Changing perceptions of illness in the early course of psychosis: Psychological pathways to self-determination and self-management of treatment

Treatment early in the course of psychosis can improve prognostic outcomes, facilitate adaptive functioning, and reduce familial and societal burden. However, little is known about the pathway of first episode psychosis (FEP) from the perspective of highly adherent adolescents and young adults. This study sought to understand the pathways in youth self-determination and self-management of treatment by investigating youth and parents’ changing perceptions of illness in the early course of psychosis. Twenty-eight (n = 28) interviews were conducted using a semistructured interview guide on 12 adolescents following their FEP hospitalization and 16 parents. Standardized self-report forms and hospital inpatient records were used to collect and confirm demographic and clinical data. On average, three years had passed from initial hospitalization (age 16.2 years, SD = 1.2) to time of interview (age 19.3 years, SD = 2.3), thus allowing for a range of experiences across the early period of illness. Highly adherent adolescents experienced identifiable temporal phases of early psychosis, comprised of emergent and specific themes. Parents described a parallel pathway toward supporting their child’s self-determination and self-management of treatments, with some distinct experiential differences. Five dominant themes that emerged across time were symptom recognition, awareness of change, negative appraisals, positive appraisals, and treatment self-management. Examining how these themes evolve over the early course of psychosis can help guide interventions that are compatible with the parent and adolescent’s perceptions of illness at that point in time, and can therefore work in concert with the family’s existing efforts to understand and manage their emerging condition and progress toward recovery.