COMMUNITY SUPPORT GROUP OVERVIEW

Purpose:

1 in 10 Americans are afflicted with some form of 100 liver-related diseases. The objective of the Illinois Chapter of the American Liver Foundation (ALF) is to provide a future where the threat of liver disease is greatly diminished; where effective treatments exist; where no one dies waiting for a liver transplant. In addition to brochures, fact sheets and newsletters, the Illinois Chapter offers monthly Network Meetings as a venue to educate patients and their families about liver diseases including research and clinical studies progress. The Network Meetings also incorporate an open discussion segment and a question/answer session so the participants can learn from the medical professionals as well as each other. It is now time for us to extend this commitment and provide a forum for those suffering from liver diseases, and their friends and families, to meet and discuss the emotional aspects associated with the diseases, treatments, side effects and research progress.

Theory:

Support groups empower patients and their families. Participants gain increased knowledge from medical professionals and other patients. They develop and improve coping skills. They gain increased confidence and acceptance of their liver disease through the knowledge that they share a common struggle. Finally, patients and their families gain support. Because of the stigma attached to some liver diseases, patients may feel isolated and reluctant to disclose their health status to those around them. Support groups provide a "safe" and supportive environment for patients and families to deal with the impact of their liver disease.

Logistics:

Each newly established community support group would meet on a monthly basis.

Meeting days: At the discretion of the facilitator and coordinator, usually on a weekday evening. Date and time can be periodically evaluated to ensure it remains viable.

Meeting times: Generally for 1 ½ hrs, in the timeframe of 6:00pm to 9:00pm.

Location: Centrally and conveniently located, handicapped-accessible room, to best serve the largest number of individuals in a community and surrounding areas. It should be near public transportation and/or offer sufficient parking. The neighborhood should be considered safe after dark. Preferably a location that provides free access to not-for-profit organizations.

Suggested locations: School Common Rooms, Medical Center Meeting Rooms, Public Libraries, Town Halls, YMCA's, etc.

Amenities: Audio/visual equipment, (if needed).

Participants:

It is at the discretion of the group whether or not the group is for patients only, patients and family members only, or patients, families and friends.
 
 
 
 
 
 

The number of people attending the support group meetings are determined by several factors, including:

• interest of hepatitis/liver disease;
• type of meeting as designed by the group, i.e., will it be small group interpersonal interaction, or will there be educational speakers with general discussion;
• size of the meeting space, (if the group grows to a size that is too large for the meeting space, an additional meeting night or relocating to a larger space may be considered).

Coordinator

• Responsibilities: coordinate meeting logistics, send meeting notices, keep the group informed of any scheduling changes, publicize the meetings, sign confidential questionnaire with confidentiality statement, distribute and track evaluation forms, serve as liaison between the group and the Illinois Chapter.

• Responsibilities: possess training and/or similar experience in facilitation, sign confidential questionnaire with confidentiality statement, guide discussion, create a positive atmosphere, recommend referrals when necessary to a psychiatrist, personal therapy or a grief group, serve as liaison between the group and the Illinois Chapter.

Guidelines:

• Non-prescriptive

• Facilitated

• Under medical advisory

• Establish and maintain a relationship with the medical community. Inform local gastroenterologists, hepatologists, and the social service and nursing departments of your local hospitals about your group. They may be able to steer patients in your direction.

• Alert the local media. Community newspapers and cable TV networks will often provide "Community Calendar" columns/channels as a public service. Take advantage of these opportunities.

• Post the information in places where patients go as people, not as patients. Ask local businesses such s supermarkets, laundromats, coffee shops, bookstores, mall information stations, etc. if you can post a flyer advertising the group.

• The Chapter will send meeting notices to members in their database in your location.

• The Chapter will provide samples of letters to physicians, professional press releases, and flyers.

Support group start-up costs are generally minimal (i.e. printing, postage, refreshments and possible professional facilitators and advertising). The Chapter will provide nominal start-up funds to help defray these costs.

After Six Months:

Naturally, the Chapter is available to help you every step of the way and regular contact will be maintained with the Coordinator and Facilitator to ensure a smooth meeting. We are here to offer advice, answer questions, make recommendations or serve as a sounding board for ideas. Each quarter we will host a Coordinator/Facilitator meeting for open discussion on group dynamics across the board. Whether you're an expert or novice, this optional session will give you an opportunity to learn from others and share your knowledge.

Each month the evaluation forms will be reviewed and tallied. After six months a history will have been established and it will be time to discuss maintaining the good elements and revisiting any areas that may need improvement.