Research priorities for rehabilitation and aging with HIV: a framework from the Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC).

BACKGROUND: People living with HIV are living longer, and can experience physical, mental and social health challenges associated with aging and multimorbidity. Rehabilitation is well positioned to address disability and maximize healthy aging. An international collaborative network, called the Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC), works to guide this emerging field. In this article, we report findings from CIHRRC's aim to identify emerging research priorities in HIV, aging and rehabilitation from the perspectives of people living with HIV, clinicians, researchers, representatives from community organizations and policy stakeholders. METHODS: We conducted a multi-stakeholder multi-method international consultation with people living with HIV, researchers, clinicians and representatives of community-based organizations to identify research priorities in HIV, aging and rehabilitation. Stakeholders identified research priorities during a one-day International Forum comprised of presentations and facilitated discussion. We collated and analyzed data using content analytical techniques, resulting in a framework of research priorities. RESULTS: Sixty-nine stakeholders from countries including Canada (n = 62; 90%), the United Kingdom (n = 5; 7%), United States (n = 1; 1%) and Australia (n = 1; 1%) attended the International Forum on HIV, Aging and Rehabilitation Research. Stakeholders represented community-based organizations (n = 20; 29%), academic institutions (n = 18; 26%), community or institutional healthcare organizations (n = 11; 16%), research or knowledge production organizations (n = 10; 14%), and organizations representing government or industry (n = 10; 14%). The Framework of Research Priorities in HIV, Aging and Rehabilitation includes seven research priorities: (1) nature, extent and impact of disability, concurrent health conditions and chronic inflammation with HIV; (2) prevalence, severity and impact of frailty; (3) community and social participation aging with HIV; (4) strategies for chronic disease management and healthy aging with HIV; (5) facilitators and barriers to access and engagement in, rehabilitation; (6) effectiveness of rehabilitation interventions for healthy aging with HIV; and (7) advancing development and use of patient reported outcome measures in HIV and aging. The Framework highlights methodological considerations to approach the priorities and the importance of knowledge translation and exchange to apply research knowledge into practice, programs and policy. CONCLUSIONS: These priorities offer a foundation for collaboration among international and multidisciplinary teams to advance the field of HIV, aging and rehabilitation in order to promote healthy aging with HIV.

Timing of Diagnosis: Understanding Resilience Narratives of HIV Positive Older Adults Diagnosed Pre- and Post-HAART.

BACKGROUND: Despite the growing population of older adults living with human immunodeficiency virus/ acquired immune deficiency syndrome (HIV/AIDS), few studies have examined this population in terms of timing of HIV diagnosis. This study explores resilience and protective factors among HIV-positive older adults, 17 of whom were diagnosed prior to the development of highly active antiretroviral therapy (HAART), and 13 of whom were diagnosed after the development of HAART. METHODS: We explored the concepts of resilience and protective factors in 30 older adults living with HIV in Ontario, Canada. A qualitative approach was used to conduct in-depth interviews and grounded theory techniques were used to analyze the interview transcripts. RESULTS: Having lived with HIV for nearly 30 years, the pre-HAART group had developed more personal strategies for enhancing resilience, including self-care behaviors. They were more regimented and dedicated to their daily health, and were more engaged in their medical care as opposed to the post-HAART group who viewed self-care as staying adherent and refraining from risky health behaviors. IMPLICATIONS: Although HAART has radically changed the prognosis of HIV, we have limited information about the differences between those who were diagnosed before and after the development of HAART. We will present recommendations for addressing previous trauma and improving self-care.

Social, Economic, and Health Disparities Among LGBT Older Adults.

LGBT older adults are a heterogeneous population with collective and unique strengths and challenges. Health, personal, and economic disparities exist in this group when compared to the general population of older adults, yet subgroups such as transgender and bisexual older adults and individuals living with HIV are at greater risk for disparities and poorer health outcomes. As this population grows, further research is needed on factors that contribute to promoting health equity, while decreasing discrimination and improving competent service delivery.

