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在难治性小儿癫痫之后的文化趋同和大麻治疗。

Cultural conformity and cannabis care in the wake of intractable pediatric epilepsy.

机构信息

Department of Anthropology, San Diego State University, San Diego, CA, USA.

出版信息

Anthropol Med. 2021 Jun;28(2):205-222. doi: 10.1080/13648470.2021.1893583. Epub 2021 Jun 2.

Abstract

Biomedicine controls seizures for many children with epilepsy - but not all. In such cases, parents struggle in the wake of various structural, cultural, and corporeal ruptures. Continued use of ineffective medications can lead, iatrogenically, to frightening and serious symptoms and debilitations whose effects, along with those of uncontrolled seizures, ripple outward in challenging ways. Using data from 25 Californian (US) parents who favored providing cannabis to their ill children to meet the iatrogenic burdens of biomedical epilepsy treatments in 2015, well before cannabis's present destigmatization, this paper explores parental refiguration of the effects of clinical iatrogenesis as inevitable - and as productive of evidence necessary to finding better options. In attending to the generative dimensions of iatrogenesis, this paper strives to help clarify the dilemma for parents who critique biomedicine's isolating, materialist, and sometimes apparently haphazard approach to their children, but depend on biomedical and associated systems for their family's well-being nonetheless. Along the way, this paper underscores raced and gendered dimensions of their experiences. Rather than rejecting biomedicine, most hung on tightly, blaming the uncontrolled seizures and their aftermath on a lag in 'the science' and pointing to the cultural idea that every child is unique in explaining their own children's non-responsiveness to treatment thus far. Likewise, they worked to determine effective cannabis regimens with scientised rigour. However, in the end - and in keeping with a culture of (male) Whiteness - stigmatisation, fatigue from chronic care provision, faith in science, and a need for a biomedically-mediated form of social belonging underwrote a majority desire for cannabis's incorporation into the official biomedical pharmacopeia.

摘要

生物医学可以控制许多癫痫儿童的癫痫发作——但并非全部。在这种情况下,父母会在各种结构、文化和肉体破裂的情况下挣扎。继续使用无效的药物可能会导致医源性的可怕和严重症状和残疾,这些症状和不受控制的癫痫发作一起,以具有挑战性的方式向外扩散。本论文使用了 2015 年 25 名加州(美国)父母的数据,他们赞成为生病的孩子提供大麻,以应对生物医学癫痫治疗的医源性负担,而当时大麻尚未被污名化,本文探讨了父母对临床医源性影响的重新塑造,认为这种影响是不可避免的——并且产生了寻找更好选择所需的证据。在关注医源性的生成维度时,本文努力帮助澄清那些批评生物医学孤立、唯物主义、有时显然随意的方法来治疗孩子的父母的困境,但无论如何仍依赖生物医学和相关系统来维持家庭的幸福。在此过程中,本文强调了他们经历的种族和性别维度。大多数父母没有拒绝生物医学,而是紧紧抓住不放,将不受控制的癫痫发作及其后果归咎于“科学”的滞后,并指出了文化观念,即每个孩子都是独特的,以此来解释他们自己的孩子迄今为止对治疗没有反应的原因。同样,他们努力以科学化的严谨来确定有效的大麻治疗方案。然而,最终——与(男性)白人文化一致——污名化、慢性护理提供的疲劳、对科学的信仰,以及对生物医学介导的社会归属感的需求,支持了大多数人希望将大麻纳入官方生物医学药典的愿望。

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