给护理一个平台:慢性病儿童母亲使用Instagram

Mikayla Gordon Wexler, Christopher Dole
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摘要

在这篇文章中,我们探讨了社交媒体平台Instagram如何塑造照顾慢性病儿童的主体间体验。基于长期沉浸式社交媒体研究和对那些拥有专门照顾患有慢性病的儿童的流行Instagram账户的女性的深入采访,我们将Instagram视为一个“道德实验室”(Mattingly 2010),在这个实验室中,照顾者协商他们当前经历的意义,以及他们在一起的关系。通过考虑Instagram在调解这些母亲所从事的情感劳动形式方面所起的作用,我们考虑了使Instagram成为一种资源的功能——它培养社会联系感的能力,验证她们的无形劳动,并提供实用知识——这两者都会在他们的生活中产生新的并加剧长期存在的压力和焦虑。我们认为这些Instagram订阅源是复杂的社交环境,在慢性病患者及其护理人员的生活轨迹中发挥着越来越重要的作用。
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Giving Care a Platform: The Use of Instagram by Mothers of Children with Chronic Illness
In this article, we explore the ways that the social media platform Instagram shapes the intersubjective experience of caring for children with chronic illnesses. Based on long-term immersive social media research and in-depth interviews with women maintaining popular Instagram accounts dedicated to caring for children with chronic illnesses, we approach Instagram as a ‘moral laboratory’ (Mattingly 2010) in which caregivers negotiate the meaning of their present experiences and experiment with potential futures for themselves, their children, and their relationships together. Through a consideration of the role played by Instagram in mediating the forms of affective labour these mothers engaged in, we consider how the very features that make Instagram a resource—its ability to foster a sense of social connectedness, validate their invisible labour, and provide practical knowledge—both create new and intensify longstanding forms of pressure and anxiety in their lives. We regard these Instagram feeds as complex social settings that are playing an increasingly important role in the trajectory of lives of people with chronic illness and their caregivers.
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