This work has been developed alongside Northern Alberta Institute of Technology (NAIT) students as part of a final course project in the Bachelor of Technology (BTech) program.
Before participating, as part of the NAIT Research Ethics Board process, you must understand and consent to the following information.
Name of Research
Fetal Alcohol Spectrum Disorder (FASD): Strategies to Provide Guidance on Common Issues Encountered by Caregivers
School, Department
Northern Alberta Institute of Technology, Bachelor of Technology
Researcher, Title, Email
Robbie Seale, Sponsor, robbie.seale2@gmail.com
Dr. Melissa Dobson, Faculty Advisor & Co-Sponsor, mdobson@nait.ca
Anshika Dhawan, NAIT Student, teamredshoes1@gmail.com
Deena Sobon, NAIT Student, teamredshoes1@gmail.com
Malika Obeng, NAIT Student, teamredshoes1@gmail.com
Supervisor:
Dr. Melissa Dobson, Associate Chair, BTech
Title of the Project:
Fetal Alcohol Spectrum Disorder (FASD): Strategies to Provide Guidance on Common Issues Encountered by Caregivers
Sponsor
The project sponsor is Robbie Seale. There is no funding for the project.
Purpose of the Study
To gather stories from caregivers such as yourself impacted by Fetal Alcohol Spectrum Disorder. The stories, tips, tricks and strategies you share will be publicly displayed on a webpage to develop a resource for caregivers worldwide. This resource will be publicly available for anyone to use, meaning your stories could be shared or used for research beyond this site. Share your story and navigate the webpage to see what others have shared. You may come across an out-of-the-box strategy that will help develop more peace in your household!
Please note the webpage is currently not up and running. We are working hard to do so. For the time being, please share your stories and stay posted on the FASD Family Life Podcasts for the webpage opening information. Thank you for your time and participation in helping this resource come to life to benefit the FASD community worldwide!
What will I be asked to do?
If choosing to participate by agreeing to the terms and conditions outlined in this consent form, you will be directed to an online questionnaire. The survey contains questions guiding you through sharing stories, tips, tricks, challenges, successes and lessons you have learned through caregiving for FASD, along with several personal questions (please refer to the section below for more information).
Once all questions are answered, you will be prompted to agree with the public sharing of your information on the webpage. The only information that will be made public from the survey you fill out is your preferred pseudonym, story, and optional picture or video.
Informed consent is an ongoing process, meaning you may revoke consent and withdraw the information provided without any consequence at any time. This can be done by sending an email to robbie.seale2@gmail.com.
What type of personal information will be collected?
If you agree to participate, you must fill out all information fields. This includes personal information such as your full name and email address. This information will be private (please see the next section for more details).
Other information you will be asked for includes age group (For example, elementary, ages 6-13) and relationship status with whom you share the information about (For example, birth mom).
What happens to the information I provide?
Participation is entirely voluntary and confidential. No one except the researchers will have access to any identifying information you provide on the survey upon submission. The information you submit will be sent to the FASD Family Life team. It will be reviewed for eligibility and vetted to ensure only the consented-to information is uploaded to the webpage once it is active. If FASD Family Life requires edits such as spelling or grammar fixes, they will contact you to ensure the agreed-upon contents are shared. There will be no copyright on the contents. It will be publicly shared and, therefore, may be used by others.
Only entries that have consented to this consent form and agree with having the required information posted on the webpage will be used. All fields must be entered in except for the optional picture or video. No partial surveys will be retained. Medical advice or treatments will also not be accepted. These will all be considered during the review process before submission information becomes public on the webpage. Participants must be 18 years or older.
To protect and anonymize you, we will ask for your preferred pseudonym in the survey (For example, Robbie, Mom of 5, Canada). This will be displayed on the public webpage in place of your full name. If you wish not to have your loved ones' name publicly displayed when writing, please refer to them as the applicable relation (For example, "my son.")
Pictures and video fields are optional; however, if provided will only be posted publicly for five years before being removed.
The information collected will be stored securely. The team at FASD Family Life will download form submissions bi-weekly onto a password-encrypted flash drive that will be locked away in a cabinet to ensure the security and confidentiality of your personal information. It will be retained for five years or until the webpage is no longer active, whichever comes first. After five years, the flash drive will be destroyed and will no longer be linked to the story on the webpage.
If you choose to withdraw your contributions, you can contact robbie.seal2@gmail.com, and your data will be permanently erased from the flash drive and no longer be publicly available on the FASD success website.
Are there Risks or Benefits if I participate?
Participation in this research is voluntary and poses no risk to the participants.
The information obtained in this research aims to provide support and success to families and caregivers impacted by FASD worldwide.
If the memory recollection of your stories has triggered undue stress, please reach out to the local mental health supports in your community.
Suspected Abuse or Neglect
The sponsors are required to disclose suspected abuse or neglect of a child or adult in need of protection. Any suspected abuse or neglect will be reported to the necessary jurisdiction.
Questions/Concerns
If you have any further questions, comments or concerns about the form or want clarification regarding this research or your participation, please get in touch with the NAIT student team at teamredshoes1@gmail.com.
If you have any concerns about how you've been treated as a participant, please contact the Research Ethics Board Chair, Lisa Slywka, NAIT, reb@nait.ca.
We thank you for your valuable time and contributions.