Discrepancies between self and caregiver perceptions of agency in first-episode psychosis

Abstract

Personal agency—a key element of recovery from psychotic disorders—is formed and maintained in large part through interactions with others. Interactions with caregivers are particularly important in first-episode psychosis (FEP), as these interactions form the foundations for lifelong caregiving relationships. The present study examined shared understandings of agency (operationalized as efficacy to manage symptoms and social behaviors) within families affected by FEP. Individuals with FEP (n = 46) completed the Self-Efficacy Scale for Schizophrenia (SESS) and measures of symptom severity, social functioning, social quality of life, stigma, and discrimination. Caregivers (n = 42) completed a caregiver version of the SESS assessing perceptions of their affected relative's self-efficacy. Self-rated efficacy was higher than caregiver-rated efficacy in all domains (positive symptoms, negative symptoms, and social behavior). Self- and caregiver-rated efficacy correlated only in the social behavior domain. Self-rated efficacy was most associated with lower depression and stigmatization, whereas caregiver-rated efficacy was most associated with better social functioning. Psychotic symptoms did not relate to self- or caregiver-rated efficacy. Individuals with FEP and caregivers have discrepant perceptions of personal agency, perhaps because they base perceptions of agency on different sources of information. These findings highlight specific targets for psychoeducation, social skills training, and assertiveness training to develop shared understandings of agency and facilitate functional recovery.