‘We need transparency and communication to build trust’: exploring access to primary care services for young adults through community-based youth participatory action research and group concept mapping

The transition from adolescence to young adulthood presents an opportunity for health promotion and illness prevention. However, the transition from pediatric to adult healthcare services is complex and exposes systemic vulnerabilities in the healthcare system, particularly in access to care for marginalized youth. There exist high rates of discontinuity in primary care for young adults, amplifying health disparities. In the final stages of the transition process, the transfer to adult healthcare services is critical to continuity of care. There is a need to better understand and address access to care issues for young adults. This study explores barriers and facilitators to access to primary care for young adults in an urban Latinx community through community-based participatory research (CBPR) and youth participatory action research (YPAR). This study was developed in partnership with a hospital-affiliated community-based youth program and youth research leaders. Group concept mapping methodology was used to structure discussions with the organization’s youth and staff members. Results indicate that the highest priority factors for young adults in seeking primary care are related to the culture of the clinical setting, including intangible factors such as “respect by front desk staff” and “relationship with provider.” These factors are also perceived by young adults to be more feasible targets for improvement as opposed to, for example, insurance coverage. The findings provide a roadmap to advocate for interventions to transform young adult services within the healthcare system as well as a framework for integrating youth voices and leadership into the research process.