Using Patient-Oriented Research (POR) strategies, the creation of the Strongest Families Neurodevelopmental Program has involved families as expert advisors in all phases of the project. Our Parent Advisory Committee of 14 parents of children with neurodevelopmental disabilities have taken an active role in the research via online meetings, surveys, face-to-face meetings and ongoing discussions. Unique perspectives from parents have helped shape the Strongest Families Neurodevelopmental program into a resource that will be relevant and helpful to families like their own.
Who are Parent Advisors?
Parent Advisors are real parents. No other experience is necessary. We want to involve parents who live in different places across the country and from all walks of life.
What do Parent Advisors Do?
Our advisors provide feedback, opinions and recommendations on what the online program should look like, help us to connect with families and/or health care providers who are interested in testing the program and to help spread the word about the project.
Find out more about Patient Oriented Research here.
“Accessibility and barriers are particularly pronounced for ‘invisible’ disabilities and delays – particularly for families without knowledge, language, or resources. Calling your program ‘Strongest Families’ is so suiting!”
-Kari Welsh, Parent Advisor
“Shelley has 20 years of experience as a counsellor and I’m a Special Education teacher. We have three children, all with Fetal Alcohol Spectrum Disorder, (FASD), Mild Intellectual Disability (MID) and Attention Deficit Hyperactivity Disorder (ADHD). We understand the challenges of finding support in a rural setting, and the importance of being strong advocate voices for those in need.”
-Rob and Shelley More, Parent Advisors