Who is doing this study?
Dr. Jacqueline Pei
Department of Educational Psychology, University of Alberta, Edmonton, AB
jacqueline.pei@ualberta.ca
Dr. Katherine Flannigan
Canada FASD Research Network, Edmonton, AB
katy.flannigan@canfasd.ca
This study is being led by the Canada FASD Research Network (CanFASD). The study was developed in partnership with members of CanFASD's Adult FASD Expert Consultation Team and Family Advisory Committee.
You are being asked to take part in a research study. If you have any questions before you decide, you can email Katy Flannigan (katy.flannigan@canfasd.ca) or ask a support person.
Why am I being asked to take part in this study?
You are being invited to take part in this study because you're 18 years or older and you have fetal alcohol spectrum disorder (FASD). If you think you have FASD but have not been diagnosed, you can still participate. We want to learn more about strengths and successes of adults with possible or diagnosed FASD.
Why are we doing this study?
A lot of research has been done about the challenges of having FASD. There are not many studies about strengths and success in people with FASD. With this study, we want to know:
- How adults with FASD see themselves
- What adults with FASD feel they are good at
- How adults with FASD feel about their lives
What will I be asked to do?
There are different ways you can be in this study. You can pick how you want to participate.
- You can share your ideas in a survey
- You can share your ideas through art
- You can do both
Survey. If you want to do the survey, you will answer some questions on the computer. Questions will be about how you see yourself, what you're good at, and how you feel about your life. The survey will take about 1 hour to do. When you're done answering questions, you will hit the "submit" button at the end.
Art. If you want to share your ideas using art, you can send us photos, videos, drawings, paintings, or any kind of art you choose. You will then send us a picture or video of the artwork and tell us what it means to you.
Both. You can do the survey and send us your art.
You do not have to answer any questions that you do not want to answer. You can ask the researchers or a support person to help you with the study. If you don't have a computer but still want to do the study, you can ask for help from a support person or email Katy Flannigan at katy.flannigan@canfasd.ca. Someone from the research team can ask you the questions over the phone.
What are the benefits to me?
It might make you feel good to think about the things you are good at and what makes you happy. You may also feel good about helping others learn about strengths and success in people with FASD. By being in this study, you will help others learn how to provide better support for people with FASD. You will also be helping to decrease the stigma of FASD.
What are the risks and discomforts?
We don't know of any risks to being in this study. If we learn of any risks, we will tell you right away.
Will my information be kept private?
We will do everything we can to make sure the information you share is kept safe and private. The only people who will be able to see your answers are the researchers listed in this form and anyone hired for this study.
We will put everyone's answers together so no one can tell which answers are yours. Some of your answers may be used as quotes in research papers and presentations but no one will know they came from you.
To make sure your information stays private, you should close the window on your computer, and lock your phone or computer after you send us your answers.
What will happen to the information I provide?
Your answers will be saved to REDCap. REDCap is an online application from the University of Alberta. When we are ready to look at people's answers, we will take them from REDCap and save them in an encrypted file with a password on a locked computer. We may also store them in a locked room in the researchers' office. Only the researchers will be able to look at your answers. Your information will be kept safely for 5 years and then we will delete it.
The things we learn in this study may be used in research papers, presentations, and online posts. If you send us artwork, it may also be used in research papers, presentations, and online posts, or other material we create from this study (for example, a booklet full of participants' art). Your name will never go with your answers or artwork. No one will know you did the study because we will never give your name or personal information. We will ask you in the survey if you give permission to share your artwork in these ways.
Will I be paid to be in the research?
No, you will not be paid to be part of this study.
Do I have to take part in this study?
No, you do not have to be in this study. Your participation is completely your choice. You can change your mind and stop the study part way through. You can skip any question in the study if you do not want to answer it. If you want to stop part way through, just close the window and your answers will be deleted. After you finish the study and hit "submit" we can't delete your answers because we would not be able to tell which answers are yours. If you answer questions with a researcher or support person, you can tell them you want to stop at any time.
How can I get information about study results?
When we are done the study, we will post findings at www.canfasd.ca. You can also get updates about what we learn if you want to. If you want us to contact you in the future, we will ask for your name and address so we can get in touch with you later. We will keep your address safe in an encrypted and password-protected file on a secure computer. It will not be kept with your other answers in the study.
What if I have questions?
If you have any questions about this study, now or later, you can contact Dr. Katy Flannigan at katy.flannigan@canfasd.ca or Dr. Jacqueline Pei at jpei@ualberta.ca. The plan for this study has been reviewed by a Research Ethics Board at the University of Alberta (Pro00122299). If you have any questions about your rights as a research participant or how the study is being conducted, you can contact the Research Ethics Office at reoffice@ualberta.ca. Please keep this form for your records. You can print this page from a computer or contact Katy Flannigan at katy.flannigan@canfasd.ca to send you a copy.