In the early 1980s, an unusual collection of clinical entities appeared that were characterized by aggressive opportunistic infections and malignancies in otherwise healthy individuals. These individuals also demonstrated a severe compromise of immune defense mechanisms. The disease was universally fatal. This complex syndrome of signs and symptoms was labeled as acquired immunodeficiency syndrome (AIDS). Within several years, the agent responsible for the disease (a single-strand RNA virus labeled human immunodeficiency virus, or HIV) was identified by several different research groups. The virus selectively infects a cell line in a person’s immune defense mechanism (T-helper cells) that is critical for successful detection of infection, elimination of organisms causing certain infections, or removal of potential tumor cells. HIV, a spectrum disease, progresses in stages. First, shortly after infection, there are mild flu symptoms. This is followed by an asymptomatic phase, which may give rise to symptoms resulting from destruction of the immune defense mechanisms, including opportunistic infections and malignancies (usually within 10 to 15 years). Therefore, a person’s ultimate demise is not from HIV per se but instead from the consequences of the ability of the virus to destroy the host’s immune defense mechanisms. In all phases of the disease, the same inexorable deterioration of immune system is fueled by HIV.
In the not-too-distant past, a diagnosis of HIV/ AIDS in the United States was considered tantamount to death. More recently, however, early diagnosis, aggressive treatment, and the advent of drug combinations have transformed HIV/AIDS into a chronic condition that may afford individuals longevity long after diagnosis. In particular, those who can afford and have access to medications and who adhere to treatment regimens have higher rates of survival than ever before. This increased longevity for HIV/AIDS patients is paralleled by a rise in psychosocial issues related to AIDS survivorship.
It should be considered that while the picture in developed nations is improving with regard to prevention and survival, this is not the case in developing nations or those for whom access to medical care for HIV/AIDS is restricted. Although HIV/AIDS is a disease found throughout the world, there is a very high prevalence in sub-Saharan Africa, and a rapidly increasing prevalence in the Indian subcontinent and the countries making up the former Soviet Union. Moreover, there is a shift occurring in the epidemiology of HIV/AIDS; for example, in the United States the number of AIDS/HIV cases attributable to heterosexual contact with what would be considered non-high-risk partners surpasses the number of cases attributable to heterosexual contact with high-risk partners. Women are becoming increasingly vulnerable in that they account for about 44% of AIDS cases worldwide. In addition, the infection rate for African Americans and Latinos is significantly proportionately higher than the rate for Caucasians in the United States.
For those patients who are fortunate enough to obtain state-of-the-art medical care, however, the resulting increase in longevity has driven the current focus on the importance of the individual’s psychological state as a determinant of the success of treatment. Thus, comprehensive treatments for persons with HIV/AIDS include social and psychological services in addition to medical services.
Risk and Risk Factors for AIDS
HIV can be transmitted between individuals by: (1) engaging in unprotected sex with an HIV-positive partner, (2) injecting drugs using needles contaminated with HIV-infected blood, (3) exposing a fetus at the time of delivery to maternally infected blood, and (4) breast feeding an infant with milk from an HIV infected mother. With effective screening of the blood supply in developed countries, blood transfusion and transplantation of body parts are no longer considered risk factors for HIV; however, this is not universally the case due to the fact that meticulous screening of the blood supply is still not accomplished in developing countries. Healthcare workers who are routinely exposed to blood are also at risk. With the emphasis on the education of healthcare workers, the use of universal precautions, and the introduction of shielded syringes, the risk of needle stick transmission to healthcare workers has dropped to less than 0.03%.
Prevention programs have targeted populations that have a high likelihood of exposure such as individuals who engage in high-risk sexual behaviors and those who are less well educated, are heavy alcohol consumers, are moderate to heavy drug users, or are younger in age, especially teens. Research suggests that heavy alcohol consumption is the factor that is most strongly associated with HIV infection. Also, studies consistently show that between 25% and 35% of people living with HIV/AIDS continue unprotected sexual practices with partners who are HIV negative or who have unknown HIV status.
Research consistently demonstrates that brief, focused behavioral risk-reduction interventions grounded in theoretical models of health behavior change contribute to meaningful reductions in HIV risk behaviors. Support groups reinforce safe sexual practices and positive behavioral changes and may use educational and skill-building techniques. Attrition is a difficult challenge with prevention groups, and although individual or small group interventions are shown to be most effective, they are often difficult to implement in public health settings.
