“There are too many steps before you get to where you need to be”: Help-seeking by patients with first-episode psychosis

Abstract

Background: There has been substantial research on pathways to care in first-episode psychosis (FEP); however, few studies have used a qualitative research paradigm or have been done from the perspective of the person experiencing the psychotic episode.

Objective: We sought to describe the experiences of patients with FEP on their pathway to care and to identify factors that help or hinder help-seeking efforts.

Methods: Using a qualitative descriptive approach, we conducted semi-structured interviews with 16 patients recruited from an early intervention program. Data were analyzed using content analysis to organize the findings into themes.

Findings; Self-stigma and a pervasive lack of knowledge regarding the symptoms of psychosis and availability of services were barriers to help-seeking. Participants highlighted the crucial role of significant others in initiating the help-seeking process. Participants typically described a complex series of contacts along the pathway to care which resulted in feelings of being misunderstood and losing control, but many individuals identified unexpected benefits of their experience.

Conclusions: Our findings suggest a shift in the philosophy and orientation of service delivery towards the creation of services that address these concerns and are relevant to the young people who utilize them.

Keywords:

• first-episode psychosis
• pathways to care
• health services
• qualitative research

Acknowledgements

We gratefully acknowledge Deborah Ummell for assistance with interviewing and data analysis, and staff at the Prevention and Early Intervention for Psychoses Program for their involvement in recruitment. We are also grateful to Dr. Katherine Boydell for her feedback on the study design and interview guide.

Declaration of Interest: This study was funded by a Canadian Institutes of Health Research (CIHR) Interdisciplinary Capacity Enhancement Grant in Health Inequalities (Project # HOA-80072). K.A. is supported by a Frederick Banting and Charles Best Canada Graduate Scholarship from CIHR. Dr. Fuhrer holds a CIHR Canada Research Chair in Psychosocial Epidemiology, and Dr. Malla holds a CIHR Canada Research Chair in Early Psychosis. The authors have no conflicts of interest with respect to the publication of this manuscript.