Self-help activities for people who stutter (PWS) have been gaining in popularity; however, there is a scarcity of evidence to support their utility in stuttering management. The purpose of this investigation was to understand the lived experience of individuals who attended a self-help conference(s) for PWS from the perspective of a PWS to learn its potential utility in stuttering management. The investigator used Interpretive Phenomenological Analysis (IPA) to systematically collect authentic data of this social phenomenon. Twelve participants were recruited from a self-help conference and the self-help community of PWS. Semi-structured interviews were conducted 4–18 months after each participant's last conference. Interviews were transcribed and analyzed. Themes were explained in investigator narratives and illustrated through participants’ quotes. Interpreted themes of the experience of having attended a self-help conference(s) for PWS included: socializing opportunities with other PWS, affiliation, redefining oneself and post-conference disclosures. A conclusion of the study was that the experience of having attended a self-help conference(s) for PWS helped to minimize negative impact that stuttering can have on daily functioning. It appears that self-help conferences were perceived as a safer or “stutter-friendly” environment and promoted social interaction, relationship building, and community building through planned and unplanned activities. Another conclusion was that the experience of having attended self-help conferences for PWS helped participants to communicate more easily. Reported increases in social activity and an “openness” about stuttering, suggest self-help conferences’ utility in stuttering management. These findings are supported by other studies about successful stuttering management and self-help activities for PWS. They have helped attendees who stutter to communicate more easily and suggest a reduction in the negative impact that stuttering has on their lives.
Self-help conferences for PWS are 2 1/2 to 4-day events that are hosted by a self-help organization for PWS including the National Stuttering Association (NSA), Friends – The National Association of Young People Who Stutter (Friends), and Speak Easy International (Speak Easy) within the U.S. They are typically held annually with the site of the conference changing each year. The key elements of a self-help conference include: opening and closing ceremonies, keynote speeches, open microphone sessions in which people have the opportunity to speak to an audience, and regular sessions (also referred to as workshops) in which a speaker(s) discusses a specific stuttering related topic(s), planned social events (e.g., baseball game, dinner, and touring), and a banquet. During the evenings, conference participants typically partake in planned social outings or form or join in on a more spontaneous social gatherings, whether it is going out or utilizing the amenities of the hotel. However, research about self-help activities for PWS has been scarce.
Clinical research on stuttering has mainly focused on topics such as: traditional treatment programs/approaches, traditional treatment outcomes, stuttering measurements, chronicity prediction, relapse prevention, and clinical training. Evidence from studies about self-help have demonstrated that such activities benefit people from a wide variety of conditions (Borkman, 1999, Katz, 1993 and Katz and Bender, 1976), including addiction, bereavement, cancer, chronic illness, diabetes, mental health conditions, and others. Studies that specifically relate to the potential role of self-help activities for PWS (Hunt, 1987, Krauss-Lehrman and Reeves, 1989, Plexico et al., 2005, Ramig, 1993, Tetnowski and McClure, 2009, Trichon et al., 2007, Yaruss and Quesal, 2006, Yaruss et al., 2002a and Yaruss et al., 2002b) have indicated some gains but also indicate a need for further investigation.