The impact of HIV-related stigma on older and younger adults living with HIV disease: does age matter?

The purpose of this study was to examine the independent influence of age on levels of HIV-related stigma experienced by adults living with HIV/AIDS. To accomplish this, cross-sectional data from the Ontario HIV Treatment Network Cohort Study were used to determine whether older age is associated with overall stigma among HIV-positive adults living in Ontario, Canada (n = 960). The relationship was also tested for enacted, anticipated, and internalized stigma. Covariates included sociodemographic (e.g., gender, sexual orientation, race) and psychosocial variables (e.g., depression). Modifying effects of covariates were also investigated. Those 55 and older have significantly lower overall and internalized stigma than adults under age 40, even when accounting for gender, sexual orientation, income, time since diagnosis, depression, maladaptive coping, and social support. Age does not predict enacted or Anticipated Stigma when accounting for the demographic and psychosocial variables. A significant interaction between depression and age suggests that stigma declines with age among those who are depressed but increases to age 50 and then decreases in older age groups among those who are not depressed. Age matters when it comes to understanding stigma among adults living with HIV/AIDS; however, the relationship between age and stigma is complex, varying according to stigma type and depression level.

Attitudes and stereotypes regarding older women and HIV risk.

Persons aged 50 years and over will soon disproportionately represent the future of the HIV/AIDS epidemic. It is estimated that by 2015 older adults will represent 50% of persons living with HIV in the United States. Despite the HIV/AIDS growing population among older adults, attitudes, beliefs, and stereotypes toward older adults that exist in general society have affected HIV prevention, education, and care. Specifically, ageist attitudes about the sexuality of older adults in general and older women in particular, low clinical HIV suspicion among healthcare providers, lack of knowledge about risk among older women, and differentials in power related to negotiating sexual practices all lead to heightened concerns for the prevention, identification, and treatment of HIV disease in mature women. This article examines common attitudes, beliefs, and stereotypes that exist within general society as well as health and social service providers that place older women at a disadvantage when it comes to HIV prevention, education, and treatment.

Creating a vision for the future: key competencies and strategies for culturally competent practice with lesbian, gay, bisexual, and transgender (LGBT) older adults in the health and human services.

Sexual orientation and gender identity are not commonly addressed in health and human service delivery, or in educational degree programs. Based on findings from Caring and Aging with Pride: The National Health, Aging and Sexuality Study (CAP), the first national federally-funded research project on LGBT health and aging, this article outlines 10 core competencies and aligns them with specific strategies to improve professional practice and service development to promote the well-being of LGBT older adults and their families. The articulation of key competencies is needed to provide a blueprint for action for addressing the growing needs of LGBT older adults, their families, and their communities.

Protective and risk factors associated with stigma in a population of older adults living with HIV in Ontario, Canada.

Although the deleterious effects of HIV stigma are well documented, less is known about how various types of stigma impact older adults living with HIV disease and what factors exacerbate or lessen the effects of HIV stigma. Using cross-sectional data from the OHTN cohort study (OCS), we undertook multiple linear regression to determine the predictors of overall HIV stigma, and enacted, anticipated, and internalized stigma subscales in a sample of OCS participants age 50 and over (n = 378). Being female, heterosexual, engaging in maladaptive coping, and having poor self-rated health were associated with greater overall stigma while being older, having greater mastery, increased emotional-informational social support, and a longer time since HIV diagnosis were associated with lower levels of stigma. The final model accounted for 31% of the variance in overall stigma. Differences in these findings by subscale and implications for practice are discussed.

Key Determinants of Physical and Psychological Health-Related Quality of Life Over Time Among Midlife and Older LGBTQ and Sexual and Gender-Diverse Caregivers.

