Fusar-Poli Paolo, Estradé Andrés, Stanghellini Giovanni, Venables Jemma, Onwumere Juliana, Messas Guilherme, Gilardi Lorenzo, Nelson Barnaby, Patel Vikram, Bonoldi Ilaria, Aragona Massimiliano, Cabrera Ana, Rico Joseba, Hoque Arif, Otaiku Jummy, Hunter Nicholas, Tamelini Melissa G, Maschião Luca F, Puchivailo Mariana Cardoso, Piedade Valter L, Kéri Péter, Kpodo Lily, Sunkel Charlene, Bao Jianan, Shiers David, Kuipers Elizabeth, Arango Celso, Maj Mario
Early Psychosis: Interventions and Clinical-detection (EPIC) Lab, Department of Psychosis Studies, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, UK.
OASIS service, South London and Maudsley NHS Foundation Trust, London, UK.
World Psychiatry. 2022 Jun;21(2):168-188. doi: 10.1002/wps.20959.
Psychosis is the most ineffable experience of mental disorder. We provide here the first co-written bottom-up review of the lived experience of psychosis, whereby experts by experience primarily selected the subjective themes, that were subsequently enriched by phenomenologically-informed perspectives. First-person accounts within and outside the medical field were screened and discussed in collaborative workshops involving numerous individuals with lived experience of psychosis as well as family members and carers, representing a global network of organizations. The material was complemented by semantic analyses and shared across all collaborators in a cloud-based system. The early phases of psychosis (i.e., premorbid and prodromal stages) were found to be characterized by core existential themes including loss of common sense, perplexity and lack of immersion in the world with compromised vital contact with reality, heightened salience and a feeling that something important is about to happen, perturbation of the sense of self, and need to hide the tumultuous inner experiences. The first episode stage was found to be denoted by some transitory relief associated with the onset of delusions, intense self-referentiality and permeated self-world boundaries, tumultuous internal noise, and dissolution of the sense of self with social withdrawal. Core lived experiences of the later stages (i.e., relapsing and chronic) involved grieving personal losses, feeling split, and struggling to accept the constant inner chaos, the new self, the diagnosis and an uncertain future. The experience of receiving psychiatric treatments, such as inpatient and outpatient care, social interventions, psychological treatments and medications, included both positive and negative aspects, and was determined by the hope of achieving recovery, understood as an enduring journey of reconstructing the sense of personhood and re-establishing the lost bonds with others towards meaningful goals. These findings can inform clinical practice, research and education. Psychosis is one of the most painful and upsetting existential experiences, so dizzyingly alien to our usual patterns of life and so unspeakably enigmatic and human.
精神病是精神障碍中最难以言表的体验。我们在此提供了第一篇关于精神病体验的共同撰写的自下而上的综述，由有亲身经历的专家主要选取主观主题，随后从现象学角度进行丰富。我们筛选了医学领域内外的第一人称叙述，并在协作研讨会上进行了讨论，研讨会参与者包括众多有精神病亲身经历的人以及家庭成员和护理人员，他们代表了一个全球性的组织网络。通过语义分析对材料进行补充，并在基于云的系统中与所有合作者共享。研究发现，精神病的早期阶段（即病前和前驱期）的特征是核心存在主题，包括常识丧失、困惑、与世界缺乏融入感且与现实的重要联系受损、显著性增强以及感觉有重要的事情即将发生、自我意识紊乱，以及需要隐藏内心的混乱体验。首次发作阶段的特征是与妄想发作相关的一些短暂缓解、强烈的自我参照性和自我与世界边界的渗透、内心嘈杂、自我意识解体以及社交退缩。后期阶段（即复发期和慢性期）的核心亲身经历包括为个人损失而悲伤、感觉分裂，以及努力接受持续的内心混乱、新的自我、诊断结果和不确定的未来。接受精神病治疗的体验，如住院和门诊护理、社会干预、心理治疗和药物治疗，既有积极方面也有消极方面，其取决于实现康复的希望，康复被理解为一个持久的旅程，即重建人格意识并重新建立与他人失去的联系以实现有意义的目标。这些发现可为临床实践、研究和教育提供参考。精神病是最痛苦、最令人苦恼的存在体验之一，与我们平常的生活模式如此截然不同，如此难以言表地神秘且人性化。
