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Key Points About Coping and Adjustment Psychological and Neuropsychological Assessment |
Human immunodeficiency virus (HIV) is an epidemic causing disease and death across the globe. Since it is global, HIV can be called a pandemic. The World Health Organization estimates that 30.6 million people are infected with the HIV virus, nearly two-thirds of whom live in Sub-Saharan Africa. Approximately 5.8 million people are infected with HIV each year and 2.3 million die of an AIDS-associated illness.
Infection with the HIV virus leads to changes in the immune system that can result in a cluster of symptoms that are recognized as AIDS. A person who has HIV disease has tested positive for the HIV virus in her or his bloodstream. In the United States, a person is not considered to have AIDS until he or she meets a definition adopted by the Centers for Disease Control and Prevention (CDC) in 1993. According to the definition, a person's T-helper lymphocyte blood count must be below 200 and the person must have had one or more opportunistic infections associated with AIDS.
The AIDS epidemic in the United States first appeared in the spring of 1981, when young men in New York City and Los Angeles became ill with what were at the time very rare diseases. Since most of these men shared only a homosexual sexual orientation in common, AIDS was first named gay-related immune deficiency (GRID). In 1984, scientists in France and the United States discovered that AIDS was caused by a virus named lymphadenopathy associated virus (LAV), human T-cell lymphotropic virus type III (HTLV-III), and AIDS-associated virus (ARV). The virus was renamed human immunodeficiency virus Type 1 or HIV-1.
The best way to find information about the numbers of AIDS cases in the United States is from the Centers for Disease Control and Prevention's surveillance reports on the AIDS epidemic, published twice a year in January and June. For example, in the United States, 641,086 cases of AIDS had been reported to CDC as of December, 1997. Of these, 534,532 (83%) were males aged 13 or older, 92,242 (15%) were females aged 13 or older, and, 1% were children under age 13.5. New AIDS cases reported to the CDC declined 12% from the first six months of 1996 (33,590 cases) to the first six months of 1997 (29,520 cases) (CDC, 1998).
From 1985-1996, the proportion of U.S. AIDS cases in women increased from 7% to 20%. Among U.S. residents with AIDS in 1996, blacks accounted for a larger proportion of AIDS cases (41%) than whites (38%) for the first time. Hispanics accounted for 19% of U.S. AIDS cases reported in 1996; Asians/Pacific Islanders and American Indians/Alaskan Natives, less than 1%.
As of July 1997, an estimated 650,000-900,000 U.S. residents were living with HIV infection and an estimated 259,000 people in the United States were living with AIDS. During 1997, the rate of new AIDS cases per 100,000 population in the United States was 107.2 among blacks, 50.6 among Hispanics, 12.4 among whites, 13.6 among American Indians/Alaskan Natives, and 5.6 among Asians/Pacific Islanders.
Among men diagnosed with AIDS in the United States in 1996, male-to-male sexual contact accounted for the largest proportion of cases (50%), followed by injection drug use (23%). Among women diagnosed with AIDS in the United States in 1996, most acquired HIV infection through sexual contact with a man with or at risk of HIV infection (40%) or through injection drug use (34%). Heterosexual transmission accounts for an increasing proportion of AIDS cases in the United States. From 1988-1995, the proportion of U.S. AIDS cases attributed to heterosexual contact each year grew from 4.8% to 17.7%.
Through June 1997, 379,258 deaths among people with AIDS had been reported to the CDC. AIDS is now the second leading cause of death in the United States among people aged 25-44.
Suggested Readings and References
Centers for Disease Control and Prevention. (1997). HIV/AIDS Surveillance Report 9 (1).
Centers for Disease Control and Prevention. (1998). HIV/Aids Surveillance Report, 9 (2).
Centers for Disease Control and Prevention. (1997). Update: Trends in AIDS incidence in the U.S., 1996: Morbidity and Mortality Weekly Report, 46 (38), 861-867.
Kalichman, S. C. (1995). Understanding AIDS: A Guide for Mental Health Professionals. Washington, DC: American Psychological Association.
Karon, J. M., et al. (1996). Prevalence of HIV infection in the United States, 1984 to 1992. Journal of the American Medical Association, 276 (2), 126-131.
O'Malley, P. (1989). The AIDS Epidemic: Private Rights and the Public Interest. Boston, MA: Beacon Press.
Quinn, T. (1996). Global burden of the HIV pandemic. Lancet, 348, 99-106.
Shilts, R. (1987). And the Band Played On: Politics, People, and the AIDS Epidemic. New York: St. Martin's Press.
UNAIDS. (1997, December). Report on the Global HIV/AIDS Epidemic.
The human immune system is made up of several types of cells, all working in a coordinated fashion to protect the body from disease. T-helper lymphocyte cells
(T-helper cells), control many branches of the immune system. Macrophage cells are activated to kill bacteria and cancer causing tumor cells and CD8 cytotoxic T-cells work to kill invading viruses and tumor cells. T-helper cells and macrophage cells have CD4 sites on their cell membranes and HIV attaches itself to the CD4 sites.
When HIV attaches itself to a CD4 site, it gains entry into the cell. Infected T-cells and macrophages are rendered defenseless against HIV. T-helper cells are gradually destroyed by HIV, causing a profound effect on the body's ability to fight-off many diseases. When a person is initially infected with the HIV virus, he or she may feel sick with symptoms similar to the flu and then go through a period with no symptoms. Then a group of symptoms such as chronic low-grade fever, persistent fatigue, diarrhea lasting at least two weeks, rashes or other skin conditions, unintentional weight loss of at least 10 pounds, night sweats, and yeast infections in the mouth or throat may last for long periods. A person with such symptoms would not be considered to have AIDS until his or her T-helper lymphocyte count has fallen below 200.
HIV infection may take years before it ultimately causes serious illness. As the immune system of people who are HIV positive becomes more altered by the disease, they can develop many infections and cancers. Many of the illnesses that make-up AIDS are rarely seen in people with healthy immune systems. These diseases take advantage of the body's inability to defend against them. For that reason, AIDS-related illnesses are called opportunistic because they take advantage of the opportunity to cause disease. Opportunistic illnesses include several bacterial, viral, and parasitic infections, as well as cancers. Several of the most common AIDS-associated illnesses are pneumocystis carinii pneumonia (PCP), Kaposi's sarcoma (KS), cytomegalovirus and candida (thrush).
PCP is the most frequently occurring AIDS-defining condition in people with HIV infection in the United States. Pneumocystis carinii exists in the environment and it is believed that everybody inhales it at some point. However, pneumocystis carinii only becomes a health threat when the immune system has been severely damaged, particularly when T-helper lymphocyte cell counts fall below 200. PCP has symptoms of chest pain, chronic fever, fatigue, weight loss, and a dry cough with shortness of breath. Aggressive treatment has proven effective for PCP.
Although rare before the HIV epidemic, KS has been a common malignancy among people with AIDS, with the majority of cases occurring among men who sexually contracted HIV from another man. KS is usually a mass on the skin, mucous membranes, or internal organs. The first sign usually appears as a dark red to violet colored area in people with light skin, and black or brown in people with dark skin. Kaposi's sarcoma also carries a psychological burden because the symptoms are disfiguring and their appearance will frequently mark a person as being seriously ill and can often lead to identifying a person as having AIDS.
For women, the most common opportunistic infections associated with AIDS are gynecological problems such as chronic yeast infections and cervical cancer.
Suggested Readings and References
Bartlett, J. G., & Finkbeiner, A. (1996). The guide to living with HIV infection: Developed at the Johns Hopkins AIDS Clinic. Baltimore, MD: Johns Hopkins University Press.
Centers for Disease Control and Prevention. (1997). HIV/AIDS surveillance reports, 9 (1).
Gallo, R. C. (1987). The AIDS virus. Scientific American, 256 (1), 47-56.
Hacki, K. L., Somali, A. M., Kelley, J. A., & Kalichman, S. C. (1997). Women living with HIV/AIDS: The dual challenge of being a patient and caregiver. Health and Social Work, 22 (1), 53-62.
Mann J., & Tarantola, D. J. M. (1996). AIDS in World II: Global dimensions, social roots, and responses. New York, NY: Oxford University Press.
Miner, K. (1998). The etiology and epidemiology of HIV disease. In M. D. Knox & C. H. Sparks (Eds.), HIV and community mental health (pp.19-36). Baltimore, MD: Johns Hopkins University Press.
Nelson, R. P. (1998). Medical management. In M. D. Knox, & C. H. Sparks (Eds.), HIV and community mental health (pp.91-109). Baltimore, MD: Johns Hopkins University Press.
C. HIV and the Central Nervous System
Although cells of the human immune system are the principal site of HIV infection, any cells that carry CD4 are susceptible to infection. HIV therefore infects cells of the brain that carry CD4 on their surface membranes.
Neurons, the basic unit of the nervous system, are not CD4 cells. However, other cells in the brain, including macrophage and glial cells that support and surround the neurons do carry CD4 and become infected with HIV.
Brain damage occurs in HIV infection when the virus infects CD4 carrying cells that in turn release toxins or create other problems that interfere with neuronal functioning.
It is important for clinicians to note that any timed testing situation can be affected by HIV infection. The earliest neurological symptoms of HIV involve cognitive slowing. In addition, many anti-HIV drugs cause peripheral neuropathy and slowed nerve conduction. In addition, fatigue that is common to people with HIV will slow test performance and therefore suppress cognitive function scores or possibly inflate disturbance scores.
Neurological symptoms of HIV infection usually do not appear until late in the disease process. When they do occur, early HIV-related neurological symptoms cause minor functional disturbances. The most common early HIV-related neurological disturbances involve slowing in mental processes, motor disturbances, and mild memory lapses. These symptoms rarely occur in people who have otherwise remained asymptomatic.
HIV-related neurological problems can occur during the long asymptomatic period of HIV infection, but disturbances are typically mild and transient.
Cognitive disturbances resulting from HIV infection typically coincide with immune suppression, making it likely that neurological impairment will co-occur with opportunistic illnesses.
AIDS dementia complex is an acquired and persistent decline in cognitive functioning that occurs for some people at the late stages of AIDS. It is referred to as a complex because it affects the triad of cognitive, motor, and behavioral functions. Thus, multiple spheres of mental functioning are involved in AIDS dementia. AIDS dementia complex is an initial AIDS diagnosis for approximately 3% of adults and 14% of children with AIDS. Thus, when dementia occurs it is usually at later stages of AIDS.
Because of the broad range of effects that HIV can have on the nervous system, there have been a number of classification systems designed to diagnose HIV-related organic mental disorders. Most systems, however, recognize a continuum of impairment that ranges from mild, to moderate, to severe degrees of dysfunction.
Neurological disturbances also result from opportunistic infections and cancers of the brain that can emerge with severe immune suppression.
Suggested Readings and References
Beck, A. T., & Steer, R. A., & Brown, G. K. (1996). BDI:Beck Depression Inventory Manual, 2nd edition. New York, NY: Psychological Corporation.
Grant, I., & Heaton, R. K. (1990). Human immunodeficiency virus-type 1 (HIV-1) and the brain. Special series acquired immunodeficiency syndrome. Journal of Consulting and Clinical Psychology, 58 (1), 22-30.
Kalichman, S. C., Sikkema, K., Kathleen, J., & Somlai, A. (1995). Assessing persons with human deficiency virus (HIV) infection using the Beck Depression Inventory: Disease process and other potential confounds. Journal of Personality Assessment, 64 (1), 86-100.
Shaw, G. M., et al. (1985). HTLV-III infection in brains of children and adults with AIDS encephelopathy. Science, 221, 177-182.
Zonderman, A. B., Costa, P. T., & McCrae, R. R. (1989). Depression as a risk for cancer morbidity and mortality in a nationally representative sample. Journal of the American Medical Association, 262 (9), 1191-1195.
Early intervention refers to the identification of individuals infected with HIV and appropriate medical and psychosocial treatment. Many physicians believe early intervention to be crucial to the successful long-term treatment of HIV infection. The typical treatment strategy for HIV-positive people involves two components: attacking the virus' replication and preventing opportunistic diseases. The advent of a new class of drugs, protease inhibitors, used in combination with other drugs like zidovudine (AZT) has greatly improved physicians' abilities to slow the replication of the virus, particularly if patients begin treatment before their immune systems are severely compromised. Since not everyone with HIV disease can afford these expensive drugs, equal access to treatment for poor people, women and ethnic minorities, has become an important political controversy.
