help group, check
if any of the daily newspapers in your area are providing free online community
group web pages. Some newspaper syndicates provide free web pages, in exchange
for having ads in one section of the screen. If available, they are usually
easily built, using templates. But if you do develop any website, remember that
simply having a website doesn't automatically result in referrals. The number
of referrals you get will depend upon how many other websites list yours. This
means you should be contacting other websites related to your concern and asking
them if they would create a link to your site.
For an update on free websites and chat rooms, go to The Free Site
(www.thefreesite.com). Also see any
applicable links at Network for Good (www.networkforgood.org/npo).
For more detailed information on developing an online group, visit Dr. Grohol's
"Starting a New Online Support Group" which he periodically updates at:
http://psychcentral.com/howto.htm.
If you are interested in developing an online group for a particular condition
that is not yet available online, contact our Clearinghouse for additional ideas
(ed@self-helpgroups.org).
Before you start an online group, you should be sure that there isn't
already a good existing online group. Before we review how to do that, here's
a quick overview of what it will take for you to create an online mailing
list at Yahoo.com.
To Start a Free Online E-mail Discussion Group at Yahoo
Begin by going to http://groups.yahoo.com/group.
You'll need to first register with Yahoo, before you can join or create any Yahoo Group. To do that, click on "New Users 'Click Here to Register'"
on the left side side of the screen. Create a Yahoo user name for yourself
and a password, and give your e-mail address. You will be using his same
"user name" and password each time you want to make any revisions to your
online group and most times when you want to post a message.
When you are ready, click on "Start a New Group!" But consider
fully reading this over first, so you know what you will need to supply.
You may also want to first check out some existing Yahoo groups to see how
they are set up.
You will be taken to Step 1: Choose a category.
You will be first asked to select a category for your group from their listing, e.g. "Health & Wellness".
Then at least one sub-section, e.g., "Support". At the next page,
if you don't want to click on an additional "sub-sub-section," just click
on the yellow "Place my group in category you picked" box on the right.
Step 2: Name & Describe Your Group
1. Pick a full name for your group. Can be several words (up to 40 characters, to include blanks).
2. Pick a name for the e-mail address for your group. But
understand that this will be the primary name people will see for your group.
It will also be added to the end of the Yahoo group address as the website
for your online group, i.e., http://groups.yahoo.com/group/name_you_choose_here
3. Describe the purpose of the group. Remember to include keywords that will help people find your group if they search the Yahoo group directory.
4. Select language, e.g. English.
5. Click whether or not you want it be publicly listed in the Yahoo Directory
6. Select the type of membership:
- Open - anyone can join it.
- Restricted - people can apply, but their membership is subject to your approval.
- Closed - only persons, whom you invite, can join.
7. Select the type of moderation you want:
- Unmoderated - members can post messages freely to the list.
- Moderated - You must approve each and every message
written by other members before it is sent on to other members. (Remember
that if you choose "unmoderated," you as "owner" still have the option to
ban any member from the list for any appropriate reason).
- Newletter - One-way communication; only you can send messages to others.
8. Agree to the "Yahoo Terms of Service."
Step 3: Your Yahoo Profile, and E-mail Address to Receive Messages
1. Your Yahoo Name/Profile - your Yahoo name (when you registered with Yahoo) will probably automatically appear in this box.
2. Your e-mail address, to which the group messages or inquiries will
be sent to you as the owner, should also automatically appear here.
Step 4: Invite People to Your Group (an optional step)
1. Here you can invite up to 50 people by e-mail to be in your group. But this step is optional (you can do it later). If you want to skip this last step, just click on "Click this Step" at bottom.
2. You can write a welcome message to be sent to them.
3. Leave "Send invitations to members" checked. Other option is to subscribe members directly.
4. Finally, click on "Send Invitations" box at bottom left.
Now you are finished. You can now click to view your "group page."
You can give this website address out to promote your online group. On this
page at any time in the future, you can make revisions to to the above choices,
add photos, bookmarks (links), files, etc., by clicking on "Group Settings."
You may want to advise potential members that when they register for
any Yahoo group, there are 3 different ways they can receive messages:
1. Individual emails. You will get individual email messages.
2. Daily digest. Many emails are sent daily to you in one message.
3. No email. You'll receive no email, but can read all the messages at the Yahoo website for your group.
FINDING OUT ABOUT EXISTING ONLINE GROUPS
As reflected in the group descriptions that we provide here in the Sourcebook database, all the established national and international self-help group organizations
have developed their own websites. Many of these sites provide interactive
message boards or e-mail discussion groups, chat rooms, and links to other
helpful sites that deal with their particular issue. So the websites of the
face-to-face self-help groups would be one good place to start to check for
an online discussion group. If the national self-help organization doesn't
have a message board or an e-mail discussion group displayed at their website,
send them an e-mail, asking if they know of any good online groups that exist.
You can also begin with a search at Google.com. Click on
their "Advance Search" and in the top box type in the problem or concern,
then in the "exact phrase" box, type "support group" or "support network."
But understand that Google.com will not give you all the groups. There are
a significant number of online support groups that will not show up, to include
many of those groups that operate as an e-mail discussion group or listserv.
