We are researchers at The Chicago School. We are asking you to participate in a research study to examine the experiences of parents and caregivers related to repetitive verbal behavior in individuals with Prader-Willi syndrome (PWS).
You will be asked to complete a web-based survey that asks questions about the person you care for who is diagnosed with PWS. Questions will include the subject matter of demographics, verbal behavior, communication, and anxiety. This survey will take you approximately 30 minutes to complete. This may cause you to feel some discomfort or to experience an emotional response. Although your responses will be confidential, there is also a risk of breach of confidentiality if someone were to see your responses. Steps will be taken to minimize these risks which are outlined in the Confidentiality section below. Although you may not benefit directly from participating in this study, this will help us to understand more about PWS and repetitive verbal behavior.
Please take your time to read the entire document and feel free to ask any questions before agreeing to this document.
Purpose: The purpose of this study is to better understand repetitive verbal behavior in individuals with PWS. The aim is to learn more about the prevalence of these behaviors and when and why these behaviors occur, including the role of mental health factors, skills deficits, and past experiences in the environment. Data from this survey will be used to inform the development of behavior-analytic interventions specific to repetitive verbal behavior in PWS.
Procedures: If you choose to participate in this web-based online survey, you will be directed to access an online survey which will ask you a series of questions about your child’s repetitive verbal behavior, and the factors that appear to predispose and maintain this behavior. There are two brief surveys included. One consists of 66 questions, and the other consists of 15 questions. They will take you approximately 30 minutes to complete. The questions will all be completed online via the website platform QuestionPro.
Risks to Participants: This survey includes questions about parent related stressors and behaviors and may cause you to have an emotional response such as increased feelings of stress or anxiety. To minimize this risk, you may skip any questions that cause discomfort and you can quit the survey at any time. There is also a risk related to breach of confidentiality if someone were to see your responses. To minimize this risk, this survey will not collect any directly identifying information so your responses cannot be connected to you. All research documentation will be saved to The Chicago School secure server and will be password protected. There is also a risk to your privacy if someone were to see your responses as you complete the survey. To mitigate this risk, we encourage you to complete the survey in a private setting.
Benefits to Participants: You will not directly benefit from this study. However, we hope the information learned from this study may further the understanding of repetitive verbal behavior, and lead to the potential for interventions for this behavior challenge.
Compensation: At the completion of the survey, you can choose to enter a lottery drawing for one of ten $100 gift cards. If you choose to enter the drawing, you will be directed to a new page to enter your e-mail address. There will be ten winners. The winners of the drawing will be notified, and the gift cards will be sent via e-mail.
Alternatives to Participation: Participation in this study is voluntary. You may withdraw from study participation at any time without penalty.
Confidentiality: During this study, you will be asked some personal questions to gather basic demographic information such as gender, age, ethnicity, highest level education, occupation, country of residence, and relationship to individual with PWS. Demographics on the individual with PWS that you care for will also be collected. This includes their gender, age, ethnicity, and whether your child has a PWS diagnosis. Information about your experiences and behavior as a parent will also be included. No directly identifying information will be collected about you. IP addresses will not be collected. Your email address will be collected if you choose to enter into the raffle for gift card compensation, however your email address will not be linked to your responses.
Research files will be kept in The Chicago School OneDrive, which is a secure electronic cloud drive. The researchers will have access to the research files through a secure password. Data will be stored for a minimum of five years after publication, at which time it will be permanently deleted.
It is possible that your data may be used for future research or distributed to another researcher without your consent. However, information that could identify you will be removed.
Your research records may be reviewed by federal agencies whose responsibility is to protect human subjects participating in research, including the Office of Human Research Protections (OHRP) and by representatives from The Chicago School Institutional Review Board, a committee that oversees research.
Questions/Concerns: If you have questions related to the procedures described in this document, please contact Dr. Kasey Bedard (
[email protected]) or Dr. Kelly Krukowski (
[email protected]).
If you have questions concerning your rights in this research study you may contact the Institutional Review Board (IRB), which is concerned with the protection of subjects in research project. You may reach the IRB office Monday-Friday by calling 312.467.2335 or writing: Institutional Review Board, The Chicago School, 325 N. Wells, Chicago, Illinois, 60654.
Consent to Participate in Research
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