Youth engagement in research: exploring training needs of youth with neurodevelopmental disabilities.

ABSTRACT:

Background

Authentic researcher-youth partnerships in patient-oriented research (POR) where the research responds to the needs expressed by youth themselves are essential to make research meaningful. While patient-oriented research (POR) is increasingly practiced, few training programs exist in Canada and none, to our knowledge, are tailored for youth with neurodevelopmental disabilities (NDD). Our primary objective was to explore the training needs of youth (ages 18-25) with NDD to enhance their knowledge, confidence, and skills as research partners. Our secondary objective was to identify the benefits and challenges of engaging youth with NDD in a POR approach.

Methods

Our team of four youth and one parent with lived experience [Youth Engagement in Research (YER) partners]

SUBMITTER: Dong SY 

PROVIDER: S-EPMC10332095 | biostudies-literature | 2023 Jul

REPOSITORIES: biostudies-literature