Sibeoni Jordan
Service Universitaire de Psychiatrie de l'Adolescent, Argenteuil Hospital Centre, Argenteuil Cedex.
ECSTRRA Team, UMR-1153, Inserm, Université Paris Cité, Paris, France.
Curr Opin Psychiatry. 2023 May 1;36(3):194-199. doi: 10.1097/YCO.0000000000000847. Epub 2022 Dec 30.
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.
目前，人们认识到有精神分裂症生活经历者的第一人称知识是一种认知特权，可影响并提高研究和护理质量。本综述旨在识别并更好地理解该领域的实际挑战和观点。
近期文献中存在两个主要主题：第一，有精神病生活经历者直接参与研究（第一人称叙述、生活经历和参与式研究）以及护理，同时出现了新的专业岗位，如专家患者和同伴工作者；第二，基于现象学精神病学和定性研究的精神病生活经历研究领域。
有生活经历者参与护理和研究以及对精神病生活经历的研究都有直接影响和成果，比如能更好地理解精神病现象、减少污名化、提供更以人为本和全面的护理以及更好的社会支持。本综述还强调了需要克服的概念和伦理挑战，尤其是象征主义风险。
