Mental illness and AIDS.

Previously, people with mental illness have been overlooked in the AIDS epidemic. Yet, despite long-held stereotypes, adults with mental illness--particularly those individuals who are homeless, have problems with drug and alcohol abuse, or lack the motivation to change self-defeating behaviors--are sexually active and engage in a range of sexual behaviors that put them at high risk for HIV (Cates, Bond, & Graham, 1994; Sacks, Silberstein, Weiler, & Perry, 1990). Recent surveys show that persons with mental illness are one of the groups most imminently threatened by AIDS.

National data are not available; however, since 1991 eight reports on HIV seroprevalence among people with serious mental illness in New York indicate rates ranging from 4.0 percent to as high as 22.9 percent (Satriano, Herman, Kaplan, & Cournos, 1994). One study, for instance, reports an infection rate of 19 percent for homeless, mentally ill men in a New York City shelter. This is almost twice the rate reported for men of a similar age in a representative community sample in central Harlem--an epicenter of AIDS (Susser, Valencia, & Torres, 1994).

For individuals who have been mentally ill since childhood or adolescence, normative psychosexual development may have been arrested so that they cannot maintain normal social and sexual relationships (Carmen & Brady, 1990). Sexual behaviors that place these individuals at high risk include: frequent anonymous sex, generalized hypersexuality, tendency toward multiple sex partners, and decreased likelihood of using contraceptives, including condoms (Akhtar & Thomson, 1980; Cournos, Guido, Coomaraswamy, Meyer-Bahlburg, Sugden, & Horwath, 1994; Sacks, Dermatis, Burton, Hull, & Perry, 1994; Susser, et al., 1994).

Furthermore, there is a large crossover population of people with mental illness who are either homeless, are drug or alcohol abusers, or are poor, any of which results in the exchange of sex for drugs. Because of their impulsivity, hallucinations, lack of social skills, difficulty initiating contact or maintaining personal relationships, and problems with sexual aggression, these people are more at risk for AIDS than the general population (Brenda, 1991; Carmen & Brady, 1990; Susser, et al., 1994).

Factors that put individuals with mental illness at significantly higher risk for acquiring the HIV virus include:

* Homelessness. Homeless persons generally demonstrate inadequate relationship skills. In particular, women who are homeless are at risk of rape, sexual molestation, and sexual abuse, thus increasing their risks of being infected with the AIDS virus (Brenda, 1991). Many homeless men have histories of intravenous (IV) drug use and prison or jail experiences (Susser, et al., 1994).

* Homosexuality or bisexuality. This group of individuals with mental illness is not generally integrated into the gay community through which they could get access to education about AIDS (Carmen & Brady, 1990).

* Childhood sexual abuse. As part of the post-traumatic sequelae of such abuse, these people have low self-esteem and have been repeatedly victimized or engage in sexually promiscuous, impulsive, and dangerous behaviors (Carmen & Brady, 1990; Carmen & Rieker, 1989).

* Dual diagnosis with co-occurring morbidities of substance abuse. Regier and associates (1990) estimate that 30 percent of individuals with a lifetime prevalence of major mental illness have a co-occurring substance abuse disorder. Even if these persons do not directly inject drugs, the intoxicated state is frequently associated with poor judgement about sexual behavior (Carmen & Brady, 1990; Sacks, et al., 1994). For instance, the results from a survey of individuals with mental illness and chemical abuse (Hanson, Kramer, Gross, Quintana, Li, & Asher, 1992) reveal that 40 percent of these clients had multiple sex partners; 38 percent engaged in unprotected oral sex; 28 percent had sex with drug users; 22 percent had sex with prostitutes; 16 percent engaged in anal sex; and 12 percent traded sex for drugs.

Need for Services

It is not surprising to find that people with mental illness lack the knowledge to choose low-risk behaviors. Of the 50 clients that Hanson and associates sampled (1992), 56 percent did not know that individuals infected with HIV may not look sick; 48 percent did not know how to clean their needles and syringes to reduce AIDS transmission; 70 percent believed that latex and natural condoms provide equal protection from the virus; 32 percent thought that Vaseline and baby oil are good to use with condoms (this may cause breakage); and 64 percent thought that a condom should fit tightly over the head of the penis (instead of leaving space at the tip). Furthermore, Aruffo, Cloverdale, Chacko, and Dworking (1990) found that despite a significant history of IV drug abuse, only 53 percent of female psychiatric outpatients (the majority of whom were sexually active) knew that condoms help prevent AIDS. Findings from these studies suggest the need for both basic HIV prevention information and intensive training.

