Aging With HIV
Aging With HIV
This model builds upon the episodic disability framework through describing a model of disability specific to the context of older adults with HIV. While a component of the episodic disability framework, uncertainty related to aging was at the core of disability described by older adults with HIV. This suggests that health and social service providers have an important role to play in supporting individuals to cope with the uncertainty in their lives. The most notable differences in this model were the elements of time that surrounded and influenced the entire disability experience. Chronological time including time since diagnosis and time on medication had an effect on symptoms, daily activities, and social participation. Time in the workforce affected current available finances and contributed to uncertainty, financial resources, and planning for the future. The episodic nature of the disability emerged over time and contributed to uncertainty as did the sense of growing older faster or accelerated aging with HIV. Others have found that adults living with HIV have reoriented the meaning of time to regain a sense of control by living in the moment rather than focusing on an uncertain future or by valuing the quality of their time rather than quantity. In our model, time is an overarching component influencing the contextual factors and disability. Participants are aware of the passage of time and have a sense of growing older. The relationship is complex and points to a need for research to better understand the challenges of aging with the episodic and unpredictable nature of HIV. As with aging, episodic disability is a temporal process, and the consequences and contributions to disability can only be illuminated through longitudinal study.
Our findings highlight the complex and multidimensional nature of stigma as it specifically relates to older adults with HIV. The understanding of how ageism interacts with other sources of stigma is in its infancy. Given the relationship between stigma and depression and the increased social isolation experienced by older adults living with HIV, it will be important to understand how ageism affects the overall disability experience. Brennan et al note the exacerbating effect of age-related stigma on HIV stigma. They call for integration of stigma assessments by those working in HIV and gerontological fields. Most of the participants in our study had not directly experienced ageism; this could be due to their relatively young median age of 56 years. However, many expressed a fear of age-related stigma. In our model, stigma is an important component of the external environment, affecting all components of disability and reinforcing the need for widespread stigma interventions.
Social support is a social determinant of health that has been examined extensively in both the gerontological literature and adults less than 50 years with HIV. An emerging literature has focussed on older adults living with HIV. Scrimshaw and Siegel identified 7 barriers to social support in older adults with HIV, of which only one, ageism, was unique to older adults. However, they hypothesized that the barriers common to all ages may be more prevalent or severe in older adults living with HIV. Emlet's work supports this notion. He compared the social networks and social isolation among both older and younger HIV-positive adults and found that a higher percentage of older adults were at risk of social isolation. Our participants recognized the need for social support but understood the importance of quality support and became selective about with whom they would engage, suggesting engagement in an active problem-solving approach to manage aspects of social participation.
Participants used a combination of living strategies in order to address the challenges of aging with HIV. Many participants spoke of being positive about growing older and identified strategies that combated uncertainty by maintaining a sense of control. These positive living strategies are similar to those of self-acceptance, optimism, and self-management that promote resilience, a positive concept of aging. While it was not our intent to specifically identify strengths and resilience of older adults living with HIV, these emerged through the development of our model. We support recommendations for further research to understand successful aging among adults living with HIV in order to identify those at most risk. The field of gerontology has explored the construct of "successful" aging but there has been little application to HIV. Our work suggests that focusing on the episodic nature of the illness and the impact of uncertainty on the disablement process is key to increasing this understanding.
Our study possesses some limitations. First, participants were relatively young. The definition of "older age" in the context of HIV continues to be debated. We used 50 years and older to be consistent with epidemiological reports. There is evidence for differences in age-related challenges between adults living with HIV in their 50s and 60s, suggesting the importance of examining the influence of age by decade rather than as a heterogeneous group older than 50 years of age. In contrast, the limitations of using chronological age to examine health and social outcomes among adults living with HIV were noted in a 2011 review by Sankar et al. Second, our sample was recruited primarily from AIDS service organizations in southern Ontario. Users of AIDS service organizations tend to reside in urban areas, and thus these findings may not be applicable to older adults living in more rural areas who may experience more social isolation and fewer HIV-specific supports. Third, there is a growing cohort of older adults (more than 50 years) who have become HIV positive. This cohort was not represented in our sample. It is likely that the disability experienced by those acquiring HIV in older adulthood is very different from those described by the men and women in this study. Further inquiry comparing the similarities and differences between these 2 cohorts is needed. Finally, some of the components of our model may not be related to aging and have been highlighted in PLWHA of more than 50 years. This reinforces the difficulty in separating age-related consequences from HIV-related consequences.
Although the element of time is nonmodifiable, other extrinsic and intrinsic contextual factors of this model suggest areas in which interventions may be implemented in order to prevent or reduce disability experienced by older adults with HIV. The consequences of disability can be addressed through rehabilitation, a dynamic process aimed at maintaining, restoring, and enhancing quality of life. In spite of the potential role of rehabilitation, few rehabilitation professionals are involved in rehabilitation care. Although the treatment guidelines for older adults living with HIV refer to issues such as frailty and functional capacity and highlight common comorbidities that are amenable to rehabilitation, rehabilitation strategies are largely absent.
HIV has become a complex chronic disease, which cannot be understood by studying isolated parts. There is a need to understand the consequences of aging with HIV and the impact on quality of life. This study is the first to portray a model of disability experienced by older adults with HIV. The complex relationships in the model reinforce the need for a multifaceted comprehensive approach incorporating rehabilitation in the care, treatment, and support of adults aging with HIV.
