“Not Unless It’s a Life or Death Thing”: A Qualitative Study of the Health Care Experiences of Adults Who Stutter

BACKGROUND: For adults who stutter, communication difficulties can impact many spheres of life. Previous studies have not examined how stuttering might impact patient’s experiences with the medical system. OBJECTIVE: Our objective was to understand the range and depth of experiences with the medical system among adults who stutter. DESIGN: This was a qualitative study using age-stratified focus groups. PARTICIPANTS: Sixteen adults who stutter were recruited at a national conference about stuttering. APPROACH: We conducted three focus groups. Participants also completed a written questionnaire about sociodemographic characteristics, health status, and the impact of stuttering on their life [using the St. Louis Inventory of Life Perspectives Scale (SL-ILP-S) Total Effect Score]. We analyzed data using an iterative, thematic analysis, with an inductive approach, at a semantic level. KEY RESULTS: Participants were mostly (75 %) male and resided throughout the United States. The mean SL-ILP-S Total Effect Score was 27.3, indicating that stuttering caused minimal concern in participants’ lives. Despite this, we identified five themes that characterize ways in which stuttering affects interactions with the medical system. Participants described (1) discomfort speaking with office staff and physicians, which resulted in (2) avoiding health care interactions because of stuttering, and (3) relying on a third party to navigate the medical system. During visits with physicians, participants felt that (4) discussing stuttering with physicians required trust and rapport, and (5) speaking assertively with physicians required self-acceptance of their stuttering. CONCLUSIONS: We identified ways in which stuttering affects medical interactions. These results highlight the need for increased awareness and training for medical staff and physicians when caring for persons who stutter. Future studies among diverse samples of stutterers can determine the effects of stuttering on medical interactions, and inform the development of interventions to provide high quality health care for adults who stutter.