Development of a stage-specific adaptation of a self-stigma intervention for people recovering from a first episode of psychosis

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Abstract Self-stigma develops when people diagnosed with severe mental illnesses (SMI) become aware of negative stereotypes endorsed by many in society (e.g., dangerousness, incompetence, inability to work), perceive them as legitimate, and apply them to themselves. Clinically significant self-stigma affects roughly 1/3 or more of persons with SMI, and there is substantial evidence that it is strongly negatively linked to treatment engagement, as well as critical objective (e.g., social functioning) and subjective (e.g., self-esteem) dimensions of recovery. First Episodes of Psychosis (FEPs) typically occur during youth (between ages 15 and 24, corresponding with late adolescence/early adulthood), a time of heightened self-consciousness and a crucial period for identity formation. Developmental theory posits that identity disruptions, such as psychosis (with its associated negative stereotypes), may diminish one’s sense of purpose, decreasing treatment engagement and impacting pursuit of life goals (school/work). Research with people who have recently experienced a FEP finds that clinically significant self-stigma is common at this stage and associated with diminished treatment engagement and impaired social functioning. The FEP period is therefore a critical time for addressing self-stigma given the potentially profound implications of self-stigma for identity development. Despite encouraging findings, treatment engagement and other outcomes are still suboptimal for targeted FEP services such as “Coordinated Specialty Care” [CSC]. Given the documented relationship between self-stigma and service engagement, it is plausible that targeted self-stigma intervention can increase engagement in CSC services and improve outcomes among youth with FEP. Narrative Enhancement and Cognitive Therapy (NECT) is an intervention designed to reduce self-stigma that was found to be effective compared to treatment as usual in recent randomized controlled-trials (RCTs) with middle-aged adults. NECT might serve as an effective adjunct to CSC, but it is not suitable for use with people with FEP in its current form, and may also be amenable to telehealth modification to better engage youth. The overall purpose of the proposed exploratory intervention development application, consistent with the aims of RFA-MH-18-706, is to conduct research that will inform the adaptation and preliminary testing of NECT modified for youth (aged 15-24) with FEP, targeting self-concept and illness conceptions to increase treatment engagement. The specific aims of the project are to: 1) Conduct a qualitative study to characterize experiences of stigma concern, self-stigma and associated intervention preferences among youth with FEP and their family members, 2) adapt NECT to be responsive to the needs and preferences of youth with FEP, and 3) Assess the feasibility, acceptability and preliminary effectiveness of the modified intervention (NECT-YA) combined with CSC services, compared to CSC services alone, in a small (n = 40) RCT.