Early intervention must be tailored to the needs of the population at risk. Winiarski (1997) describes how significant numbers of people in newly emerging groups - women, children, teenagers, injection drug users, homeless people, the chronically mentally ill, and ethnically diverse populations - are medically undeserved. He reports that as many as 31% of people with HIV or AIDS do not have health insurance.
The higher national incidence rates of AIDS among African American and Latino populations is due to a trend toward later identification of HIV-infection and the lack of early intervention treatment. For these minorities, the progression from HIV to AIDS has been more rapid.
Meredith and Bathon (1998) state that a woman's difficulty in sorting out her own needs from those of others such as her children or partner may interfere with her ability to engage in self-care and obtain early intervention. In addition, social prejudice or perceptions that lesbians and bisexual women are at low risk constitute further barriers to care.
Young people often need special assurances of confidentiality regarding the results of an HIV-antibody test. Youth commonly gain access to medical care through their parents or guardians. Thus the decision to begin early intervention treatments is complicated. This is compounded by the lack of research on the effects of drug treatments on youth relative to adults.
Medications for treating HIV infection have shown great promise in recent years. Drugs that work directly on HIV to slow down its disease causing processes are known as anti-HIV medications. These drugs include AZT, ddI, 3TC, and several others. These drugs work by inhibiting an important enzyme involved in the process through which the virus replicates itself. AZT and its related drugs specifically interfere with the enzyme reverse transcriptase, which plays a critical role in the early part of the HIV replication process.
Recently developed anti-HIV medication acts by targeting a different enzyme called protease that is also necessary for HIV to reproduce itself. Drugs that inhibit protease (protease inhibitors) have shown great promise in reducing the amount of HIV in a person's blood. These drugs lower the viral load (number of viral cells) in the bloodstream of persons who are HIV positive.
HIV persists and can replicate in patients who have no detectable virus in their blood as a result of combination antiretroviral therapy, according to a new report from researchers at the National Institute of Allergy and Infectious Diseases (NIAID) and their colleagues (Havlir, D.V. et al, 1998). Combination treatments suppress HIV replication in its early stages (inhibiting reverse transcription of viral genetic material) and late stages (inhibiting protease and its role in assembling new virus particles). It is the combination of drugs that offers a potent effect on HIV.
The CDC reported that overall AIDS deaths in the United States declined 12% between 1995 and 1996, a decrease largely attributable to the new drug therapies. Even as deaths decline, however, there are 41,000 new cases of HIV infection each year, over half among injection drug users, a group less likely to receive and adhere to the new treatments.
Because a person with HIV disease may be required to take as many as 30 pills a day, and because the medications are often required to be taken on rigid time schedules and sometimes with certain types of food, adhering to treatment schedules poses great challenges. Many people are inconsistent in taking their medication. Without nearly perfect adherence, HIV can quickly become resistant to drugs, rendering treatment ineffective. Cross resistance is a problem since resistance to a drug can generalize to other drugs in the same class of medication. Also, drug resistant strains of HIV can be transmitted to others who cannot then benefit from treatments. Debate about the ethics of treatment for everyone has occurred since people who cannot adhere to a drug regimen and who develop drug resistance strains of the virus are a danger to others.
Asymptomatic patients with CD4+ T cell counts lower than 500 or with HIV RNA level greater than 10,000 copies (by bDNA test) or greater than 20,000 copies (by RT-PCR test) should be offered therapy. However, other considerations, such as prognosis for disease-free survival, drug toxicities and willingness of the patient to start therapy and comply, will affect the strength of the recommendation for drug therapy. Finally, based on the principle that continual viral replication results in ongoing immunological decline, some physicians would treat patients with low but detectable viral burdens and CD4+ T cells greater than 500 while others would not (HIV/AIDS Treatment Information Service, 1998).
Researchers are not sure how long the benefits of protease inhibitors will last or whether long term use will lead to toxic reactions. Even in the short term, some people do not improve. There may also be important drug interactions between protease inhibitors and other prescription medicines. Drugs may be time sensitive--they may work for several years and then become ineffective. Having to change drug regimens periodically adds further complications to adhering to treatment regimens.
The potential interactions between protease inhibitors and all classes of psychotropic drugs are unknown but potentially problematic. Medical interventions for HIV infection can overshadow treatment of mental health problems, which often take a lower priority in the eye of providers and patients. Special attention will be required of mental health professionals to safeguard the integrity of their treatment for clients taking protease inhibitors. It is possible that the demand for counseling for people taking combination therapies will increase and gain considerable importance.
Some HIV positive people who have taken combination therapies have experienced enormous improvements in their health. People who were on disability are returning to work and planning for their futures. The extent to which people experience such dramatic benefits is variable depending upon access to drugs and health status.
Early research indicates that combination drug therapies can lower the amount of HIV virus in the blood to undetectable levels. Assuming that infectiousness is related to the amount of virus in the blood, injecting drug users who are HIV positive may be less likely to transmit HIV to their injecting partners. The effect of the new treatments on HIV levels in semen is as yet unknown but it may be that sexual transmission is lower as well. We also do not yet know the extent to which the strain of HIV virus in a person who has taken the new drugs may be drug resistant. We do not yet know the psychological implications for persons on the new treatments.
Many people fear that suggesting that protease inhibitors are a "cure" for HIV disease will encourage people to abandon safer sex. Rates of sexually transmitted diseases (STDs) in the gay community increased during the late 1970's and 1980's when people did not perceive the diseases as problems because penicillin could cure them. Rumors of a cure for HIV might cause similarly risky sexual behavior or increased needle sharing again.
In the past, HIV prevention campaigns emphasized self-protection (just say no or don't share needles). With the new treatments, it is possible that emphasizing responsibility toward others may work. Public health programs could encourage HIV positive people to have treatment in order to help themselves and their partners, another reason drug adherence is so important. More than 90% of HIV cases worldwide occur in developing countries where most people cannot afford costly treatments, so the lower mortality rates in the U.S. and Western Europe are not replicated in poorer, developing countries in Africa and Asia.
Suggested Readings and References
Centers for Disease Control and Prevention. (1995). Case-control study of HIV seroconversion in health-care workers after percutaneous exposures to HIV-infected blood-France, United Kingdom, and United States, January 1988-August 1994. Morbidity and Mortality Weekly Report, 44, 929-933.
Centers for Disease Control and Prevention. (1997). Gonorrhea among men who have sex with men-selected sexually transmitted diseases clinics, 1993-1996. Morbidity and Mortality Weekly Report, 6, 889-892.
Chun, T.W., et al. (1997). Presence of inducible HIV-1 latent reservoir during highly active antiretroviral therapy. Proc Natl Acad Sci USA, 94 (24), 13193-7.
Forester, C. Q. (1997). How I learned to take my pills. AIDS CARE, 1 (3), 36-38.
Gay Men's Health Crisis. (1997). Treatment Issues: Newsletter of experimental AIDS therapies, 11 (10).
Havlir, D.V., et al. (1998). Maintenance antiretroviral therapies in HIV infected patients with undetectable plasma HIV RNA after triple-drug therapy. New England Journal of Medicine, 339 (18), 1261-8.
HIV/AIDS Treatment Information Service. (1998). Guidelines for the use of antiretroviral agents in pediatric HIV infection. Retrieved from the World Wide Web: http://www.hivatis.org/trtgdlns.html
HIV/AIDS Treatment Information Service. (1998). Guidelines for the use of antiretroviral agents in HIV infected adults and adolescents. Retrieved from the World Wide Web: http://www.hivatis.org/trtgdlns.html
Loftus, R. (1997, December). When HIV Drugs Fail. POZ, 100-101.
Meredith, K., & Bathon, R. (1997). A comprehensive center for women with HIV. In M. G. Winiarski (Ed.), HIV mental health for the 21st century (pp. 257-271). New York, NY: New York University Press.
Sande, M. A., & Volberding, P. (1997). The medical management of AIDS (5th ed.). Philadelphia, PA: W.B. Saunders.
Singh, N., Sqier, C., Sivek, C., Wagener, M., Hong Nguyen, M., & Yu, V. (1996). Determinants of compliance with antiretroviral therapy in patients with human immunodeficiency virus: prospective assessment with implications for enhancing compliance. AIDS CARE, 8 (3), 261-269.
Stall, R., Hoff, C., Coates, C. J. Paul, J., Phillips, K., Ekstrand, M., Kegeles, S., Catania, J., Daigle, D., & Diaz, R. (1996). Decisions to get HIV tested and to accept antiretroviral therapies among gay/bisexual men: implications for secondary prevention efforts. J of Acquired Immunodeficiency Syndrome and Human Retrovirology, 11 (2), 151-160.
Toltzis, P., & Colemena, T. (1997). Antiretroviral therapy in children. HIV NEWSLINE, 3 (4) 96-99.
Volberding, P.A. (Eds.). (1997). Strategies to establish and maintain optimal adherence. HIV NEWSLINE, 3(3), 65-66.
Winiarski, M. (Ed.). (1997). HIV mental health for the 21st century. New York, NY: New York University Press.
In order to transmit the HIV virus from one person to another, a sufficient amount of HIV must come in contact with cells that have CD4, a specific receptor on their outer membrane. The CD4 receptor site is where HIV bonds with a cell that it will infect. Several different kinds of cells have CD4, many in blood and other body fulids, some in muccous membranes and some in the brain.
Sharing injection drug equipment with an HIV infected person creates a high risk for HIV transmission because of the exposure to infected blood to another person's bloodstream. HIV is passed on when the virus is in or on an injection needle or syringe that is used by another person. Both the inside and outside of the needles come in contact with blood. In addition, it is common for blood to be drawn up into the syringe while shooting-up, contaminating the entire set of injection equipment, which includes cottons, corkers, and cookers. HIV infected blood can therefore be passed directly from the bloodstream of one person to another. Using clean needles and other injection equipment when shooting drugs or not sharing needles prevents the spread of HIV among injection drug users.
Sexual behaviors that carry the greatest risk for HIV transmission are unprotected anal and vaginal sexual intercourse. Oral-genital contact is considered a lower risk for HIV transmission. Refraining from sexual intercourse is the only sure way to prevent infection. Sex between partners who do not have HIV and who only have sex with one another is another way to practice safer sex. For people who do engage in vaginal sex with an HIV infected partner, using latex condoms treated with a spermicide such as nonoxinol-9, when used correctly and consistently, is another way to practice safer sex, although not as effective as the first two practices.
In the laboratory, latex condoms are very effective at blocking transmission of HIV because the pores in latex condoms are too small to allow the passage of the virus. Condoms have been shown to be effective barriers not only for HIV but also for herpes simplex, CMV, hepatitis B, chlamydia and gonorrhea. Out of the laboratory, condom effectiveness declines due to user failure more than product failure. Users may fail to:
1) use a condom with each act of sexual intercourse; 2) put the condom on before any genital contact occurs; 3) completely unroll the condom prior to putting it on; or 4) leave room for semen at the top of the condom. Using drugs or alcohol can also impair judgement about proper condom use. To ensure maximum condom efficacy the use of oil-based lubricants (petroleum jelly, shortening, lotions) that weaken latex should be avoided. Condoms should not be stored in direct heat or sunlight. Damaged packages or those that show obvious signs of age (brittle, sticky or discolored) should not be used.
Anal intercourse with someone who is HIV positive is a high-risk activity that accounts for many HIV infections among gay men. It is the transmission route, not someone's sexual preference that creates the risk. Anal intercourse between men and women is just as risky for HIV infection when one partner has the virus.
Anal intercourse with an HIV positive partner without the protection of latex condoms carries greater risk for HIV infection than other sexual acts because the walls of the anus and rectum are thin and supplied with numerous blood vessels, making it easy for rips or scratches during sexual penetration. Even when there are not any openings in the rectal lining, anal intercourse causes high risk for HIV infection because Langerhans cells, which have CD4 on their surface, are in the mucous lining and can be infected.
