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 person from the university you will be talking with to explain any words or information that you do not clearly understand.

INVESTIGATORS:

This study is a collaboration between Brandon University, Manitoba Metis Federation-Southwest Region and Brandon Friendship Centre. The principal investigator and director on this project is:

Dr. Patty Douglas

Faculty of Education

Brandon University

270-18th Street

Brandon, MB

douglasp@brandonu.ca

204-727-8476

This research is funded by MITACS Accelerate Grant MB-ISED Special Indigenous Funding. If you have any questions or concerns about the research, feel free to contact Patty Douglas (principal investigator) at douglasp@brandonu.ca, 204-727-7486. 

Purpose

This study is designed to better understand educational belonging and inclusion for Indigenous autistic students. We are working together with participants and our partners, the Brandon Friendship Centre and Manitoba Metis Federation Southwest Region to better understand and improve educational experiences from the perspective of Indigenous people with autism and those that work with and care about them, including families and educators. We are aware that many Indigenous people may prefer the language of gifts rather than disability or autism and that some people choose to self-identify for a variety of reasons including difficulty accessing a diagnosis or feeling they have been mislabeled. You do not need a diagnosis to take part in this study. 

The aim of the study is to improve school experiences of inclusion and school outcomes for autistic Indigenous and their supporters. Results from this study will be used to work with educators and policy makers to challenge ideas about autism as a deficit and better understand what it takes to be inclusive of Indigenous autistic students or students who identify as neurodiverse of as students with gifts.

You are eligible to participate if you identify or self-identify as an Indigenous autistic person, or person with gifts, or if you are an Indigenous or non-Indigenous educator or family member. You are welcome to bring a trusted support person, or family member(s) with you to the workshop, and to let us know what we can do to enable access for you.

What We Will Do

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. The research team has been trained in digital storytelling facilitation. This workshop will have 8-10 participants who 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.

During the process, we will try 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 independently or with facilitators and other storytellers or family members 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 sessions 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 the research team to share it. Should you elect to share broadly, your story may be part of a selection of films to be shared with educators aimed at challenging stereotypes about autism, Indigeneity and educational inclusion. We aim to screen the films in professional development forums with educators, film festivals, community events such as Orange Shirt Day and to create curriculum resources using the films. Depending on your level of consent, films may be archived on our project website, in secure databases with our community partners for future use by Indigenous communities, in the Brandon University online repository for future use by educators and researchers and on a secure password protected hard drive stored in the research team’s office at Brandon University.

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 at school upsetting or re-traumatizing. 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 speak with an Elder associated with the project, with the Brandon Friendship Center wellness counsellor Nellie Kopitz 204-726-1112 who is supporting this workshop, or to contact a local helpline such as the Klinic https://klinic.mb.ca/crisis-support/ 204-786-8686. We also have a registered social worker who is part of our workshop team you can ask to speak to and who can help connect you with resources in your community.

Incentive for Participation

You will receive an honorarium of $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, or if you receive services from our community partner organizations.   

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, as well as the potential for educational and policy change related to autism, Indigenous approaches and inclusion. Some people find it healing or empowering to share their story in the context of a project that supports the well-being of Indigenous and autistic people.   

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 (community talks and events, academic talks and papers), however your name and other identifying information will not be used or revealed unless you give us consent. 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, contact forms) that includes participants’ real names will be digitally stored in a password-protected file on Brandon University’s secure institutional storage (MS Teams via One Drive); (4) Facilitators, artist supports and support persons will be present at the workshop. They will sign a confidentiality agreement; (5) Transcriptionists and research assistants (the people who will view your video, caption and transcribe it) will sign a confidentiality form that will require them to keep all names and other potential identifying information confidential.

Your digital story may contain identifying information including images that identify you and your voiceover, though it does not have to. 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 film 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 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.

This project has been reviewed and approved by the Brandon University Research Ethics Committee.

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. All information about you will be securely destroyed if you choose to withdraw from the study, though published materials cannot be redacted.                       

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   

Do not sign this consent form unless you have had a chance to ask questions and have received satisfactory answers to all your questions.

         

Statement of Consent           

I have read this consent form. I have had the opportunity to discuss this research study with Dr. Patty Douglas and/or the research team. I have had my questions answered by them in language I understand. The risks and benefits have been explained to me. I believe that I have not been unduly influenced by any study team member to participate in the research study by any statements or implied statements. Any relationship (such as employer, supervisor or family member) I may have with the study team has not affected my decision to participate. I understand that I will be given a copy of this consent form after signing it. I understand that my participation in this study is voluntary and that I may choose to withdraw at any time. I freely agree to participate in this research study.                     

I understand that information regarding my personal identity will be kept confidential, but that absolute confidentiality is not guaranteed.