In dialogue with the body: a phenomenological exploration of the interrelationship between people who use AAC and their AAC devices.

This paper explores the intricate relationship between people who use Augmentative and Alternative Communication (AAC) and their AAC devices. Drawing upon insights from phenomenology, I conducted a modified systematic review to explore the enduring phenomenon of low AAC device adoption and as a means to unravel the moments of embodiment and disembodiment experienced by people who use AAC with their devices. The discussion begins with an introduction to phenomenology as a philosophical inquiry and the guiding principles I employed to explore the phenomenon, namely, parte extra parte and object embodiment. Subsequently, I analyze the hegemony of a device-centric approach within the AAC landscape and delve into the first-person experiences of people who use AAC in living with their devices. Lastly, I discuss the embodiment and disembodiment of people who use AAC with their devices, conceptualize the interrelationship between them, and provide future directions for a more holistic and participatory AAC development and investigation that centers on the lived experiences of people who use AAC.

Assessment of a Clinical Trial Metric for Rett Syndrome: Critical Analysis of the Rett Syndrome Behavioural Questionnaire.

BACKGROUND: Rett syndrome is a neurodevelopmental disorder with potential for improvement through novel targeted therapeutics. Reliable outcome measures are critical to the development of treatments. We examined the merits and flaws of the Rett Syndrome Behavioural Questionnaire, an outcome measure for clinical trials. METHODS: The Rett Syndrome Behavioural Questionnaire was administered alongside other clinical scales in three cohorts, an online survey, a clinic-based study, and the screening period for a clinical trial. Data were collected from individuals with Rett syndrome and related disorders at three time points, separated by a minimum of one week and a maximum of two months. We hypothesized that for clinical trial use, little change should occur among visits. Distribution statistics, internal consistency, intraclass correlation coefficient, percent agreement, and Cohen's kappa were examined. RESULTS: Among 149 with classic Rett syndrome, the Rett Syndrome Behavioural Questionnaire was completed 377 times. Median total score was 33, ranging from 3 to 73. Of the 51 items tested in the original Rett Syndrome Behavioural Questionnaire study, 24 exhibited either floor or ceiling effects. Friedman's analysis of variance revealed significant difference among visits (P = 0.024), and graphical analysis using Bland-Altman plots demonstrated systematic positive bias with a 95% confidence interval including up to 12.9 points higher to 15.7 points lower at retest. Median agreement measured by kappa was 0.53 for retest at visit 2 and 0.49 for retest at visit 3. CONCLUSIONS: The Rett Syndrome Behavioural Questionnaire did not achieve acceptable standards as an outcome assessment for clinical trials in Rett syndrome.