Self-Help Conferences for People Who Stutter: An Interpretive Phenomenological Analysis

Self-help organizations and activities for people who stutter (PWS) have become more popular all over the world; however, there is a scarcity of evidence to support their utility in stuttering management. The purpose of this investigation is to understand more about the lived experience of individuals who attended a self-help conference(s) for PWS from the perspective of a PWS to learn about its potential usefulness in the overall management of stuttering. The investigator used Interpretive Phenomenological Analysis (IPA) to systematically collect authentic data of this social phenomenon. Semi-structured interviews were conducted with each of the twelve participants, 4-18 months after attending a self-help conference for PWS. Interviews were transcribed and reviewed. Significant quotes were documented and analyzed. Themes emerged from the data and the investigator interprets the finding through a narrative which and illustrated by participants' quotes. Credibility procedures included acknowledging potential investigator biases, triangulating analysis with another investigator, and asking participants to review and comment to determine if themes were consistent with the participants' experiences. Themes emerged in two domains - the experience having attended a self-help conference(s) for PWS and the experience of stuttering. Results related to having attended a self-help conference(s) include themes about: types of socializing opportunities with other PWS, affiliation, shifting roles, positive change of emotions, and ways of redefining oneself including improved self-perspective, self-acceptance, increased risk taking, and freedom. Results related to the participants' experience of stuttering are similar to previous studies. Emotions associated with stuttering were embarrassment, fear, frustration, loneliness, and shame. Results also show aspects of life that stuttering impacts including personality, education, dating, and career path. Other themes reveal participants' avoidance of words and situations and two post-conference themes. One related to perception of stuttering after the conference and the other related to disclosures about stuttering. Conclusions of the study are that self-help conferences for PWS help to minimize the negative internal influences that stuttering can have on daily functioning, by providing a forum for socializing, affiliating, and changes in self-concept potentially leading to improved communication. As a result, self-help conferences are a useful resource in the management of stuttering.