Welcome to the Informed Consent Form for the Study: Creating Autistic Educational Space Through A Community Based Participatory Design Charrette

Researchers:

Dr. Melanie Baljko, Lassonde Building, Room 2028, York University, mb@cse.yorku.ca, (416) 736-2100 ext. 33348
Ryan B. Collis OCT, BA, BScH, BEd, BScH, rbcollis@my.yorku.ca

Purpose of the Research:

This project looks at how specialists from two different groups communicate their expertise when cooperating to create something both are invested in. Educators and autistic advocates will work together on a message board to design the optimal educational space for a class of students that includes autistics. From their interactions I will assemble their ideas into guide to potential best practices for educators and administrators. I will also write a paper on the mechanics of their interactions, how working together on this project enabled them to share their expertise, and what they learned from working with each other.

What You Will Be Asked to Do in the Research:

If you participate in this research study, you will be asked to participate in a group activity that will take place over a period of three weeks. You will be asked to fill in a questionnaire before and after the three-week group activity regarding your thoughts on working with members of the other group (educators or autistic advocates). You will be asked to provide some basic personal information, such as your prior education and training, your age, and your gender identity. You will be asked to identify the group to which you belong in this study: educator or autistic former student (or both). To prepare for the group activity, you will be asked to read a document that will explain the format of the activity. For the three weeks of the activity, you will read, write, and respond to messages on an on-line forum. There will be an initial scenario, and occasional guiding questions that you will be asked to respond to. You will be interacting, through the forums, with members of both groups. In these discussions, participants will be encouraged to include stories of their own lived experiences. The time commitment over the three weeks is estimated to be 3-4 sessions per week, of 20-minutes each, though this will depend on the individual. All of your activity in this study will be done via the study website.
Participants will receive an honorarium in the form of a $25 gift card at a local coffee shop chain.

Risks and Discomforts:

If you have had discomforting or traumatic experiences in an educational setting or due to the actions of an educator or administrator, there is a risk that this study will foreground these experiences for you. You may, while working in the group setting, encounter posts made by other participants which may create feelings of discomfort. We will include content warnings to forewarn you of these posts. We will also provide a list of resources for mental wellbeing on the study website.

Benefits of the Research and Benefits to You:

You will be exposed to different kinds of experts and you will have the opportunity to learn to cooperatively work with people they might not otherwise be exposed to. The educators will learn more about the way autistics think and how to best help them succeed in an academic setting, improving their practice. Autistic adults will benefit by helping to train educators to better support their autistic students.

Voluntary Participation and Withdrawal:

Your participation in the study is completely voluntary and you may choose to stop participating at any time. Your decision not to volunteer, to stop participating, or to refuse to answer particular questions will not influence the nature of your relationship with York University either now, or in the future. If you stop participating, you will still be eligible to receive the promised compensation for agreeing to be in the project. In the event you withdraw from the study, all associated data collected will be immediately destroyed wherever possible.

Confidentiality:

All contact among participants will be through an online forum. On the online forum, you will be assigned a unique and non-disclosing ‘username’. All of your personal details will be hidden from the other participants, except the group to which you belong (educator, autistic former student, or both). Participants who wish to be anonymous may elect to not post any identifying details in their forum postings and other group contributions. If you choose, you may post identifying information at your own discretion, but at any time ask us to redact it. In our analysis, any such identifying information will be redacted.
The two surveys and any ethnographic stories will include only the forum username for identification purposes.
Only one copy of the ‘key’ (the mapping between your real name and your username) will be kept, and it will be in an encrypted and secured digital file.
Data will be stored until no later than 1 July 2021. At this time all information will be deleted. This includes the contents of the forum, the questionnaires, and the username key.
Unless you choose otherwise, all information you supply during the research will be held in confidence and unless you specifically indicate your consent, your name will not appear in any report or publication of the research. Your personally identifiable data will be safely stored in a password locked encrypted file and only the researcher will have access to this information. All information will be deleted by 1 July 2021. Confidentiality will be provided to the fullest extent possible by law.
The researcher(s) acknowledge that the host of the online survey (e.g., Qualtrix, Survey Monkey etc.) may automatically collect participant data without their knowledge (i.e., IP addresses.) Although this information may be provided or made accessible to the researchers, it will not be used or saved without participant’s consent on the researcher’s system. Further, because this project employs e-based collection techniques, data may be subject to access by third parties as a result of various security legislation now in place in many countries and thus the confidentiality and privacy of data cannot be guaranteed during web-based transmission. The study website will be hosted entirely on a local web server that is overseen by York University.

Questions About the Research?

If you have questions about the research in general or about your role in the study, please feel free to contact Dr. Melanie Baljko either by telephone at (416) 736-2100 ext. 33348 or by e-mail (mb@cse.yorku.ca). This research has received ethics review and approval by the Human Participants Review Sub-Committee, York University’s Ethics Review Board and conforms to the standards of the Canadian Tri-Council Research Ethics guidelines. If you have any questions about this process, or about your rights as a participant in the study, please contact the Sr. Manager & Policy Advisor for the Office of Research Ethics, 5th Floor, Kaneff Tower, York University (telephone 416-736-5914 or e-mail ore@yorku.ca).