Healthcare Experiences Children

Bridging the Gap: A Qualitative Evaluation of Health Care Experienced by Autistic Children in Alberta 

Dear Parent or Caregiver, 

You are warmly invited to participate in a University of Alberta research study focused on improving the long-term healthcare journey for autistic children and youth across the province. 

Why is this study being done? 

Autistic children face higher rates of co-occurring physical and mental health conditions, yet often lack a consistent “medical home” to help coordinate their long-term care. Families often need to navigate the healthcare environment that presents unique challenges for autistic children. 

What is our goal? 

We want to hear directly from you to identify “pinch points” in clinical settings, to uncover what is working well, and co-design meaningful healthcare quality indicators that prioritize your child’s strengths and needs. 

Who can participate? 

We are looking to speak with parents or caregivers of autistic children who have accessed pediatric, ambulatory, emergency, or long-term medical care within Alberta. We are purposefully seeking a diverse group of families from various cultural backgrounds and developmental complexities. 

What is involved? 

A casual conversation! If you choose to participate, you will take part in a 45-60 minute semi-structured interview over Zoom with our research team. 

Important notes: 

● Your comfort matters! You are welcome to share only what you are comfortable with. You can pause the interview, skip any question, or stop participating at any time without any impact on your child's medical care. 

● This is a research study! The interviewer will be a researcher, and not a clinician, and cannot provide any individualized medical or clinical guidance on behalf of your healthcare providers 

How will your story make a difference? 

Your lived experiences will directly shape policy briefs for Alberta Health Services and contribute to the National Autism Strategy. By sharing your journey, you are helping us build a more equitable, accessible, and neuro-affirming healthcare system for families across Alberta. 

Interested in Participating? Please contact study coordinator Nicholas Piroddi at piroddi@ualberta.ca directly, or fill out the “Request to Contact” form and return it to your provider, and we will be in touch! 

Note: this study is being conducted under the supervision of Dr. Lonnie Zwaigenbaum at the University of Alberta, and has been approved by the University of Alberta Research Ethics Board (Pro00165847)