INDIANA UNIVERSITY STUDY INFORMATION SHEET FOR RESEARCH
Perceptions of Accessibility to Neurodevelopmental Assessment - Caregivers (PANA-C)
You are being asked to participate in a research study. Scientists do research to answer important questions that might help change or improve the way we do things in the future. This document will give you information about the study to help you decide whether you want to participate. Please read this form, and ask any questions you have, before agreeing to be in the study.
All research is voluntary. You can choose not to take part in this study. If you decide to participate, you can change your mind later and leave the study at any time. You will not be penalized or lose any benefits if you decide not to participate or choose to leave the study later.
This research is intended for individuals 18 years of age or older. If you are under age 18, do not complete the survey.
This research study is for parents or primary caregivers of a child under the age of 18 years who underwent a non-school based neurodevelopmental evaluation (e.g., autism, attention-deficit/hyperactivity disorder, global developmental delay) within the past 2 years. If you are not a parent/primary caregiver of a child under the age of 18 years who underwent a clinical neurodevelopmental evaluation within the past 2 years, do not complete this survey.
The purpose of this study is to develop and validate a preliminary version of the Perceptions of Accessibility to Neurodevelopmental Assessment - Caregivers (PANA-C) that measures caregiver perceptions of accessing neurodevelopmental evaluations for their children.
The study is being conducted by Parker Beckman, M.S.Ed., and Maryellen McClain, Ph.D., through the Department of Applied Psychology in Education & Research Methodology at Indiana University Bloomington.
If you agree to be in the study, you will do the following things. Your participation will involve completing a brief demographic information form, a questionnaire assessing your perception in accessing a neurodevelopmental assessment for your child, and a dementia knowledge survey. Your total participation time in this study is expected to take approximately 25 minutes.
Before agreeing to participate, please consider the risks and potential benefits of taking part in this study. This is a minimal risk research study. That means that the risks of participating are no more likely or serious than those you encounter in everyday activities. The foreseeable risks or discomforts include the possibility, although unlikely, that unauthorized individuals could gain access to your responses because you are responding online. However, your participation in this online study involves risks like a person's everyday use of the Internet. To minimize those risks, the research team works to ensure confidentiality to the degree permitted by technology.
We do not think you will have any personal benefits from taking part in this study, but we hope to learn things that will help researchers in the future.
You are not guaranteed payment for participating in this study. After completing the survey, you will be directed to an option link to provide your email address to a gift card raffle. A total of fifty (50) participants will be selected to receive a $25 Visa eGift card. Participants will be randomly selected once data collection is completed. The odds of winning the raffle will depend on the total number of participants who meet eligibility criteria and elect to provide an email address. For example, if 200 participants enter the raffle, the odds of winning would be 50 in 200 (25%). Compensation will not occur if the survey is incomplete, either due to withdrawal or termination of participation.
We will protect your information and make every effort to keep your personal information confidential, but we cannot guarantee absolute confidentiality. No information which could identify you will be shared in publications about this study.
Your personal information may be shared outside the research study if required by law. We also may need to share your research records with other groups for quality assurance or data analysis. These groups include the Indiana University Institutional Review Board or its designees, and state or federal agencies who may need to access the research records (as allowed by law).
If you have questions about the study or encounter a problem with the research, contact the Principal Investigator, Maryellen McClain, Ph.D., at mcclainm@iu.edu.
For questions about your rights as a research participant, to discuss problems, complaints, or concerns about a research study, or to obtain information or to offer input, please contact the IU Human Research Protection Program office at 800-696-2949 or at irb@iu.edu.