Thoughts of a Veteran Support Group Leader
Mary Buck, a retired physical therapist, has been with the Stroke Support Association of Long Beach, California, for 30 years. We talked with her about what works and what doesn’t when starting and maintaining a support group.
Mary Buck, a retired physical therapist, has been with the Stroke Support Association of Long Beach, California, for 30 years. For 10 years she functioned as director of the association and for the next 10 years she was coordinator of groups. Currently, she meets with the groups on an as-needed basis. We talked with her about what works and what doesn’t when starting and maintaining a support group.
Despite the natural impulse to want the group to be as large as possible, it’s always best to limit it to 12-15 participants. “Any more than that and everybody doesn’t have a chance to share and that’s what we are there for,” Mary said. The Long Beach group has an average of 40-50 attendees at each meeting, but they split into three groups – two for survivors and one for caregivers. Previously, they divided the survivor groups by age because younger survivors have different concerns than older survivors, such as jobs and children. However, they stopped doing that because the number of younger survivors dwindled.
The Long Beach group meets every Tuesday morning for 12 weeks in a row, then they take a month off. The membership of each sub-group is stable, in other words, the groups don’t usually intermingle. For the first time this year the stroke survivor groups and the caregiver group met together twice. Every 12-18 months they reconfigure the survivor groups. Meetings are primarily for survivors and caregivers to share their feelings, but one meeting each quarter is set aside for a speaker, and every two years a registered nurse gives a presentation about the causes and effects of stroke. They also have a couple of social events – a potluck picnic in August and a holiday party in December.
The quality of the group facilitators is another key ingredient for a successful group. Mary suggests using healthcare professionals like therapists, social workers, psychologists and nurses – people with experience leading a self-help group who are knowledgeable about stroke.
Some survivors may be great facilitators as well, but there are important things for them to keep in mind before taking on the responsibility. “We recently used a stroke survivor in the facilitator role,” she said, “and it did not work very well because as someone who had experienced stroke and recovery, he felt the need to comment on everything being shared by the participants. Facilitators don’t need to comment on everything that everybody says. Their job is to keep things moving and make sure everyone gets to share.”
To insure that new facilitators know what is expected of them, they have a full day training, then sit in with trained facilitators for several sessions. The facilitators also share among themselves what works and doesn’t work.
To recruit new members, group members attend health fairs and pass out brochures. They also provide speakers to community groups. In addition, they coordinate a peer visitor group with two local hospitals to send long-term survivors to visit new stroke patients. “We do a follow-up call with them to let them know we are here,” she said.Other important considerations for success are parking and room size. The Long Beach group started out in a hospital, but the parking was far away from the meeting room. Also there was not enough room to break into smaller groups. Now they meet at a church that has plenty of room and a parking lot near their meeting space. “Transportation is a huge issue in getting people to attend,” Mary said. They considered hiring a bus to transport people, but the liability issues were too daunting.
Mary was adamant that religion and politics always be avoided during group because people can too easily get riled up over those subjects. “Stroke families have enough to talk about without getting into that,” she said. “Stroke support groups are a safe place for survivors to share their feelings and gain the listening and acceptance they need.”