Thank you for your interest in participating in our survey on caregivers' perceptions of oral health in individuals with developmental disabilities.  Please read the consent form below and click "I consent" if you would like to continue with the survey.
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CONSENT TO PARTICIPATE
University at Buffalo Institutional Review Board (UBIRB)
Office of Research Compliance | Clinical and Translational Research Center Room 5018
875 Ellicott St. | Buffalo, NY 14203
UB Federalwide Assurance ID#: FWA00008824

Adult Consent to Participate in a Research Study
Title of research study: Caregiver’s Perceptions of Barriers and Facilitators to an Oral Health Routine for Individuals with Developmental Disabilities at Home and at the Dental Office
Version Date: 1/26/16
Investigator:  Janice Tona, PhD, OTR

Why am I being invited to take part in a research study?
You are being invited to take part in a research study because you are a caregiver of an individual with a developmental disability.

What should I know about a research study?
Whether or not you take part is up to you. You can choose not to take part. Your decision will not be held against you. You can ask all the questions you want before you decide by contacting Dr. Janice Tona at (716)829-6741 (tona@buffalo.edu)

Who can I talk to?
If you have questions, concerns, or complaints, or think the research has hurt you, talk to the research team via Dr. Janice Tona at (716)829-6741 (tona@buffalo.edu).You may also contact the research participant advocate at 716-888-4845 or researchadvocate@buffalo.edu.

This research has been reviewed and approved by an Institutional Review Board (“IRB”). You may talk to them at (716) 888-4888 or email ub-irb@buffalo.edu if:
-You have questions about your rights as a participant in this research
-Your questions, concerns, or complaints are not being answered by the research team
-You cannot reach the research team;You want to talk to someone besides the research team
-You want to get information or provide input about this research.

Why is this research being done?
This survey will explore the experience of caregivers in relation to oral health and dental care for individuals with developmental disabilities to identify what barriers and facilitators caregivers encounter at home when assisting with oral care, as well as when they are at the dental office. It will provide a springboard for future projects to create a toolkit for caregivers as well as dental care practitioners to develop a more accessible dental office and a more effective oral care routine at home.

How long will the research last?
We expect that you will be in this research study for 10-30 minutes.

How many people will be studied?
We expect about 100 people to participate in this research study.

What happens if I say yes, I want to be in this research?
If you agree to participate in this survey, you must click “I consent” at the end of this page. We will then ask you if you are a caregiver for an individual with a developmental disability a

Question Title

* What happens if I do not want to be in this research?
Your participation in this research study is voluntary. You may choose not to submit the survey and you may choose to not answer any questions you do not want to answer.

What happens if I say yes, but I change my mind later?
The survey is anonymous. Therefore, once you submit the survey we will not be able to remove your answers from the study because we will not know which answers came from you.

Is there any way being in this study could be bad for me?
There may be a risk of becoming upset when answering questions in the survey if unpleasant memories are triggered. The duration and magnitude of disappointment may vary according to your situation. You may feel a little discomfort or experience sadness, and the disappointment may last from seconds to days, though the likelihood of the discomfort lasting beyond completion of the survey is very small. To reduce the risk, the survey allows the you to skip questions that you find unpleasant.  

The faculty advisor's contact information is provided above and you are encouraged to contact the faculty advisor if you need assistance due to feeling sad. Dr Janice Tona (716)829-6741 (tona@buffalo.edu) is an occupational therapist with expertise in helping children and families and she will assist them in identifying local supports to help them.

Will being in this study help me in any way?
We cannot promise any benefits to you or others from your taking part in this research.

What happens to the information collected for the research?
Your answers will be stored in a password protected file for at least 3 years and no identifiable information will be shared with anyone. We may share your comments with others when we report on the study, but will not identify you in any way.

Can I be removed from the research without my OK?
We may need to remove some answers from the survey if we are unable to understand what was written.

Consent
By pressing the “I Consent” button you grant your permission to take part in this research.

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