Perspectives on OCD research participation and biosample collection: A cross-sectional survey of youth with obsessive-compulsive disorder and their families
What is this study about?
The purpose of this study, which involves an online questionnaire, is to help researchers better understand the types of research studies of interest to young people with OCD and their families. We also seek to identify your perspectives on the advantages and disadvantages of participating in different types of research. This survey asks a number of questions about demographics in order to better understand how these factors may impact interest in and acceptability of clinical research participation, particularly for individuals who have experienced discrimination or racialization.
What happens in this study?
If you agree to participate, you and/or the youth in your care, will be asked some questions about demographics; medical and psychiatric diagnoses including OCD; and perspectives on research study participation. The survey will be sent via email, and it will take approximately 10-20 minutes to complete the survey. Participation can be completed entirely at home or wherever you feel comfortable.
If the youth in your care (between 8-18 years old) is interested in participating themselves, they will be asked to complete a separate assent form before beginning the survey. Assent forms are to be completed by the participating youth after consent has been provided by their parent/guardian.
You can choose to participate on your behalf as a parent, even if the youth in your care chooses not to. If you and your child both participate, you will be invited to complete a parental survey, while your child will complete their own survey. If you participate but your child does not, then you will still be invited to complete a survey about yourself and your child, if applicable.
Who is eligible for this study?
- Parent/guardian of a child with OCD diagnosed by a healthcare provider (e.g. family physician, psychologist, psychiatrist); or
- Young person ages 8-18 with a diagnosis of OCD made by a healthcare provider
- Living in Canada or the United States
Are there any risks from participating?
Answering questions on mental well-being may make you feel uncomfortable. Participants will be provided with a list of local mental health resources.
Who can I contact if I have questions?
The Principal Investigator of this study is Dr. Evelyn Stewart. If you have any questions about the study you may contact her study team at pop@bcchr.ca.
How can I get involved?
Click on the button below to complete the screening questionnaire if you would like to participate.