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

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.