Program Participants As Partners: Co-Creating Tools to Promote Culturally Responsive Shared Decision Making Among Young People of Color Receiving Coordinated Specialty Care

Background and Purpose: Shared Decision Making (SDM), a critical model in health communication, enhances service user engagement in treatment decisions. However, existing SDM training lacks cultural responsiveness, potentially leading providers to overlook the needs of Black, Indigenous, and People of Color (BIPOC) service users.The purpose of this study is to co-develop two culturally responsive e-learning modules focused on addressing racial inequities within SDM with BIPOC service users and family members receiving Coordinated Specialty Care (CSC) for early psychosis.

Method: Researchers partnered with an Expert Steering Committee (ESC) comprised of CSC participants, family members, providers, and staff (e.g., youth coordinators, researchers, CSC trainers) who identify as BIPOC (N=13). The ESC co-developed all aspects of the project including extracting content for module story boards, participating in video testimonial shoots, and iteratively revising module prototypes. Surveys and focus groups elicited ESC feedback at each stage of the project to ensure that the final modules aligned with the ESC’s goals and objectives. Multimedia tools facilitated remote stakeholder engagement.

Results: Over 2 years, the ESC convened over 40 times and maintained high engagement (mean ESC meeting size was N = 10, 77%). Survey and focus group results indicated nearly all ESC members enjoyed participating in the project, felt empowered seeing their feedback incorporated into the modules, and believed the project met its stated aims. The final e-learning modules centered on first-person testimonials featuring BIPOC youth and providers, emphasizing the impact of past negative experiences in the mental health system on SDM, the crucial need to cultivate trust, and strategies to enhance culturally responsive SDM.

Conclusions and Implications: This quality improvement project highlights the impactful role of stakeholders in co-creating culturally responsive tools to address disparities in SDM in CSC programs. Empowering stakeholders from diverse backgrounds to shape new SDM practices on CSC teams aims to bridge existing gaps between SDM approaches and the unique needs of BIPOC service users.