"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.

Access to HIV/AIDS care: a systematic review of socio-cultural determinants in low and high income countries.

BACKGROUND: The role of socio-cultural factors in influencing access to HIV/AIDS treatment, care and support is increasingly recognized by researchers, international donors and policy makers. Although many of them have been identified through qualitative studies, the evidence gathered by quantitative studies has not been systematically analysed. To fill this knowledge gap, we did a systematic review of quantitative studies comparing surveys done in high and low income countries to assess the extent to which socio-cultural determinants of access, identified through qualitative studies, have been addressed in epidemiological survey studies. METHODS: Ten electronic databases were searched (Cinahl, EMBASE, ISI Web of Science, IBSS, JSTOR, MedLine, Psyinfo, Psyindex and Cochrane). Two independent reviewers selected eligible publications based on the inclusion/exclusion criteria. Meta-analysis was used to synthesize data comparing studies between low and high income countries. RESULTS: Thirty-four studies were included in the final review, 21 (62%) done in high income countries and 13 (38%) in low income countries. In low income settings, epidemiological research on access to HIV/AIDS services focused on socio-economic and health system factors while in high income countries the focus was on medical and psychosocial factors. These differences depict the perceived different barriers in the two regions. Common factors between the two regions were also found to affect HIV testing, including stigma, high risk sexual behaviours such as multiple sexual partners and not using condoms, and alcohol abuse. On the other hand, having experienced previous illness or other health conditions and good family communication was associated with adherence to ART uptake. Due to insufficient consistent data, a meta-analysis was only possible on adherence to treatment. CONCLUSIONS: This review offers evidence of the current challenges for interdisciplinary work in epidemiology and public health. Quantitative studies did not systematically address in their surveys important factors identified in qualitative studies as playing a critical role on the access to HIV/AIDS services. The evidences suggest that the problem lies in the exclusion of the qualitative information during the questionnaire design. With the changing face of the epidemic, we need a new and improved research strategy that integrates the results of qualitative studies into quantitative surveys.