Unprotected vaginal intercourse with a partner is a high-risk activity for both men and women, accounting for the majority of HIV cases among women in the world. Risks for women to become infected with HIV from having vaginal sex with an infected male partner is greater than for men to become infected from a female partner although there is a substantial risk for both men and women who have unprotected vaginal intercourse with an HIV infected partner. Again, transmission of HIV into the blood stream or through mucous membranes via Langerhans cells account for the high risk of infection during vaginal intercourse.
Oral-genital contact has been and continues to be the most controversial HIV risk behavior. Most research suggests that oral-penile contact may carry a small risk for HIV infection but that this risk is substantially lower than anal or vaginal intercourse. In addition, although biologically feasible, there is little evidence that oral-vaginal sexual contact carries risk for HIV infection. It is impossible to know how many people have been infected with HIV from oral sex since people who engage in oral sex often also have vaginal or anal sex with their partners. Researchers have tried to examine the risk for HIV infection from oral sex by studying the past sexual behaviors of people who have been infected. These studies have shown that far fewer people have been infected from oral sex alone than from anal or vaginal intercourse. However, sexual contact that involves taking vaginal fluids or semen into the mouth or contact between saliva and the genitals must be considered to have some risk for HIV infection because there have been a small number of people who apparently became infected through oral sex.
Since HIV is transmitted primarily through sexual contact and/or sharing of drug paraphernalia, encouraging protective behaviors is important for HIV prevention. There is no evidence that HIV can be transmitted through casual contacts, including hugging, kissing, or touching a person who is HIV infected.
Perinatal HIV can occur during labor and delivery when a newborn is exposed to a mother's HIV infected blood. A high percentage of children born to HIV positive mothers will test HIV positive at birth due to the presence of their mothers' antibodies. Within six months, however, as the children develop their own antibodies, the percentage of children with HIV infection is usually around 30%. In 1992, when AZT was determined to be an effective treatment for pregnant women, the rate of HIV infection in babies born to mothers who had received AZT treatment during pregnancy dropped to 8%. Breast milk is another transmission route for HIV infection and mothers who are HIV positive are advised not to nurse.
Transfusions with HIV infected blood or blood products or organ transplants are the most dangerous situations for HIV infection because mass quantities of virus are exposed directly to the blood. Effective screening programs have now removed the risk of getting HIV from blood transfusions in most countries of the world. Screening blood and blood products for HIV antibodies has made new infections from blood transfusions or blood products extremely rare.
Following blood handling safety guidelines has reduced the risk of HIV infection from needlesticks and exposure to patients' blood for health workers. While it is possible for an HIV positive health worker to transmit HIV to a patient, almost no cases have been documented. Scientists are studying genetic factors that in some long-term survivors may be protective against the progression of HIV disease to AIDS.
Suggested Readings and References
Center for Disease Control and Prevention. (1989). Guidelines for prevention of transmission of human immunodeficiency virus and hepatitis B virus to health-care and public-safety workers: A response to Public Law 100-607, the health omnibus programs extension act of 1988. Morbidity and Mortality Weekly Report Supplement,38(S-6), 3-37. Retrieved from the World Wide Web: http://www.cdc.gov/epo/mmwr/preview/mmwrhtml/00001450.html
Center for Disease Control and Prevention.
(1988). Condoms for prevention of sexually transmitted diseases. Morbidity and
Mortality Weekly Report, 37, pp. 133-137. Retrieved from the World Wide Web: http://www.cdc.gov
Hardy, W. D. (1996). The human
immunodeficiency virus. Medical Clinicians of North America, 80 (6),
1239-1261.
Miner, K. (1998). The etiology and
epidemiology of HIV disease. In M. D. Knox & C. H. Sparks (Eds.), HIV and community
mental health (pp.19-36). Baltimore, MD: Johns Hopkins University Press.
U.S. Public Health Service Task Force
(1994). Recommendations of the U.S. Public Health Service Task Force on the Use of
Zidovudine to Reduce Perinatal Transmission of Human Immunodeficiency Virus. Mortality
and Morbidity Weekly Report, 43 (5), (RR-11). Retrieved from the World Wide
Web: http://www.cdcnac.org/nchstp/hiv_aids/pubs/mmwr.htm#1994
http://www.cdcnac.org/nchstp/hiv_aids/pubs/mmwr.htm#1994
Zhang, L., Huang, Y., Yuan, H., Chen, B.
K., Ip, J., & Ho, D. D. (1997). Genotypic and phenotypic characterization of long
terminal repeat sequences from long-term survivors of human immunodeficiency virus type 1
infection. Journal of Virology, 71 (7), 5608-5613.
Zhang, L., Huang, Y., Yuan, H., Tuttleton,
S., & Ho, D. D. (1997). Genetic characterization of vif, vpr, and vpu sequences from
long-term survivors of human immunodeficiency virus type 1 infection. Virology, 228
(2), 340-349.
Why Clinicians May be Reluctant to Discuss HIV Risks
HIV prevention requires the ability to talk
about sexuality and drugs in a non-judgmental way and to be able to handle the stigmatized
behaviors of groups of clients at high risk. Both clinicians and patients may have
difficulties in discussing such topics. Clinicians may wrongly assume that clients will
respond negatively if they open a conversation on these issues. Prevention work can be
improved by adding more education and training about counseling patients in both graduate
courses in psychology and in continuing medical education. Such training can go beyond
maintaining current knowledge about HIV and AIDS and focus on practical skills needed to
assess risks, counsel patients and make referrals. Innovative ways to help foster these
skills include simulated patient instructors or role-play and feedback on clinical
performance.
Clinicians need to be aware of the most
recent epidemiologic data on risks of HIV transmission, including risks that are not clear
cut such as risk of oral-penile sex without condoms, anal intercourse with condoms, and
the risk for oral-vaginal sex. Ambiguity regarding the appropriate content of the
prevention message is part of the challenge for clinicians. Uncertainties in areas such as
these can be an occasion for discussion with patients about their values, their
understanding of risk and how much risk they are willing to assume.
Suggested Readings and References
Lewis, C. E. (1990). Sexual practices: Are
physicians addressing the issues? Journal of General Internal Medicine, 5, S78-S81.
Vollmer, S., Wells, K., Blacker, K. H., et
al. (1998). Improving the preparation of preclinical students for taking sexual histories.
Academic Medicine, 8, 474-479.
Behavioral Theories Relevant to HIV Prevention
Theory is one of many tools that can have
an important influence on HIV prevention programs. Some of the most widely known theories
are presented below. These theories are not mutually exclusive but can work together to
guide effective programs.
The Health Belief Model proposes that an
individual's actions are based on his or her beliefs. It identifies key elements of
individual decision-making such as the person's perception of susceptibility, perceived
severity of the illness and the perceived barriers to prevention. Early studies, as well
as recent studies of HIV prevention, showed that using fear resulted in only short gains.
Interventions must be based on moderate fear messages with attention to other components
of the model.
The Theory of Reasoned Action posits
intention to act as a primary predictor of behavior. Intentions are a combination of
personal attitudes toward the behavior as well as the norms of peers, both heavily
influenced by the social milieu.
In Social Cognitive Theory, learning as a
social process is influenced by cognition and interactions with other people. The physical
and social environments are influential in reinforcing and shaping the beliefs that
determine behavior. A change in any of three components - behavior, physical, or social
environments - influences the other two. Skill training and the development of
self-efficacy, the belief that one is capable of performing a new behavior in the proposed
situation, are essential features of this theory.
The AIDS Risk Reduction Model suggests that
in order to change behavior, one must first label the behavior as risky, them make a
commitment to reduce the behavior and, finally, take action to perform a desired change.
Factors influencing movement between these stages include fear and anxiety and social
norms.
The Diffusion of Innovation model
illustrates how new ideas and behaviors are introduced and become accepted by a community.
Channels of diffusion, such as opinion leaders or peer educators, are studied as well as
the rates at which various groups of people adopt new behaviors and respond to different
channels of new information.
The Stages of Change theory posits five
stages of change: precontemplation, contemplation, preparation, action, and maintenance.
People do not necessarily pass through stages sequentially but may repeat stages as they
move from not being aware of an issue to adopting safer behaviors.
Harm reduction accepts that while harmful
behaviors exist, the main goal is to reduce their negative effects. Harm reduction
examines behaviors and attitudes of the individual to offer ways to decrease the negative
consequences of the targeted behavior
Paulo Friere's ideas on popular education
are based on the belief that teachers and students have different strengths and should
learn reciprocally from each other. Group discussions examine problems and develops
solutions to personally empower people to change their environment, thereby influencing
their subsequent actions.
Suggested Readings or References
Bandura, A. (1994). Social cognitive theory
and exercise of control over HIV infection. In R. J. DiClemente (Ed.), Preventing AIDS:
Theories and methods of behavioral interventions. New York, NY: Plenum Press.
Brettle, R. P. (1991). HIV and harm
reduction for injection drug users. AIDS, 5, 125-136.
Catania, J. A., Kegeles, S. M., &
Coates, T. J. (1990). Towards an understanding of risk behavior: An AIDS risk reduction
model. Health Education Quarterly, 17 (1), 53-72.
Fishbein, M. Middlestadtt, S.E. (1989).
Using the theory of reasoned action as a framework for understanding and changing
AIDS-related behaviors. In V.M. Mays, G.W. Albee & S.F. Schnieder, (Eds.) Primary
prevention of AIDS: Psychological approaches. Primary prevention of psychopathology (pp.
93-110). Newbury Park, CA: Sage Publications.
Glanz, K., Lewis, F. M. & Rimer, B.
(1997). Health Behavior and Health Education (2nd ed.). San Francisco, CA:
Jossey Bass.
Prochaska, J. O., DiClemente, C. C., &
Norcross, J. C. (1992). In search of how people change: Applications to addictive
behaviors. American Psychologist, 47 (9), 1102-1114.
Rogers, E. M. (1983). The diffusion of
innovations perspective (3rd ed.). In N.D. Wienstein (Ed.). Taking care: understanding
and encouraging self-protective behavior. (pp.79-94). New York, NY: Cambridge
University Press.
Rosenstock, I. M., Strecher, V. J., &
Becker, M. H. (1994). The health belief model and HIV risk behavior change. In R. J.
DiClemente, & J.L. Peterson (Eds.), Preventing AIDS: Theories and methods of
behavioral interventions. (pp. 5) New York, NY: Plenum Press.
Wallerstein, N. (1992). Powerlessness,
empowerment, and health: implications for health promotion programs. American Journal
of Health Promotion, 6 (3), 197-205.
The majority of the estimated 41,000 annual
new HIV infections in the United States occur among injection drug users (IDUs), their
sexual partners and their children (Holmberg, 1996). Studies have shown that 1) starting
HIV prevention when rates of HIV are still low; 2) providing sterile injecting equipment
through needle exchange programs and over-the-counter pharmacy sales; 3) conducting
community outreach to IDUs; and, 4) providing drug treatment on demand works in reducing
HIV transmission in these populations (Des Jarlais, 1995).
In Tacoma, Washington, where prevention
efforts for IDUs began in 1988, the prevalence of HIV among IDUs has remained steady at
3-4%. In New York City where prevention for IDUs met with early opposition, the rate of
HIV transmission increased from 10% to 50% in five years (Des Jarlais, 1995).
Connecticut implemented an ideal HIV
prevention program that cost the state nothing but was highly effective. A partial repeal
of needle prescription and drug paraphernalia laws resulted in dramatic reductions in
needle sharing from 52% to 31% and street purchases from 74% to 28%. Pharmacy purchase of
syringes by IDUs rose from 19% to 78% (Groseclose, 1995).
Gay and bisexual men account for the
majority of existing cases of HIV infections in the United States and 25% of new
infections annually (Holmberg, 1996). Rates may be increasing again due to false security
about the effectiveness of new treatments for HIV. Intervention strategies that work
include 1) small group counseling and skills training; 2) peer outreach; 3) counseling and
testing; 4) hotlines; 5) media programs; and, 6) community interventions.
One effective program in several
medium-sized towns trained the most popular people in social settings to deliver AIDS
risk-reduction messages to friends and acquaintances in gay bars. As a result, fewer gay
men practiced unprotected sex (Kelly, 1992).
Another successful program promoted a norm
for safer sex among young gay men through a variety of social, outreach and small group
activities such as dances, picnics, and volleyball games. As a result, rates of
unprotected intercourse dropped from 40% to 31% (Kegeles, 1996).
