Experiencing and Managing HIV/AIDS in Later Life: Social Support, Mental Health and Quality of Life
Lead Research Organisation:
Keele University
Department Name: Research Institute for Social Sciences
Abstract
Effective medical treatment and growing rates of HIV infection among those aged 50+ have produced an ageing population of people living with HIV/AIDS (PLWHA). Epidemiologists estimate that by 2015, half of PLWHA will be aged 50 or above. This rapidly ageing population is also much more diverse than was the same population of earlier years, consisting of two distinct groups with very different personal histories and circumstances whose effects on social support, mental health, and quality of life (QoL) remain poorly understood.
These groups are the long-term infected, mainly men who have sex with men (MSM), who experienced high mortality rates among their communities in the 1980s-1990s, and people infected and/or diagnosed in later life. Within this second group, in the UK, 33% are heterosexual men (half of whom are Black African), and 25% are heterosexual women (of whom 68% are Black African), while 40% are MSM, most of whom are White. Older PLWHA generally experience higher rates of mortality, illness and depression than do younger PLWHA and, unlike the uninfected, their depression rates do not decrease with age. Older PLWHA?s lasting depression is likely due to their smaller and more fragile social support networks, which have been shown to cause ill health among all groups. But for PLWHA, ?elevated distress and low social support take on added importance because they can accelerate disease progression? (Chesney et al. 2003).
Despite growing academic and medical concern with this ageing and increasingly diverse PLWHA population, we still know little about its members? quality of life (QoL), mental health and social support needs, and how their different histories and circumstances shape how they experience and manage HIV/AIDS in later life. The proposed study (with a team representing social science, medicine, and the HIV/AIDS community) aims to better understand these issues, and to use this new knowledge to develop interventions to improve older PLWHA?s social support, mental health, and QoL.
To do this, the team will interview stakeholders (e.g. clinicians, policy makers, and HIV/AIDS activists), then interview and gather mental health survey data from a representative sample of approximately 90 PLWHA aged 50+. This sample, recruited through two key HIV clinics in London, will reflect the current older PLWHA UK population. The team will be guided at all stages of research by a diverse advisory board led by iBase, an HIV-treatment activist organization, and share its findings with the academic, clinical, and HIV/AIDS communities.
These groups are the long-term infected, mainly men who have sex with men (MSM), who experienced high mortality rates among their communities in the 1980s-1990s, and people infected and/or diagnosed in later life. Within this second group, in the UK, 33% are heterosexual men (half of whom are Black African), and 25% are heterosexual women (of whom 68% are Black African), while 40% are MSM, most of whom are White. Older PLWHA generally experience higher rates of mortality, illness and depression than do younger PLWHA and, unlike the uninfected, their depression rates do not decrease with age. Older PLWHA?s lasting depression is likely due to their smaller and more fragile social support networks, which have been shown to cause ill health among all groups. But for PLWHA, ?elevated distress and low social support take on added importance because they can accelerate disease progression? (Chesney et al. 2003).
Despite growing academic and medical concern with this ageing and increasingly diverse PLWHA population, we still know little about its members? quality of life (QoL), mental health and social support needs, and how their different histories and circumstances shape how they experience and manage HIV/AIDS in later life. The proposed study (with a team representing social science, medicine, and the HIV/AIDS community) aims to better understand these issues, and to use this new knowledge to develop interventions to improve older PLWHA?s social support, mental health, and QoL.
To do this, the team will interview stakeholders (e.g. clinicians, policy makers, and HIV/AIDS activists), then interview and gather mental health survey data from a representative sample of approximately 90 PLWHA aged 50+. This sample, recruited through two key HIV clinics in London, will reflect the current older PLWHA UK population. The team will be guided at all stages of research by a diverse advisory board led by iBase, an HIV-treatment activist organization, and share its findings with the academic, clinical, and HIV/AIDS communities.
Technical Summary
Effective antiretroviral medications and growing rates of HIV infection among those aged 50+ have produced an ageing population of people living with HIV/AIDS (PLWHA), with estimates that by 2015, 50% of PLWHA will be aged 50+. This rapidly ageing PLWHA population is also vastly more diverse than the PLWHA population of earlier years, comprised of two distinct cohorts distinguished by age and historical era in which HIV infection occurred, with very different personal histories and circumstances whose effects on social support, mental health, and quality of life (QoL) are currently unknown.
These cohorts are (a) the long-term infected, mainly men who have sex with men (MSM), who experienced high mortality rates among their communities in the 1980s-1990s, and (b) those infected and/or diagnosed in later life. Within this later group, in the UK, 33% are heterosexual men (half of whom are Black African), and 25% are heterosexual women (of whom 68% are Black African), while 40% are MSM, most of whom are White. Older PLWHA generally experience higher rates of mortality, morbidity, and depression than do younger PLWHA and, unlike the uninfected, do not see their ?rates of depression ? decrease with age? (HARS 2009). This is likely due to older PLWHA?s relatively smaller and more fragile social support networks, which have been shown to cause poor health among other populations.
For PLWHA, ?elevated distress and low social support take on added importance because they can accelerate disease progression? (Chesney et al. 2003). Despite increasing awareness about this ageing PLWHA population, we still know little about how the experience, management and impact of HIV/AIDS in later life are filtered through these individuals? different histories and circumstances, and about their quality of life (QoL), mental health and social support needs.
To understand these issues, and to ground a larger study designed to develop interventions to improve this population?s social support, mental health, and QoL, the multidisciplinary team (representing social science, clinical medicine, and service provision) will interview stakeholders, including clinicians, policy makers and HIV/AIDS activists, conduct interviews and obtain mental health survey data from a purposefully sampled group of PLWHA aged 50+, covering the current older PLWHA UK population?s demographic composition and recruited through two key HIV clinics in London. The project will be guided by a diverse advisory board led by iBase, an HIV-treatment activist organization, and the projects findings will be disseminated to the academic, clinical, and HIV/AIDS communities.
These cohorts are (a) the long-term infected, mainly men who have sex with men (MSM), who experienced high mortality rates among their communities in the 1980s-1990s, and (b) those infected and/or diagnosed in later life. Within this later group, in the UK, 33% are heterosexual men (half of whom are Black African), and 25% are heterosexual women (of whom 68% are Black African), while 40% are MSM, most of whom are White. Older PLWHA generally experience higher rates of mortality, morbidity, and depression than do younger PLWHA and, unlike the uninfected, do not see their ?rates of depression ? decrease with age? (HARS 2009). This is likely due to older PLWHA?s relatively smaller and more fragile social support networks, which have been shown to cause poor health among other populations.
For PLWHA, ?elevated distress and low social support take on added importance because they can accelerate disease progression? (Chesney et al. 2003). Despite increasing awareness about this ageing PLWHA population, we still know little about how the experience, management and impact of HIV/AIDS in later life are filtered through these individuals? different histories and circumstances, and about their quality of life (QoL), mental health and social support needs.
To understand these issues, and to ground a larger study designed to develop interventions to improve this population?s social support, mental health, and QoL, the multidisciplinary team (representing social science, clinical medicine, and service provision) will interview stakeholders, including clinicians, policy makers and HIV/AIDS activists, conduct interviews and obtain mental health survey data from a purposefully sampled group of PLWHA aged 50+, covering the current older PLWHA UK population?s demographic composition and recruited through two key HIV clinics in London. The project will be guided by a diverse advisory board led by iBase, an HIV-treatment activist organization, and the projects findings will be disseminated to the academic, clinical, and HIV/AIDS communities.
