Exploring disability from the perspective of adults living with HIV/AIDS: Development of a conceptual framework
Exploring disability from the perspective of adults living with HIV/AIDS: Development of a conceptual framework
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DOI：
10.1186/1477-7525-6-76
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发表时间：
2008-10-04
影响因子：
3.6
通讯作者：
Davis, Aileen M.
中科院分区：
文献类型：
--
作者：
O'Brien, Kelly K.;Bayoumi, Ahmed M.;Davis, Aileen M.
背景：自从抗逆转录病毒联合治疗出现以来，在发达国家，艾滋病毒越来越被视为一种长期疾病。个人可能会经历艾滋病毒及其相关治疗带来的与健康有关的后果，这一概念可称为残疾。迄今为止，尚未制定一个全面的框架，以了解艾滋病毒感染者所经历的与健康有关的后果。本研究的目的是从艾滋病毒感染者的角度发展残疾的概念框架。方法：对38名成年HIV感染者进行4个焦点小组和15次面对面访谈。我们要求参与者描述他们与健康相关的挑战，他们受影响的身体、社会和心理生活领域，以及对他们整体健康的影响。我们使用扎根理论技术分析数据。我们还对7名回访参与者进行了两次有效性检查焦点小组。结果：残疾被参与者定义为多维的、偶发性的，以不可预测的健康和疾病期为特征。《情景性残疾框架》由三个主要部分组成：a)残疾的各个方面，包括症状和损伤、开展日常活动的困难、对社会包容的挑战以及在感染艾滋病毒期间每天可能波动的不确定性；b)环境因素，包括可能加剧或减轻残疾的外在因素（社会支持和耻辱）和内在因素（生活策略和个人属性）；c)引发重大或重大残疾事件的触发因素，如接受艾滋病毒诊断，开始或改变药物，经历严重疾病，以及失去他人。结论：情景性残疾框架考虑了残疾的可变性，承认不确定性是一个关键组成部分，描述了影响残疾经历的环境因素，并考虑了可能引发重大或重大事件的生活事件。这一框架提出了一种基于艾滋病毒感染者经历来概念化残疾的新方法。
Background: Since the advent of combination antiretroviral therapy, in developed countries HIV increasingly is perceived as a long-term illness. Individuals may experience health-related consequences of HIV and its associated treatments, a concept that may be termed disability. To date, a comprehensive framework for understanding the health-related consequences experienced by people living with HIV has not been developed. The purpose of this research was to develop a conceptual framework of disability from the perspective of adults living with HIV.Methods: We conducted four focus groups and 15 face-to-face interviews with 38 adults living with HIV. We asked participants to describe their health-related challenges, their physical, social and psychological areas of life affected, and impact on their overall health. We analyzed data using grounded theory techniques. We also conducted two validity check focus groups with seven returning participants.Results: Disability was conceptualized by participants as multi-dimensional and episodic characterized by unpredictable periods of wellness and illness. The Episodic Disability Framework consisted of three main components: a) dimensions of disability that included symptoms and impairments, difficulties carrying out day-to-day activities, challenges to social inclusion, and uncertainty that may fluctuate on a daily basis and over the course of living with HIV, b) contextual factors that included extrinsic factors ( social support and stigma) and intrinsic factors ( living strategies and personal attributes) that may exacerbate or alleviate disability, and c) triggers that initiate momentous or major episodes of disability such as receiving an HIV diagnosis, starting or changing medications, experiencing a serious illness, and suffering a loss of others.Conclusion: The Episodic Disability Framework considers the variable nature of disability, acknowledges uncertainty as a key component, describes contextual factors that influence experiences of disability, and considers life events that may initiate a major or momentous episode. This framework presents a new way to conceptualize disability based on the experience of living with HIV.