RESEARCH PARTICIPANT INFORMATION AND CONSENT FORM –
Digital Storytelling Workshop
Study Title: Re•Storying Autism in Education: Advancing the Cultures and Practices of Inclusion
You are being asked to participate in a research study. Please take your time to review this consent form and discuss any questions you may have. You may take your time to make your decision about participating in this study and you may discuss it with your friends or family. This consent form may contain unfamiliar words. Please ask the interviewer to explain any words or information that you do not clearly understand. This consent form is available to complete online here, or can be provided to you as a PDF upon request.
INVESTIGATORS:
This study is a collaboration between Brandon University, University of Guelph, University of Waterloo and York University. The principal investigator on this project is:
Dr. Patty Douglas
Faculty of Education
Brandon University
270-18th Street
Brandon, MB
douglasp@brandonu.ca
204-727-8476
The co-investigators on this project are:
| Co-Investigators |
Contact Information |
| Dr. Carla Rice |
Phone: 519-824-4120 x 54942
Email: carlar@uoguelph.ca
Address: MacDonald Institute, Room 149, University of Guelph, 68 MacDonald St., Guelph, ON |
| Dr. Rachel Herron |
Phone: 204-727-9771
Email: herronr@brandonu.ca
Address: 4-08 Brodie Building, 270-18th Street, Brandon, MB
|
| Dr. Margaret Gibson |
Phone: 519-884-4404 x 28620
Email:margaret.gibson@uwaterloo.ca
Address: REN 1422, 240 Westmount Rd. N., Waterloo, ON |
| Dr. Gillian Parekh |
Email: parekhg@edu.yorku.ca
Address: 262, Winters College, York University, 4700 Keele Street, Toronto, ON |
This research is funded by the Social Sciences and Humanities Research Council of Canada Insight Grant # 435-2019-0129. If you have any questions or concerns about the research, feel free to contact Patty Douglas (principal investigator) at douglasp@brandonu.ca, 204-727-8476.
Purpose of the Study
This study is designed to better understand educational belonging and exclusion for autistic people. We are particularly interested in working collaboratively to better understand educational experiences from the perspective of persons with autism and those that work with and care about them, including families and teachers. The ultimate aim of the research is to enhance educational inclusion. Results from this study will be used to work with educators and policy makers to challenge deficit models of autism and better understand the conditions necessary to achieve inclusion.
You are eligible to participate if you identify as an autistic person and are 16 years of age or over, or if you are an educator or family member. You are welcome to bring a trusted support person to the digital storytelling workshop and to let us know what we can do to provide access.
Study Procedures
The online digital storytelling workshop involves further exploring the story you shared in your interview in a 4-week workshop (2 hours of group sessions per week, with 1-1 and small group options available with facilitators between sessions), during which you will produce your own digital story (short 2-3 minute film) about your experiences. I have been trained in digital storytelling facilitation and will run 3-4 workshops with 12-15 people each, in which participants will be guided through using video editing software (WeVideo) to make a story with video, photo, voice, music, and more that represents a part of your experience. You may also be asked to complete a short survey (5-10 questions) about your digital storytelling experience after the workshop is complete on google forms.
During the process, we will endeavor to make the online space as comfortable, private, and accommodating as possible for you. At the beginning of the workshop, we will spend time setting up the terms of the space – what storytellers need to make the space as comfortable and accessible as possible. Storytellers have different needs, and you will have the choice of working largely independently or with facilitators and other storytellers if you wish. You are under no obligation to share your story with anyone. You are welcome to turn your camera on and off during the Zoom calls and to move around to make yourself comfortable. All storytellers will be asked not to discuss the content of the films outside of the workshop space, and each participant will be asked what (if any) feedback they wish to receive from others during the workshop.
After the digital storytelling workshops, you will keep a copy of your film and choose how much you wish to allow me to share it. Should you elect to share broadly, your story will be part of a selection of films to be shared with educators aimed at challenging stereotypes about autism and educational inclusion. We aim to screen the films at school boards and community arts and autism organizations and to create curriculum resources using the films to be archived in the Brandon University online repository for future use by educators, researchers and members of the public interested in enhancing inclusion and access to education.
Options for sharing your video are listed at the end of this consent form. You will be invited to select options now and to re-visit your decision at the end of the workshop, after you have made your film, to check if you’d like to change your selection.
You can stop participating at any time. There are no consequences of withdrawal from the study. If you decide to withdraw and not complete the workshop, you will still be given your honorarium.
If you wish to see a summary of your film and provide feedback, we can make this available to you. Please indicate in the signature section below if you would like to be contacted for this purpose.