A second search engine is the Open Directory Project at http://dmoz.org
which can be similarly searched. You will find supports groups under "Health,"
"Health Mental Health," and "Society." They also break out website by language.
For websites loosely linked together around particular issues, search at
WebRing.org. Also, SupportPath.com
provides links to online message board, mailing lists and newsgroups around
some 300 illnesses and other problems.
Another way to find an existing online support group is to visit the
any of the following websites that may deal with your concern. They will
either have, or refer you to, multiple mailing lists or message boards for
particular issues.
For mental health groups - PsychCentral.com at http://psychcentral.com/resources
for a comprehensive listing by subject. This database is maintained by Dr. John
Grohol, who is a pioneer in the identification and development of online resources
for mental health.
For specific neurological disorders - BrainTalk (www.braintalk.org).
There are over two hundred message boards. Chat rooms also available. Previously
known as the Neurology Web Forums at Massachusetts General Hospital, pioneered
by John Lester Similar neurology-related message boards are available on Med
Help International in the Cleveland Clinic Neurology Forum (http://medhelp.org)
hosted there.
For specific cancer groups - Association of Cancer Online Resources
(www.acor.org) is a non-profit patient/family-run
organization that has over 130 e-mail discussion groups related to different
forms of cancer and non-malignant tumors, both for patients and many for caregivers.
They also help those seeking to start and run a needed new online support group
for any type of cancer or tumor disorder for which there is no existing online
group.
For specific 12-step and other online recovery groups - Online Recovery
www.onlinerecovery.org lists hundreds
of online recovery groups and websites dealing with a wide range of issues including
addictions, mental health issues, survivors of abuse, and others.
For parents groups - Parents Place - www.parentsplace.com/messageboards.
Has numerous message boards for specific parenting problems, issues and concerns.
For older adults - SeniorNet www.seniornet.org provides older
adults with access to and education about computers. They also have discussions
and chat rooms on dozens of different topics of interest to older adults.
For health issues, the larger sites have different illness and health
issue boards/forums. Consider checking www.MedHelp.org
(has free Patient-to-Patient Network networking patients with same condition),
www.boards.webmd.com, and www.drkoop.com.
For other issues, www.clubs.lycos.com,
and EZBoards' ww.forumfind.com.
If you decide you want to search Newsgroups, good starting sites are
http://groups.google.com (where you
can search all past Newsgroups messages - especially helpful for identifying
discussion of a rare disorder) and www.ibiblio.org/usenet-i/search.
WHAT TO LOOK FOR IN A GOOD ONLINE GROUP
The quality of online groups varies greatly, much more than community
self-help groups. Whether you are looking at an existing online group, or
thinking of starting one of your own, here are some of the characteristics
of a good online self-help group that you can either look for, or work to
develop.
The first indicator is to see if it's alive, i.e., utilized and vibrant.
It's easy for anyone to hang out a shingle saying that there is an online
support group, when in fact there is little or no activity. So look for a
fair number of people and recent postings. Just as in a community group,
the life of an online group depends on the continued participation of people
who have found it helpful. A good number of participants also helps to correct
misinformation. But take into account that with rare disorders and concerns,
the membership and message volume will often be naturally low.
Message volume alone doesn't indicate quality. So, look to see if people are actually helping one another?
Beware of "pity party" discussion groups, where people mostly complain, but
there's "no recovery" to be found. Are questions and requests for help answered
by different members, who share their positive experiences, strengths and
hopes? Or is just one person doing all the helping? Look for the multiple
ideas and collective wisdom of a "support group," not just a "support person."
Is the environment non-judgmental and caring? In viewing
the messages, does it feel like a safe and welcoming place? Look for tolerance
of different opinions and feelings, as well as ground rules that prohibit
negative behavior like "flaming" (the use of abusive language used to demean
a person or their idea).
After you have had an opportunity to view messages and participate, do you feel a sense of community?
Online self-help groups, run by and for people who share the same experience,
provide an understanding ear that no one else in the world can provide. Newcomers
often report that they feel an also instant sense of belonging. This is one
reason that many people stay active in the group, helping others, after being
helped. For some groups, professionals may also be available at online group
sites as helpful resource people (online it's not unusual to see them as
"guest speakers" for a full week). But it is important that they not dominate
or take over the self-help group.
Self-Help groups are non-proprietary. Therefore, be sure
that the online group has no explicit or hidden agenda of selling products
or services. Some self-help groups may use a free online service that has
general ads, e.g., Yahoo e-mail groups, which is normal and to be expected.
But be beware of any groups or online sites that encourage purchases, especially
of a quick-cure product.
Ultimately, the key to a good online self-help group is whether it meets your needs.
There are a variety of groups available that have different values and personalities.
A good group should match your needs and values.
Online networks provide individuals worldwide with the peer support,
understanding, and information they seek. Some online groups also do a good
job in promoting needed and timely advocacy efforts. The Internet overcomes
barriers of distance, time, and disability. Overall, the Internet will continue
to help expand mutual help networks to better meet people's needs and improve
the overall quality of our lives.
There is a tremendous satisfaction in being able to help others on this walk through hell."
- Dolly Campbell (who founded the "CDJ Voice" website and mailing
list shortly after her husband's death from the untreatable disease)
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