Discussion
This model builds upon the episodic disability framework through describing a model of disability specific to the context of older adults with HIV. While a component of the episodic disability framework, uncertainty related to aging was at the core of disability described by older adults with HIV. This suggests that health and social service providers have an important role to play in supporting individuals to cope with the uncertainty in their lives. The most notable differences in this model were the elements of time that surrounded and influenced the entire disability experience. Chronological time including time since diagnosis and time on medication had an effect on symptoms, daily activities, and social participation. Time in the workforce affected current available finances and contributed to uncertainty, financial resources, and planning for the future. The episodic nature of the disability emerged over time and contributed to uncertainty as did the sense of growing older faster or accelerated aging with HIV. Others have found that adults living with HIV have reoriented the meaning of time to regain a sense of control by living in the moment rather than focusing on an uncertain future or by valuing the quality of their time rather than quantity. In our model, time is an overarching component influencing the contextual factors and disability. Participants are aware of the passage of time and have a sense of growing older. The relationship is complex and points to a need for research to better understand the challenges of aging with the episodic and unpredictable nature of HIV. As with aging, episodic disability is a temporal process, and the consequences and contributions to disability can only be illuminated through longitudinal study.
Our findings highlight the complex and multidimensional nature of stigma as it specifically relates to older adults with HIV. The understanding of how ageism interacts with other sources of stigma is in its infancy. Given the relationship between stigma and depression and the increased social isolation experienced by older adults living with HIV, it will be important to understand how ageism affects the overall disability experience. Brennan et al note the exacerbating effect of age-related stigma on HIV stigma. They call for integration of stigma assessments by those working in HIV and gerontological fields. Most of the participants in our study had not directly experienced ageism; this could be due to their relatively young median age of 56 years. However, many expressed a fear of age-related stigma. In our model, stigma is an important component of the external environment, affecting all components of disability and reinforcing the need for widespread stigma interventions.
Social support is a social determinant of health that has been examined extensively in both the gerontological literature and adults less than 50 years with HIV. An emerging literature has focussed on older adults living with HIV. Scrimshaw and Siegel identified 7 barriers to social support in older adults with HIV, of which only one, ageism, was unique to older adults. However, they hypothesized that the barriers common to all ages may be more prevalent or severe in older adults living with HIV. Emlet's work supports this notion. He compared the social networks and social isolation among both older and younger HIV-positive adults and found that a higher percentage of older adults were at risk of social isolation. Our participants recognized the need for social support but understood the importance of quality support and became selective about with whom they would engage, suggesting engagement in an active problem-solving approach to manage aspects of social participation.
Participants used a combination of living strategies in order to address the challenges of aging with HIV. Many participants spoke of being positive about growing older and identified strategies that combated uncertainty by maintaining a sense of control. These positive living strategies are similar to those of self-acceptance, optimism, and self-management that promote resilience, a positive concept of aging. While it was not our intent to specifically identify strengths and resilience of older adults living with HIV, these emerged through the development of our model. We support recommendations for further research to understand successful aging among adults living with HIV in order to identify those at most risk. The field of gerontology has explored the construct of "successful" aging but there has been little application to HIV. Our work suggests that focusing on the episodic nature of the illness and the impact of uncertainty on the disablement process is key to increasing this understanding.
Our study possesses some limitations. First, participants were relatively young. The definition of "older age" in the context of HIV continues to be debated. We used 50 years and older to be consistent with epidemiological reports. There is evidence for differences in age-related challenges between adults living with HIV in their 50s and 60s, suggesting the importance of examining the influence of age by decade rather than as a heterogeneous group older than 50 years of age. In contrast, the limitations of using chronological age to examine health and social outcomes among adults living with HIV were noted in a 2011 review by Sankar et al. Second, our sample was recruited primarily from AIDS service organizations in southern Ontario. Users of AIDS service organizations tend to reside in urban areas, and thus these findings may not be applicable to older adults living in more rural areas who may experience more social isolation and fewer HIV-specific supports. Third, there is a growing cohort of older adults (more than 50 years) who have become HIV positive. This cohort was not represented in our sample. It is likely that the disability experienced by those acquiring HIV in older adulthood is very different from those described by the men and women in this study. Further inquiry comparing the similarities and differences between these 2 cohorts is needed. Finally, some of the components of our model may not be related to aging and have been highlighted in PLWHA of more than 50 years. This reinforces the difficulty in separating age-related consequences from HIV-related consequences.
Although the element of time is nonmodifiable, other extrinsic and intrinsic contextual factors of this model suggest areas in which interventions may be implemented in order to prevent or reduce disability experienced by older adults with HIV. The consequences of disability can be addressed through rehabilitation, a dynamic process aimed at maintaining, restoring, and enhancing quality of life. In spite of the potential role of rehabilitation, few rehabilitation professionals are involved in rehabilitation care. Although the treatment guidelines for older adults living with HIV refer to issues such as frailty and functional capacity and highlight common comorbidities that are amenable to rehabilitation, rehabilitation strategies are largely absent.
HIV has become a complex chronic disease, which cannot be understood by studying isolated parts. There is a need to understand the consequences of aging with HIV and the impact on quality of life. This study is the first to portray a model of disability experienced by older adults with HIV. The complex relationships in the model reinforce the need for a multifaceted comprehensive approach incorporating rehabilitation in the care, treatment, and support of adults aging with HIV.
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