One fourth of all new HIV infections in the
United States occur in young people under the age of 22 years. For adolescents, effective
sex education programs in schools work to prevent HIV disease. Although much of the public
believes that teaching kids about sex will lead to promiscuity, in fact, the opposite is
true. A comprehensive review of 23 school-based programs found that teens who received
specific AIDS education were less likely to engage in sex and those who did were more
likely to have sex less often and to use contraception (Kirby, 1994).
Sex education is most effective when it is
begun before students have initiated sexual activity. A program in Oakland, California
used peer educators to teach seventh graders about sexuality and HIV/AIDS. After one year,
students in the program were less likely to initiate activities such as deep kissing,
genital touching and sexual intercourse (Ekstrand, 1996).
Suggested Readings and References
Des Jarlais, D. C., Hagan, H., Friedman, S.
R., et al. (1995). Maintaining low HIV seroprevalence in populations of injecting drug
users. Journal of the American Medical Association, 274 (15), 1226-1231.
Ekstrand, M. L., Siegel, D., Nido, V., et
al. (1996). Peer-led AIDS prevention delays initiation of sexual behaviors among US junior
high school students. Paper presented at 11th International Conference on AIDS, Vancouver,
BC.
Groseclose, S. L., Weinstein, B., Jones, T.
S., et al. (1995). Impact of increased legal access to needles and syringes on practices
of injecting-drug users and police officers-Connecticut, 1992-1993. Journal of Acquired
Immune Deficiency Syndromes, 10 (1), 82-89.
Holmberg, S. D. (1996). The estimated
prevalence and incidence of HIV in 96 large US metropolitan areas. American Journal of
Public Health, 86 (5), 642-654.
Kalichman, S. C. (1998). Preventing
AIDS: A Sourcebook for behavioral interventions. Mahwah, NJ: Lawrence Erlbaum
Publishing.
Kegeles, S. M., Hays, R. B., & Coates,
T. J. (1996). The Mpowerment project: a community-level HIV prevention intervention for
young gay and bisexual men. American Journal of Public Health, 86,
1129-1136.
Kelly, J. A. (1995). Changing HIV Risk
Behavior: Practical Strategies. New York, NY: Guilford Press.
Kelly, J. A., Murphy, D. A., Sikkema, K.,
& Kalichman, S. (1993). Psychological interventions to prevent HIV infection are
urgently needed: New priorities for behavioral research in the second decade of AIDS. American
Psychologist, 48(10) 1023-1034.
Kelly, J. A., St. Lawrence, J. S.,
Stevenson, L. Y., et al. (1992). Community AIDS/HIV risk reduction: the effects of
endorsements by popular people in three cities. American Journal of Public Health, 82
(11), 1483-1489.
Kirby, D., Short, L., Collins, J., et al.
(1994). School-based programs to reduce sexual risk behaviors: a review of effectiveness. Public
Health Reports, 109 (3), 339-360.
National Institutes of Health. (1997).
Consensus development conference on interventions to prevent HIV risk behaviors. Bethesda,
MD: NIMH, NIH Office of Medical Applications of Research.
Post HIV Exposure Prophylaxis (PEP)
Recently much has been learned about
treating HIV and understanding the progression of HIV disease. Protease inhibitors used in
combination with other HIV drugs have been extremely effective in reducing the levels of
HIV in the blood and restoring health to many patients. For HIV-uninfected persons who are
exposed to HIV, there may be a window of opportunity in the first few hours or days after
exposure in which these highly active drugs may prevent HIV infection.
A study of health care workers showed that
treatment with AZT after needlestick exposure to HIV-infected blood reduced the odds of
HIV infection by 81% (Katz et al. 1997). The study was not designed to test the efficacy
of AZT for post-exposure treatment and has some limitations. Following consultations, the
findings from this study and other data led CDC to recommend post-exposure prevention
(more commonly known as post-exposure treatment, post-exposure prophylaxis or PEP) for
some health care workers who are accidentally exposed to HIV-infected body fluids. Since
PEP is recommended for health care workers, it is only logical that PEP be considered for
people exposed to HIV through sex or injection drug use, especially since these are more
common sources of HIV infection.
There are no federal recommendations
governing PEP for sexual or injection drug use exposure although the CDC is currently
studying the matter. Many physicians and clinics across the country currently offer PEP in
widely varying forms. Most forms of PEP involve providing one or several anti-HIV drugs
within 72 hours of possible exposure. These drugs are then taken for a 4-6-week period.
Before PEP is implemented, a thorough risk
assessment should be conducted to determine a patient's level and frequency of
risk-taking, as well as the HIV status of the patient's partner. Patients should be
informed of the potential side effects and difficulty of taking the drugs and should be
assisted to develop strategies to successfully take the drugs as prescribed. Partner
notification and counseling can be part of a PEP program.
One of the potential advantages of PEP is
the opportunity to reach and counsel people at high risk for HIV. PEP programs should
include a behavioral counseling component to help patients develop skills for avoiding
future exposure to HIV and to deal with the fear of becoming infected. Referrals to HIV
prevention, substance abuse, medical, mental health and housing programs should also be
included to help patients address important risk factors.
One of the biggest fears about PEP is that
people will return to unsafe sexual and drug using practices if they believe that PEP will
prevent them from becoming infected. There is some evidence that treatment advances,
including PEP, may be leading to increasing incidence of unsafe sex in the United States.
For example, rates of gonorrhea among men who have sex with men have recently increased
for the first time since the early 1980s.
Another fear is that misuse of PEP drug
therapies may cause a person to develop a resistant strain of HIV. If PEP drug therapy is
unsuccessful and a person does develop a drug-resistant virus, the new anti-HIV drugs may
not be as effective for treating that person. This can occur not only with PEP, but also
with any combination therapy treatment.
Suggested Readings and References
Cardo, D. M., Culver, D. H., Ciesielski, C.
A., et al. (1997). A case-control study of HIV seroconversion in health care workers after
percutaneous exposure. New England Journal of Medicine, 337 (21), 1485-1490.
Deeks S. G., Smith M., Holodniy, M., et al.
(1997). HIV-1 protease inhibitors: a review for clinicians. Journal of the American
Medical Association, 277 (2), 145-153.
Dilley J. W., Woods W.J., & McFarland
W. (1997). Are advances in treatment changing views about high-risk sex? (letter). New
England Journal of Medicine, 337 (7), 501-502.
Katz M. H., & Gerberding J. L. (1997).
Post-exposure treatment of people exposed to the human immunodeficiency virus through
sexual contact or injection-drug use. New England Journal of Medicine, 336 (15),
1097-1100.
Zuger A. (1997, June 10). 'Morning after'
treatment for HIV. New York Times. Section C, p.1.
The potential for discrimination continues
to be a real threat, deterring some who might benefit from seeking HIV testing.
HIV-related discrimination has been reported in the form of denial of insurance, housing,
employment, and other private or public benefits. Although much progress has been made in
fighting discrimination it clearly has not been vanquished. The federal government
continues to deny HIV-positive individuals entry into the Peace Corps, the State
Department, the Job Corps or the U.S. military.
In some cases, the fear of a positive test
result and/or the social stigma around HIV testing keeps some people from seeking it. In
other cases, individuals who are tested for HIV antibodies do not return for their
results. Approximately 37% of people who were tested at publicly funded clinics in 1990
did not return for their results.
Fears about discrimination and breaches of
confidentiality must be kept in mind when devising systems for testing and screening. To
overcome barriers, HIV testing should be made available on a voluntary basis in a wide
range of settings. Anonymous testing currently available at alternative test sites will
continue to be attractive to many people who may be at risk or who need reassurance. Other
people may feel more comfortable being tested by their physicians or even at home.
Suggested Readings and References
Kalichman, S. C. (1995). Understanding
AIDS: A guide for mental health professionals. Washington, DC: American Psychological
Association.
HIV antibody testing is now among the most
accurate diagnostic tools in medicine. Blood collected for HIV testing is first analyzed
by an enzyme-linked immunosorbent assay (ELISA) that tests for antibodies to HIV. ELISA
tests are done first because they are sensitive to HIV antibodies. If an ELISA test is
negative it is very unlikely that the person is HIV infected. However, positive ELISA
tests must be repeated because the procedure is not specific to HIV antibodies. For this
reason, ELISA tests are used to screen blood samples for HIV antibodies. After a blood
specimen receives a repeated positive ELISA, the test is confirmed using a Western blot
procedure. Like ELISA, Western Blot detects HIV antibodies, but Western Blot is highly
specific because it determines the exact antigens toward which antibodies are directed. A
positive Western Blot result means detection of antibodies produced specifically against
HIV. Thus, both a positive repeated ELISA screening test and a positive Western Blot
confirmatory test are required for diagnosis of HIV infection.
The Immunofluorescent Assay is an antibody
test that can be used as a confirmatory test. Both infected and uninfected cells are
examined on a slide under a fluorescent microscope. HIV positive cells become stained when
anti-HIV antibodies are present in a patient's blood sample. Uninfected cells show a
slight reaction or no reaction at all. The process takes less than an hour and, therefore,
is faster than the Western Blot. It has been proven to be as specific and as sensitive as
the Western Blot if it is used by laboratory personnel that are experienced and well
trained. However, it is not as widely available as the Western Blot.
In spring 1996, the U.S. Food and Drug
Administration (FDA) approved the first HIV test that can be administered at home. The
first home HIV testing systems are actually methods for collecting blood specimens that
are then sent to a lab for analysis. The diagnostic functions of the test are essentially
the same as those obtained through clinic-based testing.
Actually, "home testing" is a
little misleading since customers do not get on-the-spot results, the way they do with
home test kits for glucose, cholesterol, blood pressure or pregnancy. The tests are really
at-home "collection kits" to be purchased over the counter or through the mail.
A test kit purchaser pricks his/her finger, puts a drop of blood on a piece of blotter
paper, sends it off in the mail, then phones for results and counseling after a specified
time. The home test is an easy way for people to find out if they're HIV infected since it
eliminates a trip to a doctor or clinic, getting blood drawn, then returning some days
later for results and counseling. It also makes testing accessible for people who live in
rural areas, or inner cities where clinics are scarce, too busy, or a long bus ride away.
Home-access testing for HIV met with
virtually unanimous opposition when it was first proposed in the late 1980s. Today, CDC,
leading clinicians, gay activists and AIDS advocates have all endorsed home access testing
There is still a concern about the adequacy of post-test counseling. At a doctor's office
or clinic, test results are usually delivered in person. If a patient feels overwhelmed,
or even suicidal, an expert is there to help. Companies selling home test kits may make
counselors available but they are still delivering support from a distance by telephone.
As one critic of home testing put it, "a 1-800 number can't hug you when you're
crying." Yet for some people, the remoteness and anonymity afforded by telephone
counseling makes it easier to reveal painful feelings or embarrassing information. There
is a long tradition of telephone counseling in crisis intervention and suicide prevention.
Offering this alternative testing option is
a step toward solving the national problem of inadequate HIV testing. Approximately 60% of
people at risk have not been tested for HIV. As treatments improve, HIV test results
become more and more important since people can begin drug therapy to bolster their immune
systems and stave off opportunistic infections. Pregnant women who are HIV positive are
encouraged to get voluntary HIV tests since studies show that treatment during pregnancy
with zidovudine (AZT) can reduce the rate of maternal/fetal transmission of HIV by
two-thirds, although long-term effects on both mother and child have yet to be determined.
Other new testing technologies include
rapid tests. A rapid test for detecting antibody to HIV is a screening test that produces
very quick results, usually in 5 to 30 minutes. The only rapid HIV test licensed by the
Food and Drug Administration (FDA) for use in the United States by 1998, was the Single
use Diagnostic System for HIV-1 (SUDS), manufactured by Murex. It is now possible to get
the results of the Elisa test during the same visit that a patient’s blood is drawn.
Since for this test, false positives occur in 20% of the cases, the drawback is that
initial results may increase individuals' distress until a second more conclusive test can
be done. Tests for HIV antibodies in saliva are available, again increasing the ease and
therefore access of testing. Until now, testing required two visits. During the first
visit, a client received pretest counseling and blood was drawn for HIV testing. During
the second visit, test results were communicated to the client, additional counseling was
provided, and clients who neededreferrals for additional services were directed to such
services.
