Severe Challenging Behavior Survey

Understanding the Experiences of Families to Improve State Policy and Service Delivery for Individuals with Autism and Severe Challenging Behavior

You are invited to participate in a study entitled, “Understanding the Experiences of Families to Improve State Policy and Service Delivery for Individuals with Autism and Severe Challenging Behavior Survey” conducted by Brian Conners, Ed.S., BCBA of Seton Hall University in partnership with Suzanne Buchanan, Psy.D., BCBA-D and Eric Eberman, M.S.Ed. of Autism New Jersey.

We are currently recruiting participants who are parents/guardians of children and adults with autism. The purpose of this study is to examine your experiences having a child with severe challenging behavior(s) and accessing and receiving services through crisis response or other providers in the state of New Jersey to inform statewide efforts to improve public policies and services. This survey includes questions regarding demographics, severe challenging behavior, injuries, crisis response, treatment services, medical conditions and care, impact, and overall experience.

Your participation in this online survey through Qualtrics, an online survey tool, is completely voluntary and you will in no way be penalized for not participating or not fully completing the survey. Your survey responses are completely confidential. You will have the option to provide contact information if you would like to be contacted for follow up information or questions; however, this is entirely optional. The close-ended question of the survey will take approximately 10 minutes to complete. There are also open-ended questions which may take more time depending on the length of your responses. All data collected will be downloaded and encrypted to a USB memory stick and locked away in the principal investigator’s office at Seton Hall University in order to ensure confidentiality of all data obtained as part of this study.

Complete Survey

Thank you in advance for your time and consideration. If you have any questions, please feel free to contact the study’s lead investigator at brian.conners@shu.edu or Seton Hall University’s Institutional Review Board at irb@shu.edu or 973.313.6314.

For more information and a comprehensive list of potential benefits and risks of participating, please contact the investigators. For helpful information on being an informed research participant, please visit the Organization for Autism Research’ (OAR) Parent’s Guide to Research. Appendix B provides a list of questions to ask prior to participation and overviews your rights as a research participant. Autism New Jersey strongly recommends reviewing this information prior to participating in any research study.