Credible, centralized, safe, and stigma-free: What youth with bipolar disorder want when seeking health information online

Kirsten Noack, Nusha Balram Elliott, Eugenia Canas, Kathleen Lane, Andrea Paquette, Bipolar Youth Action Group n/a, Jeanne-Michelle Lavigne, Erin Michalak

Abstract


Objective: The Bipolar Youth Action Project (BYAP) is a two-year, youth-driven study. Our research explored: 1) bipolar disorder (BD) self-management strategies that are effective for Vancouver Island youth living with BD, and 2) the methods preferred by youth participants for sharing these strategies with their communities and support circles.

Methods: The study employed a group of seven Youth Action Group (YAG) members who live with BD to work with the research team in a Community-Based Participatory Research (CBPR) framework. In collaboration, we designed and executed two Vancouver Island-based Research Forums, inviting youth with BD from the wider community to share their knowledge about self-management. Qualitative (focus group), consultation (World Café), and arts-based (graphic facilitation) methods were utilized. Qualitative findings underwent thematic analysis within a CBPR orientation.

Results: 29 youth participants with BD were recruited to the two Forums.  Focus group findings identified five overarching themes, which included: ‘Sources of self-management strategies’. Half of the focus group participants described how they used online sources to either learn more about self-management or strengthen their social support networks. World Café consultations indicated that, while the sample primarily used online sources for mental health information, they experienced significant barriers, namely stigma and difficulty finding credible, safe, and evidence-informed information.

Conclusion: Youth engagement in BD research and knowledge exchange is feasible. Moreover, youth with BD clearly have constructive and important insights to share which, if harnessed, will help the research community to develop appropriate, effective and safe online mental health spaces for future generations.

(Abstract word count: 249/250) 


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