Caregiver Stress

1. Study Information Sheet

 
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IRB STUDY #1110007226

INDIANA UNIVERSITY STUDY INFORMATION SHEET FOR

Caregiver Stress and Benefit Finding at Time of Transition from School to Adult Life for Children with
Autism Spectrum Disorders, Down Syndrome, and Typically Developing Children


You are invited to participate in a research study of how transitioning your child with an autism spectrum disorder (ASD), Down syndrome, or typically developing child from school to adult life for the first two groups and graduation from high school for the third group affects you and your family. You were selected as a possible subject because you are the primary caregiver of either a child with an ASD or Down syndrome who has transitioned from school to adult life within the past two years, or of a typically developing child who graduated from high school during the past two years. 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 Deborah Wimer,, M.S., of the Psychology Department of Indiana University Purdue University Indianapolis (IUPUI).

STUDY PURPOSE

The purpose of this study is to examine the factors associated with varying levels of stress for the primary caregiver during this transition period, with an eye to contributing to knowledge of needed services and intervention strategies for such caregivers.

PROCEDURES FOR THE STUDY:

If you agree to be in the study, you will do the following things:

Complete a survey, either online or on paper, which will take approximately 40 minutes to complete. The survey includes questions about how stressful your child’s transition to adulthood has been; your child’s typical behavior; other demands in the your life; your level of optimism; perceived social support; your coping styles; your perceived preparation for your child’s transition; caregiver, marital (if married) and family stress levels; your post-traumatic growth; and your mental and physical health.

Some questions may make you uncomfortable. If you do feel uncomfortable answering any questions, simply skip those questions. Also, at any point in completing the survey, you may choose to stop answering questions altogether. There is no penalty for skipping questions or not completing the survey.

If you are completing the survey on paper, you may withdraw all of your answers by not sending back the survey. If you are completing the survey online, at the end you will be asked to press the “submit” button if you want your answers included in the study. You may choose not to submit your answers, and that will withdraw you from the study. Once you have either mailed your paper survey back in or submitted it online, you cannot withdraw from the study since we will have no way to identify your surveys (there are no names on the surveys).

CONFIDENTIALITY

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 surveys submitted will not be associated with any name. Your identity will be anonymous 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 anonymous 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).

PAYMENT

You will not receive payment for taking part in this study.
CONTACTS FOR QUESTIONS OR PROBLEMS

For questions about the study or a research-related injury, contact the researcher Deborah Wimer at 317-446-7931. For questions about your rights as a research participant or to discuss problems, complaints or concerns about a research study, or to obtain information, or offer input, contact the IU Human Subjects Office at (317) 278-3458 [for Indianapolis] or (812) 856-4242 [for Bloomington] or (800) 696-2949.

VOLUNTARY NATURE OF STUDY

Taking part in this study is voluntary. You may choose not to take part or may leave the study at any time. Leaving the study will not result in any penalty or loss of benefits to which you are entitled. Your decision whether or not to participate in this study will not affect your current or future relations with Indiana University Purdue University at Indianapolis.
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