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精神分裂症康复的新范式:无法治愈却有改善的文化难题。

The new paradigm of recovery from schizophrenia: cultural conundrums of improvement without cure.

作者信息

Jenkins Janis H, Carpenter-Song Elizabeth

机构信息

Department of Anthropology, Case Western University, Cleveland, Ohio 44106-7125, USA.

出版信息

Cult Med Psychiatry. 2005 Dec;29(4):379-413. doi: 10.1007/s11013-006-9000-8.

Abstract

This article is a qualitative investigation of the subjective experience of recovery from the perspective of persons living with schizophrenia-related disorders. An NIMH-sponsored ethnographic study of community outpatient clinics was completed for 90 persons taking second-generation antipsychotic medications. Research diagnostic criteria and clinical ratings were obtained in tandem with an anthropologically developed Subjective Experience of Medication Interview (SEMI) that elicits narrative data on everyday life and activities, medication and treatment, management of symptoms, expectations concerning recovery, and stigma. Ethnographic observations from diverse settings (clinics, public transportation, restaurants, homes) were also obtained. The primary findings are that recovery was experienced in relation to low levels of symptoms, the need to take medications to avoid hospitalization or psychotic episodes, and personal agency to struggle against the effects of illness. The majority of participants articulated their sense of illness recovery and expectation that their lives would improve. Improvement and recovery is an incremental, yet definitively discernable subjective process. Several problems were identified as part of this process surrounding cultural conflicts that generate the experience of ambivalence analyzed here as the "paradox of recovery without cure," irreconcilable "catch-22" dilemmas involving sacrifice (e.g., one must be "fat" or be "crazy"), and substantial stigma despite improvement in illness and everyday life experience.

摘要

本文是一项从精神分裂症相关疾病患者的角度对康复主观体验进行的定性研究。美国国立精神卫生研究所资助了一项针对社区门诊诊所的人种志研究,研究对象为90名正在服用第二代抗精神病药物的患者。研究诊断标准和临床评级与一项人类学开发的药物主观体验访谈(SEMI)同步进行,该访谈收集有关日常生活和活动、药物与治疗、症状管理、康复期望以及耻辱感的叙述性数据。还获取了来自不同场所(诊所、公共交通、餐厅、家庭)的人种志观察结果。主要研究结果是,康复体验与低症状水平、为避免住院或精神病发作而需要服药以及与疾病影响作斗争的个人能动性有关。大多数参与者表达了他们的疾病康复感以及对生活改善的期望。改善和康复是一个渐进的、但肯定可以察觉的主观过程。在这个过程中,有几个问题被确定为围绕文化冲突产生的矛盾情绪,这里将其分析为“不治而愈的康复悖论”、涉及牺牲的不可调和的“两难困境”(例如,一个人必须“胖”或者“疯”),以及尽管疾病和日常生活体验有所改善但仍存在的严重耻辱感。

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