Education about risk is fundamental to AIDS prevention efforts but by itself is usually insufficient to produce and sustain behavior change. Evaluations of AIDS-related behavior-change programs are consistent in their findings: the most effective prevention programs are tailored to the risk populations and their particular characteristics (Stover & Pequegnat, 1994).

Sometimes, characteristics of the specific mental illness, such as cognitive impairment, poor judgement, affective instability, and impulsivity, engender the behaviors that put these persons at risk (Aruffo, et al., 1990; Carmen & Brady, 1990; Hanson, et al., 1992; Harvey & Trivelli, 1990). For example, persons in acute manic episodes are often hypersexual; whereas individuals in depressed stages may be sexually inactive and need a very different treatment approach (Carmen and Brady, 1990).

The following characteristics associated with long-term or chronic mental illness support the need for modified HIV education:

* People with mental illness may experience greater than normal stress related to rejection, making decisions, or being alone (Miller & Miller, 1991).

* Long-term mental illness may cause difficulties in understanding reality, following complex directions, abstract thinking, decision making, solving simple problems, taking responsibility, and interpersonal processes (Aruffo et al., 1990).

* People with long-term mental illness may have problems initiating and completing tasks due to cognitive difficulties or as a result of psychotropic medications (Region V Study Group, 1991).

* Chronic mental illness, including schizophrenia, may include sexual dysfunctions, such as sexual fears, hallucinations, delusion, and wishes (Akhtar & Thomson, 1980).

AIDS prevention education specifically designed to meet the particular needs of persons diagnosed with mental illness has been minimal. Generally, AIDS education programs have focused largely on the general public and specific groups, such as gay men and IV drug users. Only a few projects have attempted to provide to individuals with mental illness information about sexuality, reducing high risk behaviors, or methods of handling the psychiatric symptoms and stresses that accompany the HIV virus or AIDS (Harvey & Trivelli, 1990).

The myths perpetuated by staff and institutions about the sexual behaviors of persons with mental illness may be one reason for the very low level of educational activity within this population. These myths include beliefs that persons with mental disabilities are oversexed, undersexed, or lack control; have diminished congitive capacity to understand sexual behavior; are unable to use contraceptives; and are unable to be parents (Cook, Razzano, Jayaraj, Myers, Nathanson, Scott, & Stein, 1994). Others have expressed concern that discussing sex and drugs with people with mental illness may encourage sexual disinhibition and alcohol and drug use (Satriano, et al., 1994). As a result, there has been a lack of consensus regarding the need for sex or sexuality education and an absence of HIV prevention guidelines for this population (Harvey & Trivelli, 1990).

The AIDS prevention initiatives that have been targeted for individuals with mental illness refute assumptions that these persons are incapable of understanding or changing sexual behaviors. For example, Goisman, Kent, Montgomery, Cheevers, and Goldfinger (1991) presented HIV prevention materials in a clear, succinct, and repetitive manner with audiovisual aids to 50 schizophrenic outpatients. The information was given in three 1-hour sessions, 1 week apart. Initially, the clients who were at considerable risk of AIDS demonstrated denial of substance abuse and significant gaps in knowledge about AIDS. However, 50 percent of the patients were asking for condoms and for more information 6 months following the course. The researchers recommended expanding their program to include education on sexual refusal assertion skills.

Type of Needed Prevention Activities (primary education)

There is a strong need for both primary (preventive) and secondary (management of psychiatric symptoms) AIDS education for people with severe and persistent chronic mental illness across the country. "In the absence of vaccines or treatments that can prevent or cure AIDS, new infections can only be prevented by persuading people to lower or eliminate behaviors that put them at risk of receiving or transmitting the virus" (Stover & Pequegnat, 1994, p. 3).

Virtually all patients with mental illness may have heard about AIDS and are afraid of catching it; however, they do not have accurate information about the disease, or the information they do have is in a form that they cannot use (Carmen & Brady, 1990). In a survey of 265 outpatients, Zafrani and McLaughlin (1990) identified 56 who were most at risk of contracting AIDS, based upon sexual and/or drug activities. These outpatients scored lower than other patients in knowledge of AIDS. Similarly, Sacks and associates (1990) indicated that 56 percent of persons in high risk groups were relatively unconcerned about becoming infected.

Education efforts should focus not only on the provision of information on the risks and consequences of AIDS, but also on a change in behaviors (Harvey & Trivelli, 1990). For example, in a study of 83 people with mental illness receiving partial hospitalization services, knowledge of HIV/AIDS was weakly correlated with frequency of at risk behaviors (Steiner, Lussier, & Rosenblatt, 1992). Since AIDS is a behaviorally transmitted disease, there is a need to encourage new behaviors that will reduce transmission.

