Factors that hindered care seeking among people with a first diagnosis of psychosis.

Abstract

Evidence-based treatment can improve psychosis outcomes, but service providers need to understand and address the reasons people experiencing first episode psychosis avoid or delay care seeking. The goal of this study was to identify reasons care seeking might be postponed, from the points of view of patients, caregivers and health care professionals in a large health care delivery system, in the United States, without an early psychosis intervention program. About 22 patients who had received an initial psychosis diagnosis and 10 of their caregivers were interviewed about their experiences and pathways to care. Additionally, 15 administrator or clinician key informants with responsibility for psychosis services were interviewed and asked to describe ways that they thought early psychosis identification and treatment engagement could be improved. All interviews were transcribed, coded and analysed together using thematic analysis. Some patients did not perceive their early psychotic experiences as concerning because they were familiar. Among those concerned, the desire to make sense of their experiences and avoid detection or stigma caused some to conceal symptoms or isolate themselves. Caregivers who observed withdrawal often attributed it to typical adolescent behaviour, which led to treatment delays. Legal and privacy protections led to delays among young adults. To attract individuals to early psychosis services, outreach and engagement programs should help individuals and caregivers recognize their experiences as opportunities for care, and design and market services that promote sense-making, offer hope and reduce stigma and system-level privacy-related barriers to care engagement.