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 cover 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 discussed 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 policies 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 or 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, nutritionists, and nurses make the meetings interesting. Discussions may include diet, treatment, exercise, and medical tests, dealing with insurance companies or employers. It is good to have a health care professional attend meetings for at least a portion of the time. Speakers from the outside and medical world usually speak for 20 to 30 minutes and then leave for the personal sharing of the group.