Communication of individuals with CDKL5 deficiency disorder as observed by caregivers: A descriptive qualitative study.

CDKL5 deficiency disorder (CDD) is a genetically caused developmental epileptic encephalopathy that causes severe communication impairments. Communication of individuals with CDD is not well understood in the literature and currently available measures are not well validated in this population. Accurate and sensitive measurement of the communication of individuals with CDD is important for understanding this condition, clinical practice, and upcoming interventional trials. The aim of this descriptive qualitative study was to understand how individuals with CDD communicate, as observed by caregivers. Participants were identified through the International CDKL5 Disorder Database and invited to take part if their child had a pathogenic variant of the CDKL5 gene and they had previously completed the Communication and Symbolic Behavior Checklist (CSBS-DP ITC). The sample comprised caregivers of 23 individuals with CDD, whose ages ranged from 2 to 30 years (median 13 years), 15 were female, and most did not use words. Semistructured interviews were conducted via videoconference and analyzed using a conventional content analysis. Three overarching categories were identified: mode, purpose and meaning, and reciprocal exchanges. These categories described the purposes and mechanism of how some individuals with CDD communicate, including underpinning influential factors. Novel categories included expressing a range of emotions, and reciprocal exchanges (two-way interactions that varied in complexity). Caregivers observed many communication modes for multiple purposes. Understanding how individuals with CDD communicate improves understanding of the condition and will guide research to develop accurate measurement for clinical practice and upcoming medication trials.

Simplified COVID-19 guidance for adults with intellectual and developmental disabilities.

BACKGROUND: During the COVID-19 pandemic, the United States' Centers for Disease Control and Prevention (CDC) created guidance documents that were too complex to be read and understood by the majority of adults with intellectual and developmental disabilities who often read at or below a third-grade reading level. This study explored the extent to which these adults could read and understand CDC documents simplified using Minimised Text Complexity Guidelines. METHOD: This study involved 20 participants, 18-48 years of age. Participants read texts and responded to multiple-choice items and open-ended questions to gather information about how they interacted with and understood the texts. RESULTS: The results provide initial evidence that the Minimised Text Complexity Guidelines resulted in texts that participants could read and understand. CONCLUSION: Implications for increasing the accessibility of public health information so that it can be read and understood by adults with extremely low literacy skills are discussed.

Eye-trackers, digital-libraries, and print-referencing: A single case study in CDKL5.

BACKGROUND: Providing emergent literacy intervention and assessing outcomes for children with low-incidence, complex disabilities with concomitant physical, cognitive, sensory, and communication impairments presents a significant challenge to researchers, educators, clinicians, and families alike. AIMS: This study aimed to leverage advancements in commercially available eyetracking technologies to measure visual attention to print before and after a parentmediated print referencing intervention with a child with a severe, low incidence, congenital disability. Print referencing means drawing attention to the print on the page while reading. METHODS AND PROCEDURES: The single case study investigated a mother-daughter dyad who completed the protocol using eye-gaze technology, digital children's books, and a computer configured with software for observing and recording interactions that were shipped to the family's home and set up by the mother with remote support from a researcher. OUTCOMES AND RESULTS: Results demonstrate that the eye-tracker successfully captured the participant's eye-gaze. Furthermore, mean-level shifts in frequency of fixations demonstrates changes in visual attention to print after the parent introduced the print referencing strategy during reading. CONCLUSIONS AND IMPLICATIONS: Commercially available eye-trackers and digital libraries were successfully used by the parent-child dyad to record visual attention. Furthermore, remote support from a trained researcher was sufficient to support the parent through set-up, calibration, intervention, and implementation.