Work

Supporting Young People With First-Episode Psychosis: A Qualitative Study of Caregiver Perceptions and Experiences

Year: 2026

Type: article

Abstract: The diagnosis of a psychotic disorder in youth often leads to high costs, emotional distress, and isolation for caregivers. Yet, caregiving experiences are underexplored in research, resulting in a potentially missed area to enhance care. We aim to explore the experiences, perceptions, and help-seeking efforts of families supporting youth with first-episode psychosis (FEP). We conducted semi-structured interviews with 20 caregivers of 17 individuals diagnosed with a psychotic disorder within the past 5 years (age range = 12–35, mean age at diagnosis = 21). Interviews covered caregivers’ experiences, perceptions, and help-seeking efforts. We transcribed interviews and used thematic analysis informed by an interpretative phenomenological lens. We organized our findings into three domains. First, an inward-facing, youth-focused domain of Caring with three themes: Making Sense , Loss of the Envisioned Child , and Strengths . Second, an inward-facing, caregiver-focused domain of Coping with three themes: Fractures and Bonds , Emotional Load , and Caregiver Role and Identity. Third, an outward-facing domain of Connecting with three themes: Navigating Systems of Care , Cultural , Social , and Religious Context , and Independence . Our framework underpinning the lived experiences of caregivers may serve as a resource for caregivers, clinicians, and policymakers to inform earlier intervention and improve outcomes for young individuals with FEP.

Source: Qualitative Health Research

DOI: 10.1177/10497323261481767

Authors: Alexis L. Chang, Zoe Beketova, Nina Levine, Vinod H. Srihari, Andrés Martin

Institution: Yale University

Language: English

Topic: Family Caregiving in Mental Illness

Subfield: Clinical Psychology

Field: Psychology

Domain: Social Sciences

SDG: Good health and well-being

Open Access status: hybrid

Estimated APC paid: $4,400