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|Title: ||Putting episodic disability into context: a qualitative study exploring|
|Authors: ||O’Brien, KK|
|Keywords: ||Putting episodic disability into context: a qualitative study exploring|
|Issue Date: ||9-Nov-2009|
|Publisher: ||Journal of the International AIDS Society|
|Citation: ||Journal of the International AIDS Society 2009, 12:30|
|Abstract: ||Background: An increasing number of individuals may be living with the health-related consequences of HIV and
its associated treatments, a concept we term disability. However, the context in which disability is experienced
from the HIV perspective is not well understood. The purpose of this paper is to describe the contextual factors
that influence the experiences of disability from the perspective of adults living with HIV.
Methods: We conducted four focus groups and 15 face-to-face interviews with 38 men and women living with
HIV. We asked participants to describe their health-related challenges, the physical, social and psychological areas
of their life affected, and the impact of these challenges on their overall health. We also conducted two validity
check focus groups with seven returning participants. We analyzed data using grounded theory techniques to
develop a conceptual framework of disability for adults living with HIV, called the Episodic Disability Framework.
Results: Contextual factors that influenced disability were integral to participants' experiences and emerged as
a key component of the framework. Extrinsic contextual factors included social support (support from friends,
family, partners, pets and community, support from health care services and personnel, and programme and policy
support) and stigma. Intrinsic contextual factors included living strategies (seeking social interaction with others,
maintaining a sense of control over life and the illness, "blocking HIV out of the mind", and adopting attitudes and
beliefs to help manage living with HIV) and personal attributes (gender and aging). These factors may exacerbate
or alleviate dimensions of HIV disability.
Conclusion: This framework is the first to consider the contextual factors that influence experiences of disability
from the perspective of adults living with HIV. Extrinsic factors (level of social support and stigma) and intrinsic
factors (living strategies and personal attributes) may exacerbate or alleviate episodes of HIV-related disability.
These factors offer a broader understanding of the disability experience and may suggest ways to prevent or
reduce disability for adults living with HIV.|
|Appears in Collections:||UofT Faculty publications|
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