O'Brien Kelly K, Bayoumi Ahmed M, Strike Carol, Young Nancy L, Davis Aileen M
Department of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada.
Health Qual Life Outcomes. 2008 Oct 4;6:76. doi: 10.1186/1477-7525-6-76.
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.
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.
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.
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.
自从联合抗逆转录病毒疗法问世以来，在发达国家，艾滋病越来越被视为一种慢性病。感染者可能会经历与艾滋病及其相关治疗有关的健康问题，这一概念可称为残疾。迄今为止，尚未建立一个全面的框架来理解艾滋病感染者所经历的与健康相关的后果。本研究的目的是从成年艾滋病感染者的角度建立一个残疾概念框架。
我们对38名成年艾滋病感染者进行了4次焦点小组讨论和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、生活中受到影响的身体、社会和心理领域，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。我们还与7名回访参与者进行了2次效度检验焦点小组讨论。
参与者将残疾概念化为多维的和偶发性的，其特征是健康和疾病时期不可预测。偶发性残疾框架由三个主要部分组成：a）残疾维度，包括症状和损伤、进行日常活动的困难、社会融入的挑战以及可能在日常生活中以及感染艾滋病毒的过程中波动的不确定性；b）背景因素，包括可能加重或减轻残疾的外部因素（社会支持和耻辱感）和内部因素（生活策略和个人属性）；c）引发重大或严重残疾发作的触发因素，如接受艾滋病毒诊断、开始或改变药物治疗、经历严重疾病以及遭受他人损失。
偶发性残疾框架考虑了残疾的可变性质，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背景因素，并考虑了可能引发重大或严重发作的生活事件。这个框架提出了一种基于感染艾滋病毒经历来概念化残疾的新方法。
