People with HIV/AIDS and their families and friends face many difficult realities. Many adults with AIDS are in the prime of life and may not be prepared to deal with thoughts of death and dying. The infections and malignancies that accompany AIDS—along with certain medications—can diminish and disfigure the body. Adults caring for children with HIV face many difficult realities.
Some people infected with HIV may be members of groups that are already stigmatized and face discrimination and encounter even more societal pressure and stigma following an HIV or AIDS diagnosis. People infected with HIV may be rejected by family, friends, or co-workers.
Health workers, social workers, teachers, and unpaid caregivers risk their health to provide care and ensure that basic goods and services remain available. Yet they often work in unsafe and exploitative working conditions, they are chronically underpaid and under-resourced, and they are underappreciated during all but the most acute phases of crises. Elevating essential workers and providing them with the resources and tools they need is critical to keeping them on the job (UNAIDS, 2021, December 1).
Most states, including Florida, offers services at local departments of health to link people with care and support services. HIV-infected or HIV-affected people can be linked to medical care, insurance programs, volunteer groups, hospice, and other types of care and support services.
People living in communities that have been significantly affected by HIV may have seen many of their friends pass away, which can lead to chronic grief. Grief can intensify over time and manifest in physical symptoms such as clinical depression, hypochondria, anxiety, and insomnia.
A person newly diagnosed with HIV may react with disbelief and numbness. The fear of the unknown, the onset of infections, swollen lymph nodes, and weight loss (or unusual weight gain) can be accompanied by fear of developing AIDS, or of getting sicker. In some cases, guilt develops about the disease, about past behaviors, or about the possibility of having unwittingly infected someone else.
People living with HIV may feel that their “normal” lives have ended. The need to maintain a detailed medication schedule and attend multiple medical appointments can be stressful—especially for a previously healthy young person. Medications are costly and may result in financial hardship, even if the person has medical coverage.
Sadness, hopelessness, helplessness, withdrawal, and isolation are often present. Anger is common: at the virus, at the effects of medications or the failure of some of the medications, and at the prospect of illness or death.
Healthcare professionals should be aware of the psychological suffering people with HIV/AIDS may be experiencing, which can often be masked by maladaptive behaviors such as sexual promiscuity or drug and alcohol abuse.
Some people with HIV may consider suicide or attempt suicide, and some may succeed. Due to the success of antivirals, the suicide rate among people with HIV/AIDS has dropped significantly in recent years. Nevertheless, suicide rates remain higher than the general population. If you someone who is thinking about suicide, call the National Suicide Hotline for more information.
Issues for Caregivers in the U.S.
A caregiver is someone who assists a person in need of care. Care can be physical, financial, or emotional. Caregivers can help with basic activities of daily living or with more complex tasks such as medication and home management. A caregiver may provide direct care or manage care from a distance and can be a family member, a neighbor, a friend, or a professional.
Feelings experienced by caregivers—such as a sense of vulnerability, helplessness, and isolation—can mirror those of the person living with HIV. Finding a support system, including a qualified counselor, can be just as important for the caregiver as for the person living with HIV. Good self-care is vital and must be focused on issues specific to each caregiver.
Although families are the primary source of support they are often overwhelmed, marginalized, and under-resourced. Professionals knowledgeable about HIV can help identify vulnerable families, provide access to services, coordinate care, and monitor progress (Kidman and Heymann, 2016).
For people caring for HIV-affected children, HIV can exacerbate existing vulnerabilities, leading to economic, psychological, and social strain. For example, poverty is intensified in HIV-affected families. Medical bills drain resources and illness interferes with income-generating work. For elderly caregivers, the HIV-related death of their own children means that they must not only raise grandchildren but do so without the intergenerational support they might have otherwise received (Kidman and Heymann, 2016).
HIV-affected children commonly reside in the same household as HIV-infected family members, creating dual caregiving responsibilities. Vulnerabilities are interwoven and compound one another. For instance, food scarcity amplifies caregiver depression; depression accelerates disease progression; and poor health among caregivers results in more poor health among children (Kidman and Heymann, 2016).
Some vulnerabilities are unique to HIV-affected caregivers and require specialized services. HIV-positive caregivers need timely access to quality medical care. Caregivers also need help caring for HIV-positive family members at home and constitutional protections against discrimination. These needs are HIV-specific (Kidman and Heymann, 2016).
Policies that support HIV-affected caregivers include:
- Offering adequate sick and family leave policies.
- Providing economic security.
- Protecting income during illness.
- Providing access to education.
- Ensuring access to quality healthcare.
- Expanding social services.
Kidman and Heymann, 2016