Swendeman Dallas, Ingram Barbara L, Rotheram-Borus Mary Jane
Global Center for Children and Families, Semel Institute for Neuroscience and Human Behavior, University of California, Los Angeles, CA, USA.
AIDS Care. 2009 Oct;21(10):1321-34. doi: 10.1080/09540120902803158.
HIV/AIDS is widely recognized as a chronic illness within HIV care, but is often excluded from chronic disease lists outside the field. Similar to other chronic diseases, HIV requires lifetime changes in physical health, psychological functioning, social relations, and adoption of disease-specific regimens. The shift from acute to chronic illness requires a self-management model in which patients assume an active and informed role in healthcare decision making to change behaviors and social relations to optimize health and proactively address predictable challenges of chronic diseases generally and HIV specifically. This article reviews literature on chronic disease self-management to identify factors common across chronic diseases, highlight HIV-specific challenges, and review recent developments in self-management interventions for people living with HIV (PLH) and other chronic diseases. An integrated framework of common elements or tasks in chronic disease self-management is presented that outlines 14 elements in three broad categories: physical health; psychological functioning; and social relationships. Common elements for physical health include: a framework for understanding illness and wellness; health promoting behaviors; treatment adherence; self-monitoring of physical status; accessing appropriate treatment and services; and preventing transmission. Elements related to psychological functioning include: self-efficacy and empowerment; cognitive skills; reducing negative emotional states; and managing identity shifts. Social relationship elements include: collaborative relationships with healthcare providers; social support; disclosure and stigma management; and positive social and family relationships. There is a global need to scale up chronic disease self-management services, including for HIV, but there are significant challenges related to healthcare system and provider capacities, and stigma is a significant barrier to HIV-identified service utilization. Recognizing that self-management of HIV has more in common with all chronic diseases than differences suggests that the design and delivery of HIV support services can be incorporated into combined or integrated prevention and wellness services.
在艾滋病护理领域，艾滋病毒/艾滋病被广泛视为一种慢性病，但在该领域之外的慢性病列表中却常常被排除在外。与其他慢性病类似，感染艾滋病毒需要在身体健康、心理功能、社会关系等方面做出终身改变，并采用特定疾病的治疗方案。从急性病向慢性病的转变需要一种自我管理模式，在这种模式下，患者在医疗决策中发挥积极且明智的作用，改变行为和社会关系，以优化健康状况，并积极应对慢性病（尤其是艾滋病毒相关慢性病）普遍存在的可预见挑战。本文回顾了有关慢性病自我管理的文献，以确定慢性病共有的因素，突出艾滋病毒特有的挑战，并审视针对艾滋病毒感染者（PLH）和其他慢性病患者的自我管理干预措施的最新进展。文中提出了一个慢性病自我管理中常见要素或任务的综合框架，该框架在三大类中概述了14个要素：身体健康、心理功能和社会关系。身体健康的常见要素包括：理解疾病与健康的框架、促进健康的行为、治疗依从性、身体状况自我监测、获得适当的治疗和服务以及预防传播。与心理功能相关的要素包括：自我效能感与赋权、认知技能、减少负面情绪状态以及应对身份转变。社会关系要素包括：与医疗服务提供者的协作关系、社会支持、信息披露与耻辱管理以及积极的社会和家庭关系。全球都需要扩大慢性病自我管理服务，包括针对艾滋病毒的服务，但在医疗系统和提供者能力方面存在重大挑战，耻辱感是艾滋病毒相关服务利用的重大障碍。认识到艾滋病毒的自我管理与所有慢性病的共同点多于差异，这表明艾滋病毒支持服务的设计和提供可以纳入综合或整合的预防与健康服务之中。
