Why you were selected: You are being asked to participate in a research study titled “Leading Exceptional Lives.” You were selected to participate in this project because you are the parent or caregiver of someone with exceptional needs. This survey is for parents or primary caregivers of a child with a developmental disability or delay, or of an adult with a developmental disability or delay since childhood. You must be at least 18 years old and live in Massachusetts to participate in this survey.
What this study is about: The purpose of this study is to help us understand how people with childhood-onset disabilities are doing in life. We will use what we learn from this survey to create a new online tool. This tool will help families effectively respond to the challenges their exceptional loved one is facing.
What we will ask you to do: If you agree to participate in this study, you will be asked to complete this online survey. The survey contains less than 50 questions, and can be completed in as little as twenty to thirty minutes. We are seeking to recruit 1,000 study participants.
Your risks, benefits and compensation: The risks are not likely to exceed those experienced in everyday life. However, it is possible you may feel sadness, disappointment, frustration, or other emotional discomfort when discussing the well-being of an exceptional loved one.
There are no direct benefits to you. However, it is possible that through completing the survey, you could gain new clarity about areas in which you could maximize the well-being of your loved one(s). Further, the findings of this study may shed light on the prevalence and causes of common challenges experienced by families and individuals with developmental disabilities and delays. This would benefit society more generally because it would be used to inform the development of an online tool designed to empower families in similar circumstances in the future.
There are no costs to you associated with your participation. As a thank you, we will email one $5 gift card for Amazon.com, Walmart, or Dunkin’ Donuts to those who complete the survey in full and provide us with a valid email address. We only need an email address to send you the gift card. We will not store, use or share your email address for any other reason without your consent. Limit one gift card per completed survey, please.
Your answers will be confidential. This Principal Investigator will exert all reasonable efforts to keep your responses and your identity confidential. No information that identifies you as a participant will be linked to your survey responses. All participant responses will be stored in password-protected data files. All data will be stored in anonymous form. Despite these careful procedures, we cannot guarantee that you will stay completely anonymous over the Internet. Your typed responses may appear in research reports or other publications on an anonymous basis. We will not distribute or share any confidential or personally identifiable information that you provide. Please note that regulatory agencies, the Boston College Institutional Review Board, and Boston College internal auditors may review research records.
Your participation is voluntary. If you choose not to participate it will not affect your relations with Boston College. You are free to withdraw or skip questions for any reason. There are no penalties for withdrawing or skipping questions.
If you have questions or concerns concerning this research. You may contact the Principal Investigator: Professor David Scanlon at firstname.lastname@example.org or (617) 552-1949. If you have questions about your rights as a research participant, you may contact the Office for Research Protections, Boston College, at (617) 552-4778 or email@example.com.