Lived experience of psychosis: challenges and perspectives for research and care

There is currently a recognition of the first-personal knowledge of people with lived experience of schizophrenia as an epistemic privilege that can influence and improve the quality of research and care. This review aims to identify and better understand the actual challenges and perspectives of this field.

Two main themes are present in the recent literature: first, the direct involvement of persons with lived experience of psychosis both in research (first person accounts, lived experience and participatory research) and care with the development of new professional positions such as expert patients and peer workers ; second, the field of research on lived experience of psychosis based mostly on phenomenological psychiatry and qualitative research.

Both involvement of persons with lived experience in care and research, and research on lived experience of psychosis have direct impact and outcomes such as leading to a better understanding of psychotic phenomena and to reduced stigma and providing more person-centered and holistic care and better social support. This review also highlights the conceptual and ethical challenges to overcome, especially the risk of tokenism.