Supporting the Health and Well-being of Children With Intellectual and Developmental Disability During COVID-19 Pandemic

This research study will occur at six schools dedicated to children with IDD that are a part
of the Special School Districts in St. Louis, MO.

Additionally, surveys, focus groups, and fuzzy cognitive mapping sessions will be conducted
at these six schools and at schools within the Kennedy Krieger School Programs in Baltimore,
MD. Finally, a national survey will be administered to families, teachers, and staff of the
67 University Centers for Excellence in Developmental Disabilities (UCEDD) which is sponsored
by the Association of University Centers for Disability (AUCD).

The first aim will involve focus groups of parents/guardians, teachers, and school staff to
identify the barriers and facilitators to frequent SARS-CoV-2 testing, impressions of
COVID-19, and best messages and implementation strategies to promote increase testing and
vaccination. A formal process for developing two types of messages (general versus focused)
will be performed using focus group data and involving key stakeholders to test the messages.
A cluster randomized adaptive clinical trial will then occur at the six special school
district schools. In phase 1, the schools will be randomized initially to either the general
or focused message to promote the adoption of weekly SARS-CoV-2 testing by the students and
teachers. After 5 months, data analysis will be conducted to determine which strategy led to
the highest percentage of testing. Phase 2 will begin at 7 months after the schools are
randomized to either the best message determined from phase 1 or best message plus an
augmented implementation strategy.

Beginning in April 2021 the first aim was expanded to include weekly testing and message
development at the Kennedy Krieger Institutes and Sheppard Pratt Schools in Baltimore, MD. In
phase 1, these schools will be randomized initially to either the general or focused message
to promote the adoption of weekly SARS-CoV-2 testing by the students and teachers. After 5
months, data analysis will be conducted to determine which strategy led to the highest
percentage of testing. Phase 2 will begin at 7 months after these schools are randomized to
either the best message determined from phase 1 or best message plus an augmented
implementation strategy.

The second aim will assess the national perspectives among parents of children with IDD and
school staff regarding the impact of COVID-19 and importance of SARS-CoV-2 testing. Fuzzy
cognitive mapping (FCM) and the administration of local and national surveys will be used to
accomplish this aim. FCM will involve in-person sessions with parents from the schools in aim
1 and Kennedy Krieger Institute/Sheppard Pratt schools in Baltimore, MD for children with
IDD. These sessions will help identify the facilitators and barriers SARS-CoV-2 testing and
other mitigation strategies including COVID-19 vaccine. Since no accepted measures have been
developed for understanding parent and school staff concerns for children with IDD around
COVID-19, local (St. Louis and Baltimore) and national surveys will be conducted. Custom
surveys will be deployed across two stakeholder groups: parent/guardians and school staff. We
will administer the survey at baseline and during the trial across school settings (St. Louis
and Baltimore).

A national survey will also be administered across the UCEDDs. Psychometric analysis will be
performed to help identify the questions for a national survey at the end of the study
period. In addition to the custom surveys, NIH recommended parent-report surveys from the
PhenX Toolkit will be used. The surveys to be used include the Psychological Stress
Associated with the COVID-19 Crisis Scale and COVID-19 impact questionnaires.