CALL FOR PARTICIPANTS
Library of Lived Experience:
Neurodevelopmental Conditions in Childhood and Adolescence
Number of positions to fill: 20
Target audience
The CHILD-BRIGHT Network and BC SUPPORT Unit are seeking to consult with children and adolescents with neurodevelopmental conditions, as well as parents and caregivers of youth with neurodevelopmental conditions, to help inform the design and direction of a new virtual resource, the Library of Lived Experience.
Introduction to the project
The aim of this project is to build a unique virtual knowledge space shaped by people with firsthand experience of neurodevelopmental conditions and the health care system.
Still in the early planning stages, the Library of Lived Experience will be built using Tapestry, an open-source online learning tool developed at the University of British Columbia. It will feature testimonies of lived experience alongside clinical and academic information, allowing visitors to access both real-life wisdom and medical knowledge. The Library will also help make the health care system more responsive to the needs of youth with neurodevelopmental conditions and their families.
Participation
The project team is looking to meet remotely with interested individuals by phone or Zoom call for approximately 1.5 hours, including 30 minutes of preparation time. You will be asked to do the following:
Read a brief description of the researchers’ goals for the library
View an example of Tapestry
Read a series of questions and consider your possible responses
Share your thoughts and opinions on the library in a short discussion (1 hour max)
Compensation
Each participant will receive $50 (per family) for their time.
Requirements
To participate, you must meet the following criteria:
You’re a child or adolescent with a neurodevelopmental condition, or the parent or caregiver of such an individual.
You reside in BC or have resided in BC for most of your life.
You’re available to meet by phone or virtually (via Zoom).
Specific skills or experience that could be an asset
Experience accessing health resources in BC
Previous or current engagement with the health care system in BC
Principal Investigator
Dr. Dan Goldowitz, CHILD-BRIGHT Scientific Co-Director and Training & Capacity Building Program Co-Lead and Senior Scientist at the Centre for Molecular Medicine and Therapeutics (CMMT), BC Children’s Hospital Research Institute. Funded by the BC SUPPORT Unit/Michael Smith Health Research BC.
Project Coordinator
Teresa Hansen
If you’D like to PARTICIPATE IN THIS INITIATIVE, please CONTACT TERESA HANSEN
by JULY 31, 2024*:
*Please let us know if you require accommodation for your participation in this initiative. The project PI or coordinator should contact the Engagement Program for assistance.