Concerns about the long and challenging road to a referral for an FASD diagnosis has inspired a New Brunswick research study.
Moncton-based researchers Carly Demont, Dr. Marie-Eve Laforest, and Dr. Nicole LeBlanc are leading the study alongside their research team, including patient-partners. Their study is entitled: ‘The Endless Waiting Game: A Patient-Researcher Co-led Qualitative Study on New Brunswick Youth’s Experiences Seeking a FASD Referral.’
The study is gathering information on the barriers local youth face in the healthcare system before receiving a referral for a FASD diagnosis. Using patient-oriented research, this approach integrates patients as equal partners in the team and ensures that the research remains relevant and grounded in real-world experiences.
Dr. Marie-Eve Laforest wrote about her experience using patient-oriented research in a recent blog for CanFASD, highlighting how patient- partners have enriched her experience on the project, and have enhanced the project itself.
This research project is a collaboration between Vitalité Health Network, the Maritime SPORT SUPPORT Unit (MSSU), the New Brunswick FASD Centre of Excellence and Université de Moncton. Their work on FASD is part of two interconnected studies that focus on the hidden struggles in referring youth for a FASD diagnosis and the pressing need for earlier intervention.
The first study, titled “Medical Diagnoses and Use of Health Resources Prior to FASD Diagnosis: A Retrospective Descriptive Study,” revealed that youth may see up to 10 different healthcare providers and receive multiple misdiagnoses before eventually being correctly diagnosed with FASD.
Annette Cormier from the New Brunswick FASD Centre of Excellence will showcase this work at the Atlantic Learning Exchange (ALE) Conference, The Power of Patients: Safety, Equity, and Engagement. We’re pleased to see FASD highlighted at such a significant conference!
Additionally, we’re excited to see how the project can extend beyond New Brunswick by also influencing change in the referral process in other parts of Canada. Congratulations to the research team on their fantastic work!
Related Content
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- Donate to the FASD Lived Experience Leadership Fund – support people with lived experience to participate in research.
- Diagnosis – learn more about FASD diagnosis in Canada.
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