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

Abstract

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 selfacceptance 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.

Leading the Way in Health Disparities Research

“…In this issue of JGIM, Perez et al 4 report on health care system experiences of adults who stutter. While accurate data are difficult to find, it seems that the prevalence of stuttering in the adult general population is at least 0.5 %, and may be as high as 1 %.…”

Virtual reality exposure therapy for reducing social anxiety in stuttering: A randomized controlled pilot trial

“…The intensive nature of speech therapy can be a barrier to receiving the psychological support PWS often need ( 30 ), but a self-guided version of VRET offers greater flexibility. Given therapist interaction is often anxiety-inducing ( 37 ) and avoided ( 38 ), a self-guided option for VRET may also be more approachable.…”

A Narrative toward Overcoming Stutter in Adults Who Stutter

“…, 알코올중독 극복 과정 (Kim, 2012;Park & Choi, 2006), 학교폭력 극복 과정 (Ko, 2014) (Creswell, 2015). 현재까지 유창성장애 분야에서 내러티브 연 구는 Corcoran과 Stewart (1998) (Perez, Doig-Acuña, & Starrels, 2015), 말더듬 성인들 이 학령기에 학교 상황에서 겪은 경험에 대한 연구 (Daniels, Gabel, & Hughes, 2012), 청소년기 말더듬 아동들의 말더듬과 말더듬 치 료 경험에 대한 연구 (Hearne, Packman, Onslow, & Quine, 2008), 말더듬 치료 프로그램을 완료한 말더듬 성인들에게 치료의 경험에 대해 조사한 연구 (Stewart & Richardson, 2004) 등이 있었다. 국내에서는 말더듬 아동의 가족 (Lee & Sim, 2007;Lee, Shin, & Chon, 2011)과 취학 전 말더듬 아동의 교사 (Kim & Lee, 2013), 말 더듬 아동을 치료해본 경험이 있는 언어치료사 (Shin & Choi, 2012) 를 대상으로 한 연구와 같이 다양한 대상에 대해 질적 연구가 이루 어져 왔음을 알 수 있다.…”