The experience of rehabilitation providers and mental health care professionals indicates that systematic plans for instruction, motivation, and followup are necessary in order to adequately reduce risk to this population (Carmen & Brady, 1990; Kelly, 1991; Stover & Pequegnat, 1994).

For persons with long-term mental illness or dual diagnosis, HIV prevention materials are needed that include assertiveness training, group problem solving, conflict management training, training in ways to manage high risk situations, and explicit instruction in correct condom use (Hanson, et al., 1992). These needs go far beyond the typical HIV prevention information campaigns that are being undertaken currently (Carmen & Brady, 1990; Kelly, 1991).

Behavioral change to reduce risk of AIDS is a slow and complex process even within a healthy population (Carmen & Brady, 1990). For patients with mental illness, impulsivity, and severe disturbance of self-esteem may prevent compliance. However, there is evidence that low risk behaviors can be adopted to replace high risk behaviors after exposure to AIDS prevention (Carmen & Brady, 1990; Kelly, St. Lawrence, Hood, & Brasfield, 1989).

A three-step process has been shown effective in changing behaviors around the world among IV drug users (Des Jarlais & Friedman, 1988). The three principles of social learning--motivation, means of behavior change, and a means of reinforcement--can also serve as a framework for an AIDS prevention program for persons who are mentally ill.

First, HIV prevention programs should increase motivation to avoid high risk behaviors (Harvey & Trivelli, 1990). Developing motivation begins with an accurate assessment of individual risks. The practical importance of accurate AIDS information is that it allows individuals to assess their own personal risk and allows those with high risk behaviors the opportunity to label such activity as problematic (Morin, 1988). These individuals then can change their behavior by themselves or seek the help of others in charge.

Second, providing the means for behavior change, such as clean needles for IV drug users or availability of free condoms, is critical. Low risk behaviors must be taught that can replace the high risk behaviors. Certainly, such practical skills as learning how to use a condom are very useful (Carmen & Brady, 1990). However, the central goal of all AIDS education programs is to teach people with mental disabilities how to establish realistic and sound attitudes about sexual relationships and personal activities and how to maintain a responsible sexual lifestyle that protects health and well-being (Harvey & Trivelli, 1990). To do this, it may be necessary to teach assertiveness and reasoning, decisionmaking, relationship, and negotiating skills (Harvey & Trivelli, 1990). In addition, there should be discussions of HIV testing that include indications for and consequences of such testing.

Third, these programs should reward behavior change by providing group or peer support for reduced risk conduct, assertiveness training, and reinforcement of alternatives to current high risk activities. These techniques have proven effective with other programs that change behaviors to prevent morbidity, such as weight reduction and cigarette cessation.

Part of the reinforcement for new behaviors which reduce the risk of AIDS may come from the decrease in the individual's fear that he/she will acquire the HIV infection. Reinforcement may also come from changed peer group standards or norms about the behavior. Des Jarlais & Friedman (1988) report that the strongest correlate of behavior change in the individual was whether that individual believed his or her friends all to be changing their behavior in response to AIDS. This suggests that educating peer groups together could be useful.

Staff Education

It may be necessary to educate staff at the same time as or before clients enter an AIDS prevention program. There are several reasons for making this suggestion:

* Staff may blame patients for their high risk behavior or they may have incorrect assumptions about their capability to learn new materials, thus providing a significant institutional barrier.

* Staff themselves may need education concerning AIDS. It has been shown that an increase in knowledge about AIDS helped reduce healthcare workers' reported stress, perceived risks, and negative attitudes (Weinstein, 1990). Knowledge of many aspects of the lives of persons with HIV disease may also help alleviate fears associated with the treatment of homosexuals and IV drug users and may facilitate a higher level of comfort for those working with HIV infected patients (Alford, Aruffo, Thompson, Dobbins, & Gottlieb, 1994; Duffy, 1994).

* Staff are needed to help identify client characteristics, needs, and scope of the educational program (Harvey & Trivelli, 1990).

It should be noted also that occupational stress among mental health workers is traditionally high (Jette, 1982). The negative effects of stress for the mental health staff can lead to less humane attitudes towards clients. Research demonstrates that the emotional stability and interpersonal behavior of caregivers can be critical in developing and maintaining an adequate recovery by psychiatrically impaired individuals (Baker, Kazarian, Helmes, Ruckman, & Tower, 1987). These findings indicate the importance of stress management education for mental health staff.