Suggested Readings and References
Berrios, D. C., Hearst, N., Coates, T. J.,
et al. (1993). HIV antibody testing among those at risk for infection. Journal of the
American Medical Association, 270 (13), 1576-1580.
Center for Disease Control and Prevention.
(1998). Rapid HIV Tests: Questions/Answers.
Conner, E. M., Sperling, R. S., Gelber, R.,
et al. (1994). Reduction of maternal-infant transmission of human immunodeficiency virus
type 1 with zidovudine treatment. New England Journal of Medicine, 331 (18),
1173-1180.
Food and Drug Administration (FDA)/PHS/HHS.
(1995). Home specimen collection kit systems intended for human immunodeficiency virus
(HIV-1 and/or HIV-2) antibody testing; revisions to previous guidance. Federal Register,
60, 10087.
Grimes, W. J., Chambers, L., & Narro,
M. (1996). The ELISA Test. Immunology and AIDS: A Laboratory Exercise Produced at the
University of Arizona. Retrieved from the World Wide Web:
http://www.blc.arizona.edu/aids/elisa.html
Hirano, D., Gellert, G. A., Fleming, K., et
al. (1994). Anonymous HIV testing: the impact of availability on demand in Arizona. American
Journal of Public Health, 84 (12), 2008-2010.
Kassler, W. J., Dillon, B. A., Haley, C.,
Jones, W. K., & Goldman, A. (1997). On-site, rapid HIV testing with same-day results
and counseling. AIDS, 11, (8), 1045-1050.
Kegeles, S. M., Coates, T. J., Lo, B., et
al. (1989). Mandatory reporting of HIV testing would deter men from being tested [letter].
Journal of the American Medical Association, 261, 1276.
Koop, C. E. (1994, June 22). Testimony.
Washington, DC: FDA Blood Products Advisory Committee.
Kuun, E., Brashaw, M., & Heyns, A. D.
(1997). Sensitivity and specificity of standard and rapid HIV-antibody tests evaluated by
seroconversion and non-seroconversion low-titre panels. Vox-Sang, 72 (1), 11-15.
Leary, W. E. (1994, June 23). Government
panel hears call for expanded AIDS testing. New York Times, p. A18.
Ocamb, K. (1994, June/July). Home HIV
testing is near. POZ, 48-52. (quoting Dennis Ouellet, LA Free Clinic).
Spielberg, F., & Kassler, W. J. (1996).
Rapid testing for HIV antibody: a technology whose time has come. Annals of Internal
Medicine, 125, (6), 509-511.
Psychosocial Issues Related to HIV Counseling and
Testing
Privacy issues in HIV antibody testing are
handled either through confidential or anonymous testing procedures. Confidential HIV
counseling and testing is similar to other medical tests where names and other personal
information about the person being tested are obtained and kept in confidential clinical
records.
In anonymous testing, a person receives a
code number that is linked to their blood sample. Individuals can receive their test
results and post-test counseling when they present their code number back to the testing
site. With anonymous testing, an individual's name cannot be reported to health officials
and the individual cannot be recontacted should they not return for their test results.
HIV testing is an extremely sensitive
issue. In most settings, pre- and post-test counseling are required as accompaniments to
testing in order to allay clients anxieties and educate clients about the meaning of a
positive test. Since for many people this is the only HIV/AIDS counseling they will get,
testing represents an important opportunity for preventive education for clients for the
future and for preventing transmission to other people.
Many clients from racial and ethnic
minority groups, as well as women, may be more comfortable receiving early intervention
services, including HIV testing, at clinics that are culturally sensitive. These clinics
may need to have multilingual staff members available for clients whose preferred language
is not English. In addition, they may need to take into account other cross-cultural
factors: a cultural group's failure to perceive its members at risk , cultural stereotypes
about drug users or homosexuality, and/or discomfort with Western health care.
Social stigmas toward women in general,
especially toward sexually active, unmarried women, pregnant women and commercial sex
workers, often are a barrier to meeting women's needs for early intervention. Race and
class as well as perceptions that some women are not at risk, can influence physicians'
assessment of women's risk for HIV infection and subsequent recommendations for testing in
ways that prevent some groups of women from receiving early care.
Decisions to get tested for HIV are not
unlike decisions to seek other medical diagnostic testing. For example, genetic screening
for Huntington's chorea and other diseases causes significant stress related to the
implications of learning that one has a chronic, progressively debilitating, and life
threatening illness. Positive reasons to get tested include gaining opportunities for
early intervention and avoiding transmitting the cause of the disease to others, including
future children.
Meredith and Bathon (1997) describe some of
the issues surrounding reproductive decisions that may significantly complicate a woman's
decision to get tested and her reaction to testing HIV-positive. Women may experience
great psychological conflict over the consequences of transmitting the virus to their
children or partners versus meeting biological and needs for self esteem as well as
meeting sociocultural expectations related to having children. Women may also experience
considerable distress over how they will be able to balance the demands of motherhood with
their own need for care as they become more ill. The choice of medical provider is
important since some providers may react negatively to an HIV-positive woman's pregnancy
and fail to give her adequate support for deciding to have a child.
Suggested Readings and References
Baba, T. W., Sampson. J. E., Fratzzi, C.,
Greene, M. F., & Rupercht, R. M. (1993). Maternal transmission of the human
immunodeficiency virus: can it be prevented? Journal of Women's Health, 2
(3) 231-242.
Bartlett, J. G. (1997). The Johns
Hopkins Hospital 1997 guide to medical care of patients with HIV infection (7th ed.).
Baltimore, MD: William's & Wilkins.
DeVita, V., Hellman, S., & Rosenberg,
S. A. (1997). AIDS: etiology, diagnosis, and prevention. Philadelphia, PA:
Lippincott-Raven.
Forstein, M. (1994). Psychotherapy with gay
male couples: loving in the time of AIDS. In S. A. Cadwell, R. A. Burnham, Jr. & M.
Forstein (Eds.), Therapies on the front line: psychotherapy with gay men in the age of
AIDS (pp. 293-315). Washington, DC: American Psychiatric Press.
Jacobsen, P., Perry, S., & Hirsch, D.
A. (1990). Behavioral and psychological responses to HIV antibody testing. Journal of
Consulting and Clinical Psychology, 58 (1) 31-37.
Kalichman, S. C. (1995). Understanding
AIDS: A guide for mental health professionals. Washington, DC: American Psychological
Association.
Lynch, A. A., & Palacias-Jimenez, L.
(1993). Progression of an illness: the life course of AIDS. Clinical Social Work
Journal, 21 (3), 301-317.
Nimmons, D., & Meyer, I. (1996). Oral
sex and HIV risk among gay men. Unpublished manuscipt.
Rosenberg, Z. F., & Fauci, A. S.
(1991). Immunopathology and pathogenesis of human immunodeficiency virus infection. Pediatric
Infectious Disease Journal, 10 (3), 230-238.
Saag, M. S. (1992). AIDS testing: now and
in the future. In M. A. Sande & P. A. Volberding, The medical management of AIDS,
(3rd ed., pp. 33-53). Philadelphia, PA: W.B. Saunders.
Schoub, B. D. (1994). AIDS & HIV in
perspective: A guide to understanding the virus and its consequences. New York:
Cambridge University Press.
Winiarski, M. (Ed.). (1997). HIV mental
health for the 21st century. New York, NY: New York University Press.
Counseling Issues Associated with HIV
Testing
The decision to get tested involves four
main counseling tasks: (1) helping clients overcome any ambivalence regarding taking the
test; (2) reviewing options with clients and the consequences of receiving a positive or
negative test result; (3) supporting clients while they wait for results by discussing and
validating their fears; and (4) preparing clients for the results of the test.
Acute distress in response to a positive
HIV antibody test is nearly universal. People may experience many reactive psychological
symptoms including depression, anxiety, and preoccupation with illness. These symptoms
often take the form of transient and situational adjustment disorders. However, it is
often observed that depression and other aspects of the initial shock of learning one is
HIV infected decline over the first few weeks of adjustment. Emotional problems can remain
relatively absent during the asymptomatic phases of HIV disease.
People have a wide range of reactions to
the receipt of positive results, including:
• numbness accompanied by an inability
to take in the news that they are positive;
• an immediate rational acceptance of
their positive status without any exploration of possible emotional reactions;
• intense fatalism, a belief that they
have only a short time left to live. Despite knowledge of promising new drug treatments,
these people often hold onto the belief that the treatments will not work for them;
• guilt and remorse for past
behaviors; Lynch & Palacios-Jimenez (1993) observed that many of their clients began
taking inventory to determine what they did to deserve AIDS. This often results in
feelings of self-blame as well as intense anger directed at the people believed to be
responsible for transmission;
• people may receive a positive test
result and go into denial for years until they become symptomatic;
• suicidal ideation. Rabkin, Remien
& Wilson (1994) note that although many people believe they might choose suicide at
some future point, when severe physical problems develop, they often discover new
strengths and renegotiate the circumstances in which they would end their lives; and,
• hopefulness regarding new treatment
options such as protease inhibitors.
The tasks of psychologists working with
patients who have recently received a positive diagnosis include:
• being alert to explicit and implicit
messages that patients receive along with their results that patients may internalize,
especially when they have received results with limited post-test counseling;
• helping patients adjust to the
multiple tasks they immediately face upon testing positive such as forming a medical team,
making treatment decisions, and disclosing their status;
• finding developmentally appropriate
messages to convey information about HIV disease and to dispel fears, particularly in
young patients;
• helping patients' understand and
manage their emotional reactions to testing positive and to manage their symptoms.
Counselors may use a crisis counseling model. Some patients may need psychotropic
medications;
• assessing patients' support networks
and making referrals to community resources when necessary; and,
• managing the balance between a duty
to protect confidentiality and a duty to warn HIV-positive clients' partners in the rare
circumstance when a client's refusal to tell a partner of his/her HIV-positive status
leaves the partner at risk.
Psychosocial Issues Over the Spectrum of HIV Disease
Specific events that occur over the course
of infection carry individual meaning and impact on mental health: receiving an HIV
positive test result, making a decision to initiate treatments, declining CD4 cell counts
and/or increasing viral load, recognizing the onset of HIV-related symptoms, developing
opportunistic illnesses and receiving an AIDS diagnosis, and being hospitalized for the
first time all serve as AID-related events that can be psychologically devastating.
Acute distress in response to a positive
HIV antibody test is nearly universal. However, peoples' depression and other aspects of
the initial shock of learning they are HIV positive generally decline over the first few
weeks of adjustment. Emotional problems can remain relatively absent during the
asymptomatic phases of HIV disease.
Some issues may weigh heavily on
HIV-positive people after they first test positive. The most common are decisions
regarding medical treatment and decisions regarding disclosure. Issues related to the
management of chronic illness are generally more salient to HIV-positive people when they
become symptomatic. Other issues, such as those related to the inability to care for
oneself, become important as HIV-positive people reach the advanced stages of their
illness.
Suggested Readings and Reference
Griffin, K. W., & Rabkin, J. G. (1997).
Psychological distress in people with HIV/AIDS: prevelance rates and methodological
issues. AIDS and Behavior, 1 (1) 29-42.
Jacobson, P. B., Perry, S. W., &
Hirsch, D. A. (1990). Behavioral and psychological responses to HIV antibody testing. Journal
of Counseling and Clinical Psychology, 58 (1), 31-37
Kelly, J., Murphy, D., Bahr, G., Kalichman,
S., Morgan, M., Stevenson, L., Koob, J., Brasfield, T., & Bernstein, B. (1993).
Outcome of cognitive-behavioral and support group brief therapies for depressed persons
diagnosed with HIV infection. American Journal of Psychiatry, 150 (11),
1679-1686.
Perry, S. W., Jacobsberg, L. B., Card, C.
A., & Ashman, T. (1993). Severity of psychiatric symptoms of after HIV testing. American
Journal of Psychiatry, 150 (5), 775-779.
Perry S. W., Jacobsberg, L. B., Fishman,
B., Frances, A. Bobo, J., & Jacobsberg, B. K. (1990). Psychiatric diagnosis before
serological testing for human immunodeficiency virus. American Journal of Psychiatry,
147 (1), 696-710.
