Aging With HIV
Aging With HIV
The purpose of this qualitative study was to develop a theoretical model describing the disability experienced by older adults living with HIV. Forty nine HIV positive men and women over the age of 50 years participated in in-depth qualitative interviews. Transcribed interviews were analyzed using grounded theory techniques. Uncertainty or worrying about the future was at the core of the model. Components of disability including symptoms and impairments, difficulties with day to day activities and challenges to social participation were experienced in the context of extrinsic or environmental factors (social support, stigma) and intrinsic contextual factors (positive living strategies, age). Time was an overarching component of the model. The model suggests areas for interventions to prevent or reduce disability related to the consequences of aging with HIV and improve overall quality of life.
The shift in the natural history of HIV has meant that people are living longer with HIV and its associated comorbidities. It is unclear whether HIV infection promotes "accelerated aging" or whether HIV is a risk factor, which increases the likelihood of developing comorbid conditions such as cardiovascular disease, cancer, osteoporosis, liver disease, and functional decline. Regardless, as people living with HIV/AIDS (PLWHA) grow older, it is important to understand the health-related consequences of HIV and its associated comorbidities, otherwise termed as disability.
A number of theoretical models and disability frameworks convey the consequences of illness, beyond the traditional biomedical models of disease. The World Health Organization developed a model of disability (International Classification of Functioning, Disability and Health [ICF]) that considers the consequences of disease at 3 levels including body structure or function (eg, pain), activity (eg, climbing stairs), and participation in society (eg, working). This model incorporates environmental and personal contextual factors that interact with and influence health. The ICF focuses on how individuals live with their health conditions and how these contextual factors interact with the health condition to determine the level of an individual's function.
The Episodic Disability Framework was developed specifically from the perspective of adults living with HIV who described the disability experience as episodic and fluctuating over time. The framework includes 4 dimensions of disability, namely physical, cognitive, mental, and emotional symptoms and impairments; difficulties with day-to-day activities; challenges to social inclusion; and uncertainty or worrying about the future. The framework also highlights the importance of understanding how extrinsic contextual factors (eg, social support and stigma) and intrinsic contextual factors (eg, living strategies and personal attributes) exacerbate or alleviate each of the 4 dimensions of disability. This framework goes beyond the ICF to identify uncertainty as a key dimension of disability and incorporates the episodic nature of disability. It also describes in detail the living strategies that individuals use to alleviate disability. Hence, the episodic disability framework is an ideal foundation for considering the health-related consequences of HIV and aging.
As more individuals live longer with HIV, there is a need for greater understanding of the consequences of aging with an episodic illness and resulting disability. The purpose of this research was to develop a theoretical model that describes disability experienced by older adults living with HIV. We developed this model by exploring the impact of living with a chronic and episodic illness from the older adults' perspective through a disability lens. In this article, we highlight the personal and environmental components of the model that affect disability experienced by older adults living with HIV.
Abstract and Introduction
Abstract
The purpose of this qualitative study was to develop a theoretical model describing the disability experienced by older adults living with HIV. Forty nine HIV positive men and women over the age of 50 years participated in in-depth qualitative interviews. Transcribed interviews were analyzed using grounded theory techniques. Uncertainty or worrying about the future was at the core of the model. Components of disability including symptoms and impairments, difficulties with day to day activities and challenges to social participation were experienced in the context of extrinsic or environmental factors (social support, stigma) and intrinsic contextual factors (positive living strategies, age). Time was an overarching component of the model. The model suggests areas for interventions to prevent or reduce disability related to the consequences of aging with HIV and improve overall quality of life.
Introduction
The shift in the natural history of HIV has meant that people are living longer with HIV and its associated comorbidities. It is unclear whether HIV infection promotes "accelerated aging" or whether HIV is a risk factor, which increases the likelihood of developing comorbid conditions such as cardiovascular disease, cancer, osteoporosis, liver disease, and functional decline. Regardless, as people living with HIV/AIDS (PLWHA) grow older, it is important to understand the health-related consequences of HIV and its associated comorbidities, otherwise termed as disability.
A number of theoretical models and disability frameworks convey the consequences of illness, beyond the traditional biomedical models of disease. The World Health Organization developed a model of disability (International Classification of Functioning, Disability and Health [ICF]) that considers the consequences of disease at 3 levels including body structure or function (eg, pain), activity (eg, climbing stairs), and participation in society (eg, working). This model incorporates environmental and personal contextual factors that interact with and influence health. The ICF focuses on how individuals live with their health conditions and how these contextual factors interact with the health condition to determine the level of an individual's function.
The Episodic Disability Framework was developed specifically from the perspective of adults living with HIV who described the disability experience as episodic and fluctuating over time. The framework includes 4 dimensions of disability, namely physical, cognitive, mental, and emotional symptoms and impairments; difficulties with day-to-day activities; challenges to social inclusion; and uncertainty or worrying about the future. The framework also highlights the importance of understanding how extrinsic contextual factors (eg, social support and stigma) and intrinsic contextual factors (eg, living strategies and personal attributes) exacerbate or alleviate each of the 4 dimensions of disability. This framework goes beyond the ICF to identify uncertainty as a key dimension of disability and incorporates the episodic nature of disability. It also describes in detail the living strategies that individuals use to alleviate disability. Hence, the episodic disability framework is an ideal foundation for considering the health-related consequences of HIV and aging.
As more individuals live longer with HIV, there is a need for greater understanding of the consequences of aging with an episodic illness and resulting disability. The purpose of this research was to develop a theoretical model that describes disability experienced by older adults living with HIV. We developed this model by exploring the impact of living with a chronic and episodic illness from the older adults' perspective through a disability lens. In this article, we highlight the personal and environmental components of the model that affect disability experienced by older adults living with HIV.
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