PSYCHOSOCIAL AND MENTAL HEALTH ISSUES

Patients with all stages of HIV disease have complex problems that include overlapping medical, psychiatric, and psychosocial comorbidities. There is a great deal of evidence that impairment in mental health leads to negative health outcomes among people living with HIV/AIDS. Mental disorders can be a substantial barrier to adequate engagement and retention in HIV primary care. Many factors contribute to the high comorbidity of HIV and mental health conditions, including significant structural, social, and biological challenges to accessing and adhering to HIV prevention and treatment modalities (Remien, 2018).

Identifying mental health issues among people living with HIV is critical; however, far too often they 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. Psychosocial concerns should be assessed on a regular basis to identify stressors that may impact patient adherence to medical visits and medications (MHA, 2020).

Psychosocial Impacts

There are a number of significant negative effects on individuals who have been diagnosed with HIV that involve the interrelation between their mental and emotional well-being and their social environment.

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.

There are many stressors that may arise when someone receives a diagnosis of HIV. These might 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, and dealing with the stigma that has long been associated with HIV/AIDS (MHA, 2020).

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 six 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, 2019).

FEAR OF DISCLOSURE

At some point people living with HIV must decide whether and to whom to disclose their HIV status. 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.

There are also concerns that stigma and fear may deter an individual’s dating partner from proceeding further in the relationship, and disclosing to family and friends brings about the potential stress of becoming the subject of gossip among other family members, friends, and acquaintances (CDC, 2020k).

LOSSES AND UNRESOLVED PAST 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 have become an ongoing experience. Today, with antiretroviral drugs, there is now a low rate of progression from HIV to AIDS, and HIV-positive people 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 of homosexuality, more education about HIV, and the legalization of same-sex marriage, this is gradually lessening.

Another common issue an HIV-infected person may have is grief over the loss of a sense of the future. For some who, in the past, were told they would die, there is a sense of sorrow for having not pursued interests because of the perception of a shortened life-expectancy. This can leave the person with feelings of anger and bitterness (GriefLink, 2019).

STIGMA AND DISCRIMINATION

Around the world and in many areas of the United States, homosexuality and use of illegal drugs, both risk factors for HIV infection, continue to be stigmatized. Some hold false beliefs that contribute to stigma, which can include:

• HIV and AIDS are always associated with death.
• HIV is associated with behaviors people disapprove of.
• HIV is only transmitted through sex, a taboo in some cultural groups.
• HIV is the result of irresponsibility or moral faults, and punishment is deserved.
  (Avert, 2019b)

HIV stigma drives discrimination in all areas of society, including healthcare, education, the workplace, the justice system, families, and communities. Although there have been significant improvements, there continues to be a risk that people who are infected with HIV are more likely to feel stigmatized and isolated. Fearing that their diagnosis will result in the judgmental behaviors of others, rejection, and 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.

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 (Mahlaser, 2020). Social stigma associated with both homosexuality and HIV is identified as a stressor that may contribute to a higher suicide rate in HIV-positive individuals (GriefLink, 2019).

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, affecting the person’s ability to live positively and limiting qualify of life (Avert, 2019).

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.

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 difficult and stressful for both the patient and family because it may be seen as “giving up.” With continued treatment the patient may choose palliative care, and if treatment 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 (Merlin et al., 2019).

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, which may be related to the direct effect of the virus, preexisting psychiatric conditions, personality vulnerabilities, affective disorders, addictions, and responses to social isolation.

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 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, 2020; Pieper & Teisman, 2020).

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
• 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, 2020)

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

Depression is common among women with HIV and may be a contributing factor to negative outcomes in this population. It has been found that each additional 365 days of depressive symptoms were associated with a 72% increase in the mortality risk (Aberg & Cespedes, 2020).

Depression is an important factor in adhering to ART, with a high probability that patients with depression are more likely not to stay actively engaged in care and to miss at least one dose of their ART regimen. Treatment for depression helps patients better manage both diseases, enhancing survival rates and quality of life (Mahlasera, 2020).

Depression is a problem in the lives of adolescents and young people living with HIV related to additional challenges such as accessing mental health services, the high cost of medications, disease progression, difficult life events, and fear of parental rejection (Mahlaser, 2020; GriefLink, 2019).

ANXIETY

Anxiety disorders are estimated to be present in up to 40% of HIV-positive patients, but the prevalence of anxiety symptoms without a diagnosed disorder is even higher. 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. Anxiety can increase the likelihood of HIV risk behaviors and ART nonadherence.

The most common anxiety disorders in HIV patients are generalized anxiety disorder and panic disorder. Up to 50% of patients with anxiety disorders have comorbid depression, and alcohol use disorder is also common, especially among women (Hsu et al., 2018).

POSTTRAUMATIC STRESS DISORDER (PTSD)

Patients with HIV infection have a higher exposure to traumatic events than the general population and as a result are at high risk for the development of PTSD. PTSD exacerbates HIV risk behaviors and negatively impacts health outcomes. PTSD resulting from early trauma predisposes individuals to engage in sex or drug behaviors that increase the risk of HIV infection. PTSD often coexists with depression and substance use, both of which are risk factors for HIV (Pieper & Teisman, 2020).

AIDS MANIA

Mania in HIV-infected patients is a syndrome occurring in the late stage of the infection that has been associated with HIV dementia and rapid deterioration. AIDS mania occurs in the absence of a previous family or personal history of bipolar disorder and is characterized by typical manic behaviors, auditory or visual hallucinations and paranoia, and cognitive changes. AIDS mania is associated more with irritability rather than the euphoria associated with bipolar disorder and is also far more chronic.