Psychosocial Issues Related to Disclosing HIV Status
Disclosure of HIV status to others is often
an emotionally charged subject. Rabkin, Remien, and Wilson (1994) describe two extreme
responses - the desire to withdraw and isolate, refusing to tell anyone and the opposite,
to "tell the world" - neither of which is adaptive. Factors that will affect the
decision to disclose or not disclose include:
• the potential for prejudice and
stigma
• the possibility of having the
integrity of one's sexual relationships called into question or of losing a relationship
• the potential of being labeled an
unfit parent
• vulnerability to violence,
particularly for women who wish to disclose to their partner
• reactions from family and the fear
of hurting parents
• shame (particularly for members of
some cultural communities)
• loss of friendships
• loss of health insurance
• fear of employer's reactions
For some HIV-positive people, disclosure of
one's sero-status may necessitate subsequent disclosures. This is particularly the case
when a gay man or lesbian tests positive and is not open about his or her sexual identity.
Injecting drug users may also face the need to make a similar secondary disclosure. In
some cases, acknowledgment of drug use may open the way to obtaining needed chemical
dependency services. In other circumstances, when the user has been in recovery, there may
be people in his or her life who have no knowledge of past drug use and who may react
negatively when it is presented in conjunction with the disclosure of being HIV-positive.
Rabkin, Remien, and Wilson (1994) maintain
that the counseling situation is an excellent place to explore the pros and cons of
disclosure. Psychologists can help patients discuss whom to tell first, second, etc.; the
best way to tell (i.e., in person, by letter, by phone), and the optimal time to tell.
They suggest that role playing can help facilitate the disclosure process and reduce
anxiety.
Suggested Readings and References
Griffin, K. W., & Rabkin, J. G. (1997).
Psychological distress in people with HIV/AIDS: prevelance rates and methodological
issues. AIDS and Behavior, 1 (1), 29-42.
Rabkin, J., Remien, R., & Wilson, C.
(1994). Good doctors, good patients: partners in HIV treatment. New York, NY: NCM
Publishers, Inc.
Psychological Issues Related to Treatment Decisions
Beginning medical treatment often confronts
people with a deeper acknowledgment of their HIV-infected status. Healthy denial
mechanisms and hopefulness may weaken, leaving clients vulnerable to bouts of fear and
anxiety.
The advent of new antiretrovirals and drug
combination treatment in 1996 revised many physicians and patients approaches to
treatment. Early reports of improved and longer lives resulted in widespread optimism.
However, Winiarski (1997) maintains that the new therapies offer great uncertainties in
exchange for hope: prospects of continued improvement can be shattered overnight with side
effects, drop-offs in efficacy, and unforeseen consequences.
Winiarski (1997) notes five psychosocial
repercussion of new combination therapies:
• Many people may be (or are being)
excluded from access to these therapies. At a cost of close to $15,000 per year it is
questionable whether insurance companies and other payors (e.g., Medicaid) will pay or
will continue to pay for treatment.
• Adherence to the new regimens can be
extremely difficult. Combination therapies require many pills be taken on a strict
schedule coordinated with meal and fasting times. Poor compliance with directions may
increase the possibilities of viral mutations and lead to drug-resistant strains of HIV.
• People who in the past have been
unable to take medications consistently, such as individuals who are severely mentally
disabled, are chemically dependent, or have mental retardation, may be excluded from
available therapies (see G. Rotello, The risk in a "cure" for AIDS, July 1996,
New York Times, sec. 4, 17).
• The side effects of these drugs may
preclude some people from taking them.
• The long-term effects of these
treatments is undetermined.
In their study of long-term survivors,
Rabkin, Remien, and Wilson (1994) describe the characteristics of the "good" HIV
patient including:
• Takes responsibility for and charge
of his or her health
• Acknowledges that HIV illness has an
uncertain course and makes plans based on a variety of contingencies
• Is informed about the natural
history of HIV disease and keeps current about changing treatment recommendations.
• Observes and reports symptoms to the
physician promptly
• Considers the physician a
trustworthy working partner with whom he or she is honest and open.
• Complies with agreed on treatment
regimens
• Keeps track of prescriptions and
understands their purpose
• Utilizes medical appointments
efficiently by preparing a list of concerns and questions
• Accepts, and seeks, help when
necessary
• Devotes sufficient time to medical
care
An important goal of psychotherapy is to
help patients learn how to become good consumers of treatment. Psychologists can encourage
patients to assert their right to know as much as possible about any proposed course of
action. Patients who find this difficult may need interventions to help them develop
assertiveness skills.
Some clients turn to alternative treatments
which may not have the same reliability and rigorous testing that pharmaceutical drugs
receive. It is always prudent to let primary health care providers know about all
treatments so as to prevent harmful drug interactions.
Suggested Readings and References
Rabkin, J., Remien, R., & Wilson, C.
(1994). Good doctors, good patients: partners in HIV treatment. New York, NY: NCM
Publishers, Inc.
Rotello, G., (1996, July,14). The risk in a
"cure" for AIDS. The New York Times, 4, 17.
Winiarski, M .G. (Ed.). (1997). HIV
mental health for the 21st century. New York, NY: New York University Press.
Psychosocial Issues Related to the Management of
Chronic Illness
The onset of HIV-related symptoms to
clients signals the progression of HIV disease and can cause considerable stress.
Similarly, anniversaries for testing HIV-positive, declines in CD4 cell counts, rising
viral loads, hospitalizations, and deaths of other people with AIDS all raise fears and
concerns that can cause stress and treatment failures.
For many clients, the consequences of
closely monitoring their CD4 cell count and viral load is an endless alternation between
fear and relief and despair. Listening to the attributions clients make about the changes
in these measures is important in understanding their thought processes.
Pain management is a central part of coping
with HIV. Clients often feel lost when confronted with physical pain and may need help
remembering that the subjective nature of pain does not make it less legitimate. At the
same time, clients may have to realize that there are limitations to their physicians'
ability to mitigate pain.
Clients' adherence to treatment regimens is
critical since the advent of complex treatment with protease inhibitor drugs that require
constant attention through each day.
Psychologists working with HIV-positive
patients will need to employ a broad range of professional skills. Eversole (1997)
maintains that the psychologist at times will be a counselor, an educator, and a case
manager. He writes that while the practitioner does not need to discontinue therapy in
order to facilitate case management tasks (e.g., helping a patient negotiate the welfare
system), continued therapy might not be possible if such tasks are not performed.
Suggested Readings and References
Eversole, T. (1997). Psychotherapy and
counseling: bending the frame. In M. G. Winiarski (Ed.), HIV mental health for the 21st
century (pp. 23-38). New York, NY: New York University Press.
Markowitz, J. C., Rabkin, J. G., &
Perry, S.W. (1994). Treating depression in HIV-positive patients. AIDS, 8
(4), 403-412.
O'Connor, M. F., & Yalom, I. D. (Eds.).
(1997). Treating the psychological consequences of HIV. San Francisco, CA:
Jossey-Bass Publishers.
Winiarski, M. G. (Ed.). (1997). HIV
mental health for the 21st century. New York, NY: New York University Press.
Psychosocial Issues Related to HIV/AIDS Stigma
HIV infection is a highly stigmatizing
disease. Stigmas refer to a visible mark used to distance, shame, condemn, or socially
ostracize a person. Stigmas, therefore, communicate social disapproval. HIV infection is
stigmatizing because it is difficult to conceal as the disease progresses, is disruptive
to the person’s life and relationships and can cause physical disfigurement as part
of its degenerative course.
AIDS-related stigmas result in
discrimination, prejudice, and isolation. Social stigmas are a major factor in limiting
social support and assistance for coping with HIV. AIDS-related stigmatization is
complicated by other socially stigmatizing characteristics of the groups most afflicted by
the epidemic. Homosexuality, drug abuse, poverty, and minority group membership are all
characteristics that carried significant social adversities prior to the HIV epidemic and
have now become associated with HIV/AIDS.
Social stigmas are a source of chronic
stress for people living with HIV and AIDS. Victim blame is common because people often
contract the virus through behaviors that are socially sanctioned. Also, people infected
with HIV can internalize blame, believing that they "should" have known better
and should have taken precautionary steps against getting infected.
A serious outcome of social stigmatization
experienced by people with HIV is their reluctance to disclose their HIV status to others.
Fears of being ostracized, isolated, and abandoned creates a shroud of secrecy around
having HIV. An inability to disclose being HIV positive to others limits the resources and
supports that are available to a person living with HIV.
Acts of discrimination against people with
HIV/AIDS are frequent. People have been denied services, residence, and employment because
they are HIV infected. Although laws that protect people against discrimination exist in
many areas, these problems still persist.
According to Cadwell (1994), support groups
and group psychotherapy can be vital forums for addressing stigmatization. Group
facilitators can help members to identify the social function of stigmatization, examine
their own internalized stigma, and experience the catharsis of their pain and shame. These
groups also provide HIV positive people with a empowering sense of belonging.
Counseling can help HIV-positive clients
cope with job-related discrimination. We can assist them in distinguishing between
realistic paranoia (fact based) and exaggerated paranoia (fear based) with regards to
discrimination.
Suggested Readings and References:
Cadwell, R. A. (1994). Twice removed: the
stigma suffered by gay men with AIDS. In S. A. Cadwell, Burnham, Jr. & M. Forestein
(Eds.), Therapists on the front line: Psychotherapy with gay men in the age of AIDS (pp.
3-24). Washington, DC: American Psychiatric Association.
Herek, G. M. (1990). Illness, stigma and
AIDS. In P. T. Costa & G. R. VandenBos (Eds.), Psychological aspects of serious
illness: Chronic conditions, fatal diseases and clinical care: Master Lectures (pp.
107-150). Washington, DC: American Psychological Association.
Psychosocial Issues
Related to Death and Dying
Many people with HIV fear dying, in
particular, the anticipation of a painful or lengthy death. This is particularly the case
when they have seen friends, lovers or colleagues die with a lot of pain or dementia from
AIDS-related causes.
Walker (1991) and McKusick (1992) identify
a number of challenges facing HIV-positive people close to death:
• They must work to find
self-acceptance
• They must make clear their wishes
for final medical treatment
• They must attempt to deal with and
hopefully heal rifts with family and friends
• They must find ways to say goodbye
and yield to death
Those close to the dying person must also
prepare for his or her death. Doing so often involves working to accept the person as he
or she is. In addition, they must come to accept the person's wishes for medical care, as
well as any wishes related to activities after his or her death. Support groups like
Mothers of AIDS Patients (which also welcomes fathers and siblings) or other AIDS service
agencies may be very effective in helping family members feel less isolated with their
experiences.
Suggested Readings and References
Eversole, T. (1997). Psychotherapy and
counseling: Bending the frame. In M. G. Winiarski (Ed.), HIV mental health for the 21st
century (pp. 23-38). New York, NY: New York University Press.
Rabkin, J., Remien, R., & Wilson, C.
(1994). Good doctors, good patients: partners in HIV treatment. New York, NY: NCM
Publishers, Inc.
Winiarski, M. G. (1991). AIDS-related
psychotherapy. New York, NY: Pergamon Press.
Key Points about Coping and Adjustment to Living
with HIV or AIDS
HIV infection often brings a sense of
meaning to people. It is common for people to gain a new appreciation for small pleasures
in life and a capacity for ignoring minor hassles. A sense of meaning among people with
HIV is often achieved through efforts to live each day to its fullest.
People have to decide where HIV fits in
with other life concerns. Goal-setting is important because living with HIV is
characterized by pervasive uncertainty about the future, clients need help in reframing
their planning processes. They need to feel entitled to set goals and focus on quality
rather than quantity of life. Spirituality and religion are important in helping many
people cope, especially in communities of color. A fine line often exists between denial
and hope. Even outlandish plans for the future keep people alive. Clients cross the line
between healthy and unhealthy denial when health maintenance is compromised.
Planning for the future should include a
will; a living will; and, when applicable, provisions for their children's welfare. It
should also include planning for possible retirement from work and permanent disability
status. Attention to disability insurance and the potential of receiving funds from life
insurance policies are important.