BACKGROUND AND OBJECTIVES: Prior research has shown informal caregiving among older adults can negatively affect the caregiver's physical and psychological health. However, little is known about protective and risk factors associated with the health-related quality of life (HRQOL) of lesbian, gay, bisexual, transgender, and queer (LGBTQ) caregivers. RESEARCH DESIGN AND METHODS: Informed by the Health Equity Promotion Model and Caregiver Stress Process Model and utilizing longitudinal data from Aging with Pride: National Health, Aging, and Sexuality/Gender Study, this analysis examined modifiable risk and protective factors associated with psychological and physical HRQOL over time among 754 LGBTQ caregivers aged 50-98. RESULTS: Psychological and physical HRQOL declined over a 3-year period. After controlling for background characteristics, mastery, social support, socialization, LGBTQ community engagement, and physical activity were positively associated with psychological HRQOL while day-to-day discrimination, identity stigma, and insufficient food intake were negatively associated. Steeper declines were observed for older and with no physical activity. Mastery, social support, socialization, and physical activity were positively associated with physical HRQOL while day-to-day discrimination and insufficient food intake were negatively associated. Steeper declines were found for those with high mastery and no physical activity. DISCUSSION AND IMPLICATIONS: Although generalized factors including mastery, socialization, and social support are protective for HRQOL among LGBTQ caregivers, factors including day-to-day discrimination and identity stigma are more unique to historically disadvantaged populations and should be considered in future research and practice. Caregiving interventions incorporating physical activity are promising given its buffering effect for decreased physical and psychological HRQOL over time.

Generational and Social Forces in the Life Events and Experiences of Lesbian and Gay Midlife and Older Adults Across the Iridescent Life Course.

ObjectivesUtilizing Iridescent Life Course, we examine life events among three generations of lesbian and gay adults: Invisible (born 1920-1934), Silenced (born 1935-1949), and Pride (born 1950-1964) Generations. Methods: We utilized a subsample (n = 2079) from the 2014 wave of Aging with Pride: National Health, Aging, and Sexuality/Gender Study (NHAS). Demographic characteristics, life events, and gender and generational interactions were compared. Results: Compared to other generations, the Invisible Generation disclosed their identity at older ages, were more likely to be retired, served in the military, and survived a partner's death. Compared to the other generations, the Pride Generation was more likely to have disclosed their identities earlier and experienced higher levels of victimization/discrimination. Discussion: This paper is the first to examine the lived experiences of the oldest lesbians and gay men and compare them to other generations. The findings illustrate the heteronormative nature of most life course research.

Design and development of the first randomized controlled trial of an intervention (IDEA) for sexual and gender minority older adults living with dementia and care partners.

BACKGROUND: Heightened risks of cognitive impairment, disability, and barriers to care among sexual and gender minority (SGM) older adults are well documented. To date, culturally responsive evidence-based dementia interventions for this population do not exist. OBJECTIVE: This study describes the design of the first randomized controlled trial (RCT) testing a culturally responsive cognitive behavioral and empowerment intervention, Innovations in Dementia Empowerment and Action (IDEA), developed to address the unique needs of SGM older adults living with dementia and care partners. METHODS: IDEA is a culturally enhanced version of Reducing Disability in Alzheimer's Disease (RDAD), an efficacious, non-pharmaceutical intervention for people with dementia and care partners. We utilized a staggered multiple baseline design with the goal to enroll 150 dyads randomized into two arms of 75 dyads each, enhanced IDEA and standard RDAD. RESULTS: IDEA was adapted using findings from the longitudinal National Health, Aging, and Sexuality/Gender study, which identified modifiable factors for SGM older adults, including SGM-specific discrimination and stigma, health behaviors, and support networks. The adapted intervention employed the original RDAD strategies and enhanced them with culturally responsive empowerment practices designed to cultivate engagement, efficacy, and support mobilization. Outcomes include adherence to physical activity, reduction in perceived stress and stigma, and increased physical functioning, efficacy, social support, engagement, and resource use. CONCLUSION: IDEA addresses contemporary issues for underserved populations living with dementia and their care partners. Our findings will have important implications for marginalized communities by integrating and evaluating the importance of cultural responsiveness in dementia and caregiving interventions.

Aging with Pride: Innovations in Dementia Empowerment and Action (IDEA).

