Health Service Use Among Adolescents and Adults with ASD - A Family Study
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Consent Form

 

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This is the consent form for our Parent Study. If you are a parent of a child aged 12 years and older with Autism Spectrum Disorder, please complete this form.

If you are an adult with Apserger Syndrome and want to participate in the Adult Study, please contact Vanessa Vogan by email, vanessa_vogan@camh.net, or telephone, 416-535-8501 Ext. 7806.


The Project
A group of researchers are studying the health services that people with autism spectrum disorders (ASD) use. If you agree to be part of this project, you will be asked to answer some questions about times when your family member with ASD needed help. We will use this information to help improve health services for people with ASD and their families in the future.

First we will ask you to complete some questionnaires about you and your family member with ASD. Then we will contact you every other month for a year to learn about the health services your family member used for that month and your satisfaction with those services (so 6 times in total). You can complete these questionnaires on the internet, on paper or over the phone.

Issues with Participation
There are no known problems in being part of this project. If you change your mind, you can stop being part of the project and it will not affect services you get now or in the future/later. As a thank you for completing the surveys, we will pay you $20 for completing background forms at the start of the project and then another $30 after the year of bi-monthly reports.
Benefits
While this project doesn't help you right now, we hope to make things better for people with ASD and their families in the future.

Confidentiality
Any information we collect about you is private to the extent permitted by law. Confidentiality cannot be preserved if you indicated in your survey response that you or other are at risk or that there are any issues about child abuse. If we write or present anything about what we learn from the study no one will know who you are from what we say.

A person from the research ethics team at the Centre for Addiction and Mental Health (CAMH) where we work may contact you in the future to ask you questions about the research study and you agreeing to be part of it. We can't tell them what you said but they might ask us for names of people who took part in the project so they can speak with you about your experience of being on our project.

INFORMED CONSENT

I agree to participate in the Family Study on Healthcare Services of Teens and Adults with ASD. I understand that the research staff will ask me questions about myself and my family member with ASD and that I will report on the health services that my family member with ASD uses over the next year. I can do this by telephone, email/internet, or regular mail. All of my questions about the study have been answered. I understand that what I say is confidential and that I may choose to stop being in the project at any time and this will NOT change services that I am getting or may need in the future. I know that I will be paid $20 for completing forms at the start of the project and another $30 at the end of the project.

If you have any questions or concerns, please contact Dr. Yona Lunsky at the Centre for Addiction and Mental Health: (416-535-8501 ext 7813.

If you would like to speak to someone about your rights, please contact Dr. Padraig Darby at the Centre for Addiction and Mental Health: (416)-535-8501 ext 6876.

How would you like to participate in the Family Study on Healthcare Services?

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If we need to contact you, please provide us the following information.


Parent name

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Mailing Address

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Telephone number (with area code)

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Email Address

How did you hear about our study?