Beyond the institution versus home care dichotomy: Lessons from a feeding-tube medical home

IF 3.9 1区 社会学 Q2 MANAGEMENT
Sara Gilbert Loftus
{"title":"Beyond the institution versus home care dichotomy: Lessons from a feeding-tube medical home","authors":"Sara Gilbert Loftus","doi":"10.1111/gwao.13058","DOIUrl":null,"url":null,"abstract":"<p>Decades of rights-based advocacy for people with disabilities have transitioned long-term care in the United States from institutional settings to home-based care provided by interdependent care networks. This paper argues that policies and practices within these home-based care systems unintentionally produce and often perpetuate unrecognized structural violence on the recipients of care and the caregivers. Understanding the caregivers' experiences through a case study of a Facebook feeding tube family support group exposes the geographic realities and ableist underpinnings of the home-based care model that undergird this violence. Further, I illustrate the contradictions of “home is best” ideology by focusing on three interwoven themes: structural dependency on unpaid mother-experts, spatio-temporal erasure through decentralization, and invasive surveillance structures. This research attends to how home-based care, as a practice and a place, reflects broader patriarchal, gendered, and neoliberal concepts of autonomy and individual rights as expressed through policies like “person-centered” care and the medical home model. While this analysis has theoretical, methodological, and policy implications, more important is the contextualization of family experiences that sometimes impacts life and death.</p>","PeriodicalId":48128,"journal":{"name":"Gender Work and Organization","volume":null,"pages":null},"PeriodicalIF":3.9000,"publicationDate":"2023-08-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/gwao.13058","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Gender Work and Organization","FirstCategoryId":"90","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1111/gwao.13058","RegionNum":1,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"MANAGEMENT","Score":null,"Total":0}
引用次数: 0

Abstract

Decades of rights-based advocacy for people with disabilities have transitioned long-term care in the United States from institutional settings to home-based care provided by interdependent care networks. This paper argues that policies and practices within these home-based care systems unintentionally produce and often perpetuate unrecognized structural violence on the recipients of care and the caregivers. Understanding the caregivers' experiences through a case study of a Facebook feeding tube family support group exposes the geographic realities and ableist underpinnings of the home-based care model that undergird this violence. Further, I illustrate the contradictions of “home is best” ideology by focusing on three interwoven themes: structural dependency on unpaid mother-experts, spatio-temporal erasure through decentralization, and invasive surveillance structures. This research attends to how home-based care, as a practice and a place, reflects broader patriarchal, gendered, and neoliberal concepts of autonomy and individual rights as expressed through policies like “person-centered” care and the medical home model. While this analysis has theoretical, methodological, and policy implications, more important is the contextualization of family experiences that sometimes impacts life and death.

超越机构与家庭护理的二分法:喂食管医疗之家的经验教训
几十年来,对残疾人基于权利的倡导使美国的长期护理从机构环境转变为由相互依存的护理网络提供的家庭护理。本文认为,这些家庭护理系统中的政策和做法无意中对护理对象和护理人员产生了未被承认的结构性暴力,并往往使其长期存在。通过对Facebook喂食管家庭支持小组的案例研究,了解照顾者的经历,揭示了家庭护理模式的地理现实和能力基础,而家庭护理模式正是这种暴力的基础。此外,我通过关注三个交织的主题来说明“家是最好的”意识形态的矛盾:对无偿母亲专家的结构性依赖、通过权力下放的时空擦除和侵入性监视结构。这项研究关注的是,家庭护理作为一种实践和场所,如何反映出通过“以人为本”的护理和医疗家庭模式等政策表达的更广泛的父权制、性别化和新自由主义的自主和个人权利概念。虽然这种分析具有理论、方法和政策意义,但更重要的是家庭经历的情境化,有时会影响生死。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
求助全文
约1分钟内获得全文 求助全文
来源期刊
CiteScore
11.50
自引率
13.80%
发文量
139
期刊介绍: Gender, Work & Organization is a bimonthly peer-reviewed academic journal. The journal was established in 1994 and is published by John Wiley & Sons. It covers research on the role of gender on the workfloor. In addition to the regular issues, the journal publishes several special issues per year and has new section, Feminist Frontiers,dedicated to contemporary conversations and topics in feminism.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
联系我们:info@booksci.cn Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。 Copyright © 2023 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术官方微信