Caring Across Languages: Clinician Perceptions of Variability in US Pediatric Outpatient Epilepsy Care

Little is known about outpatient language access practices in the United States for children with epilepsy whose families use languages other than English (LOE) for medical care. The Pediatric Epilepsy Research Consortium (PERC) aimed to characterize clinician perceptions of institutional practices by developing and conducting a descriptive survey. We weighted statistical outcomes to equally represent clinician opinion from each center and conducted deductive thematic analysis of open-ended responses. One hundred clinicians from 40 institutions (53.3% institutional response rate) completed the survey. Access to both interpretation and translation services was uneven across PERC institutions. Seizure action plans in all common LOE were available at 15.2% of centers. Despite access to professional interpreters, 61.2% reported using nonprofessional interpretation at times. Qualitative themes included clinician burden, necessary resources, language certification practices, nonprofessional interpretation, translation delays, languages of lesser diffusion, technology use, trust in remote interpretation, language concordance, and perceptions of certification requirements. Findings highlight the need for interventions and guidelines to promote language-access for children with epilepsy whose families use LOE.