How do we define neurodiverse?
Why do I need to be audio recorded?
What if I want to stop my interview?
What will be done with my information?
Will my information be kept confidential?
What are the risks to participating?
Has this study received ethics clearance?
Will I receive anything for participation?
Who should I contact if I have more questions regarding this study?
For this study we are looking to talk to people who identify with either ADHD or ASD and who actively travel (via either, walking, cycling, transit, or driving). Both those who have been professionally diagnosed and self-diagnosed are eligible. In phase 1, we are looking to speak to anyone who is above 18 years of age and lives in Ontario. In phase 2, we are looking to engage with university of waterloo students over the age of 18.
How do we define ‘neurodiverse’?
Neurodiversity is a relatively new term that emerged to describe a range of different diagnoses, including Autism Spectrum Disorder (ASD), Attention Deficit and Hyperactivity Disorder (ADHD), and other learning disabilities. For the purpose of this study, we are focusing on both ADHD and ASD, and how some of their shared symptoms, such as sensory experiences, and executive (dis)function can impact transportation behaviours and choices.
Participation in this study is entirely voluntary. The findings of this research will enhance our knowledge on transportation behaviours of neurodiverse populations, and how to plan more inclusive streetscapes and mobility options. Findings of this work will be shared to both academic researchers and practicing urban planning professionals. There is no personal benefit to participation.
For both Phase 1 and Phase 2 you will be asked to provide your verbal consent prior to the start of the interview by answering the following questions:
- Do you agree to participate in this research study?
- Do you agree that the interview can be audio-recorded?
- Do you agree that anonymous quotations can be used in reports. be used in publications and/or presentations that arise from this research. These quotes will not be attributed to any individual participant.
Why do I need to be audio-recorded?
This study will be audio recorded to ensure accuracy in the analysis of what you share. The audio-recording will help the researcher identify key trends and findings from the interviews. If you do not want to be audio recorded, please let the researcher know prior to the interview commencing.
What if I want to stop my interview?
You can stop your interview at any given time. If you choose to stop your interview, the recording will be deleted, and no anonymous quotes from your interview will be used in any subsequent publications and/or presentations that arise from this work. You can also withdraw your participation after the completion of your interview. Requests for withdraws must be received by the researcher within 3 weeks of the interview completion.
What will be done with my information?
The interviews will be audio-recorded and transcribed verbatim. Excerpts from the interview discussion may be quoted in publications and/or presentations that arise from this research. These quotes will not be attributed to any individual participant.
After the completion of your interview, the researcher will follow-up with a summary of key takeaways from your interview. At this time, you will be able to correct or amend any information from your interview.
Will my information be kept confidential?
Only the researchers will have access to the names of the participants. Your identity will be kept confidential by assigning ID codes to the transcriptions, so they do not contain any identifying information. Audio files will be deleted once transcribed. The list of names will be deleted upon study completion when they are no longer required to authenticate the results. For the duration of this study, all interview transcripts will be securely stored on team members’ password-protected computers and in an encrypted cloud-based data management platform. After seven years, all information collected from the study will be deleted.
What are the risks to participating?
As this research will be focused on your personal mobility experiences, there is some risk to the questions evoking negative emotions and/or memories. If a question, or the discussion, makes you uncomfortable, you can choose not to answer. You can stop participating in the interview at any time. If you choose to withdraw, your data will be deleted.
In phase 1, the interview will be conducted over an online platform, Microsoft Teams. Microsoft Teams has implemented technical, administrative, and physical safeguards to protect the information provided via the Services from loss, misuse, and unauthorized access, disclosure, alteration, or destruction. However, no Internet transmission is ever fully secure or error free.
As phase 2 involves walking in community, there are some additional risks to participating. Firstly, participants will be required to walk along various types of streets for 1.5 hours and make crossings at intersections between the University of Waterloo and Uptown Waterloo. To mitigate risks to the walk, a series of precautions will be followed: crossings will only occur when prompted by the signalized intersection, and participants will only walk on the dedicated pedestrian infrastructure. If at any time a portion of the pre-planned route feels unsafe or uncomfortable to a participant, the interview will be stopped, and an alternative route will be sought. If you become tired, or feel fatigue, the interview will be stopped. The researcher will come equipped with water bottles for any participant who needs hydration during the walk. The researcher will also have a cellphone in case of emergencies.
You will not be identified by name in any publications or presentations that arise from this phase of research. However, when out in the community, there is some risk to being identified and privacy cannot be guaranteed.
Has this study obtained ethics clearance?
This study has been reviewed and received ethics clearance through a University of Waterloo Research Ethics Board (REB #45403). If you have questions for the Board, contact the Office of Research Ethics, toll-free at 1-833-643-2379 (Canada and USA), 1-519-888-4440, or reb@uwaterloo.ca.
Will I receive anything for participation?
Participants in Phase 1 will not receive any financial remuneration.
Participants who partake in the walk-alongs (Phase 2) will receive an honorarium of $40 in the form of a pre-loaded VISA gift card for their time and effort invested in the study. The amount received is taxable. It is your responsibility to report this amount for income tax purposes.
Who should I contact if I have any other questions regarding the study?
If you have any questions regarding this study, or would like additional information to assist you in reaching a decision about participation, please contact Samantha Leger at sjleger@uwaterloo.ca or Dr. Jennifer Dean at 519-888-4567 ext. 49107 or by email at jennifer.dean@uwaterloo.ca