Background: Sexual and gender minority (SGM) older adults and their care partners, compared to the general population, face unique vulnerabilities that exacerbate living with dementia, including elevated disparities in comorbidities, social isolation, and structural inequities, such as discrimination and lack of access to supports. Methods: This paper describes the virtual adaptation process of the first-ever randomized controlled clinical trial intervention, Aging with Pride: Innovations in Dementia Empowerment and Action (IDEA), that was designed for SGM older adults living with dementia and their care partners and built upon the foundation of RDAD and NHAS. Results: The virtual adaptation of IDEA was guided by the goals of accessibility, quality, ease of delivery, sustainability, and cultural relevance. The implementation required the development of a HIPPA-compliant online virtual platform, coach and participant virtual training, and modification of necessary intervention elements and materials, as needed. Based on the preliminary findings, the participants and intervention coaches responded well to the virtual adaptation of IDEA. When comparing to in-person delivery, the virtual delivery decreased attrition among both intervention participants and coaches. Discussion: The virtual adaptation of the IDEA intervention resulted in preliminary, unexpected, yet potentially important benefits, including the ability to expand the reach of the intervention and decreased attrition. Virtual interventions are an emerging field for people living with dementia and their care partners and additional systematic research is needed to fully assess the benefits and limitations as well as to evaluate if specific subgroups are better served by differing delivery modalities.

Disparities in Subjective Cognitive Impairment by Sexual Orientation and Gender in a National Population Based Study of U.S. Adults, 2013-2018.

Objectives: This is the first national population-based study to examine cognitive impairment disparities among sexual minority mid-life and older adults. Methods: Using the National Health Interview Survey (2013-2018), we compared weighted prevalence of subjective cognitive impairment by sexual orientation and gender, among those aged 45 plus, applying logistic regressions adjusting for age, income, education, race/ethnicity, and survey years. Results: Sexual minorities (24.5%) were more likely to have subjective cognitive impairment than heterosexuals (19.1%). Sexual minority women had higher odds of greater severity, frequency, and extent of subjective cognitive impairment. Sexual minorities were also more likely to report activity limitations resulting from cognitive impairment and were no more likely to attribute limitations to dementia or senility. Discussion: Cognitive health disparities are of particular concern in this historically and socially marginalized population. The investigation of explanatory factors is needed, and targeted interventions and policies are warranted to address cognitive challenges faced by sexual minorities.

Older Caregivers With HIV: An Unrecognized Gap in the Literature.

ABSTRACT: Although the number of older people living with HIV (PLWH) is growing, prior research has focused on older PLWH as care recipients and psychosocial factors (e.g., stigma, social support) associated with their HIV care. Literature on HIV caregiving mainly focuses on family members providing care to PLWH or children of parents with HIV. There is a gap in the literature in terms of older PLWH's roles as caregivers to their family members. Thanks to combination antiretrovirals that help PLWH live longer and have healthier lives, many older PLWH now find themselves in a position to provide care to family members. To help older PLWH age successfully, it is important to understand their role as caregivers while they juggle responsibilities with their own health care needs. This article elucidates this gap in the literature on older PLWH who are caregivers and provides direction for a research agenda and potential clinical implications.

Giving Back Is Receiving: The Role of Generativity in Successful Aging Among HIV-Positive Older Adults.

Objectives: Successful aging has been identified as an important emphasis for people living with human immunodeficiency virus (HIV). Little is known about how this population conceptualizes aging successfully and how this relates to generativity. This qualitative study examined the importance of generativity among 30 HIV-positive older adults to determine the role of generativity in successful aging. Method: Participants aged 50+ years were recruited in Ontario, Canada, through acquired immunodeficiency syndrome (AIDS) service organizations, clinics, and community agencies. Qualitative interviews were analyzed to explore strategies participants employed to engage in successful aging within their own personal context. Results: Participants saw themselves as pioneers and mentors, helping others to navigate the landscape of aging with HIV. Four themes were identified through consensus including (a) reciprocity, (b) mentoring, (c) pioneerism, and (d) connecting through volunteerism. Discussion: Interventions that promote intergenerational connections, community involvement, and generative acts within the HIV community can facilitate successful aging among older adults living with HIV/AIDS.

