Taking Part in This Study Is Voluntary
You may choose not to take part or may choose to leave the study at any time. Deciding not to participate, or deciding to leaving the study, will not result in any penalty or loss of benefits to which you are entitled and will not affect your current or future relations with the Indiana Institute on Disability and Community at Indiana University Bloomington or the Indiana Governor’s Council for People with Disabilities.
This research is intended for individual 18 years of age or older. If you are under age 18, do not complete the survey.
This research is for primary family caregivers of an adult or child with a disability living in Indiana. If you are not the primary family caregiver of an adult or child with a disability, do not complete the survey. Also, if you and your family member with a disability do not live in Indiana, do not complete the survey.
Why Is This Study Being Done?
Oral health is essential to lead a healthy, productive, and quality life. However, people with disabilities are at great risk for oral diseases, which can further compromise their general health. People with disabilities encounter great challenges in accessing to quality dental care including the following structural and interpersonal barriers: inaccessible dental offices and equipment; and professionals’ lack of training and competence in providing care to patients with disabilities.
The purpose of this study is to identify the dental care experiences and current oral health needs of people with disabilities in Indiana. The findings will provide foundation for addressing the oral health needs of Hoosiers with disabilities. You were selected as a possible participant because you are a family caregiver of an adult or child with a disability in the state of Indiana.
The study is being conducted by the Indiana Institute on Disability and Community at Indiana University, under the supervision of Jae Chul Lee, Ph.D. It is funded by the Indiana Governor’s Council for People with Disabilities.
What Will Happen During the Study?
If you agree to be in the study, you will participate in an online survey which is estimated to take no more than 30 minutes to complete.
What Are the Risks of Taking Part in This Study?
The risks for participation are minimal. However, it is unlikely but possible that you may be distressed by some survey questions. The participation in this survey is completely voluntary; the participants can end the survey at any time, and you can also skip any questions that you feel uncomfortable with, except for several questions at the beginning of the survey, to determine your eligibility. You can also return to finish the electronic survey at a later time if you don’t complete in one sitting.
What Are the Potential Benefits of Taking Part in This Study?
After completing the survey, participants are eligible to receive a $10 electronic gift card for their time and effort. Participants may also gain a sense of contribution through the participation in the survey as the information collected will contribute to increased understanding of the dental care experiences and oral health needs of Hoosiers with disabilities.
How Will My Information Be Protected?
All research includes at least a minimal risk of loss of confidentiality. We will make every effort to keep your personal information confidential although we cannot guarantee absolute confidentiality. No personally identifiable information is collected in the survey. All data will be combined to ensure that there is no possibility of identifying participants and their response. A master Excel file in which all survey responses will be entered will be encrypted with a password. The encrypted data will be kept on a secure shared drive at Indiana University which is accessible only to the project staff who are involved in data entry and analysis. The master file will be destroyed three years after the end of the study.
Your personal information may be disclosed if required by law. In this rare case, the following entities can access your information other than research analysis staff: organizations that may inspect and/or copy your research records for quality assurance; the Indiana University Institutional Review Board or its designees; and any state or federal agencies who may need to access your research records (as allowed by law).
After completing the survey, participants are eligible to receive a $10 electronic gift card for their time and effort. Participants who are interested in receiving the $10 e-card will be directed to a separate web form to provide limited contact information (first and last name and email address). This information will be kept in an Excel file, which will be encrypted with a password. The encrypted data will be kept on a secure shared drive at Indiana University, which is accessible only to the project staff who are involved in disseminating the e-gift cards. The file will be destroyed one year after the end of the study.
Will I Be Paid for Participation?
After completing the survey, participants are eligible to receive a $10 electronic gift card for their time and effort. The $10 e-gift card is available to the first 300 participants who complete the survey and provide their limited contact information to the research team.
Will It Cost Me Anything to Participate?
There is no cost to you for taking part in this study.
Who Should I Call with Questions or Problems?
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, please contact the IU Human Subjects Office at 800-696-2949 or at firstname.lastname@example.org.
Can I Withdraw from the Study?
If you decide to participate in this study, you can change your mind and decide to leave the study before or during the survey.
Who Shall I Call with Questions about This Study?
For any questions about the survey research, please call or email us:
Jae Chul Lee, Ph.D.