1. Jang, Hannah J. PhD, MSN, CNL, PHN, RN
  2. Allerton, Michael MS
  3. Scruth, Elizabeth Ann PhD, MPH, RN, CCNS, CCRN, FCCM

Article Content

Persons living with human immunodeficiency virus (HIV) are rapidly approaching advanced age and receiving combined antiretroviral therapy (cART) for longer periods. The need to assess quality of life and to appropriately care for persons living with HIV is becoming a global priority. Human immunodeficiency virus infection is often associated with cognitive impairment, psychiatric diagnoses, and cardiac and renal-related morbidities.1,2 These associated conditions negatively affect a person's ability to perform activities of daily living and add to the list of comorbidities that require follow-up with a healthcare provider. Approximately 42% of the US population is 60 years and older, and more than 50% of people living with HIV are 50 years and older according to the Centers for Disease Control and Prevention.3 As people are living longer with HIV, healthcare providers are responsible for improving patient-centered care and empowering patients to make informed decisions (autonomy), maximizing function and quality of life by providing high-quality care (beneficence), encouraging interdisciplinary communication, and supporting access to health services through equitable distribution of scarce healthcare resources (distributive justice), including addressing delays in medical care and treatment (nonmaleficence).



One of the Institute of Medicine's 6 domains of healthcare quality focuses on patient-centered care.4 Nurses have long been referred to as the "patient advocate" and have worked with the patient's needs and concerns as their primary focus. Patient-centered care is providing care that is "respectful of and responsive to individual patient preferences, needs, and values."4 For persons living with HIV, patient-reported symptoms are more associated with physical health and quality-of-life measures than only provider-reported symptoms, which emphasizes the need to respect patients' autonomy and perspectives when devising the plan of care.5


Improving the patient-provider relationship assists in providing patient autonomy. Nurses and clinical nurse specialists interact frequently with the patient and have a large impact on how a patient perceives his/her care.6 According to Gallup surveys, nurses have ranked number 1 in Honesty and Ethics every year since 1999, with the exception of firefighters in 2011, shortly after the September 11 terrorist attacks. Nurses value empathy and work closely with the patient, which encourages a stronger patient-provider communication and relationship. When patients feel safe and can trust their providers, patients are more likely to report symptoms to their providers, which lead to improvements in quality of life and patient outcomes (beneficence).5



The concept of beneficence, or the responsibility to act in the best interest of patients, is aligned with the principles of improving or maintaining high quality of life for persons living with HIV. Quality of life needs an integrated assessment that includes not only clinical outcomes but also subjective and social factors, such as physical health reports, mental health reports, and relationship status.7 When caring for patients living with HIV, healthcare providers have access to clinical measures to assess care delivery, such as medication adherence, CD4 cell counts, and pain management, but do not always have access to quality-of-life measures or assessments.7 Quality of life is a concept that is patient centered and has implications for affecting patients' autonomy of making decisions in their care.


One's mental health, physical health, and social relationships are important domains to consider when ensuring beneficence and nonmaleficence for persons living with HIV. Quality-of-life measures are commonly assessed within the domains of mental health and physical health, and the quality of social relationships is sometimes assessed. Physical health measures include assessments of pain and the ability to perform activities of daily living, and mental health measures include assessments of overall well-being, cognitive function, and depression.7 Social relationships have not been assessed in quality-of-life measures but have been found to strongly affect quality of life. Positive social relationships are strongly correlated to improved mental health and lower reports of depression and anxiety, all domains included in quality-of-life measures.7 Patients living with HIV adhere to their medications and are retained in care when they report strong social relationships. With this in mind, healthcare providers should involve partners or friends when formulating a plan of care for their patients. Comprehensive assessments that include quality-of-life measures and assessing social relationships provide holistic care and encourage health decisions that improve overall well-being for persons living with HIV.


Assessing quality of life in the clinical setting comes with many challenges. Healthcare providers have easier access to clinical indicators of health but not to subjective measures of quality of life. In addition, providers report up to 3 times fewer symptoms than persons living with HIV self-report.5 Self-reported symptoms are strongly associated with physical health and quality-of-life scales for persons living with HIV.5 There is a need for a standardized symptoms checklist for routine clinical care and for high-quality care to meet the physiological needs of persons living with HIV.



