Developing and evaluating a toolkit of strategies to support remote inclusive research teams.

Research teams must collaborate with people with intellectual and developmental disabilities to identify effective and inclusive responses to the COVID-19 pandemic and other public health emergencies. Collaborating remotely requires telecommunication and other technologies. We designed and evaluated a digital "Toolkit for Remote Inclusive Research" to provide research teams with evidence-informed strategies to make remote research accessible to and inclusive of people with intellectual and developmental disabilities. First, we completed a rapid scoping review to identify technology used by people with intellectual and developmental disabilities on collaborative research teams. Second, we designed a digital toolkit featuring 23 strategies identified in the review. Third, six inclusive researchers evaluated the toolkit. We illustrate how our team used these evidence-informed strategies during the past year to develop this and other tools to support inclusive research.

Psychometric Evaluation of the Parent Effort Scale.

Objective: The Parent Effort Scale (PES) is a parent report questionnaire designed to quantify the level of effort required of caregivers to assist their children in developmentally appropriate home- and community-based activities. This manuscript describes the psychometric evaluation of the PES. Method: Data collected from 304 parents of children ages 2-7 years (167 parents of a children with autism spectrum disorder and 137 parents of neurotypical children) were factor analyzed, calibrated using item response theory, and evaluated for construct validity. Results: The final PES scales are reliable and valid measures of the level of parental effort required to assist children in dressing, personal hygiene, sleep, socialization at home, participation in community events, and access to healthcare. A total score reflects overall parental effort. Conclusion: The PES can be used to plan and evaluate the effectiveness of interventions that aim to help parents enhance children's participation opportunities and thus, support their cognitive and social development.

How people with intellectual and developmental disabilities on collaborative research teams use technology: A rapid scoping review.

BACKGROUND: We conducted a rapid scoping review to identify how inclusive research teams use technology during the research process that could support remote collaboration during public health emergencies like the COVID-19 pandemic. METHOD: We searched three databases and conducted a hand search. Two independent reviewers screened 1498 abstracts and titles for inclusion criteria; 81 full text articles were further reviewed; 47 were included. We extracted information about each type of technology, categorised technology used during the research process, and documented described accommodations. RESULTS: We identified 47 articles and 94 examples of technologies used by people with intellectual and developmental disabilities throughout the research process: team formation and team function (38), data collection (19), data analysis (17) and dissemination (20). CONCLUSIONS: Technology use by team members with intellectual and developmental disabilities demonstrates promise for remote research collaborations during public health and climate emergencies and teams with members living in diverse locations.

Impact of COVID-19 on Community Participation and Mobility in Young Adults with Autism Spectrum Disorders.

Transportation and mobility for community participation is difficult for persons with Autism Spectrum Disorders (ASD) under normal circumstances, but the impact of COVID-19 made access even more challenging. Researchers used a single-subject design to examine patterns of change from before and after the COVID-19 pandemic in community mobility and participation as measured by GPS and daily participation questionnaires. Participants were young adults with ASD between the ages of 21 and 27 (4 males, 2 females) who were enrolled in a subsequent study. Community mobility and participation decreased for all participants in both essential and non-essential activities. Additionally, the number of trips for participants decreased substantially in the after COVID-19 periods, as did the variability in modes of transit.

Investigating child self-report capacity: a systematic review and utility analysis.

PURPOSE: To identify and evaluate methods for assessing pediatric patient-reported outcome (PRO) data quality at the individual level. METHODS: We conducted a systematic literature review to identify methods for detecting invalid responses to PRO measures. Eight data quality indicators were applied to child-report data collected from 1780 children ages 8-11 years. We grouped children with similar data quality patterns and tested for between-group differences in factors hypothesized to influence self-report capacity. RESULTS: We identified 126 articles that described 494 instances in which special measures or statistical techniques were applied to evaluate data quality at the individual level. We identified 22 data quality indicator subtypes: 9 direct methods (require administration of special items) and 13 archival techniques (statistical procedures applied to PRO data post hoc). Application of archival techniques to child-report PRO data revealed 3 distinct patterns (or classes) of the data quality indicators. Compared to class 1 (56%), classes 2 (36%) and 3 (8%) had greater variation in their PRO item responses. Three archival indicators were especially useful for differentiating plausible item response variation (class 2) from statistically unlikely response patterns (class 3). Neurodevelopmental conditions, which are associated with a range of cognitive processing challenges, were more common among children in class 3. CONCLUSION: A multi-indicator approach is needed to identify invalid PRO responses. Once identified, assessment environments and measurement tools should be adapted to best support these individuals' self-report capacity. Individual-level data quality indicators can be used to gauge the effectiveness of these accommodations.