Written by Cara Nania, member of the 2024 CanFASD Trainee Program.
My name is Cara Nania and I am a PhD student in the School and Applied Child Psychology program at the University of Calgary. As part of the 2024 CanFASD trainee program, I am outlining my proposed doctoral research that focuses on the pain experiences of youth with fetal alcohol spectrum disorder (FASD).
The pain experience of youth with neurodevelopmental disabilities (NDDs) is a largely misunderstood and underrepresented area of research. As a clinician-scientist, I aspire to develop a unique area of research on the pain experiences of youth with NDDs, and more specifically, youth with FASD, and integrate this research into clinical practice. My ultimate goal with this research is to inform advances in clinical practice by incorporating pain assessment and treatment into standard interventions for youth with NDDs.
My Proposed Research
Functional deficits in youth with FASD are often thought to only be caused by prenatal alcohol exposure. However, we know that there are many other contributing factors. Pain is a universal experience that can lead to mental health issues, academic and social challenges, and a reduced quality of life. These are issues that children with FASD often experience. Despite the increasing amount of research on FASD in general, there has been little examination to date into the rates and impact of pain in this population. In a recent systematic review by our team (Nania et al., 2023), we found only two studies that have ever examined the experience of pain in people with FASD. These studies demonstrated that youth exposed to alcohol prenatally have higher rates of headaches compared to non-exposed youth, and that infants exposed to alcohol have altered biobehavioural reactivity to a painful experience.
Given that FASD impacts more Canadian youth than other neurodevelopmental disabilities, pain may play a key role in the already complex neurobehavioural profiles of youth with FASD. My proposed doctoral research will be the first to characterize pain and mental health issues in youth with FASD. Youth and their parents will be asked to complete questionnaires assessing youth pain outcomes (i.e., frequency, intensity, and interference), depression, anxiety, and PTSD symptoms. They will also come to UCalgary for a laboratory visit where youth will participate in an experimental pain task. Acute pain and distress behaviours will be assessed by coding various aspects of the video recorded pain task. I am currently in the process of completing my research proposal and submitting ethics. Data collection will begin in the fall of 2025, following a successful candidacy exam.
Summary
Youth with FASD are more likely to experience pain than their neurotypical peers, yet their pain is more likely to be overlooked and/or misinterpreted. The proposed study will be the first to examine pain, trauma, and mental health in youth with FASD. Findings will directly inform treatment-tailoring approaches to improve outcomes for youth with FASD and offset a trajectory of increased psychopathology and disability into adulthood. This project will drive forward research priorities and clinical practice in youth with FASD.
Upon graduation, Cara worked as a Clinical Research Coordinator for Dr. Melanie Noel where she helped determine the various biopsychosocial factors surrounding acute (surgical) and chronic pain in youth. Within the ENHANCE lab, Cara is interested in characterizing the pain experience of youth with FASD. Cara also completed 5 years as a varsity wrestler at the University of Calgary and continues to coach for the University.