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混乱的身份认同:对一个多发性硬化症支持小组的人种志探索

MeSsy identities: an ethnographic exploration of a multiple sclerosis support group.

作者信息

Johnson Alyse Keller

机构信息

CUNY Kingsborough Community College, Brooklyn, NY, United States.

出版信息

Qual Res Med Healthc. 2024 Sep 19;8(2):12175. doi: 10.4081/qrmh.2024.12175. eCollection 2024 Jul 4.

Abstract

The following is an ethnographic study of a multiple sclerosis (MS) support group. This study underscores the importance of access to counternarratives for individuals with chronic illness and disabilities through organizational structures such as support groups. This work can help those with disabilities/chronic diseases, such as MS, because it provides a space for discussing the communicative forces that shape individual experiences of living with disability and chronic illness. Thus, this study seeks to understand how pharmaceutical representatives' and doctors' grand medical narratives influence the communication of MS support group attendees and their construction/performance of self. This study shows that participation in support groups provides a space to renegotiate identity in which new forms of self can develop external to the dominant discourse. The support group becomes a space where counternarratives of empowerment develop in the face of master narratives.

摘要

以下是一项对多发性硬化症(MS)支持小组的人种志研究。这项研究强调了通过支持小组等组织结构,为慢性病患者和残疾人提供接触反叙事的重要性。这项工作有助于患有诸如MS等残疾/慢性病的人,因为它提供了一个空间,用于讨论塑造残疾和慢性病患者个人生活经历的交流力量。因此,本研究旨在了解制药代表和医生的宏大医学叙事如何影响MS支持小组参与者的交流以及他们的自我构建/表现。这项研究表明,参与支持小组提供了一个重新协商身份的空间,在这个空间里,可以在主导话语之外发展出新的自我形式。支持小组成为一个面对主导叙事时产生赋权反叙事的空间。

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