Frequently Asked Questions
How often should we meet?
It is up to you! Consult with your planning committee to decide what is best for your group and be sure to coordinate with your medical advisor too. Typically we recommend meeting 2-4 times per year. Most groups meet once every three to six months.
What should I expect the average attendance of each meeting to be?
The number of members involved in your group is unpredictable and will fluctuate. Providing support to even one person should be considered a success! On average, anywhere from 5-20 individuals will attend a meeting. CARF Connects Patient Networking Groups generally have 3-7 people in attendance. It’s a good idea to plan for more, but don’t be discouraged by a smaller turnout.
How do new members hear about our group?
Here’s where your planning can get creative! Set up your meeting dates for a full year so members can plan ahead. The CARF office will send emails to members in your area and post on the website and Facebook page to promote awareness. If you have a medical advisor or relationship with your dermatologists, ask if they are willing to post information about your meetings in their offices. Hairdressers are great networking sources, as are local wig shops.
How do you announce your meetings?
Once a core group has been established, each meeting can be announced via phone calls, email, or mailings. Email contacts, website and Facebook postings have been found to be most efficient and is, of course, inexpensive compared to postal mailings. It is best to allow at least three weeks between notification and the actual meeting so that people can plan accordingly. You will find that people will make changes in their schedules to attend group meetings! Please remember to use the “bcc” feature when sending emails to maintain meeting attendee privacy.
How do you maintain a positive vibe at the meetings?
It’s important to keep a sense of humor. If your group is established with a human tone, with laughs more common than tears, members will feel more comfortable and will be more willing to open up. Some specific tips include having speakers on self-esteem and confidence building.
How should you avoid or deal with negative situations?
Make your group meeting a comfortable experience. Incorporate brainstorming into your meetings so that everyone’s voice is heard at each meeting. Have the ability to change the subject quickly and have the resources available to put a positive spin on a compromising topic. Remember to stress that all are entitled to their own opinions; the purpose of the group is to share experiences, offer supportive comments, and not feel judged.
How should I divide the responsibility within the group?
It is important to get the feel of your group before you delegate responsibility. Once the group has formed, you will find that certain members will gravitate to certain responsibilities, depending on their desire to help and their resources. Some groups find it most effective to have only a couple of members carry most of the load. Know your group and their capacities before you make any assumptions about their roles.
How are medical issues handled during meetings?
General medical questions can be answered by the medical advisor. Tell the group that it is not possible to give advice to individuals and they need to keep their questions of general interest to everyone. If it’s a CARF Connects group, please remind attendees that medical questions can be posted to the Ask a Doc feature on CARF’s website.
How do you structure your meetings to include emotional support?
This is where the power of group brainstorming is often helpful. Cover all the topics dear to the members of the group. Allow yourself to be available for a one-on-one conversation with individuals in your group outside of the meeting, or refer them to one of CARF’s Patient Outreach Volunteers.ost them to the Ask the Doctor section of the CARF website.