“My World Is Gone”: Understanding and Addressing the Needs of Caregivers of First Episode Psychosis Patients

ABSTRACT Background Caregivers of those who have suffered a first episode psychosis (FEP) carry a significant burden, and report high levels of psychological distress, burnout and other emotional and financial difficulties because of the role they play. However, the role caregivers play is crucial to the recovery prospects of someone who has experienced an FEP, and thus, their needs and how they can be supported is of particular importance. Methods This paper sought to understand the caregiver experience, and the needs that they expressed having had that experience. In addition, we explored how these needs might be met, by way of supports and potential structures for delivery of them. To address the aim of this study, a qualitative study of 15 caregivers was conducted. Findings Two key overarching themes emerged within the data. Firstly, caregivers felt that they did not prepare for the caring role and that it had been life changing. Secondly, they reported that they would like more support by way of feeling like they matter, by being upskilled and by being provisioned their own, ongoing support. The study highlights key policy and practice implications for FEP services. Conclusion Our results emphasise caregiver recognition and inclusion in the medical team. Ongoing structured psychoeducation, early and ongoing communication with the clinical team, and access to emotional and practical supports for carers, as well as flexible delivery models of these support services, are essential to improve caregiver well‐being and optimise recovery outcomes.