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Support Group Leader Summit 2012 - A Mixer and Mentoring



Our longtime facilitator Alan Kumamoto asked each of the support group leaders to stand up, give their support group name and how long it has been around, what their role is (patient, caregiver, social worker) and provide a tip or challenge.

The leaders who spoke are nurses, patients, caregivers, social workers. Their tips and challenges resonated in the room:

    • Some groups have more caregivers than patients. Many of the caregivers are women whose husbands, the patients, refuse to attend. How do we get the patients to attend?
    • We have the problem that people stop coming because it is depressing. We seem to be focusing too much on the medical.
    • How do you keep folks coming without having speakers? 
    • Member loss.
    • Seasonal attendance.
    • People leaving when they feel better
    • Growing the group. Getting more people to come.

    • Alternate scheduled speakers with meetings that provide time to talk.
    • Followup email after every meeting sent to all members, those who attended and those who didn't.
    • Introduce topics other than myeloma to talk about. Address the whole person, by understanding that they have different interests and cultural backgrounds.
    • Really embrace people who come, and they will come back.
    • Communicate between meetings.
    • Meet with a member every month.
    • Food!
    • Understand is that touching even one person is important

    • How do we handle one person who is always dominating the conversation, contradicting the speaker, quoting stats that really aren't relevant.
    • Some groups have speakers regularly, but it can be overwhelming to get speakers all the time. 
    • How do you get people who attend the meetings to share responsibility for activies? Silence when we ask for volunteers.yvonne_sglsummit.jpg
    • How to find fresh ideas to keep people interested.
    • Leader burnout.
    • Communication with members who do and don't attend.
    • How to increase participation in clinical trials among African Americans.
    • How to help caregivers who have lost their spouses.
    • When a leader leaves or dies, how do we rebuild the group from the ground up?

    • Help the members connect with each other by passing around a sign in sheet at the start the meeting after they have sat down. That way, when they ask who was sitting to their left, you can look at the sheet to help with the identification.
    • Have more experienced members help explain topics to new people.
    • Check in and ask for a brief update about what has been happening in the last month.
    • Have rules and enforce them, including respecting other people's opinions without criticism.
    • Use travel themes as a metaphor to help people see it as a journey and know that there is hope for a cure just beyond the horizon.
    • Remember that you are serving the group. Ask members what they want.
    • Have a Board of Directors who have clear responsibilities.
    • Play a piece of music when there is loss--something the patient liked. Invite their caregivers to stay with the group as long as they want.
    • Explain that you are not a doctor; that no one in the group is a doctor (unless one is) and that any medical issues discussed do not replace speaking with a doctor.
    • Try to make sure new people are speaking and leave each meeting with steps to do.
    Then the leaders were charged with discussing these challenges among themselves and trying to come up plans to overcome them. I have the reports and will post them soon.


    First time my group is being led by someone else....he is quieter than I am. what can I do to help him, besides the obvious things. Joyce Schultz

    WOW. I'm just starting a support group in Polk County, Florida. First meeting is Oct.11th. After reading all the above i am even more frightened as to my ability to handle this. Sure is an awlful lot to remember.

    George, you don't have to do it all or remember it all. Just get started and do what you can. It will get easier over time. Try to get others to pitch in, but I'll warn you that the biggest complaint among the group leaders is not being able to get others to help.

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