Many of the coping responses that are
observed in other life threatening illnesses are also observed among people coping and
adjusting to HIV infection. Taylor's Cognitive Adaptation Model, for example, that was
developed from research with women facing breast cancer can help explain adjustment to HIV
infection. Coping resources such as self-esteem, deriving meaning from illness, and
maintaining a sense of control over one's destiny offer means of adjustment.
People living with HIV/AIDS may use a
full range of coping strategies that include emotion-focused copies strategies that
improve how a person feels without addressing the problem and problem-focused coping
strategies that target the source of stress. Coping responses that offer immediate and
tangible outcomes have significant benefits to people who view their time as limited.
Examples of problem-focused coping strategies include action-oriented responses such as
seeking medical care, enrolling in clinical treatment trials, seeking social support,
making healthy changes in one's lifestyle, becoming socially and politically active, and
seeking information. Emotion focused coping strategies consist of cognitive and behavioral
actions that do not directly intervene with the problem but do enhance personal
adjustment. Examples of emotion focused coping include denial of the condition, avoidance
and escape from stressors, distractions away from the problem, and reappraising a
situation as a positive outcome.
Denial can be a necessary and beneficial
means of coping. However, denial that persists for extended periods of time can delay the
onset of medical intervention and may, therefore, have deleterious health effects.
Substance use can also be a means of escape and avoidance. The use of alcohol and drugs to
cope with HIV infection is likely to be prominent among people who already have a history
of substance abuse.
Anxiety symptoms and disorders are often
diagnosed in people living with HIV and AIDS. Much of the anxiety of HIV infection can
stem from the uncertainties of HIV disease progression. People living with HIV rarely know
what to expect and often maintain a vigilant watch for symptoms and evidence of immune
system decline.
Suggested Readings and References
Chesney, M. A., & Folkman, S. (1994).
Psychological impact of HIV disease and implications for interventions. Psychiatric
Clinics of North America, 17 (1), 163-182.
Folkman, S., Chesney, M.A., Pollack, L.,
& Phillips, C. (1992). Stress, coping and high-risk sexual behavior. Health
Psychology, 11 (4), 218-222.
Taylor, S.E. (1983). Adjustment to
threatening events: A theory of cognitive adaptation. American Psychologist, 38
(11), 1161-1173.
Social support theories distinguish between
three basic types of support that appear most important for people with chronic illnesses:
informational, emotional, and tangible. Informational support helps people stay grounded
in the realities of their condition. Emotional support is offered through affection and
empathy. Both informational and emotional support have been shown to reduce the distress
of having a chronic illness, including HIV/AIDS. Tangible support is also important for
people with HIV/AIDS, particularly at the later stages of disease, when they need help
with meals, house keeping, shopping, transportation, and other tasks of daily life.
Supportive relationships with consistent
contact is important. Family, friends, partners, and providers offer different types of
support. Lacking a close friend or confidant, as well as feeling lonely and isolated, are
strong predictors of suicide potential among people with HIV infection. Social support,
therefore, plays a particularly important role in protecting HIV positive persons rom
inclinationsto end their lives. Because having AIDS is still very highly stigmatized,
counselors can help clients realize the many harmful beliefs they may have internalized.
Because of stigma, fear, and anger, HIV positive clients often find themselves rejected by
family and friends. When clients raise issues of being abandoned, the counselor is also
being implicitly questioned about his or her attitudes. Because many people with HIV
suffer loss of human contact because of ignorance and stigma, sometimes appropriate
physical touch can send a message of acceptance and support.
Suggested Readings and References
Catania, J. A., Turner, H. A., Choi, K.,
& Coates, T. J. (1992). Coping with death anxiety: Help-seeking and social support
among gay men with various HIV diagnoses. AIDS, 6 (9), 999-1005.
Green, G. (1993). Editorial review: Social
support and HIV. AIDS Care, 5 (1), 87-104.
Hayes, R. B., Turners, H., & Coates, T.
J. (1992). Social support, AIDS-related symptoms, and depression among gay men. Journal
of Consulting and Clinical Psychology, 60 (3), 463-469.
Lazarus, R. S., & Folkman, S. (1984). Stress,
appraisal and coping. New York: Springer.
Factors Affecting the Quality of Life
Counseling can be extremely useful in
helping HIV-positive clients discover ways to reduce stress. Clients' feelings of stress
and frustration need validation, particularly since they may already feel unentitled to
express their feelings and are afraid that others think they complain too much. Creating
an HIV-free zone, where for awhile clients and their family and friends can forget about
HIV and AIDS can be an effective stress reducer. Exercise can also be important as a way
to reduce stress.
Proper nutrition is also important in
living healthier. Issues related to food and eating (e.g., the effects of weight loss on
self-esteem, preoccupation with food safety) frequently get brought into counseling. An
alliance with a good nutritionist may be important in effectively working with
HIV-positive clients.
Suggested Readings and References
Rabkin, J. G., Williams, J. B., Neugebauer,
R., Remien, R., & Goetz, R. (1990). Maintenance of hope in HIV-spectrum homosexual
men. American Journal of Psychiatry, 147 (10), 1322-1326.
Wachtel, T., Piette, J., Mor, V., Stein,
M., Fleishman, J., & Carpenter, C. (1992). Quality of life in persons with human
immunodeficiency virus infection: measurement by the medical outcomes study instrument. Annals
of Internal Medicine, 116 (2), 129-137.
Disability due to AIDS and Returning to Work
When people leave work on disability they
gain time and energy that can be used to boost their immune systems and engage in other
life pursuits. At the same time, stopping work is another recognition that HIV has
encroached upon their life. People who are strongly tied to their careers for
self-identity may experience profound despair upon taking disability leave.
Many people rely on employers as their sole
source of health insurance. Thus, for many clients, work-related issues become intricately
intertwined with issues of health care.
Some non-citizens do migrant work or day
labor and receive no health insurance, benefits and disability. For them, not working may
not be an option. Hiding their HIV status may be crucial and working paramount, even when
it means destroying their health.
The Americans with Disabilities Act (ADA)
requires employers to make reasonable accommodations to a work environment or in the way
things are customarily done for disabled workers. These accommodations must permit a
person with HIV or AIDS to apply for a job, perform essential functions of a job, gain
access to a work site, and enjoy equal privileges and benefits of employment.
With the success of new drug treatments,
many people who were previously considered disabled are now considering returning to work.
These decisions are complex, often involving weighing the emotional benefits of work
against the loss of benefits. Additionally, many people with financial and medical
disabilities who have been on long-tern disability for a period of years are uncertain how
to explain such gaps in their work history to potential employers.
People who had once battled their way to
access disability benefits may suddenly consider re-employment, returning to school,
career changes, and other life redefining decisions. Returning to work is often considered
the landmark for successful HIV treatment. People with AIDS are now seeking help with
resume writing, career options, and job interviewing skills.
As new treatments have become available,
persons living with HIV/AIDS have revitalized hope for managing HIV infection and have
experienced profound changes in their quality of life. People are now living healthier and
longer lives. However, the side-effects of potent anti-HIV treatments still may reduce the
quality of life for persons taking them.
Suggested Readings and References
Folkman, S., Chesney, M., Pollack, L.,
& Phillips, C. (1992). Stress, coping and high-risk sexual behavior. Health
Psychology, 11(4), 218-222.
Murphy, G. (1995). Returning to work:
making decisions about employment, benefits and health insurance. New York, NY: MTS.
Rabkin, J. G., & Ferrando, S. (1997). A
"second life" agenda: Psychiatric research issues raised by protease inhibitor
treatments for people with human immunodeficiency virus or the acquired immunodeficiency
syndrome. Archives of General Psychiatry, 54, 1049-1053.
Zavos, M. A. (1992). Americans with
disabilities act: business responds to AIDS. In Centers for Disease Control and
Prevention, Labor Leaders and Managers Kit. Contact 1-800-458-5231.
The study of psychological-behavioral
interactions with human immune functioning is called psychoneuroimmunology. Researchers in
this area strive to understand the complex associations between stress, coping, and
resistance to disease.
Psychoneuroimmunology has shown that stress
can increase susceptibility to illness by reducing resistances of the immune system. The
immune system is known to react to stress by becoming suppressed. Chronic stress may,
therefore, increase a person's vulnerability to infections and other illnesses.
Despite the established relationships
between environmental stressors, emotional reactions, and immune system responses, there
is little evidence that stress has an adverse effect on the progression of HIV. Similarly,
there is little evidence that coping and stress reduction extend a person's survival time
with HIV. Several studies (LaPerriere et al 1990; Solomon et al, 1991) of the effects of
exercise and stress management have shown that such activities may have positive effects
on the functioning of the immune systems of men living with HIV/AIDS
Suggested Readings and References
LaPerriere, A., Schneiderman, N., Antoni,
M.H., & Fletcher, M.A. (1990). Aerobic exercise training and psychoneuroimmunology in
AIDS research. In L. Temoshok & A. Baum, Psychological perspectives on AIDS:
Etiology, prevention, and treatment (pp. 259-286). Hillsdale, NJ: Erlbaum.
Solomon, Freeman, G., Kemeny, M.E., &
Temoshok, L. (1991). Psychoneuroimmunologic aspects of human immunodeficiency virus
infection. In R. Ader, D. L. Felten & N. Cohen (Eds.), Psychoneuroimmunology II
(pp. 1081-1113). Orlando, FL: Academic Press, Inc.
Psychological and Neuropsychological Assessment
Diagnosing Depression and Anxiety
Depressive reactions to HIV disease are
often related to a sense of hopelessness about the future and a lack of perceived and
actual control over the course of one's life. Depression has been documented in virtually
every subpopulation in the HIV epidemic. However, in most cases, depression in people with
HIV occurs at subclinical levels. While it is common for people with HIV to experience
varying degrees of depression, major depression is rarely diagnosed.
Assessing and diagnosing depression in
people with HIV is complicated by the overlapping symptoms of HIV disease and depression.
Somatic symptoms of depression, including anorexia, insomnia, forgetfulness, somatic
distress, lethargy, and night sweats, can all mimic constitutional symptoms of HIV
infection. Overlapping symptoms can cause inflated scores on depression inventories and
diagnostic systems.
Anxiety reactions to HIV infection can
cause somatization responses, where persons misinterpret innocuous bodily reactions as
signs of advancing HIV disease. These symptoms can appear as transient hypochondriasis, a
subclinical form of hypochondriasis, characterized by multiple diffuse somatic complaints
without apparent medical cause.
Assessing psychological and emotional
disturbances in persons with HIV infection is complicated by overlapping symptoms and dual
diagnoses. HIV related symptoms, such as weight loss, fatigue, cognitive slowing, and
lethargy overlap with symptoms of depression. Somatic symptoms of depression and symptoms
of HIV-related illness are often difficult to distinguish, which can lead to
over-diagnosing depression.
When assessing clients, characteristics of
HIV disease should be taken into consideration and a diagnosis made after considering
overlapping symptoms of other illnesses, side effects of medication, and symptoms of
psychological distress. For example, symptoms often associated with anxiety or depression
such as problems concentrating and making decisions, difficulties in social or
occupational functioning, negative changes in physical appearance, fatigue, loss of
appetite, declining sexual interest, and excessive weight loss, can also be associated
with HIV infection. The most common symptoms of depression among people with AIDS are
sleep disturbances and loss of appetite; a serious issue in clinical assessment due to the
overlap of neuronegative signs of depression and HIV symptomology.
Assessing depression in people with HIV can
be improved by focusing on cognitive and affective symptoms rather than somatic symptoms
of depression. One method of assessment is to use separate scales for measuring cognitive
and somatic symptoms. For example, Beck and Steer (1993) provide cognitive and somatic
sub-scales for the Beck Depression Inventory.
Another alternative is to use instruments
developed for medical populations that experience similar problems of symptom overlap. For
example, the Hospital Anxiety and Depression Scale was developed to avoid physical symptom
overlap in medical illnesses and may be useful in assessing people with HIV/AIDS (Zigmond
& Snaith, 1983).
The same problems occur with the assessment
of anxiety. Both the Trait Anxiety Inventory (Speilberger, Gorusch & Lushene, 1970)
and the Hamilton Rating Scale for Anxiety include items that reflect fatigue, cognitive
confusion, gastrointestinal distress and fatigue, all of which may be symptoms of
progressing HIV infection.
