Psychosocial Outcomes of Adult Siblings of Adults with Autism and Down Syndrome

You are invited to participate in a research study that will investigate how adult siblings of adults with autism and Down Syndrome respond to the stress of having a disabled sibling in adulthood. You were selected as a possible subject because you have a sibling with autism or Down Syndrome and both of you are over the age of 18. We ask that you read this form and ask any questions you may have before agreeing to be in the study.

The study is being conducted by John McGrew, Ph.D., and Teri Belkin, B.A. of the Psychology Department of Indiana University- Purdue University- Indianapolis (IUPUI).

The purpose of this study is to examine the factors that may be associated with psychosocial outcomes of adult siblings of adults with autism or Down Syndrome.

If you agree to be in the study, you will do the following things: Complete an online survey which will take approximately 45 minutes. The survey includes questions about your sibling’s behaviors and core characteristics, his/her caregiving needs, and the demands that are placed on you as his/her sibling, as a potential caregiver, and in other domains of your life. You will also be asked to mention any resources that are available to you, including social supports, respite care, and financial/formal assistance. Your coping strategies and your appraisal of your caregiving situation will be examined as well. Finally, your health-related quality of life, caregiving burden, and any benefits you find in your relationship with your disabled sibling will be assessed.

Efforts will be made to keep your personal information confidential. Information exchanged by emails or phone calls to the co-investigator will be deleted/destroyed once your questions have been answered. The survey that is submitted will not be associated with your name. Your identity will be confidential in reports in which the study may be published, and databases in which the results may be stored.

Organizations that may inspect and/or copy the confidential survey information for quality assurance and data analysis include groups such as the study investigator and his/her research associates, the Indiana University Institutional Review Board or its designees, and (as allowed by law) state or federal agencies, specifically the Office for Human Research Protections (OHRP).

With your consent, at the end of the survey, you can be entered into a raffle for a chance to win a $50 gift card to Target.