Improving Engagement among Families Experiencing First-Episode Psychosis

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ABSTRACT Coordinated specialty care (CSC) interventions have demonstrated effectiveness in improving the short- and long-term outcomes of youth and young adults for first-episode psychosis (FEP). Youth with FEP have better outcomes when their families are involved in care. As a result, all CSC interventions for FEP include family psychoeducation as a core evidence-based component. Despite this fact, CSC programs generally report low levels (<50%) of engagement in family psychoeducation, and engagement of racial and ethnic minority families is even lower (<20%). Lack of family involvement is often driven by low motivation, cultural, logistical, and perceptual barriers, and perceived irrelevance of treatment. My preliminary findings among families of youth with FEP indicate that family members desired frequent communication and positive exchanges with clinicians and more assertive engagement and support. The proposed mixed-methods research project will further document the barriers to CSC. Using this information and input from a family and client Advisory Committee, I will develop, implement, and pilot-test a brief clinician-led family engagement intervention that will coincide with family psychoeducation for CSC programs for youth experiencing FEP. The framework for this study will blend core components of the Promoting Action on Research Implementation in Health Services (PARiHS), a collaborative implementation framework, and Intervention Mapping to ensure that the family engagement intervention fits within the context of CSC programs. The survey of family barriers and the family engagement intervention will be grounded in the Self-Determination Theory. I will first survey 200 family members of patients receiving CSC and assess demographic, cultural, perceptual, and logistical barriers and motivators that influence engagement in CSC programs for FEP. Then I will develop and assess the feasibility of the family engagement intervention in a CSC program and make modifications to improve the intervention. Finally, I will conduct a site-based stepped-wedge trial with 50 family members of youth with FEP recruited from five CSC programs to assess intervention acceptability and feasibility, as well as the impact of the intervention on engagement. The proposed study has the potential to address family engagement issues, with important implications for CSC programs and improved FEP outcomes for clients that will be further tested in a subsequent large R01 study. My proposed research plan integrates activities, formal training, and mentorship from experts (Drs. Michael McDonell, Leopoldo Cabassa, Michael Compton, Roberto Lewis-Fernández, Sterling McPherson, and Dennis Dyck) in FEP, family-focused evidence-based practices, family engagement, implementation science, and mixed- methodology. This Mentored Research Scientist Development Award ( K01) will build upon my previous training to allow me to pursue my long-term career goal to become an independent investigator with an established program of research focused on the development and implementation of effective family-focused evidence- based practices for FEP programs with an underlying emphasis on racial and ethnic disparities.