Caregivers of children with Down syndrome 2 to 17 years old are invited to complete a survey helping develop the first-ever tool measuring challenging behavior that is specifically made FOR children with Down syndrome and created WITH the Down syndrome community.
Who can participate in this study?
Caregivers of a child with Down syndrome ages 2 to 17 years who live in the USA.
Who cannot participate in this study?
Exclusion criteria:
The child is younger than 2 years, 0 days old
The child is 18 years, 0 days or older
The parent/caregiver is 17.99 years old or younger
Where does this study take place?
This study is an online survey through the REDCap database. After clicking the link to the survey, English-speaking families will only have the option to complete the survey online. Spanish-speaking families will have the option to do the survey online, on the phone, or via Zoom.
What activities are involved in this study?
Eligible caregivers complete a confidential online survey regarding how often behaviors occur and how severe certain behavioral concerns are. Caregivers also complete a supplemental survey about basic demographic information and their child’s medical conditions.
What is the expected time commitment of this study?
The survey will take about 20-50 minutes to complete, and participants can return to the survey if needed. Some caregivers will be asked to fill out other surveys about behavior or complete the BIDS 2 weeks later.
What languages does this study support?
English and Spanish
Is compensation provided?
$25 for first BIDS survey, $20 for completion of second behavioral rating scale surveys ($45 total). Payment will be provided through a mailed Clincard (form of debit card). Participants are able to opt out of payment and will not need to provide address.
If you have any questions or are interested in joining the BIDS study, please contact: Aine Powell at aine.powell@cchmc.org.