Abstract
BACKGROUND: Young people face persistent challenges in accessing mental health and substance use health (MHSU) services, which have been further complicated by the COVID-19 pandemic, and are particularly pronounced among marginalized populations. We sought to understand how young people navigate MHSU services since the pandemic, focusing on their awareness of and access to care. METHODS: Our project uses participatory research approaches and is comprised of two phases. This manuscript describes Phase 1, where five young people participated as research partners, informing study design and implementation. We conducted five virtual focus groups with a larger sample of young people from Ontario with MHSU lived experience, prioritizing participants from underrepresented communities. Focus groups explored their service awareness, access experiences, and improvement suggestions. Discussions were audio-recorded, transcribed, and thematically analyzed. Phase 2 will involve co-designing resources for young people based on Phase 1 findings. RESULTS: Our analysis of forty participants identified six interconnected domain themes (relationships and guidance, preferences and choice, convenience, self-directed information seeking, established sources, and system constraints), and fifteen sub-themes, spanning three dimensions of MHSU services (awareness, access, and improvements). We found that young people relied on informal networks (family/friends) and healthcare providers for MHSU service information and access, with trust being essential. They desired both choice in their provider and delivery method, plus the ability to research options independently before making decisions with others. While they primarily got service information from healthcare providers, online platforms, and community organizations, finding comprehensive, reliable information remained challenging. Barriers such as costs, wait times, location, and discrimination highlighted the need for affordable, accessible, and culturally responsive care to meet their diverse needs. CONCLUSIONS: This study revealed key insights about post-pandemic MHSU service awareness and access for young people. Participants demonstrated desires for both autonomy in service selection and guidance from trusted sources, suggesting a supported decision-making model. Recommended service improvements include centralized information resources, stronger informal referral networks, culturally responsive services and flexible delivery options. Partnership with young people throughout the research process yielded valuable perspectives that enhanced study validity. These findings will inform Phase 2-the co-design of resources addressing the information gaps and structural barriers identified by participants.