The experience of stigma and treatment-seeking among youth and family members receiving first episode psychosis services

Abstract

Aim: Despite the effectiveness of targeted first episode psychosis services, a significant proportion of youth referred to such services do not engage in them. Youth (a group at the transition between adolescence and adulthood) is a particularly crucial phase of development related to identity formation, and therefore may be one in which stigma related to psychosis strongly impacts self-definitions. It has been proposed that awareness of and sensitivity to negative stereotypes, such as people with psychosis cannot recover, may predict early disengagement from targeted first episode psychosis services. The purpose of the present study was to explore the relationship between experiences of stigma and service engagement in the narratives of both youth with first episode psychosis (FEP) and their family members. Methods: We conducted qualitative interviews eliciting detailed accounts on both stigma and the help-seeking process among youth and family members (N=23, 14 youth and 9 family members). Interviews focused on the experiences of stigma concern and self-stigma in FEP, and how they impact treatment engagement and identity development. Results: Open-coding analyses revealed that youth with FEP and family members reported themes of experiencing, anticipating, and internalizing stigma, and that concern with stigma was associated with increased ambivalence and reduced willingness to engage in treatment. Conclusions: Findings support that it is essential to address stigma in FEP services to improve treatment engagement.