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“我要你救救我的孩子!”:精英大学附属医院的疾病管理策略、可及性和不平等。

"I want you to save my kid!": Illness management strategies, access, and inequality at an elite university research hospital.

机构信息

Department of Sociology, Wake Forest University, Winston Salem, NC, USA

出版信息

J Health Soc Behav. 2014 Sep;55(3):342-59. doi: 10.1177/0022146514544172.

Abstract

Using data drawn from interviews and observations with 18 families whose children were diagnosed with life-threatening, often rare diseases, I examine how families accessed and negotiated medical care at a top 10-ranked university research hospital. Access to highly specialized and technologically advanced care was essential in these critical cases. Combining analysis of these high-stakes cases with recent work highlighting the interactional dynamics of care delivery, I show how families followed different paths to elite care and used different illness management strategies throughout the treatment process depending on their ability to mobilize what Janet Shim terms cultural health capital. These diverging illness management strategies reproduced inequality even at the top of the U.S. healthcare system by allowing some families to secure microadvantages throughout the illness experience. These findings suggest a complex interplay between structures of care delivery and families' illness management strategies and point to the need for broader conceptualizations of healthcare advantages.

摘要

我使用了 18 个家庭的访谈和观察数据,这些家庭的孩子被诊断出患有危及生命的罕见疾病,研究了这些家庭如何在一所排名前十的大学研究医院获得和协商医疗服务。在这些关键情况下,获得高度专业化和技术先进的医疗服务至关重要。将这些高风险案例的分析与最近强调医疗服务互动动态的工作相结合,我展示了家庭如何根据自身调动简·希姆所谓的“文化健康资本”的能力,选择不同的途径获得精英医疗服务,并在整个治疗过程中采用不同的疾病管理策略。这些不同的疾病管理策略即使在美国医疗保健系统的顶端也产生了不平等,因为这使得一些家庭在整个疾病经历中获得了微小的优势。这些发现表明,医疗服务提供结构和家庭疾病管理策略之间存在着复杂的相互作用,并指出需要更广泛地概念化医疗优势。

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