PSYCHOSOCIAL AND MENTAL HEALTH ISSUES

The stress associated with living with a serious illness or condition such as HIV can affect an individual’s mental health. People with HIV have a greater chance of developing mood, anxiety, and cognitive disorders. It has been shown that psychological issues are among the strongest links to the failure to adhere to HIV treatment. Therefore, psychosocial concerns should be assessed on a regular basis to identify stressors that may impact patient adherence to medical visits and medications (NIMH, 2022; MHA, 2023).

While identifying mental health issues among people living with HIV is critical, far too often these issues go undiagnosed and untreated. People may not want to reveal their psychological state to healthcare workers for fear of stigma and discrimination. Healthcare workers may not have the skills or training to detect psychological symptoms and may fail to take the necessary action for further assessment, management, and referral if symptoms are present (MHA, 2023).

Children and adolescents living with HIV may face an increased burden of mental and behavioral health disorders compared to adults. Challenges for this age group include accessing mental health services, mental health challenges during transition from pediatric to adult care services and responsibilities, and the impact of mental health intervention (AIDS2020, 2020).

Factors affecting mental health among this population can include:

• Pre-existing psychiatric conditions
• Personality vulnerabilities
• Affective disorders
• Addictions
• Responses to the social isolation and disenfranchisement associated with HIV diagnosis
• ART medication side effects
• Effects of HIV-related opportunistic infections

Situations that can contribute to mental health problems in people with HIV include:

• Difficulty telling others about an HIV diagnosis
• Stigma and discrimination associated with HIV
• Loss of social support and isolation
• Managing HIV medicines and medical treatment
• Dealing with loss, including the loss of relationships
• Difficulty in obtaining mental health services
  (HIV.gov, 2021c)

Adjusting to the Diagnosis

Often, the first task for an HIV clinical care team is helping patients and family members cope with the psychosocial impact of the diagnosis. Being diagnosed with any chronic health condition can be extremely stressful, and it is normal to have an emotional reaction when given the diagnosis of HIV. However, when stress becomes prolonged and is not treated, more serious mental health conditions may develop.

Anger is a common and natural reaction to receiving the diagnosis of HIV. Many people are upset about how they contracted the virus or angry that they didn’t know they had the virus. These feelings and thoughts may be related to feelings of helplessness and being overwhelmed with the new diagnosis.

Other stressors that may arise when someone receives a diagnosis of HIV include having trouble getting the services needed, managing HIV medications, disclosing the HIV-positive diagnosis to others, losing contact with family or friends who fail to understand the realities of the disease, having to make lifestyle changes, and dealing with the stigma that has long been associated with HIV/AIDS (MHA, 2023).

With the advent of highly active antiretroviral therapy, HIV infection is now manageable as a chronic disease in patients who have access to medication and who achieve durable virologic suppression, but mortality remains approximately five times higher in persons with HIV than the general population, and receiving a diagnosis of HIV means accepting the potential for a shorter lifespan (Rathbun, 2023).

Fear of Disclosing

At some point people living with HIV must decide whether and to whom to disclose their HIV status, which can be a difficult conversation. In Washington State, a partner must be notified either by the individual or by the public health department. Most people disclose their status to their spouse or partner within a short time following diagnosis, and this can strain the relationship. The negative effects may be mitigated by professional couples counseling (UW Medicine, 2023).

Partner notification can be provided through the local health department or some medical offices and clinics. Sometimes referred to as Partner Services, these providers contact and inform current and former partners that they may have been exposed to HIV and that the health department will provide them with testing, counseling, and referrals for other services that may be needed (CDC, 2021g).

Grief Issues

There are people who have experienced the loss of many friends from their social network as a result of AIDS, particularly in the earlier days of the epidemic, and grieving may become an ongoing experience. Today, with antiretroviral drugs, there is now a low rate of progression from HIV to AIDS, and people with HIV are no longer primarily dying of AIDS-defining illness.

Unacknowledged grief of same sex partners, lovers, and friends may be an issue if an individual’s relationship is not recognized as legitimate beyond a small circle of friends. Today in the United States, community attitudes have changed, and with society’s wider acceptance around sexual orientation, more education about HIV, and the legalization of same-sex marriage, this is gradually lessening (GriefLink, 2023).

Stigma and Discrimination

Although there have been significant improvements, there continues to be a risk that people who are infected with HIV will be more likely to feel stigmatized and isolated. Negative attitudes and beliefs about people with HIV may arise from labeling an individual as part of a group that is believed to be socially unacceptable. This may include beliefs that only certain groups of people can become infected by HIV and even moral judgments that people “deserve” to get HIV because of their choices.

Fearing that their diagnosis will result in the judgmental behaviors of others, rejection, or abandonment, many may hide the true cause of their illness, informing only a few of their family and friends, and sometimes informing no one. This isolation and lack of support increases their emotional and spiritual pain. Social stigmas associated with HIV have been identified as a possible contributor to the increased suicide rate in people infected with HIV.