Diagnosis of HIV/AIDS
The medical conditions associated with HIV disease that may indicate infection often depend upon the region in which the patient is diagnosed. In developing countries, infection with mycobacterium tuberculosis, severe and frequent gastroenteritis with subsequent malnutrition, and respiratory infections are frequently life defining.
On the other hand, in developed countries, opportunistic infections such as Pneumocystis carinii pneumonia, toxoplasmosis, repeated bacterial pneumonia, lymphoma, disseminated fungal infections, and Kaposi sarcoma are conditions suggesting underlying HIV infection. Death is the result of an immune system so weakened that, even with appropriate therapeutic agents, there is no inherent mechanism to mount a successful host defense.
There are a number of issues involved in testing for HIV that have psychosocial implications. First, patients must confront identifying themselves as at risk for a disease that is socially stigmatizing; they must face the fear of disclosure. Second, there is a waiting period between being tested and finding out the results. Finally, there is the process of coping with the social and personal implications of an HIV-positive diagnosis. A further complication for health care is that between 9% and 28% of those patients tested do not return for the results of the testing.
When informed of HIV-positive status, many patients experience an increase in anxiety, depression, and general psychological distress. Those who receive stress management treatment prior to knowing if they are infected, however, showed significantly less increase in depression and no increase in anxiety compared to controls.
Following an HIV-positive diagnosis, there may be an asymptomatic period that can last for many years. Several studies have shown that anxiety and depression during this time is in the normal range, although differences do appear after the diagnosis of AIDS (with significant symptomatology). In the vocational, domestic, sexual, and social domains of psychosocial adjustment, men with AIDS are more poorly adjusted than uninfected men and HIV-positive asymptomatic men, who are similar to one another. Moreover, there is some evidence that men with HIV who are depressed when they are asymptomatic may have an overall greater immune system impairment (e.g., CD4 lymphocyte decrement) over time (6 years) than those who were not depressed. Thus, the early diagnosis and treatment of depression might be important for the subsequent well-being of the HIV-positive person.
Progress in Medical Treatment
Each treatment for AIDS has a unique impact on the coping process. Therapeutic options to treat HIV rather than only the consequences of immune system suppression started in 1987 with the advent of AZT, a medicine that interfered with the life cycle of HIV in the host T-helper cell. The effectiveness of the medicine was usually short lived because of the ability of HIV to mutate and because agents operating at multiple sites of the virus replication were not yet available. A breakthrough in treatment occurred in 1996 when highly aggressive antiretroviral therapy (HAART) became a reality.
Drugs that interfere at three different sites of HIV replication were now available, and the dramatic drop in the annual rate of death from HIV throughout the United States was remarkable. The development of drugs to interfere at other locations in the viral life cycle continues. Additionally, there is significant drive to reach the elusive goal of developing an effective vaccine to assist the infected host to limit viral replication. Finally, the adherence to treatment regimens has been markedly simplified from 28 pills per day in 1996 to 2 in 2004. Furthermore, the Food and Drug Administration (FDA) just approved a one-pill-per-day regimen, which represents a cooperative effort among several drug companies.
The term coping is often used with AIDS in that the disease is conceived of as a threat that may tax the resources of the individual. Men with AIDS who use avoidant coping strategies experience more psychological distress than those who used social support or active-behavioral approaches to problem solving. Also, avoidant coping is associated with higher levels of depression, more health concerns, lower levels of social support, and lower self-esteem compared to active-behavioral coping. A belief in personal control that relates to day-to-day symptoms and to the overall course of the illness were associated with positive adjustment to AIDS. Thus, men who adjust well to AIDS view themselves not as passive victims of the disease but as having control over certain daily aspects of the disease and the overall course of the disease.
The stigmatizing aspects of HIV/AIDS are often accompanied by the fear of loss of social support. Moreover, symptoms may impact social support. The greater the number of physical symptoms reported by a person with AIDS, the less social support is perceived to be available and the greater the concomitant depression and anxiety. Researchers suggest that two processes may operate: First, serious illness may alter the support network significantly, and second, stigmatizing disease such as AIDS may be associated with decreased social support, which may be accompanied by withdrawal by the person with AIDS to avoid future rejection. Reports of higher levels of social support were associated with lower levels of hopelessness and depression, but the latter constructs were not correlated with physical symptoms, suggesting that suicidal ideation may be related more to the loss of support than to the state of the disease. Persons with AIDS who perceived an increase in social support and those who perceived no loss in support adjusted better than persons who perceived a loss in social support.
