Saunders Benjamin
Department of Sociology, University of York.
Sociol Health Illn. 2014 Sep;36(7):1020-36. doi: 10.1111/1467-9566.12148. Epub 2014 Jun 3.
For young adults with inflammatory bowel disease (IBD), perceived stigma has been found to be a salient concern. Drawing on interviews with individuals with IBD aged 18-29 (n = 16), this article uses rhetorical discourse analysis to explore how stigma is discursively constructed by young adults, with a focus on the moral underpinnings of the participants' talk. Their representations showed both felt stigma and enacted stigma; principally related to the perceived taboo surrounding the symptoms of their condition, which often led to the non-disclosure or concealment of the condition. The different ways in which stigma is manifested in the accounts present a challenge to recent arguments questioning the relevance of this concept in chronic illness research, though it was found that it is not adequate to look at stigma alone and, given the unstable nature of IBD, negotiating stigma in relation to possible charges of deviance is a pertinent issue for these young adults. For instance, non-disclosure because of shame could result in individuals experiencing blame. Accounts were constructed through a range of discursive strategies, allowing the participants to present themselves in morally appropriate ways throughout. Suggestions are made about future directions in addressing stigma and deviance in relation to this cohort.
对于患有炎症性肠病(IBD)的年轻人来说,感知到的耻辱感已被发现是一个突出问题。本文基于对18至29岁的IBD患者(n = 16)的访谈,运用修辞话语分析来探讨年轻人如何通过话语构建耻辱感,重点关注参与者谈话的道德基础。他们的表述既显示出感受到的耻辱,也显示出表现出的耻辱;主要与围绕其病情症状的感知禁忌有关,这常常导致对病情的隐瞒或不透露。耻辱感在叙述中表现出的不同方式,对最近质疑这一概念在慢性病研究中相关性的观点构成了挑战,不过研究发现,仅关注耻辱感是不够的,而且鉴于IBD的不稳定性质,对于这些年轻人来说,就可能的越轨指控来协商耻辱感是一个相关问题。例如,因羞耻而不透露病情可能导致个人受到指责。叙述是通过一系列话语策略构建的,使参与者能够始终以道德上合适的方式展现自己。文中针对解决与这一群体相关的耻辱感和越轨行为的未来方向提出了建议。