HIV-related stigma is often connected with other sources of stigma, including those associated with mental health and/or substance use disorders. For HIV-infected persons with comorbid mental health disorders, there is a double burden of stigma. Internalized stigma (self-stigma) is as damaging to the mental well-being of people with HIV as stigma from others. Negative self-judgment results in shame, feelings of worthlessness, and blame, all of which affect the person’s ability to live positively and limit qualify of life (GriefLink, 2023; AIDS2020, 2020; CDC, 2021g).

Neuropsychiatric Effects of HIV/AIDS

The term neuropsychiatric encompasses a broad range of medical conditions that involve both neurology and psychiatry. There is a high prevalence of neuropsychiatric disorders among those infected with HIV, and studies have shown that patients with neuropsychiatric conditions have poorer outcomes and benefit less from antiretroviral therapy. Psychiatric treatment, however, does improve outcomes.

HIV itself increases the risk of neuropsychiatric conditions because it causes major inflammation within the body. The entire brain, including the lining, becomes inflamed as a result of the body’s immune response, causing irritation and swelling of brain tissue and/or blood vessels, resulting in nontraumatic brain damage over the long term. Having brain damage such as this is a known risk factor for the development of a neuropsychiatric condition.

Because HIV affects the immune system, the person also has an increased risk for other infections that can affect the brain and nervous system and lead to changes in behavior and functioning.

Starting antiretroviral therapy can also affect a person’s mental health in different ways. Some antiretroviral medications have been known to cause symptoms of depression, anxiety, and sleep disturbance and may make some mental health conditions worse (MHA, 2023; Pieper & Teisman, 2023).

The availability of effective psychiatric care for HIV-infected patients is crucial for their treatment and also for controlling the spread of HIV. Neuropsychiatric care in HIV disease ranges from management of clinical presentations of other psychiatric disorders, supportive psychotherapy, and treatment of specific conditions such as HIV-associated dementia, minor cognitive motor disorder, and AIDS mania. The availability of effective psychiatric care for HIV-infected patients is crucial for their treatment and also for controlling the spread of HIV.

DEPRESSION

Clinical depression is the most commonly known and reported psychiatric disorder among those with HIV, affecting 22% of the population. HIV increases the risk of developing depression through direct damage to subcortical brain areas, chronic stress, worsening social isolation, and intense demoralization. Patients with symptomatic HIV disease are significantly more likely to experience a major depressive episode than those with asymptomatic disease.

Critical “crisis points” are common entry points for the development of depression in HIV-infected people and can include:

• Initial HIV diagnosis
• Disclosing HIV status
• Introduction of new medications
• Recognition of new symptoms and disease progression awareness
• Hospitalization
• Physical illness
• Death of a significant other
• AIDS diagnosis
• Returning to work, going back to school
• Major life events such as relocation, change of jobs, loss of a job, pregnancy or giving birth, end of a relationship
• Making end-of-life and permanent planning decisions
  (Lieber, 2021)

A patient with depression may present with the following symptoms:

• Depressed mood
• Loss of pleasure from activities
• Anorexia
• Morning insomnia or hypersomnia
• Difficulty concentrating
• Thoughts of suicide
  (Lieber, 2021)

Depression is common among women with HIV and may be a contributing factor to negative outcomes in this population. A dose-related association has been found between cumulative days with depression and mortality in women; each additional 365 days of depressive symptoms were found to be associated with a 72% increase in mortality risk. Depression is an important factor in adhering to ART, with a high probability that patients with depression are more likely to not stay actively engaged in care (Aberg & Cespedes, 2023).

Evidence has shown that depression is also highly prevalent among adolescents living with HIV when compared to those without. Factors may include:

• Severity of HIV infection
• Stages of the disease
• Presence of opportunistic infection
• Presence of other mental health problems
• Presence of addition psychosocial stress or trauma
  (Ayano et al., 2021)

ANXIETY

It is estimated that up to 38% of people with HIV will develop an anxiety disorder. Symptoms are twice as common in women as in men and can be prominent when patients are diagnosed with HIV and in response to progression of the illness.

Common symptoms of anxiety include:

• Excessive worry
• Feeling “on edge”
• Difficulty concentrating
• Fatigue
• Irritability
• Muscle and/or jaw tension
• Changes in appetite
• Changes in libido
• Increased use of drugs or alcohol
• Tachycardia
• Sweating and flushing
• Panic attacks
  (THT, 2023)

POSTTRAUMATIC STRESS DISORDER (PTSD)

There is a complex relationship between PTSD and HIV infection. PTSD exacerbates HIV risk behaviors and worsens health outcomes, while HIV risk behaviors, such as prostitution and drug abuse, can result in increased exposure to trauma associated with the increased likelihood of developing PTSD. PTSD from early trauma predisposes individuals to engage in sex or drug behaviors, which then increases risk of HIV infection.

