Tracking the rise of the "expert patient" in evolving paradigms of HIV care
Tracking the rise of the "expert patient" in evolving paradigms of HIV care
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DOI：
10.1080/09540121003721000
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发表时间：
2010-01-01
影响因子：
1.7
通讯作者：
Cataldo, Fabian
中科院分区：
文献类型：
--
作者：
Kielmann, Karina;Cataldo, Fabian
在资源有限的环境中推出抗逆转录病毒治疗方案的背景下，“专家患者”被誉为使艾滋病毒感染者（PLHIV）更多地参与艾滋病毒护理和解决人力资源危机的重要一步。艾滋病毒护理领域“专家患者”的兴起，在一定程度上反映了工业化国家向更大程度的患者代理和自我管理方向发展的趋势，这种趋势为卫生服务提供提供了信息。然而，“专家患者”也代表了艾滋病毒感染者寻求更多治疗和卫生保健的一个特殊时刻。在本文中，我们研究了自20世纪80年代以来与艾滋病相关的流行病学、干预措施和社会政治反应的转变有关的公共卫生中艾滋病病毒的独特演变和“工具化”。将“基于风险”、“赋权”、“结构”和“积极”方法综合起来，确定了四种关键范式，它们将艾滋病毒感染者的公民身份划分为不同的层次，即不仅为自己的利益行动，而且为艾滋病毒预防和护理的集体利益行动的动机、机构和责任。我们通过提请注意患者身份、能力和权利以及获得治疗的结构性现实和更广泛地参与卫生系统等概念的上下文特异性，对患者-公民的概念提出了问题。最后，我们提供了一些关于“专家患者”方法在广泛环境中的适用性的想法。
In the context of rolling out antiretroviral treatment programmes in resource-constrained settings, "expert patients'' are hailed as an important step towards greater involvement of people living with HIV (PLHIV) in HIV care, and in addressing the human resources crisis. The rise of the "expert patient'' in HIV care partly echoes the move towards greater patient agency and self-management that informs health services delivery in industrialised countries. However, the "expert patient'' also represents a particular moment in the trajectory of PLHIVs' quest for greater access to treatment and health care. In this paper, we examine the unique evolution and 'instrumentalisation' of PLHIV in public health in relation to shifts in the epidemiology, interventions and socio-political response related to HIV since the 1980s. Synthesised broadly as "risk-based'', "empowerment'', "structural'' and "activist'' approaches, four key paradigms are identified that attribute different levels of citizenship for PLHIV, that is the motivation, agency and responsibility to act not only on their own interests, but also on behalf of collective interests in HIV prevention and care. We problematise the concept of the patient-citizen by drawing attention to the context-specificity of such notions as patient identity, capacity and rights as well as the structural realities of access to treatment, and broader engagement with the health system. We conclude by offering some thoughts on the applicability of 'expert patient' approaches across a broad range of settings.