AIDS mania presents with impulsivity, impaired judgment, and risk taking, all of which can lead to behavior that accelerates HIV disease progression.

In contrast to bipolar mania, AIDS mania usually does not remit if left untreated. The prevalence of AIDS mania has been significantly reduced due to the onset of potent ART but remains a problem among untreated and undertreated individuals (Pieper & Teisman, 2020).

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. HIV-associated neurocognitive disorders have not declined significantly with the advent of combined ART, but milder cognitive deficits without alternative explanation remain common in the setting of HIV infection.

HAND is characterized by the subacute onset of cognitive deficits, central motor abnormalities, and behavioral changes. Cognitive decline is the essential feature in HAND, but many patients have mild deficits that are detectable only by neuropsychological testing and do not reach the criteria necessary for a diagnosis of dementia, which includes the inability to perform the usual activities of daily living.

Depending on the severity and impact on the person’s daily functioning, cognitive deficits can be classified into three conditions:

• Asymptomatic neurocognitive impairment (ANI)
• HIV-associated mild neurocognitive disorder (MND)
• HIV-associated dementia (HAD)
  (Price, 2017; Johns Hopkins, 2020; Peters & Triesman, 2017)

Although it varies by stage of disease, at least mild HAND occurs in one third to one half of HIV-infected individuals, and 5% of individuals with HIV have signs and symptoms that meet criteria for serious HAND.

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:

• Impairment in concentration and attention but not in judgment
• Memory deficits
• Mental slowing, apathy, and lack of motivation
• Impaired psychomotor speed and precision

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.

Patients with HAD may also have changes in mood that can progress to psychosis with paranoid ideation and hallucinations, and some may develop mania (Price, 2017; Pieper & Teisman, 2020).

Mental Health Interventions

Psychosocial concerns are assessed on a regular basis to identify stressors that may impact the patient’s adherence to treatment. Given the strong evidence for the contribution of mental health and behavioral problems to poor HIV health outcomes, it is necessary to integrate mental health screening and mental health treatment into ongoing HIV care.

Interventions range from supportive psychotherapy for grief and loss issues to treatment of specific HIV-associated neuropsychiatric conditions. They may include pharmacology, cognitive and/or behavioral therapy, stress management, motivational interviewing, interpersonal therapy, supportive interventions, and meditation.

Studies have found that the greatest positive effects occur when lengthier and multilevel interventions are used and when they are integrated into community-based healthcare settings. Interventions that include family interactions and peer support, as well as those delivered by mental healthcare professionals, have been found to be the most effective (Remien, 2018).

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.

Some of the issues that may arise when a family member has been diagnosed with HIV include:

• 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.
• Fear of stigma and discrimination may mean that the diagnosis is kept secret. This can prevent immediate family members from 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.
• Conflicts may arise in regard to religious or cultural beliefs.
• 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.
• 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, 2019)

Issues Affecting Special Populations

HIV/AIDS takes a heavy toll on all ethnicities, genders, ages, and income levels. However, some populations have been uniquely affected by the epidemic. Some of these populations include men who have sex with men, people who inject drugs, people with hemophilia, women, and people of color.

SEXUAL MINORITIES

Even with the continuing advancements being made in HIV prevention and treatment, men who have sex with men remain the population impacted most by HIV/AIDS. These sexual minorities include people who have sexual contact with persons of the same or both sexes and include gay, bisexual, queer, and transgender men. Transgender women in certain communities also have higher odds of infection. These individuals are disproportionately affected by psychological problems, which may include distress, depression, PTSD, and substance use disorders.

The high prevalence of mental health problems among these groups compared with heterosexual men has been attributed to sexual minority stress. Mental health problems are the consequences of distressing environments, including stigma, prejudice, and discrimination. Negative psychological outcomes may include expectations of rejection, hiding and concealing, and problematic coping strategies (Batchelder et al., 2017).

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. Depressed patients often find it difficult to engage in, invest in, and sustain treatment.

Personality factors also contribute to greater risk-taking and increased sensitivity to rewards. These individuals are more likely to engage in high-risk behavior, while greater sensitivity to rewards is associated with increased sensitivity to the reinforcing properties of and decreased sensitivity to the consequences of drug use.

Because of the recent epidemic of prescription and nonmedical opioids, there is an increased number of people who inject drugs, resulting in many more at significant risk for HIV. Where drug use was more common in urban areas, more nonurban and rural areas are now being affected. These were areas formerly at low risk for HIV and often have limited HIV services and substance use disorder treatment programs available.

In addition, people who inject drugs are often viewed as criminals rather than as having a medical issue that requires treatment. Mistrust in the healthcare system may prevent these people from seeking HIV testing and treatment (Weibel, 2018).

ADOLESCENTS WITH PERINATAL HIV INFECTION

In recent years there has been an increasing number of patients with perinatally acquired HIV entering adulthood, and this has provided insight into the obstacles and challenges unique to this population. These are related to being highly ART experienced, the psychosocial stressors of disclosure, and their own sexual and reproductive health. These young people report that anger and blame toward their biological mothers has a tremendous impact on their lives and self-care.

The prevalence of psychiatric and behavioral problems in perinatally HIV-infected children is higher than in the general population, and these comorbidities complicate treatment adherence and retention in care. Nonadherence increases the risk of HIV transmission and is worsened by anxiety surrounding the issue of disclosure to partners (Wang’ongu et al., 2018; Gillespie, 2019).