Obstetrics, Gynecology & Reproductive Sciences, University of California, San Francisco (UCSF), San Francisco, CA, USA.
Infectious Diseases Research Collaboration, Kampala, Uganda.
J Med Humanit. 2024 Dec;45(4):345-368. doi: 10.1007/s10912-024-09862-0. Epub 2024 Jun 26.
Illness narratives invite practitioners to understand how biomedical and traditional health information is incorporated, integrated, or otherwise internalized into a patient's own sense of self and social identity. Such narratives also reveal cultural values, underlying patterns in society, and the overall life context of the narrator. Most illness narratives have been examined from the perspective of European-derived genres and literary theory, even though theorists from other parts of the globe have developed locally relevant literary theories. Further, illness narratives typically examine only the experience of illness through acute or chronic suffering (and potential recovery). The advent of biomedical disease prevention methods like post- and pre-exposure prophylaxis (PEP and PrEP) for HIV, which require daily pill consumption or regular injections, complicates the notion of an illness narrative by including illness prevention in narrative accounts. This paper has two aims. First, we aim to rectify the Eurocentrism of existing illness narrative theory by incorporating insights from African literary theorists; second, we complicate the category by examining prevention narratives as a subset of illness narratives. We do this by investigating several narratives of HIV prevention from informants enrolled in an HIV prevention trial in Kenya and Uganda in 2022.
疾病叙事邀请从业者了解生物医学和传统健康信息是如何被患者自身的自我意识和社会认同所吸收、整合或内化的。这些叙事还揭示了文化价值观、社会底层模式以及叙述者的整体生活背景。尽管来自全球其他地区的理论家已经发展出了与当地相关的文学理论,但大多数疾病叙事都是从欧洲衍生的体裁和文学理论的角度来研究的。此外,疾病叙事通常仅通过急性或慢性痛苦(和潜在的康复)来检查疾病的体验。生物医学疾病预防方法(如艾滋病毒的暴露前和暴露后预防 [PEP 和 PrEP])的出现,要求每天服用药丸或定期注射,这使得疾病叙事的概念变得复杂,因为它将疾病预防纳入了叙事描述中。本文有两个目的。首先,我们旨在通过纳入非洲文学理论家的观点来纠正现有疾病叙事理论的欧洲中心主义;其次,我们通过检查预防叙事作为疾病叙事的一个子集来使这一类别变得复杂。我们通过调查 2022 年在肯尼亚和乌干达参加艾滋病毒预防试验的参与者的几个艾滋病毒预防叙事来做到这一点。