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H+ARP-PS Research Results

Perceived risks and benefits of enrolling people with HIV at the end of life in cure research in Southern California, United States

Abstract
 

Although current antiretroviral therapy allows most people with HIV (PWH) to experience normal longevity with a good quality of life, an HIV cure remains elusive due to HIV reservoir formation within deep tissues. An HIV cure remains highly desirable to the community of PWH. This study reports on the perceived risks and benefits of participation in the Last Gift study, a study aimed at characterizing HIV reservoirs via post-mortem autopsy, among PWH at the end of life (EOL) and their next-of-kin (NOK)/loved ones.

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HIV-related Stigma, Personal Mastery, Mindfulness, and Social Support in Older Adults Living with HIV in
Coachella Valley, CA

Abstract
 

Half of individuals currently living with HIV in the US are older adults (age 50 years and older). Despite increases in lifespan, this population continues to experience HIV-related stigma, which is linked to poor clinical and social outcomes. Reduction efforts have expanded to focus on psychosocial factors that may offer protection against stigma. In this study, we estimated the prevalence of HIV-related stigma and examined its association with demographic, HIV-disease, and psychosocial factors, including personal mastery, mindfulness and social support in older adults living with HIV (OALWH). Coachella Valley, California. The study was approved by the Health Sciences Campus Institutional Review Board of the University of Southern California. OALWH from local AIDS service organizations completed a one-time in-person 30-min survey.

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Evaluating the Impact of Incentives on Clinical Trial Participation: Protocol for a Mixed Methods,
Community-Engaged Study

The specific aims of our research project are to (1) characterize key stakeholders’ views on and assessments of incentives in biomedical HIV research; (2) reach consensus among stakeholders on the factors that are considered when choosing research incentives, including consensus on the relative importance of such factors; and (3) pilot-test the use of the guidance developed via aims 1 and 2 by presenting stakeholders with vignettes of hypothetical research studies for which they will choose corresponding incentive types.

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Perceptions of the Importance of Advance Care Planning During the COVID-19 Pandemic Among Older Adults
Living With HIV

Background:

 

The importance of advance care planning (ACP) discussions have been heightened during the COVID-19 pandemic. We assessed advance directive completion, healthcare proxy (HCP), and attitudes toward ACP among older adults ages 50+ living with HIV during the COVID-19 pandemic. Read the full article

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No Direct Communication: How Being Deaf Overshadows Challenges of Aging with HIV in Palm Springs, California
(IAS 2020)

Globally, Deafness affects 432 million adults and is the most common sensory deficit in the world 

  •  Older people living with HIV (PLWH) experience more comorbidities than those without HIV.

  •  Little research is available about the experiences of people aging with HIV, especially Deaf people.

  • We aimed to ascertain challenges of and resiliencies for living as an older Deaf person with HIV.

         Click to view the video

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Leaning on Community‐Based Participatory Research to Respond During COVID‐19

Prior to COVID-19, the HIV epidemic was arguably the worst public health crisis affecting the United States since the 1918 flu pandemic. While previously a death sentence, combination therapy transformed HIV infection into a largely manageable, chronic condition, leading to the majority of people with HIV being over age 50 [1]. We have little understanding of the physical and psychosocial needs of this first cohort to age with HIV. Challenges associated with aging with HIV are compounded by discrimination due to race, gender, and sexual orientation. Many people aging with HIV have also endured significant trauma due to AIDS, including personal losses of friends and loved ones, contributing to high rates of depression [2]. Read more...

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"We are becoming older women and then we have two stigmas”: Voicing Women’s Bio Psychosocial Health Issues as
They Age with HIV

The development of effective combination antiretroviral therapy (cART) resulted in a dramatic increase in life-expectancy among people diagnosed with HIV. Indeed, nearly 50% of people living with HIV (PLWH) are 50 years of age or older (Centers for Disease Control and Prevention, 2019; Guaraldi & Palella, 2017). By 2030, this proportion is expected to rise to 70% (Smit et al., 2015). While PLWH now experience fewer life-threatening acute illnesses than before the development of cART, research shows that older PLWH (i.e., aged 50 and older) face a unique combination of challenges associated with the interaction between the aging process and HIV. Read More

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A Multidimensional Assessment of Successful Aging Among Older People Living with HIV in Palm Springs, California

We assessed successful aging among older people living with HIV (PLWH) compared with older people without HIV. One hundred ten older men and women in Palm Springs, California completed a self-administered 28-question survey, which collected data on physiological and psychosocial factors related to successfully aging with HIV, including demographics, HIV status, sexual activity, health and well-being, experiences of stigma or discrimination, feelings of isolation, receipt of disability benefits, work and volunteer participation, and presence of comorbid infectious diseases, noninfectious diseases, and geriatric syndromes.... Read more..

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Selecting community-based research priorities in aging with HIV  (IAS 2019)

Palm Springs, California, is a retirement and resort community with the highest prevalence of older people living with HIV (PLWH) in the US.

 

We engaged the local stakeholder community (PLWH, caregivers, community-based organizations, providers/academics) around HIV and aging for future research.

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Identifying resiliencies for aging with HIV: Discussions with older people living with HIV in Palm Springs.

Palm Springs, California, is a retirement community with the highest prevalence of older people living with HIV (PLWHIV) in the nation.

 

We obtained funding to engage the local stakeholder community (patients, caregivers, community-based organizations, providers, academics) around HIV and aging for future comparative effectiveness research.

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Identifying resiliencies for aging with HIV: Discussions with older people living with HIV in Palm Springs.

Palm Springs, California, is a retirement community with the highest prevalence of older people living with HIV (PLWHIV) in the nation.

 

We obtained funding to engage the local stakeholder community (patients, caregivers, community-based organizations, providers, academics) around HIV and aging for future comparative effectiveness research.

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Community-Driven Health Priorities for Healthy Aging With HIV

Palm Springs, CA, is a retirement community with the highest prevalence of gay men living with HIV older than 50 years in the United States. Through a community–academic partnership, we explored the major health issues, resiliencies, and priority research topics related to HIV and aging. We conducted five community facilitated focus groups with different stakeholders, including two focus groups with older adults living with HIV, one with their caregivers, one with HIV-focused community-based organizations, and a joint focus group with researchers and HIV care providers. Using the rigorous and accelerated data reduction technique, five major themes emerged, which included long-term side effects of medication, social determinants of health, mental health, resiliencies, and involving community in research. These data are important for developing effective interventions, conducting useful and impactful research, and providing health care providers with the tools and knowledge to provide optimal care. View the PDF. 

 

Related Document: Focus group quotes from Community-Driven Health Priorities for Healthy Aging With HIV (JANAC Jan-Feb 2019)

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Patient Centered Outcomes Research Institute Project: The Coachella Valley Community Research Initiative for
Healthy Aging with HIV

Although more than half of all people living with human immunodeficiency virus (HIV) in the United States are over 50 years old, there is a dearth of data for this population. In 2013, a small group of interested providers, patients, and caregivers residing in the Coachella Valley came together to form the Coachella Valley Community Research Initiative (CVCRI), intended to advance research on HIV and aging. Despite their good intentions, the group has faced obstacles, including problems with connecting stakeholders and building research capacity. Read more.

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