In a 1993 article, Kertszner (Kertzner et
al, 1993) found that modifying standardized instruments to be more specific to
psychological distress, can limit their potential clinical usefulness since it invalidates
the norm and the scores of item subsets have unknown psychometric properties. Many
clinicians pursue an alternative strategy by conducting a content of analysis of scales.
This has become common when clinicians use psychometric tests and has become essential in
the evaluation of HIV positive clients.
Using tests that do not include physical
symptoms such as a benchmark for depression and anxiety can reduce the potential problems
of disease-distress symptom overlap.
Risks of suicide need to be taken into
consideration in the clinical assessment. Over the course of the HIV infection,
motivations to attempt suicide differ. Therefore it is important to perform periodic
assessments of suicidal ideation in the clinical assessment of HIV-positive client.
Suggested Readings and References
Kalichman, S. C. (1995). Understanding
AIDS: A guide for mental health professionals. Washington, DC: American Psychological
Association.
Kalichman, S. C., Sikkema, K., &
Somlai, A. (1995). Assessing persons with Human Immunodeficiency Virus (HIV) infection
using the Beck Depression Inventory: Disease processes and other potential confounds. Journal
of Personality Assessment, 65(1), 86-100.
Rabkin, J., Remien, R., & Wilson, C.
(1994). Good doctors, good patients: partners in HIV treatment. New York, NY: NCM
Publishers, Inc.
Spielbereger, C. D., Gorusch, R. L., &
Lushene, R. (1970). The state-trait anxiety inventory manual. Palo Alto, CA:
Consulting Psychologists Press.
Individual Psychotherapy
Individual psychotherapy has been
demonstrated effective for HIV seropositive men. In a randomized clinical study, Markowitz
et al. (1995) compared interpersonal therapy with a time-contact matched supportive
therapy control group. Results showed that after 16 weeks of treatment, individuals who
received interpersonal therapy demonstrated less emotional distress than individuals
assigned to the control condition. Despite the fact that this study only included
assessment in mid-course of treatment and immediate post-treatment assessments, it is
among the very few controlled studies that demonstrate the efficacy of individual
psychotherapy for people living with HIV/AIDS.Individual psychotherapy has been
demonstrated effective for HIV seropositive men. In a randomized clinical study, Markowitz
et al. (1995) compared interpersonal therapy with a time-contact matched supportive
therapy control group. Results showed that after 16 weeks of treatment, individuals who
received interpersonal therapy demonstrated less emotional distress than individuals
assigned to the control condition. Despite the fact that this study only included
assessment in mid-course of treatment and immediate post-treatment assessments, it is
among the very few controlled studies that demonstrate the efficacy of individual
psychotherapy for people living with HIV/AIDS.
Winiarski (1991) maintains that no single, unbending therapeutic frame can serve
the HIV-positive client's changing needs through the course of illness. Immediately after
diagnosis, the client may require crisis intervention, and family intervention. Through
early and mid-stages of the disease, the patient may benefit from attention to
pre-existing problems and to the redefinition of goals to reflect meaning. Toward the end
of life, existential themes may be explored in combination with case management and
assistance in obtaining services.
Case management issues usually have
components that are appropriately addressed in the context of individual psychotherapy.
For example, a client may lack the social skills or the emotional stability to
successfully negotiate the social service system.
Individual psychotherapists are often in a
good position to teach safer sex techniques and the negotiation of safer sex. While some
psychotherapists may be unaccustomed to talking explicitly about sex with clients from
diverse sexual orientations, psychotherapy with persons with HIV often involves prevention
work that requires therapists to be prepared to talk openly and freely about sex with
their clients.
Neurological symptoms can arise from
multiple causes and differential diagnosis is only possible through careful neurological
examinations that usually include radiological studies, such as CAT scans and MRIs.
Neuropsychological assessment of people with HIV has emerged as an important area of
service and research. Several batteries have been proposed for assessing people at varying
stages of HIV infection for cognitive impairment, some comprehensive and others
abbreviated.
Since many people who are HIV—positive
fear losing their mental faculties, counseling for anxiety about the potential development
of neurological symptoms is important in order to let patients know what to expect and to
reassure them that neurological impairment is not inevitable. Neuropsychological
rehabilitation has been shown beneficial for many people suffering HIV-related
neurological impairment and impairment caused by opportunistic illnesses.
Suggested Readings and References
Bono, G., Mauri, M. Sinforiani, E., &
Barbarini, G. (1996). Longitudinal neuropsychological evaluation of HIV-infected
intravenous drug users. Addiction, 91(2), 263-268.
Bornstein, R. A., Pace, P., Rosenberger,
P., Nasrallah, H., Para, M., Whitacre, C., & Fass, R. (1993). Depression and
neuropsychological performance in asymptomatic HIV infection. American Journal of
Psychiatry, 150 (6), 922-927.
Butters, N. Grant, I., Haxby, J., Judd, L.
L., et al. (1990). Assessment of AIDS-related cognitive changes: recommendations of the
NIMH workshop of neuropsychological assessment approaches. Journal of Clinical and
Experimental Neuropsychology, 12 (6), 963-978.
Eversole, T. (1997). Psychotherapy and
counseling: bending the frame. In M. G. Winiarski (Ed.), HIV mental health for the 21st
century. New York, NY: New York University Press.
Mapou, R. L, & Law, W. A. (1994).
Neurobehavioral aspects of HIV disease and AIDS: an update. Professional Psychology:
Research and Practice, 25 (2), 132-140.
Markowitz, J. C., Klerman, G. L.,
Clougherty, K. F., Spielman, L. A., Jacobsberg, L. B., Fishman, B., Frances, A. J.,
Kocsis, J. H., & Perry, S. W. (1995). Individual psychotherapies for depressed
HIV-positive patients. American Journal of Psychiatry, 152 (10), 1504-1509.
Winiarski, M. G. (1991). AIDS-related
psychotherapy. Elmsford, NY: Pergamon Press.
Some evidence suggests that people with HIV
infection and AIDS can benefit from group therapy. Group therapy encompasses similar
features as support groups, including disseminating information and fostering supportive
relationships, but it goes beyond the group experience by focusing on therapeutic
techniques. HIV-related group therapy has been based on models designed for other chronic
illnesses. S. H. Levine et al. (1991), for example, described a psychotherapy group that
treated six clients with symptomatic HIV infection. The primary focus of the group was
supportive psychotherapy, but it included providing accurate HIV-related information,
instruction in adaptive coping strategies, and working through losses and anticipatory
grief. Levine et al. stated that the treatment was centered around a supportive atmosphere
that reduced HIV-related fears, addressed relationship issues, and built social supports.
Like other evaluations of group therapies, Levine et al. found that clients in the group
experienced less emotional distress as a result of being in the group.
Kelly et al. (1993) conducted a randomized
clinical trial that compared a cognitive and behavioral coping skills group intervention
for men living with HIV to a supportive therapy group. Both treatments were conducted for
10 weeks, both were led by mental health professionals, and both were compared to
individual counseling on demand. Results of this study showed that both group
interventions were superior to the counseling on demand condition in reducing emotional
distress experienced by men living with HIV. The supportive therapy group demonstrated
lower levels of distress than the coping group, whereas the coping group increased its use
of adaptive coping behaviors.
Inner-city African-American, Latino,
Haitian, and Caribbean families with HIV/AIDS are often overwhelmed by the losses and the
demands of what has become a multi-generational family disease. These families have a
particular need to feel a greater sense of mastery over their lives. Counselors need to
remember the distinction between "empowerment" in which family members are given
the tools to create interventions themselves and "helping" in which social
service staff do something for the family.
The assessment of family beliefs and
attitudes about HIV/AIDS is a major part of determining approaches to mental health care
delivery and in determining the specific issues to be addressed in family therapy. The
family therapist must assess the following:
How does the family feel about HIV/AIDS? Is
it considered a shameful secret or medical disease?
Who in the family and the extended family
has been told the diagnosis?
How supportive are family members? Is one
family member over functioning and carrying the burden alone?
How do family members feel about the
treatment plan? Do they feel it is invasive or helpful?
How much is understood about treatment and
what will happen in the course of the illness?
How well do family members the different
family members communicate with one another? Is their own support system intact?
Suggested Readings and References
Boyd-Franklin, N., Aleman, J.C., Steiner,
G.L., Drelich, E.W., & Norford, B.C. (1995). Family systems interventions and family
therapy. In N. Boyd-Franklin, G. Steiner & M. Boland (Eds.), Children, Families,
and HIV/AIDS: Psychosocial and Therapeutic Issues. New York, NY: Guilford Press.
Kelly, J. A., Murphy, D. A., Bahr, G. R.,
Kalichman, S. C., Morgan, M. G., Stevenson, L. Y., Koob, J .J., Brasfield, T. L., &
Bernstein, B. M. (1993). Outcome of cognitive-behavioral and support group brief therapies
for depressed, HIV-infected persons. American Journal of Psychiatry, 150
(11), 1679-1686.
Levine, S. H., Bystritsky, A., Baron, D.,
& Jones, L. D. (1991). Group psychotherapy for HIV-seropositive patients with major
depression. American Journal of Psychotherapy, 45 (3) 413-424.
Special Populations and HIV/AIDS
The HIV community is a cross-section of
numerous diverse cultures. Winiarski (1997) describes four such cultures:
1) The drug use culture, including the
culture of drug abstinence. Both cultures have their own idioms, hierarchies, and belief
systems, for example, twelve-step programs.
2) People from various racial and ethnic
cultures.
3) People from cultures based on geography:
urban, rural, suburban, for example. Even within New York City, there are cultural
differences among neighborhoods.
4) Cultures based on sexual preference.
From the outset, HIV primarily affected
members of minority groups who were considered outcasts and who were stigmatized by
members of the majority culture even before the epidemic. In his chapter on cross-cultural
mental health care, Winiarski (1997) makes the following assertions:
It is a mistake to assume that because a
person has certain cultural/ethnic characteristics, he or she strongly identifies with
that culture.
A time-worn clinical practice anecdote is:
if there is an elephant in the room, the therapist and the client should acknowledge it. A
difference in culture/ethnicity between therapist and client is an "elephant".
When working with a client from another
culture, the mental health provider must make a commitment to learning about that culture.
With a client from another culture, a
mental health provider should take a "Will you teach me?" stance.
Acknowledge cultural-based expressions of
spirituality.
Winiarski (1997) notes that HIV-positive
people who come from culturally diverse communities may have culturally influenced ways of
experiencing the exterior world and interpreting their inner experience. They may also
have different perceptions regarding power and control over their life and of oppression.
In addition, even when people are born into a specific ethnic group, their degree of
acculturation may result in a cultural identity that may range from complete
identification with the ethnic group to complete rejection of that culture.
When providing services to members of
culturally diverse communities, psychologists may need to take into account (1) how the
culture handles stigmatization; (2) the culture's traditional health methods; (3) the
culture's views of counseling or therapy; and, (4) the culture's view of the role of the
psychologist.
Suggested Readings and References
Winiarski, M. G. (Ed.) (1997). HIV
mental health for the 21st century. New York, NY: New York University Press.
Winiarski, M. G. (1997). Cross-cultural
mental health care. In M. G. Winiarski. (Ed.), HIV mental health for the 21st century.
New York, NY: New York University Press.
Sexual coercion places many women at risk.
In a study of unmarried Latina women across the United States, 20% reported a history of
sexual abuse or rape. Public health agencies need to raise public awareness about sexual
coercion and help women and men develop the skills needed to prevent it.
Injection drug use among women has not been
studied adequately. Most drug treatment programs are staffed by men and oriented towards
male clients. Allowing pregnant women to enroll in drug treatment, and allowing women to
bring children with them would be helpful. Treatment programs sensitive to women,
especially African-American and Latina women, are an urgent necessity.
For women to protect themselves from HIV
infection, they must rely on their own skills, attitudes, and behaviors regarding condom
use as well as their ability to convince their partner to use a condom. Gender, culture
and power may be barriers to maintaining safer sex practices with a primary partner. HIV
prevention strategies must target both women and men in heterosexual couples and address
gender norms in sexual decision-making.
Many minority women living in poverty are
disproportionately affected by HIV. For these women the struggle for daily survival may
take precedence over concerns about HIV infection, whose impact may not be seen for
several years.
Women are more likely to protect themselves
from pregnancy using methods that