Accounting for HIV Health Disparities: Risk and Protective Factors Among Older Gay and Bisexual Men.

Objective: This study examines whether disparities exist in poor health and depressive symptomatology among older gay/bisexual men (50+) with (n = 371) and without (n = 973) HIV. If so, what risk/promoting factors account for those disparities? Method: These cross-sectional analyses used 2014 data from the Aging With Pride: National Health, Aging, and Sexuality/Gender Study. Results: Those with HIV reported poorer health and more depressive symptomatology accounted for by lower income, resilience and social support, and more lifetime victimization. Poorer health among those with HIV was associated with more chronic conditions. Higher depressive symptomatology was associated with diagnosed anxiety and drug addiction. Community engagement reduced disparities in poor health and depression. Implications: Older gay/bisexual men living with HIV infection are at greater risk for physical and mental health issues. Assessments should be conducted with attention to these risk factors. Interventions for improving social support, resilience, and community engagement are warranted.

The graying of HIV/AIDS: preparedness and needs of the aging network in a changing epidemic.

The number of older adults living in the US with a diagnosis of HIV/AIDS has steadily increased in the past decade. This study examined the extent to which 13 Area Agencies on Aging (AAAs) in Washington State are willing and prepared, and possess the required experience/skills, to serve older adults with a diagnosis of HIV/AIDS and to access the potential impact the further implementation of Aging and Diability Resource Centers (ADRCs) may have on service delivery to this population. Staff were surveyed at AAA's throughout the state. The majority of resondents (84%) agreed that serving HIV+ older adults was consistent with their mission, but few indicated that they had substantial experience with this population. Recommendations for personnel at AAAs and AIDS service organizations are provided.

"The Journey I Have Been Through": The Role of Religion and Spirituality in Aging Well Among HIV-Positive Older Adults.

The National Institutes of Health human immunodeficiency virus (HIV) and Aging Working Group identified spirituality as a research emphasis. This qualitative study examines the importance of religion and spirituality among 30 HIV-positive older adults. Using modified grounded theory, adults 50+ were recruited in Ontario, Canada, through AIDS service organizations, clinics, and community agencies. Descriptions of religion and spirituality encapsulated the idea of a journey, which had two components: the long-term HIV survivor profile combined with the experience of aging itself. A final category of HIV as a spiritual journey was finalized through consensus and included the properties of (1) being rejected by as well as rejection of formalized religion, (2) differentiating spirituality from religion, (3) having a connection, (4) feeling grateful, and (5) mindfulness and learning new skills. Interventions fostering resilience and strengths in HIV-positive older adults using spirituality should be considered, including the promotion of person-centered spirituality and interventions that include mindfulness and skill building.

Experiences of stigma in older adults living with HIV/AIDS: a mixed-methods analysis.

Older adults are increasingly becoming impacted by HIV disease, both as newly infected individuals and as long-term survivors of HIV/AIDS living into older age. HIV-related stigma impacts the quality of life of all persons with HIV/AIDS. However, little is know about HIV-related stigma in older adults because many studies do not include older subjects or ignore age as a variable. This mixed methods study examined the experiences of HIV-related stigma in a sample of 25 older adults with HIV/AIDS from the Pacific Northwest. Quantitative methods measured HIV-stigma and depression, while in-depth qualitative interviews captured the lived experiences of these individuals. Stigma was positively and significantly correlated with depression (r = 0.627, p = 0.001) and stigma was found to be significantly higher in African American, as compared to white informants (chi (2) = 4.16, p = 0.041). Qualitative interviews yielded 11 themes that correspond to the four categories constructed in the stigma instrument. Rejection, disclosure concerns, stereotyping, protective silence and feeling "other" were all common experiences of these individuals. HIV stigma should be routinely assessed when working with older, HIV infected clients and interventions should be tailored to the individual experiences of stigma.