CHILD-BRIGHT’s Engagement Council: Partners with Lived and Living Experience (EC: PWLE) is composed of parents and caregivers of children and youth with brain-based developmental disabilities, as well as other knowledge users. It provides guidance to CHILD-BRIGHT research teams on embedding partners with lived and living experience (PWLEs) in all network projects and activities, to ensure authentic engagement.
EC: PWLE members draw on their lived and living experience and knowledge to fulfill this mandate, which involves providing input on research protocols, recruitment strategies, research intervention procedures, communication plans, and knowledge translation activities and outputs, such as co-authorship of research papers, as well as sharing their perspectives in network reports and blog posts.
In addition to offering this service to CHILD-BRIGHT-funded researchers, the EC: PWLE members are now offering a consultation service to Canadian researchers working on childhood disability research projects not funded by CHILD-BRIGHT via the CHILD-BRIGHT Lived and Living Experience Consultation Service.
Why engage our EC: PWLE members? They can:
Ensure your research question is relevant to children and youth with brain-based developmental disabilities and their families
Help develop consent forms, questionnaires, and other materials in a way that makes them easier to understand, makes sense to children, youth, and families, and is considerate of their needs
Help design the intervention in a way that is feasible and acceptable to children and youth with brain-based developmental disabilities and to health care providers, and therefore easier to apply in the real world
Help ensure the outcomes of greatest importance to children and youth with brain-based developmental disabilities are the ones measured
And more! Learn how to request a consultation today.
Our members’ consultation capacity
Depending on the project in question, one or many EC: PWLE members may be available to offer input on your research project: