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Exploring disability from the perspective of adults living with HIV/AIDS: development of a conceptual framework.

O'Brien KK, Bayoumi AM, Strike C, Young NL, Davis AM - Health Qual Life Outcomes (2008)

Bottom Line: Individuals may experience health-related consequences of HIV and its associated treatments, a concept that may be termed disability.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.

View Article: PubMed Central - HTML - PubMed

Affiliation: Department of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada. kelly.obrien@utoronto.ca

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.

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Episodic Disability Framework: An example of a person's disability experience illustrating the episodic nature of disability that occurs on a daily basis and over the entire course of living with HIV. Episodes of disability may be triggered by life events (brown), and exacerbated or alleviated by extrinsic contextual factors (green) and intrinsic contextual factors (pink).
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Figure 1: Episodic Disability Framework: An example of a person's disability experience illustrating the episodic nature of disability that occurs on a daily basis and over the entire course of living with HIV. Episodes of disability may be triggered by life events (brown), and exacerbated or alleviated by extrinsic contextual factors (green) and intrinsic contextual factors (pink).

Mentions: We developed the Episodic Disability Framework to broadly conceptualize the way in which the multi-dimensional health-related challenges are experienced by adults living with HIV. This framework describes disability across a trajectory of a range of types and levels of disablement (Figure 1). The trajectory includes the day-to-day health fluctuations, or 'good days' and 'bad days', super-imposed along the larger course of disablement that may occur over months or years of living with HIV. Three main components comprise the Episodic Disability Framework: a) dimensions of episodic disability, b) factors that describe the context in which disability is experienced, and c) triggers that may initiate a major or momentous episode of disability.


Exploring disability from the perspective of adults living with HIV/AIDS: development of a conceptual framework.

O'Brien KK, Bayoumi AM, Strike C, Young NL, Davis AM - Health Qual Life Outcomes (2008)

Episodic Disability Framework: An example of a person's disability experience illustrating the episodic nature of disability that occurs on a daily basis and over the entire course of living with HIV. Episodes of disability may be triggered by life events (brown), and exacerbated or alleviated by extrinsic contextual factors (green) and intrinsic contextual factors (pink).
© Copyright Policy - open-access
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC2572592&req=5

Figure 1: Episodic Disability Framework: An example of a person's disability experience illustrating the episodic nature of disability that occurs on a daily basis and over the entire course of living with HIV. Episodes of disability may be triggered by life events (brown), and exacerbated or alleviated by extrinsic contextual factors (green) and intrinsic contextual factors (pink).
Mentions: We developed the Episodic Disability Framework to broadly conceptualize the way in which the multi-dimensional health-related challenges are experienced by adults living with HIV. This framework describes disability across a trajectory of a range of types and levels of disablement (Figure 1). The trajectory includes the day-to-day health fluctuations, or 'good days' and 'bad days', super-imposed along the larger course of disablement that may occur over months or years of living with HIV. Three main components comprise the Episodic Disability Framework: a) dimensions of episodic disability, b) factors that describe the context in which disability is experienced, and c) triggers that may initiate a major or momentous episode of disability.

Bottom Line: Individuals may experience health-related consequences of HIV and its associated treatments, a concept that may be termed disability.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.

View Article: PubMed Central - HTML - PubMed

Affiliation: Department of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada. kelly.obrien@utoronto.ca

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.

Show MeSH
Related in: MedlinePlus