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“这是我所应对的事情,但并非我的全部”:对双相情感障碍患者内化耻辱感的思考

'It's something that I manage but it is not who I am': reflections on internalized stigma in individuals with bipolar disorder.

作者信息

Michalak Erin, Livingston James D, Hole Rachelle, Suto Melinda, Hale Sandra, Haddock Candace

机构信息

Department of Psychiatry, University of British Columbia, Vancouver, BC, Canada.

出版信息

Chronic Illn. 2011 Sep;7(3):209-24. doi: 10.1177/1742395310395959. Epub 2011 Feb 28.

Abstract

Bipolar disorder (BD) is a complex chronic condition associated with substantial costs, both at a personal and societal level. Growing research indicates that experiences with stigma may play a significant role in contributing to the distress, disability, and poor quality of life (QoL) often experienced in people with BD. Here, we present a sub-set of findings from a qualitative study of self-management strategies utilized by high functioning Canadian individuals with BD. Specifically, we describe a theme relating to participants' experiences and understandings of internalized stigma. Descriptive qualitative methods were used including purposeful sampling and thematic analysis. High functioning individuals with BD type I or II (N = 32) completed quantitative scales to assess symptoms, functioning and QoL, and participated in an individual interview or focus group to discuss the self-management strategies that they use to maintain or regain wellness. Thematic analysis identified several themes, including one relating to internalized stigma. Within this, four additional themes were identified: stigma expectations and experiences, sense of self/identity, judicious disclosure, and moving beyond internalised stigma. One of the more unique aspects of the study is that it involves a participant sample that is managing well with their illness, which differs from the norm in biomedical research that typically focuses on pathology, problems and dysfunction.

摘要

双相情感障碍(BD)是一种复杂的慢性疾病,在个人和社会层面都会产生巨大的成本。越来越多的研究表明,遭受耻辱感的经历可能在导致双相情感障碍患者经常经历的痛苦、残疾和低生活质量(QoL)方面发挥重要作用。在此,我们展示了一项对加拿大高功能双相情感障碍患者自我管理策略的定性研究的部分结果。具体而言,我们描述了一个与参与者内化耻辱感的经历和理解相关的主题。采用了描述性定性方法,包括目的抽样和主题分析。32名I型或II型高功能双相情感障碍患者完成了评估症状、功能和生活质量的定量量表,并参加了个人访谈或焦点小组,以讨论他们用于维持或恢复健康的自我管理策略。主题分析确定了几个主题,包括一个与内化耻辱感相关的主题。在此主题范围内,又确定了四个其他主题:耻辱感预期和经历、自我/身份感、明智披露以及超越内化耻辱感。该研究一个较为独特的方面是,其参与者样本病情控制良好,这与生物医学研究通常关注病理、问题和功能障碍的常态不同。

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