Engaging Youth in the Bipolar Youth Action Project: Community-Based Participatory Research (Preprint)

Abstract

BACKGROUND This article describes methodological dimensions of Community-Based Participatory Research (CBPR) through a description of study design, youth engagement, and methods/processes in the co-creation of knowledge within a Canadian study, the Bipolar Youth Action Project. This collaborative partnership — carried out by a team composed of academic, community and youth partners — was designed to investigate self-management and wellness strategies for young adults living with bipolar disorder. OBJECTIVE In describing the opportunities and challenges of this collaboration, the authors reflect upon the process of involving youth with bipolar disorder in health research that concerns them, and share lessons learned. METHODS The project was conducted in multiple phases over a 2-year period: 1) grant-writing, with youth contributing to the process; 2) recruitment, in which 12 youth were selected and trained to help shape and conduct two research forums; 3) the first research forum, where additional youth were consulted about the strategies they apply to stay well (self-management strategies); 4) data analysis of forum 1 findings; 5) research forum 2, which consulted youth with bipolar disorder about knowledge translation of forum 1 findings; and 6) data analysis of forum 2 findings. Youth peer researchers with bipolar disorder were involved in a significant capacity at every stage in the process. RESULTS Seven youth peer researchers remained on the project from the recruitment phase until project end. They collaborated in the creation of two youth research forums that consulted youth with bipolar disorder on their self-management studies. CONCLUSIONS This article shares learnings from the process of partnering with youth with bipolar disorder in a CBPR-informed study.