Risks and Discomforts
The risks for participating in this study are minimal. Some people find talking about their experiences of educational exclusion upsetting. The workshop facilitators will check in about how participants are feeling at several points during the workshop, and if at any time you feel upset or uncomfortable please let the facilitators know and if needed you may wish to contact a local helpline such as the Klinic (https://klinic.mb.ca/crisis-support/, phone: (204) 786-8686) in Manitoba, Canada, Te Au Māori (https://teaumaori.com/support/, Free call or text 1737), or Lifeline in Aotearoa (New Zealand) (https://www.lifeline.org.nz, phone: 0800 543 354). We also have a registered social worker and/or child and youth worker who is part of our workshop team you can ask to speak to.
Incentive for Participation
You will receive an honorarium of NZ$250 ($225 CAD) for participating in this study. You will be asked to sign a form indicating that you have received this honorarium. The amount received is taxable. It is your responsibility to report this amount for income tax purposes.
Costs
You will incur no costs by participating in this study. Your decision to take part, or not to take part, in the study will pose no cost or benefit to you if you have a teacher-student relationship with a member of the research team, including additional credit or grades in courses.
Benefits
There may or may not be direct benefit to you from participating in this study. A potential benefit from participating in the study is contributing to societal understanding of educational belonging or exclusion, as well as the potential for educational and policy change related to inclusion. Your decision to take part, or not to take part, in the study will pose no cost or benefit to you if you have a teacher-student relationship with a member of the research team, including additional credit or grades in courses.
Confidentiality
Confidentiality cannot be guaranteed given that you will be taking part in a workshop with others. While we will ask that participants in the workshop do not discuss what happens in the workshop space (including the content of the story and information disclosed in discussions both formal and informal), we cannot guarantee that they will do so.
Information gathered in this research study may be published or presented in public forums, however your name and other identifying information will not be used or revealed. Despite efforts to keep your personal information confidential, absolute confidentiality cannot be guaranteed. Your personal information may be disclosed if required by law. Given the focus of this study, it is highly unlikely that the researcher will face legal obligation to disclose confidential information. Researchers are subject to obligation to report information to authorities to protect the health or life of a participant or a third party.
When information is transmitted over the internet, e.g. by Zoom, WeVideo or email, privacy cannot be guaranteed. There is always a risk your responses may be intercepted by a third party (e.g., government agencies, hackers). The researchers will not collect or use internet protocol (IP) addresses or other information which could link your participation to your computer or electronic device without first informing you.
Threats to confidentiality will be minimized in the following ways: (1) Upon recruitment, participants will be assigned a participant number; (2) You will have the opportunity to select a pseudonym (fake name) and you will be referred to by this pseudonym in all presentations and publications if desired; (3) All information (e.g., consent forms, surveys) that includes participants’ real names will be digitally stored on a protected research computer in a secure fashion; (4) Facilitators and artist supporters will be present at the workshop. They will sign a confidentiality agreement.
Your digital story may contain identifying information including images that identify you and your voiceover. It is up to you how much you wish to include in your film. You can choose how much and where you wish us to show your film, given that you may be recognizable, and whether you wish to include your real name or use a pseudonym. Verbatim quotes from your story may be used in write-ups related to the project; if they are used and you do not wish to be identified, they will use your pseudonym. Videos will be retained by the research team indefinitely, unless you contact us expressly asking for them to be destroyed/not used anymore. A master list of storytellers will be created and retained indefinitely alongside the films in order to track which consents you have offered for screening your story. Only the research team will have access to this information for the purposes of ongoing consent.
Brandon University Research Ethics Committee may review records related to the study for quality assurance purposes.
This project has been reviewed and approved by the Research Ethics Boards at Brandon University, University of Guelph, York University and the University of Waterloo. It has also received low risk ethics approval from Massey University.
Voluntary Participation/Withdrawal from the Study
Your decision to take part in this study is voluntary. You may refuse to participate or you may withdraw from the study at any time. Your decision not to participate or to withdraw from the study will not affect your relationship with the researchers on the study and you will still receive the honorarium. Any and all information about you will be securely destroyed if you choose to withdraw from the study.
Questions
You are free to ask any questions that you may have about your treatment and your rights as a research participant. If any questions come up during or after the study, you can contact the principal investigator Dr. Patty Douglas (204-727-7486 douglasp@brandonu.ca).
For questions about your rights as a research participant, you may contact the Brandon University Research Ethics Committee:
Brandon University Research Ethics Committee
Phone: 204-727-9712
Email: burec@brandonu.ca
This project has been evaluated by peer review and judged to be low risk. Consequently it has not been reviewed by one of the University's Human Ethics Committees. The researcher(s) named in this document are responsible for the ethical conduct of this research. If you have any concerns about the conduct of this research that you want to raise with someone other than the researcher(s), please contact Professor Craig Johnson, Director (Research Ethics), email humanethics@massey.ac.nz.
Do not sign this consent form unless you have had a chance to ask questions and have received satisfactory answers to all of your questions.