TRANSITIONING IN DOWN SYNDROME
TRANSITIONING IN CHILDREN AND ADOLESCENTS WITH DOWN SYNDROME
This survey is for parents of children with Down syndrome who are between 5 and 30 years of age.
WHAT IS THIS SURVEY ABOUT?
Development does not always proceed through a smooth course. We are interested in whether your child with Down syndrome has experienced set-backs in development that are either temporary or long-lasting. We are also interested in knowing whether your child shows behaviors that may interfere with development. This survey will ask questions about some life experiences your child may have had, what behaviors your child shows either now or has shown in the past, and what the effects of these experiences and behaviors have been on your child's development. At the end of the survey you will have an opportunity to tell us in your own words your impression of your child’s development.
This survey will take between 30 and 45 minutes to complete. Your responses to this questionnaire are anonymous and cannot be traced back to you or your email address. We will report the findings of the survey as group data. Your participation is voluntary and you may withdraw your participation at any time. There are a small number of questions that require an answer; these questions are intended to shorten the survey so you will not be asked questions that are not relevant to your child. Your willingness to answer the questions indicates your consent to participate and that you agree to the use of your responses for research.
This research is being conducted by researchers at:
New York State Institute for Basic Research in Developmental Disabilities: Darlynne Devenny, Ph.D., Karen Amble, M.S.W., Anna Matthews M.S.C.
Vanderbilt University Kennedy Center: Robert Hodapp, Ph.D., Elizabeth Dykens, Ph.D., Richard Urbano, Ph.D.
We thank you for your generosity in sharing your experiences raising your child with Down syndrome. Please indicate that you have understood these statements and are willing to continue with the survey.