National Association of Hepatitis Task Forces:
Tools: Starting A Support Group
Support groups provide a support system among people with common
experiences. These groups run by the members,
meet to share common happenings, knowledge, strengths, and hopes. The
following guidelines to assist people
interested in starting their own Hepatitis support group.
Talk with others who have successfully started support groups. Discuss
what methods worked best for them and
problems they encountered to help you avoid having similar troubles.
Collect a list of healthcare professionals interested in Hepatitis C and
Co-infection. Call physicians, social
workers, hospitals and public health workers and ask their help. These
people can help you reach other hepatitis
patients interested in attending a support group. Create a flier with your
name, phone number, and date of your
meeting, so they can give it to interested people.
Obtain a free, neutral meeting place. Try a community center, an
YMCA/YWCA, library, church, or other public
building with wheelchair access.
Decide when and how frequently you want to meet. Weeknights or evenings
are usually best, and holding meetings
the same night each month is suggested.
Decide if the group wants snacks or food available and pass a hat to
these cost if needed or obtain a sponsor.
Publicity is important to your success. Place fliers in hospitals,
doctors' offices, the Health Department,
community centers, place a notice or ad in a local paper.
Structure your first meeting to allow time to discuss what the members
would like from the group. Shared leadership
is easier than doing it all on your own. Each meeting should have an
educational component, a time for business and
sharing concerns, and setting a date for the next meeting.
Discuss what members feel the group's responsibility to
each other is. Address the issue of confidentiality such as things
at the meetings remains within the group
unless someone is suicidal or threatening others.
Groups may be formal or informal. It is suggested to have written
to give to new members, including the
group's purpose, meeting times, an explanation of how meetings are
conducted, the groups policy on confidentiality,
and contact names to call with questions or concerns.
Ask members to provide their name, address, phone number, and any skills
they feel they can contribute to the group: publicity, printing, and
organization, recruiting speakers, gathering information. Respect their
right to privacy should
they wish to not wish to give contact information.
Meetings should have a structure so they don't wander off course.
Frequently members introduce themselves and state
their reason for joining the group or share an experience. Don't let one
two people dominate the group meeting and facilitators need to check
themselves if they talk too much.
Speakers on a variety of topics of interest, hepatologists,
and nurses make the meetings interesting. Discussions may include diet,
treatment, exercise, and medical tests, dealing with insurance companies
It is good to have a health care professional attend meetings for at least
portion of the time. Speakers from the
outside and medical world usually speak for 20 to 30 minutes and then
for the personal sharing of the group.