Programs to Support HIV Individuals and Prevent Spread of AIDS (secondary

education)

The AIDS virus may have its own distinctive psychiatric manifestations. The mental health problems resulting from AIDS-related central nervous system damage may include organic mental syndromes, mood disorders, and suicide (Hurley & Ungvarski, 1994; Penner, 1994). The early organic mental changes may be subtle and can occur without concurrent systemic manifestation. These disorders manifest themselves through a variety of symptoms and do not progress at any predictable rate. Emotional, behavioral, or personality changes may be erroneously attributed to functional disorders and to the impact of living with an incurable, stigmatizing, and ultimately fatal infection rather than to central nervous system damage. Any of the organic mental syndromes can interfere with a patient's understanding and compliance with treatment. Recommended treatment strategies include psychoeducation, psychosocial support, assessment of suicidal risk, and pharmacotherapy (Aladjem, 1988).

Persons with mental illness who are HIV positive or have AIDS need supportive counseling, not only to educate them about the means to prevent the transmission of AIDS, but also to assure that they are able to handle the psychological manifestations and stresses of the illness. Behaviors primarily responsible for the transmission of HIV involve sex and drug use--activities that are strongly motivated, often well established, and highly reinforcing. For instance, the individual may be "using sexual relationships to validate his attractiveness and to relieve temporarily moments of despair that were worsened by alcohol" (Kelly, 1991). It is imperative, therefore, that HIV management involve the following components:

* intensive review of the specific circumstances surrounding recent occasions when risky activity occurred and when risk urges were strong, followed by determination of the skills the patient will need to handle the situation differently in the future;

* opportunity through role playing to practice declining sexual overtures assertively;

* guidance regarding how to avoid unnecessary rejection or to handle unavoidable rejection when it occurs;

* guidance regarding how to avoid situations associated with casual sex and realizing "that brief encounters do not reduce the loneliness that triggers them when reaching for the first drink"; and

* understanding of the "cycle that will be fueled by alcohol-increased loneliness, decreased inhibition, hopelessness about long-term relationships, and a return to the same patterns again" (Kelly, 1991, p. 240).

Furthermore, in assessing the impact of AIDS on people with psychological and social problems manifested in mental illness, the predisposition toward being unable to cope successfully with external and internal pressure should be considered.

Testing positive for HIV--even without the presence of any physical symptoms--can be stressing even in a person who does not have previous mental illness. Some of the known stressors include feeling infectious, having to face death and dying, feeling ambivalent about the virus, utmost uncertainty about the future life course (e.g., what and when will they have AIDS-related diseases, how many years are left to live), desire to maintain secrecy, and lack of counseling related to HIV testing (Aladjem, 1988). The physical presence of AIDS causes additional psychological problems. The social stigma associated with AIDS, for instance, can lead to a lack of support systems, alienation, and total isolation.

The experience of being HIV positive or of having AIDS results in major psychosocial stressors that have the potential to exacerbate physical or psychiatric illness (Hurley & Ungvarski, 1994; Penner, 1994). Results of a 6-year study (Burack, 1991) indicate that HIV positive men suffering from moderate to severe depression lose greater numbers of T-cells, tend to develop AIDS more quickly, and die sooner than their nondepressed counterparts. Relieving stressors has been found to increase the immune system and might forestall or eliminate the onset of disease complications (Antoni, Schneiderman, Fletcher, Goldstein, Ironson, & Lapperriere, 1990). Thus, stress management is an important part of mental health treatment.

Despite many special cognitive and affective learning deficits, severely psychiatrically disabled persons also have demonstrated that they can learn a wide variety of stress management skills (Brown, 1980; Liberman, 1982). Exercise, relaxation techniques (such as guided imagery), cognitive re-appraisal, and social support reduce the need to resort to substance abuse or acting out in response to stress (Ergi & Canton, 1982). Stress management benefits mental and physical health as well as enhancing the immune system.

Conclusion

The current status of AIDS prevention education for persons with mental illness stands in sharp contrast to the increased need for such training. The framework for primary AIDS prevention education that is appropriate for this population involves the following:

* sharing information about the transmission of AIDS in order to motivate behavior change;

* providing the means to change behavior, such as building interpersonal assertiveness and relationship skills, or making condoms available; and

* providing means of reinforcement for behavior change.

To complete these goals, rehabilitation staff serving individuals with mental illness should receive education in order to dispel any false assumptions that they may have about the capacity of persons with mental illness to comprehend their risk of AIDS or to change their risk behaviors. In addition, AIDS education will lower staff fears of and stresses from working with HIV+ individuals.

Finally, people with mental illness who are HIV+ or who have AIDS can benefit significantly from secondary AIDS management education. In an effort to reduce the transmission of the AIDS virus, these individuals need assistance to cope with the psychosocial stressors of having the disease. The preexisting emotional, behavioral, and personality characteristics of mental illness are exacerbated by the psychiatric manifestations of AIDS. Treatment, therefore, should include education, psychosocial support, stress management, and appropriate pharmacotherapy.

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