Another challenge that persons living with HIV face is the lack of social relationships or support, which can affect their quality of life. Low levels of social support are associated with more isolation, depression, and negative affect, whereas high levels of social support are associated with positive affect for persons living with HIV.8 The effects of social support on positive and negative moods are greater in older men who have sex with men than for younger men who have sex with men.9 For the older persons with HIV, they have lived longer with the disease and have seen many of their friends not survive from complications of HIV because in part of the higher rates of mortality and morbidity from HIV in the 1980s.9 Persons living with HIV therefore may have limited social and/or support relationships because of age, mortality, and stigma. If social support and family are positively involved in patient care, healthcare professionals are encouraged to practice beneficence and involve family and friends as the patient requests.8


Psychological well-being is found among those with positive social support and interactions, and when there is negative social support and interactions or lack thereof, patients report more depression and use of behavioral services.9 Perceived social support has a significant direct effect on both mental health and physical health. The concept of quality of life and the inclusion of assessing social support and relationships are vital to comprehensively understand the definition of health from a patient's perspective. When a patient's quality of care is compromised, he/she is more likely to engage in risky health behaviors, miss healthcare appointments, and not adhere to medications.7 Poor quality of life in people living with HIV is associated with not only an increase in health system costs and excess use but also high morbidity/mortality rates.9


Furthermore, when HIV is diagnosed in the early stage, health can be maintained, and healthcare use can be minimized, improving the quality of life for a person living with HIV.7 Prescribing cART early in the diagnosis of HIV prevents the virus from crossing the blood-brain barrier. Once HIV crosses the blood-brain barrier, HIV infects the glial cells, which support neuronal functioning, and affects cognitive function and mental health.2 Early initiation of cART for persons living with HIV suggests a protective effect on the occurrence of non-acquired immunodeficiency syndrome (AIDS) events, including psychiatric, malignant, cardiac, and renal-related morbidities.1



Persons living with HIV experience improved outcomes when they have a strong patient-provider relationship. Patients with HIV do not always understand the risks and benefits of HIV treatment, options of different treatment plans, and appropriate follow-up and screening procedures.10 When patients face depression or mental illness, challenges with appointment scheduling, and difficult relationships with clinical staff and providers, persons living with HIV are less likely to retain their medical care and adhere to medications.7


One way to strengthen the patient-provider relationship is to communicate with the patient living with HIV and assess self-reports of mental health, physical health, and other symptoms. Self-report and clinical reports are important factors for patient-centered care and patient-reported outcomes to meet the needs of persons living with HIV. Healthcare providers find self-report of functional impairment and HIV-related symptoms to help them improve and provide more comprehensive care for persons living with HIV.5



Another one of the Institute of Medicine's 6 domains of healthcare quality includes equitable care, defined as providing quality care not exclusive of gender, ethnicity, socioeconomic status, and disease status.4 Denial of access leads to unnecessary complications, including faster progression to AIDS and poor life expectancy.9 Persons living with HIV have faced barriers in accessing quality care and services (distributive justice). Barriers to access include stigma, late diagnosis, and comorbidities and delay in care, which lead to more complications of HIV and shorter life expectancy.


Nonmaleficence: Stigma in Care

All persons living with HIV do not have equal perceived opportunities and access to HIV treatment and care. Stigma provides a strong barrier for persons living with HIV to access and use care. When a person is given a diagnosis of HIV, the person's social worth is compromised because of the stigmatizing nature of HIV, and the person himself/herself is stigmatized by default of the diagnosis.11 Overt expressions of stigma to HIV have decreased since the 1990s, but persons living with HIV still face stigma and discomfort related to their HIV status. If faced with stigmatizing situations, these population groups will not seek medical care and attention, including screening for HIV.


Access to and costs of healthcare services are unique challenges for population groups at a high risk for HIV, including men who have sex with men and those who use substances because of stigma. Men who have sex with men face stigma, which prevent them from accessing care and also prevent them from seeking any healthcare services, including testing for HIV.11 Furthermore, persons living with HIV who use substances face access and retention to care issues, which include forgetting to attend appointments and maintain medication adherence.9 Men who have sex with men, those with injection drug use, and those with risky sexual behaviors are vulnerable population groups recommended for HIV screening according to the US Preventive Services Task Force.12 Yet, many are not attending healthcare appointments and screening because of the stigma they encounter and their health is compromised. As healthcare providers, not providing care due to stigma is a concern related to maleficence.


