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|Title: ||Exploring Disability from the Perspective of Adults Living with HIV/AIDS: Development of a Conceptual Framework|
|Authors: ||O’Brien, K|
|Keywords: ||Exploring disability from the perspective of adults living with|
|Issue Date: ||4-Oct-2008|
|Publisher: ||Health and Quality of Life Outcomes|
|Citation: ||Health and Quality of Life Outcomes, 2008; 6:87|
|Abstract: ||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.|
|Appears in Collections:||UofT Faculty publications|
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