You are invited to participate in a research study investigating caregiver experiences among caregivers of transition age youth with autism spectrum disorder (ASD), intellectual disability (ID), and/or developmental disability (DD). The current research study is being conducted by Dr. Eun-Jeong Lee, PhD, an associate professor of Rehabilitation Psychology/Counseling, College of Psychology, Illinois Institute of Technology. Your responses will be completely anonymous, as no identifying information will be linked with your responses.
Who can participate in this study?
You are eligible to participate if:
· You are 18 years old or older
· You are the primary caregiver for a family member with ASD, ID, or DD
· The family member you care for is between the ages of 13-25 years old
** Primary caregiver means “you provide a major role in the physical, emotional, familial, and day-to-day support of your family member”
What will my participation involve?
As a participant in this study, you will spend approximately 25-45 minutes answering survey questions. We hope that you will respond to all items; however you are free to skip any items.
Are there any benefits or risks to my involvement?
Potential Benefits: At the end of the survey, you will have the opportunity to enter your email address for a chance to win one of twenty $30 PNC gift cards. Providing your email address is optional, and it will not be connected in any way with your responses. Email addresses will only be used for the raffle and not used or shared for any other reason. PNC gift cards must be sent to a physical mailing address. Winners of PNC gift cards will be contacted via email and asked to provide a mailing address to receive the PNC gift card.
Aside from the chance to win a gift card, there are no direct benefits for participating in this study. However, the information you provide will contribute to greater understanding of factors that may lead to or prevent psychological distress in caregivers. This improved understanding in turn may eventually lead to more effective ways of supporting caregivers.
Potential Risks: This research presents no risks other than the risk of becoming tired, bored, or upset while taking this survey. Answering questions on this survey may cause some caregivers to think of a memory or concern they find upsetting. You may skip any questions that make you feel uncomfortable and you may stop taking the survey at anytime without penalty. In the event you experience distress while answering any of these questions, you are encouraged to approach your local counseling services or call the national hotline number at 1-800-273-8255 to talk to a trained crisis worker. The local center where the family members you care for receives services may also be a major resource in providing or referring you to counseling services for caregivers.
Problems or Questions: Any questions, concerns or complaints that you may have about this study, including your rights as a participant in the research, can be answered by research assistant Melissa Ivins-Lukse by email (firstname.lastname@example.org).
Illinois Institute of Technology is not responsible for any injuries or medical conditions you may suffer while participating in this survey unless those injuries or medical conditions are due to IIT’s negligence. You may address questions and complaints to Glenn Krell MPA, Executive Officer of IIT Institutional Review Board at (312) 567-7141 or via email at email@example.com
I have read the material above and any questions I asked have been answered to my satisfaction. I agree to participate in this survey, realizing that I may withdraw without penalty at any time. I understand that if I am selected as a raffle winner, that the compensation from this study is considered taxable income by the IRS and that I should report these earnings on my tax return. I should seek help from a tax advisor if I am unsure how to do this.
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