Share Your Story!

The project’s purpose is to learn more about the care processes for children suspected of or diagnosed with FASD. This involves learning about how children are identified, evaluated, diagnosed, and treated, including the medical services and other help they get. We want to better understand what delays exist in getting diagnosed or treated and what might cause these delays. What we learn will help us identify possible ways to make this process better for families.

If you decide to take part, you will have an interview with 1-2 members of the project team. This discussion will last approximately 60-90 minutes. You can either meet the team in person or talk to us over a video call. During the interview, we will ask you questions about your journey to get your child evaluated for FASD. We’re interested in hearing your story, including what prompted you to seek help, the steps you took and the things you went through along the way. We’ll also ask about any problems you faced, the types of services you were offered or received and any ideas you have about how to make this process better. With your permission, we will record the interview and take notes. This is so we can refer to them when we are summarizing the information.

*Please note that due to limited resources, not everyone who signs up will be invited to participate in an interview. We appreciate your understanding and interest in supporting this project.

We take your privacy very seriously. Any personal information, including your name, will be kept strictly confidential. Only the team members directly involved in the project will have access to any of this information. Here’s how we’ll protect your privacy:

• Strict Confidentiality: Your personal details, such as your name, will never be shared with anyone outside the project team.
• Deidentification: Any information that could identify you will be carefully removed from any transcriptions or other notes.
• Secure Storage: All recordings and other notes will be stored in a secure location that can only be accessed by authorized project members. If we record the interview, the recording will be deleted as soon as we’ve created accurate transcriptions of the information.
• Anonymous Reporting: Papers or reports about this project will never include personal information that could reveal who participated.

We will closely examine the stories and experiences shared by parents and caregivers to identify important patterns and ideas through a process called thematic analysis. By identifying these common themes, we can learn what’s important to a lot of families, and what challenges are commonly encountered, and gain insights into different perspectives. When we put together what we learn from everyone, we can generate a more comprehensive view of FASD diagnosis and care pathways and better pinpoint areas for improvement.

Your participation is entirely voluntary. You can withdraw at any time if you change your mind. Your decision to participate or not will not impact the care or services you receive from Proof Alliance or any other organizations. You also have complete control over the information you choose to share. If there are any questions that you’re not comfortable answering, you are welcome to skip them. Your comfort and consent are important to us. Importantly, there are no negative consequences if you decide to withdraw or choose not to answer specific questions. Your decision will be respected and will not result in any penalties or difficulties.

We are committed to sharing the findings of our project in a meaningful and transparent manner. We want to make sure the insights gained from this project reach a broad range of stakeholders, including healthcare providers, policy makers, FASD support and advocacy groups and the wider community. This could include sharing information through reports, articles or presentations that highlight important findings. We’re committed to ensuring your participation leads to meaningful outcomes.

If you have gone through the FASD evaluation process we welcome your participation, even if your child did not receive a diagnosis of FASD. We want to understand the diverse journeys experienced by parents and caregivers. Even if your child was not diagnosed, your story can shed light on the different paths families might experience and help us to identify areas for improvement in the diagnostic process.

If you’re interested in participating, you can start by filling out a brief online survey here.

The survey is a quick way to help confirm that your experiences align with the focus of the project. If you’re found to be eligible after completing the survey, we’ll ask for some basic information and your consent to participate. This ensures you’re comfortable and informed about your involvement. Once you’ve provided your information and consent, you’ll be added to the pool of potential participants from which we will select individuals to join. If you are selected, a member of our team will reach out to you to provide more details, answer any questions and discuss the next steps.