PTSD often coexists with depression and cocaine/opioid abuse, both of which are risk factors for HIV. Substance use may be either a strategy to obtain relief in response to a traumatic experience or a lifestyle that increases exposure to traumatic events such as robbery or assault (Pieper & Teisman, 2023).

AIDS MANIA

AIDS mania is associated with late-stage HIV infection and is characterized by typical mania and additional cognitive impairment in the setting of a lack of previous personal or family history of bipolar illness. The prevalence of AIDS mania has dropped significantly since the onset of potent antiretroviral therapy.

AIDS mania involves less euphoria and more irritability than mania associated with bipolar illness and is also much more chronic. In contrast to bipolar mania, AIDS mania usually does not remit if left untreated (Pieper & Teisman, 2023).

HIV-ASSOCIATED NEUROCOGNITIVE DISORDERS (HAND)

Changes in attention, memory, concentration, and motor skills are common among HIV-infected individuals. When such changes are clearly attributable to HIV infection, they are classified as HIV-associated neurocognitive disorders (HAND). Depending on the severity and impact on daily functioning, cognitive deficits can be further classified into three conditions:

• Asymptomatic neurocognitive impairment (ANI)
• HIV-associated mild neurocognitive disorder (MND)
• HIV-associated dementia (HAD)

The widespread use of combination antiretroviral therapy has been associated with a decrease in the prevalence of more severe neurocognitive deficit, such as HAD, but milder cognitive deficits without alternative explanation remain common, even among patients with viral suppression.

HAND is characterized by the subacute onset of cognitive deficits, central motor abnormalities, and behavioral changes. Risk factors for HAND include a low nadir CD4 cell count, age, and other comorbidities, such as cardiovascular and metabolic disease.

The main cognitive deficits that have been reported in milder presentations of HAND include problems with attention and working memory, executive functioning, and speed of informational processing. The onset and course are generally more slow-moving, and deficits may remain stable or apparently unchanged for years.

HAD is related to the effect of HIV on subcortical and deep grey matter structures and occurs mainly in patients who are untreated with advanced HIV infection. Unlike other neurodegenerative diseases (e.g., Alzheimer’s disease), deficits occurring in HAD may come and go over time. Onset of impairment is most often subacute, and cerebral atrophy is often evidenced on brain imaging.

Risk factors for HAD include high serum or cerebrospinal fluid HIV viral load, low education level, advanced age, anemia, illicit drug use, and female gender. The dementia is characterized by subcortical dysfunction with:

• Attention-concentration impairment
• Depressive symptoms
• Impaired psychomotor speed and precision

Patients with HAD may also have changes in mood that can progress to psychosis with paranoid ideation and hallucinations, and some may develop mania (Pieper & Teisman, 2023).

(See also “Other Complications” earlier in this course.)

DELIRIUM

Because of the complexity and the number of comorbid disorders, delirium is highly prevalent in those with HIV disease. Differential diagnosis includes:

• HIV-associated dementia
• AIDS mania
• Minor cognitive motor disorder
• Major depression
• Bipolar disorder
• Panic disorder
• Schizophrenia

Delirium can usually be distinguished by its rapid onset, fluctuating level of consciousness, and a link to a medical etiology (Pieper & Teisman, 2023).

Mental Health Interventions

Mental health problems associated with HIV/AIDS are often neglected. Their presence compromises HIV care and prevention efforts, and when unaddressed, they compromise treatment outcomes, increase HIV virus-resistant strains, leave pockets of potential HIV spread in the community, and can lead to a poorer quality of life and early death of persons living with HIV/AIDS. Integrating behavioral health services along with HIV care holds promise for improving substance use, mental health, and HIV-related health outcomes.

The goal of mental health management is to assist the patient living with HIV to manage symptoms and live as well as possible. Effective treatment plans usually involve a combination of medication, therapy, and social support. Healthcare providers can refer HIV patients for mental health management to a mental health provider for care, which may include:

• Psychiatrists, who treat mental health problems with various therapies and prescribe medications such as antidepressants, anti-anxiety medication, antipsychotics, or mood stabilizing drugs
• Psychologists and other therapists, who treat mental health problems with various therapies, such as regular talk therapy in individual, group, marital, or family settings, and behavioral interventions, such as yoga, meditation, mindfulness, symptom management strategies, and education
• Mental health or social support groups, which include organized groups of peers who meet to provide mental health support to one another either in person, through online forums, or via HIV/AIDS hotlines
  (HIV.gov, 2022e; Musisi & Nakasujja, 2022)

Issues for Families and Caregivers

The psychological suffering and grief experienced by people with HIV/AIDS is also shared by family members, friends, caregivers, and partners. Partners and families are often the people who provide most of the physical and emotional care for individuals with chronic illness, including HIV. This can be very stressful and lead to tension among members of the family.

