“Why don't they talk to our daughter?”: Eye-tracking AAC and medical communication in Rett syndrome

Abstract

This investigation explores medical advocacy for Rett syndrome—a rare neurological disorder causing loss of speech and hand function—through the lens of eye-tracking augmentative and alternative communication (AAC) technology. We gathered data from five individuals with Rett syndrome and their caregivers, encompassing semi-structured virtual interviews, video analyses of AAC device usage, and examination of AAC pageset screenshots. The findings reveal diverse AAC strategies employed to express discomfort or illness and highlight caregivers' pivotal role in processing medical information. Notwishstanding challenges like cost, time limitations in medical contexts, training needs, and the lack of standardized AAC symptom descriptions, eye-tracking AAC technology has the potential to enhance symptom assessment, foster patient autonomy, and facilitate personalized medical care. This study illuminates the transformative power of this AAC technology in medical communication, showcasing its promise in tackling communication challenges and underscoring its capacity to enhance quality of life for those with Rett syndrome and similar health conditions.