Nonmaleficence and Beneficence: Comorbidities and Delay in Care

Older adults with HIV are at an increased risk of developing AIDS and are often mostly misdiagnosed because symptoms are dismissed as normal signs of aging. The general public assumes that older adults do not practice risky behaviors and does not encourage HIV testing in the older adult population.9 Older adults continue to have sex and use substances, which put them at an increased risk for HIV and late testing and diagnosis. There is still a strong stigma attached to HIV diagnosis in older adults.9 Those diagnosed with HIV at an older age have more advanced forms of the disease and have higher mortality risk than those who are younger. Furthermore, among people living with HIV, men who have sex with men was the most common HIV transmission risk factor for all cancers, yet retention to care after the diagnosis of HIV is not always high for men who have sex with men due to stigma. If the nation's goal is to prevent HIV, there is a large portion of people not being screened and being given a diagnosis of HIV when viral loads are high.


Nonmaleficence: Late Diagnosis in Screening

In addition to men who have sex with men, those with intravenous drug use, and those with risky sexual behaviors, HIV screening is recommended for adolescents and adults aged 15 to 65 years, younger adolescents and older adults at an increased risk for infection, and pregnant women.12 Although these categories are not mutually exclusive, people are still being given a diagnosis of HIV in later stages, and there still remain high rates of delayed diagnosis of HIV in older adults and in men who have sex with men.9 Late testing leads to unnecessary morbidity and mortality for persons living with HIV due to the late initiation of cART and faster diagnosis to AIDS. When patients who are at risk are not being tested, this also is a concern related to maleficence. Healthcare professionals should always encourage testing for HIV with their patients who are at risk.


Late diagnosis of HIV requires more resources for conditions, including the rapid progression to AIDS and commodities of cancer and cognitive impairment.1,2 People living with HIV are at a great risk for cancers with a known infectious cause, although cancer being a large comorbidity in people living with HIV has decreased after the cART era.1 Human immunodeficiency virus causes a loss of effective immune surveillance, which can be a contributing factor to cancer and other complications.9 Late diagnosis causes undue harm (compromises nonmaleficence), which leads to unnecessary costs and use of more healthcare services (distributive justice). With the changing demographics and characteristics of people living with HIV, it is important for HIV specialists to assess the current population's needs.



Clinical nurse specialists have the ability to facilitate a trusting relationship with staff and patients, and the role of specialists in promoting resilience and HIV care is evolving.10 The United States is facing challenges in HIV care delivery because of an inadequate number of HIV specialists. This is due in part to retirement rates and a lack of desire to specializing in HIV care due to high debt from the education expense and low financial incentives.10 Nonetheless, as HIV treatment and management advance, expert evidence to promote high-quality HIV care delivery is imperative. A positive patient care relationship accompanied with patient-centered care is associated with higher patient satisfaction scores, decreased use of healthcare services, and improved HIV care delivery, which can improve a patient's quality of life and lower annual hospital charges for the patient.6


With the decreased supply of nurses and physicians trained in treating HIV patients, there is an opportunity for clinical nurse specialists to assist in filling the gap and to educate and support those who continue to work in this field.10 The US Preventive Services Task Force recommends providers to understand the differences in health and service needs and to screen those at a high risk for HIV, including men who have sex with men, active injection drug users, pregnant women, and older adults at an increased risk for infection.12 Furthermore, the unique needs of the aging, growing population with HIV are being ignored. It is an imperative role of the nurse and clinical nurse specialist to advance the quality and care of persons living with HIV (beneficence).



Healthcare providers share the responsibility of providing high-quality, equitable care for persons living with HIV. It is vital for clinical nurse specialists to continue advocating for vulnerable populations, including older adults, men who have sex with men, and those with injection drug use. It is the healthcare providers' responsibility to improve patient-centered care and respect patient autonomy by empowering patients to make informed decisions. In addition, it is important for the healthcare provider to support access to health services through equitable distribution of healthcare resources (distributive justice), including the need to address delays in medical care, screening, and treatment. This upholds the principles of nonmaleficence and beneficence when caring for persons living with HIV. When patients are at the center of care, patients' quality of life improves, and patients report satisfaction to access and use of healthcare services.


The precursor to quality care is found in the basic principles of maintaining the ethical care of persons living with HIV. Patient perspectives of care and quality of care have a powerful role to which patients experience quality in nursing care. This supports patient autonomy. Knowledgeable and communicable healthcare professionals who provide timely support are significantly related to patient-perceived nurse quality of care.6 Patients' perceived caring behaviors of staff and the patient-centered environment of a hospital unit are significantly associated with nursing care quality.6 It is vital for nurses to collaborate with the interdisciplinary team because, as the most trusted healthcare professionals, nurses can empower patients to make better choices in their HIV care (support patient autonomy). Clinical nurse specialists can provide holistic, high-quality care by empowering patients living with HIV to make informed decisions (autonomy), maximize function and quality of life (beneficence and nonmaleficence), and support access to health services through equitable distribution of resources (distributive justice).




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