A variety of issues may arise when a family member has been diagnosed with HIV, such as:

• The diagnosis may reveal behaviors that the person may have wanted to keep private. These might include sexual behaviors or intravenous drug use, which can result in feelings of guilt or blame and can lead to a relationship breakdown.
• More than one person in a family may be unwell, adding to the burden of care, causing additional emotional and financial problems.
• Fear of stigma and discrimination may mean that the diagnosis is kept secret. This can prevent immediate family members from accessing the wider support of extended family members or the community.
• A family with a child who is infected with HIV must consider when and how to disclose this information to the child.
• Parents may find it problematic to discuss sexual behavior and risk with younger children, which can have prevention implications for them later on.
• When a child with HIV reaches adolescence, problems can arise concerning adherence to treatment and safe sexual behavior.
• Poor access to information can result in people not taking their medication as prescribed or not attending healthcare visits regularly. Members of the family may disagree about the best course of treatment.
• Family members may have to cope with the mental health problems that commonly develop in people who are living with HIV.
  (AAMFT, 2023)

End-of-Life Issues

Because of the advancement of effective antiretroviral therapy, the increased life expectancy for persons diagnosed with HIV is contributing to a rapidly aging HIV-infected population with a high prevalence of comorbidities. These comorbidities, and not HIV, are most often the cause of death for people in this population.

For patients with HIV/AIDS who are approaching the end of life, creating advance directives that outline their choices and preferences for care can be difficult. One of the most important decisions is whether and when to discontinue ART. This is particularly stressful for both the patient and family because it may be seen as “giving up.”

Individuals who are dying from a condition besides AIDS must consider whether or not to continue to receive antiretroviral treatment. Reasons for continuing ART may include:

• Discontinuance will lead to uncontrolled viremia, which could contribute to symptom burden.
• ART may help sustain cognitive functioning, as system viral load does not always correlate with central nervous system viral load.

Reasons for considering discontinuation of ART may include:

• Continuing medications might contribute to anxiety for patients who have trouble taking medication, cause confusion about goals, and distract from advanced care planning.
• Patients may experience “pill burden” and potential drug-drug interactions with common palliative care medication. For example, some ART medications increase levels of some opioids (e.g., oxycodone) while decreasing the levels of other opioids (e.g., methadone).

With continued treatment, the patient may choose palliative care. If treatment for HIV is to be discontinued, the choice for hospice care during the last six months of life recognizes that treatment is no longer of benefit and the disease will run its course (Pahuja et al., 2023).

Issues Affecting Special Populations

HIV/AIDS takes a heavy toll on people of all ethnicities, genders, ages, and income levels. However, some populations have been uniquely affected by the epidemic.

SEXUAL MINORITIES

The high prevalence of mental health problems among sexual minorities has been attributed to sexual minority stress. Minority stress may contribute to identity conflict and increase condomless anal sex by isolating men who have sex with men, transgender women, and gender nonbinary people of color (Sarno et al., 2022).

PEOPLE WHO INJECT DRUGS

People with HIV who use injection drugs are a population with extensive psychiatric, psychological, and medical comorbidities, the most significant being major depression. Depression is associated with worsening of addictions and resistance to treatment. Patients who are depressed often find it difficult to engage in, invest in, and sustain treatment.

Because drug use is criminalized, people who use drugs often live or take drugs in underground, hidden places, making it harder for services to reach them. Healthcare workers, police, and other law enforcement agents are often discriminatory toward people who use drugs, which prevents them from wanting to access HIV services (Be in the KNOW, 2023b).

ADOLESCENTS WITH PERINATAL HIV INFECTION

The prevalence of mental health disorders in youth with perinatally acquired HIV is high, with nearly 70% meeting the criteria for a psychiatric disorder at some point in their lives. The most common conditions include anxiety and behavioral disorders, mood disorders (including depression), and attention deficit hyperactivity disorder, all of which complicate adherence to treatment and retention in care. The prevalence of attempted suicide is also notably higher in adolescents with HIV compared to others.

Adolescents with perinatally acquired HIV are also at risk for neurocognitive impairment and substance use disorders, which also can interfere with medication adherence.

Challenges that affect the treatment of adolescents with perinatally acquired HIV include extensive drug resistance, complex regimens, the long-term consequences of HIV and antiretroviral exposure, the developmental transition to adulthood, and psychosocial factors.

Assessment of antiretroviral adherence in adolescents with HIV can be challenging, with discordance between self-report and other adherence measures, such as viral load and therapeutic or cumulative drug levels. This should involve immediate and open discussions with the adolescent and their caregiver(s) (HIV.gov, 2023e).