Quality of Life
It has been estimated that individuals with AIDS spend several hours each day on personal medical care, paperwork, getting the extra rest needed to sustain activity, and other activities relating to self-care, which would suggest that quality of life plays a large role in the life of a person with AIDS. HIV/AIDS carries with it the burden of personal health issues that are very time consuming and the social burden of being stigmatized. Thus, quality of life may be affected by both the disease and the social stigma attached to it.
Long-Term Survivors of AIDS
The Centers for Disease Control and Prevention (CDC) define long-term survival as survival 3 years after diagnosis. Not only has the survival rate doubled in the past decade, but with the advent of HAART the survival rate should increase even more dramatically over the next 10 years. Much of the research in this realm is descriptive but seems to indicate that survivors most often have active coping styles and are relatively free of mood disorders and other psychological distress. In addition, most long-term survivors have had bouts with life-threatening illness and seemed to bounce back after each setback. Moreover, survivors tend to believe that they will experience good times and feel strongly that their lives are important.
Long-term survivors support the use of traditional medicine, particularly to treat opportunistic infection. They are also more likely to believe that chance or personal control are associated with health outcomes rather than the actions of powerful others. That is, they tend to believe that medical interventions can help but are not a panacea. There is very little, if any, use of denial as a coping strategy in long-term survivors. Moreover, there is flexible use of many different types of active coping strategies.
Given that more adults are being infected at later ages, and due to the increased effectiveness of the medical management of HIV/AIDS, there are a number of older persons living with HIV/AIDS. This new phenomenon has both medical and psychological implications. Research suggests that middle-aged and older persons living with the disease experience significant emotional distress and thoughts of suicide. This particular population may have unique psychological concerns, and they are likely to approach such issues differently than younger persons with HIV/AIDS. Thus, interventions should be tailored to reflect the developmental contexts.
Psychosocial Interventions to Promote Quality of Life and Longevity
Recommendations have been made concerning the psychosocial needs of AIDS survivors. Essentially, the recommendations include the need to support the survivors’ tendency to engage in active coping that is powered by beliefs of personal control. Also, therapists should be mindful of changes in the support network of the person with AIDS. A shrinking social network may portend a less than optimistic outlook for long-term survival.
Research on psychosocial interventions to enhance quality of life has shown great promise for enhancing coping. One approach, which includes a cognitive-behavioral stress management treatment, focuses on recognizing the signs of stress and negative automatic thoughts, relaxation training, and providing information on AIDS and the immune system, sexual risk behaviors, and social support. The stress management and information sessions are alternated with relaxation sessions. This treatment resulted in reduced anxiety and depression for HIV-positive males as compared to a no-treatment control group whose members also had decreased immunological functioning after notification of the results of HIV testing. At 1-year follow-up, coping strategies such as denial and disengagement were associated with increased depression. On the other hand, coping skills such as active coping, planning, and positive reappraisal were associated with a decrease in depressive symptoms. At 2-year follow-up, predictors of disease progression included degree of distress at time of diagnosis, denial, poor attendance in the group, and failure to comply with relaxation homework. Thus, the functional status of men who did not use denial and who participated fully in the intervention was better than those who used denial and who did not adhere to the treatment protocol. In sum, psychological interventions for persons with cancer and HIV have beneficial effects on psychosocial functioning, quality of life, and survival in the case of cancer. Common components of these interventions include group support, fear reduction, problem solving, and stress management.
- Kalichman, S. C. (2003). The inside story on AIDS. Washington, DC: American Psychological Association.
- Kelly, J. A., & Kalichman, S. C. (2002). Behavioral research in HIV/AIDS primary and secondary prevention: Recent advances and future directions. Journal of Consulting and Clinical Psychology, 70(3), 626-639.
- Rabkin, J. G., Ferrando, S. J., Lin, S., Sewell, M., & McElhiney, M. (2000). Psychological effects of HAART: A 2-year study. Psychosomatic Medicine, 62, 413-122.