Aging with HIV is a complex mix of long-term treatment effects, early onset of aging, comorbidities and other confounding factors, including mental health and psychosocial factors, which affect quality of life. Older people with HIV (OPWH) have experienced tremendous loss, stigma and discrimination, including while navigating the healthcare system.
The risk for the renewed experience of stigma and discrimination as OPWH enter geriatric services is a real concern. The emergence of multiple co-morbidities may necessitate moving away from trusted HIV clinics and providers to new care sites and providers focused primarily on co-morbidities associated with aging such as cardiology, neurology, physical therapy and rehabilitation.
In most communities and institutions, this care is delivered through an uncoordinated maze of multiple specialists who may be unfamiliar with HIV or the unique challenges experienced by OPWH. Without proper supports, the risk for isolation, depression and stigma may increase. Evidence has demonstrated that nurses and nurse practitioners are ideally situated to deliver and manage this complex care within a nursing framework based on a holistic, strength-based and patient-centered approach that includes evidence-based quality care, advocacy, and effective care coordination.
Nurses had a lengthy history of coordinating patient care, long before the terms care coordination, case management and navigation were known. As people living with HIV (PLWH) age and their care becomes more complex, their challenges multilayered, and their resources less robust, the need for compassionate and effective nurse-managed care is critical. Yet it may not be HIV nurses providing this care.
Therefore, the Association of Nurses in AIDS Care (ANAC) has developed a series of online/on-demand learning modules that include HIV fundamentals, novice and advanced clinical and psychosocial didactic updates, care coordination, downloadable resources and first-person narratives from people living and aging with HIV. The programming is intended for nurses, nurse practitioners, nursing assistants, allied health professionals and others who work in settings where people aging with HIV are soon to be entering or are already receiving home care, skilled or long-term care or subspecialties providing treatment for co-morbidities common in aging.
‘Fostering an environment that is welcoming and safe is a key element in retaining individuals in care.’
The development and production of these learning modules was guided by an Expert Advisory Committee, an interprofessional committee representing HIV and gerontology nursing, social work, pharmacy and psychology as well as individuals living and aging with HIV. Meaningful involvement of OPWH who are long-term survivors and have experience and strategies regarding aging with HIV are a central part of this project. Their experiences and perspectives informed each part of the work and in each of the modules, the impact of living and aging with HIV is highlighted through a patient’s personal perspective.
“Many older people with HIV have lived through the early years of the epidemic and recall the fear and discrimination they experienced and may come to healthcare with concerns about disclosure and anticipated stigma that they have experienced, even from healthcare providers.”
—Alanna Bergman, PhD, CRNP, HIV Clinician
The online modules include:
HIV Foundations: This learning activity provides an overview of the basics of HIV treatment and prevention. Information on HIV epidemiology, transmission, HIV pre-exposure prophylaxis, and principles of HIV treatment adherence. Information on the impact of stigma and ways to reduce it are covered, including discussion of the Undetectable Equals Untransmittable (U=U) campaign and use of person-centered language.
Creating an Inclusive Space: One of the key strategies for providing successful HIV treatment is engaging and retaining individuals in care. This module highlights considerations for primary care providers, long-term care facilities, and acute-care hospitals for creating an inclusive space. Creating a culture that recognizes the diversity of persons living and aging with HIV and fostering an environment that is welcoming and safe is a key element in retaining individuals in care, along with making sure that services are accessible for older adults with mobility or other sensory impairments.
One outcome of the project is to increase involvement of nurses in advocacy for health policies supporting optimal quality of life for OPWH.
Chronic Co-occurring Conditions: Age-related co-occurring conditions may be exacerbated by HIV and its treatments. This learning activity describes how HIV and aging interact to increase risk for several co-occurring conditions including renal and liver disease, cancer, metabolic conditions, as well as frailty. Best practices are reviewed for identifying and managing common co-occurring conditions in OPWH and care coordination strategies that can improve health outcomes for elders who are diagnosed with one or more of these co-occurring conditions.
Brain Health, Cognition and Mental Health: Conditions affecting mood and cognition can impact quality of life for PLWH as they age. An overview is given of factors such as physical activity, mental exercises and cognitive training, social interaction and nutrition that impact brain health and cognition, especially in the context of the aging brain. Information on the topic of HIV-Associated Neurocognitive Disorder (HAND) is examined, with details of how HAND is diagnosed and the pitfalls of making such a diagnosis. Strategies are detailed for assessing cognition in the clinic environment and managing cognitive problems.
HIV and Aging and Cardiovascular Disease: The increased incidence of cardiovascular disease in OPWH may be linked to chronic inflammation exacerbated by HIV and its treatments. This module describes how HIV and aging intersect to increase risk for cardiovascular disease, discusses strategies to prevent cardiovascular disease through general patient assessment, and cardiovascular management tools for adults living with HIV.
Links to up-to-date key resources are provided and organized by category: Aging, HIV, trauma-informed care, person-centered language, loss, stigma and social isolation, and nurse-led care coordination. The desired outcomes of this project are:
- A better educated and informed nursing workforce to meet the complex healthcare and care coordination needs of PLWH as they age.
- Transformation of geriatric nursing care to include care coordination for OPWH, as seen in model HIV programs under the federal Ryan White programs.
- Empowering nurses that work in settings such as long-term care, skilled nursing or home care to create patient-centered, supportive, stigma-free (HIV and LGBTQ) environments.
- Increasing the understanding and involvement of nurses in advocacy for health policies that support optimal quality of life for OPWH.
ANAC is the leading nursing organization responding to HIV/AIDS and related co-morbidities and co-occurring conditions. Founded in 1987, our mission is to promote the education and development of nurses and others involved in the delivery of healthcare to persons living with or affected by HIV and to promote the health and welfare of people living with HIV/AIDS around the world.
We publish a highly regarded academic journal, The Journal of the Association of Nurses in AIDS Care (JANAC), which in the past five years has published more than 75 peer-reviewed articles on the nursing science of HIV and aging. Our organizational partners in this work include: The Geriatric Advanced Practice Nurse Association (GAPNA), the Gerontology Society of America (GSA), the Hartford Institute for Geriatric Nursing at NYU Rory Meyers College of Nursing, the National Hartford Center of Gerontological Nursing Excellence and Nurses Improving Care for Healthsystem Elders (NICHE).
We are grateful for the expertise and wisdom provided by the ANAC HIV & Aging Expert Advisory Committee and the respected interprofessional faculty that developed the learning modules. We acknowledge the expert and collaborative technical support provided by our production partner, BroadcastMed. This work was supported through a grant from Gilead Sciences. For more information or to view the modules, visit ANAC HIV and Aging.
Carole Treston, RN, MPH, ACRN, FAAN, is executive director of the Association of Nurses in AIDS Care, in Washington, DC. Jeffrey Kwong, DNP, MPH, AGPCNP-BC, FAANP, FAAN, is a professor in the School of Nursing at Rutgers University, in Newark, NJ. Sheila Tumilty, BSN, RN, ACRN, is director of Education Programs at the Association of Nurses in AIDS Care, in Washington, DC. David E. Vance, PhD, MGS, is a professor in the School of Nursing at the University of Alabama at Birmingham, in Alabama.
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