leaders share what makes a support group successful
Support groups offer people with vestibular disorders an opportunity to meet face-to-face with others who are experiencing similar challenges, as well as to hear presentations by health professionals on topics of interest. The Vestibular Disorders Association (VEDA) serves as a hub for, and offers assistance to, support groups around the world. VEDA recently surveyed the leaders of these groups in an effort to identify the characteristics of successful support groups and how VEDA might improve the assistance it provides to them.
Of the 57 surveys that were distributed to group leaders, 27 were completed and mailed back to VEDA. Although the structure of the survey does not support rigorous statistical analysis, the compiled responses are summarized here, providing some observations about the features and leadership strategies of thriving groups (long-running groups and/or those that meet regularly), as opposed to those that struggle to meet regularly and maintain interest levels.
- Why people participate
- Meeting formats
- Support group longevity
- Meeting location and frequency
- Leading a support group
- Starting and publicizing a support group
Almost all support group leaders reported four reasons that people attend meetings:
- To learn coping skills and strategies
- To socialize
- To express emotions
- To learn about vestibular disorders
Less frequently reported was the use of meetings to show family and friends that an individual’s symptoms were not unique. However, this motivation was pointed out in twice as many of the thriving groups as of the struggling groups.
Both thriving and less successful groups use the following featured activities or meeting formats, listed in order of most to least frequently reported:
- Health professionals and others (e.g., lawyers) as guest speakers. This format draws the largest audiences.
- Group discussion of specific topics
- VEDA-produced DVD
- A less structured meeting
- Social functions (infrequent)
The discussion topics most frequently mentioned (in order) were the following:
- Coping in the family and at home, in the workplace or school, and in social settings
- Specific vestibular disorders
- Diagnosis and testing issues
- Perceived lack of interest or knowledge on the part of medical professionals
- Physicians’ lack of time to discuss all of a patient’s questions and concerns
- Disability issues
Most support group leaders use topics inspired by input from health professionals, as well as topics suggested by members or presented in VEDA’s newsletter (On the Level).
Approximately half of the survey respondents lead groups that have been meeting for at least six years. More than one-third of the groups have been meeting for longer than ten years.
Group leaders reported that the most common reasons people stop coming to meetings are schedule conflicts and the difficulty of traveling with symptoms. Other perceived reasons were that new information is not provided, or that the group had succeeded in helping the person to the extent needed.
The thriving groups are typically those that always meet physically, as opposed to groups that sometimes rely on e-mail discussions. The most frequent meeting locations are hospital conference rooms and public buildings such as libraries or churches. Private homes and doctors’ offices were rarely reported as meeting places by the thriving groups. “Meeting” electronically through e-mail was not reported by thriving groups but was mentioned by several of the struggling groups.
Half of the groups meet monthly; the others meet less frequently. Most of the longest-running and more highly attended groups meet at least monthly. Many of the monthly groups schedule a few months off, usually in the summer. This provides the leaders with a break, and helps avoid drops in attendance during vacation times.
Thriving groups appear to have larger meetings, with many reporting an average of 15 or more attendees. We asked facilitators what their preferred group size is for meetings that provide needed support, remain interesting, and are easy to manage. Almost all responses indicated that the dynamics are best when there are more than 10 attendees. Leaders of both struggling and thriving groups indicated, however, that the number of participants doesn’t necessarily matter or that it depends, in part, on the personalities of those present.
Some group leaders reported occasional gatherings of more than 100 participants. Across both types of groups, the most common average attendance was 5–10 people.
Most of the leaders who returned the survey had never run a support group before they began facilitating their vestibular disorders group. Their most common motivation was a personal desire to provide information and support. Many of the health professionals indicated that their clinical practice saw a need. In some cases, a person was motivated by the need for someone to take over an existing group. Many group leaders were the founder of their group.
Half of all groups had co-leaders. The advantages mentioned for having a co-leader included being able to bounce around planning ideas and having a backup leader in case of a necessary absence.
Approximately half of the group leaders who responded to the survey are health professionals. They include social workers, occupational therapists, physical therapists, audiologists, a nurse, and a certified medical assistant. Among group leaders not trained in the health professions, current or former occupations included teacher, librarian, association president, coordinator for service organization, analyst, volunteer worker, real-estate agent, peer mentor for vocational rehabilitation, and administrator. These leaders felt that having personal experience with a vestibular disorder was the most important trait in helping them lead a group. Other important qualities mentioned were a willingness to listen and offer encouragement, good communication skills (to serve as facilitator and make contact with potential guest speakers), willingness to do a little research in order to help lead discussions, and an ability to coordinate activities such as publicity, finding a meeting location, and outlining meeting topics.
Half of the survey respondents received help from a clinic in starting their vestibular disorders support group. For the longer-running groups, receiving help from a clinic was more common.
Both new and established support groups commonly advertise meetings through local physicians who inform their patients. Additional forms of publicity include flyers given to professional offices and hospitals, posted on community bulletin boards, or mailed to potential attendees; and announcements on VEDA’s Web site, on VEDA's Facebook page, and in local newspapers. A few of the longer-running groups advertise through Internet forums. The most successful groups tend to employ the full range of advertising methods.
Finally, survey participants offered a number of tips for anyone who is considering starting a new group or enlivening an existing one.
- Introduce yourself to local professionals such as pharmacists, psychologists, neurologists, otologists, ophthalmologists, social workers, physical and occupational therapists, and audiologists. They may be interested in providing information, speaking to the group, or informing their patients about it.
- Start a short, local newsletter to keep people informed about meeting topics and dates.
- Use VEDA’s online list of support groups to connect with other leaders for hints about handling situations or for finding new ideas.
- Research vestibular disorders and meeting topics by reading and by talking with health professionals.
- Ask group members to identify the reason they come to the group, so that you can target that need in planning meetings.
- Be encouraging; don’t dwell on the negative.
- Avoid micro-managing the group. Have group members do some of the work, but don’t put people on the spot.
- Give it a try. It’s rewarding to see the relief in a person who says, “I have finally found someone like me who understands.”
The responses to VEDA’s survey indicate that the most successful support groups tend to meet at least monthly, in a physical and public location. They publicize their meetings in a wide range of ways. Informing local clinicians about the group meetings and having guest speakers help to maintain participation levels and thus potentially improve the group dynamics. Regardless of the structure of meetings, they provide the opportunity for people to gather with others who are experiencing similar symptoms or circumstances.