The Role of Mental Health Services in Addressing HIV Infection Among Women With Serious Mental Illness

Twenty-five years ago, it had already become evident that individuals with schizophrenia and related psychoses were at relatively high risk of HIV infection and that preventive measures were urgently needed (1–4). Serious mental illnesses affect approximately 2.8% of the U.S. population (5). Patients affected by these disorders are at risk of HIV infection not because they are mentally ill, but because their illnesses are associated with a number of risk factors, including illness-linked factors and related lifestyle factors, of which there are many, as well as factors linked to a developmental history of socioeconomic disadvantage, which often accompanies serious mental illness. In fact, the association between HIV infection and serious mental illness may meet the criteria of a “syndemic,” the aggregation of two or more health issues in the same population, where each disorder precipitates or aggravates the other.

Factors linked to mental illness that raise the risk of HIV infection include impulse control deficits, impaired judgment, and deficits in volition. Related lifestyle factors include high rates of intoxicant use and injection drug use, inadequate knowledge about HIV transmission, indiscriminate sexual behavior with multiple partners, homelessness or residence in underresourced inner-city neighborhoods, time spent in jails, failure to practice safe sex, exchange of sex for money and drugs, high rates of social isolation, and sexual victimization. Factors linked to a developmental history of socioeconomic disadvantage include interrupted education, neglect, abuse, discrimination, adversity, and social isolation (6–8).

Gender, Mental Illness, and HIV

The prevalence rates of HIV among persons with serious mental illness in the United States are chiefly associated with comorbid substance abuse and drug injection (9) but also with the severity of psychiatric symptoms (10). HIV rates are at least four times higher among persons with mental illness than they are in the general population (10). Surprisingly, among persons with serious mental illness, women are more likely than men to test positive for HIV (11). That is probably because women are exposed to all of the same risks as men, and a few more. For example, women may engage in the bartering of sex in order to meet survival needs or may experience coerced sex in the context of domestic violence or rape while having limited access to the means of sexual protection. In some parts of the world, the extra risks relate to gender norms that limit female assertiveness when negotiating for safer sex. Female genital mutilation, practiced in some cultures, has been significantly associated with HIV infection (11). Gender differences in the impact of poverty on health also may play a role (12).

Protection against infection is often more problematic for women than for men. Most women who become infected with HIV acquire the infection from their primary male partner. If they fear the partner’s rejection, or violence, they are unlikely to insist on the use of condoms during sexual intercourse. Sometimes, they themselves prefer that the partner not use condoms because they want to have children (13). Substance abuse, associated in many studies with unprotected vaginal intercourse, is a significant problem for women with serious mental illness, as it is for men (14).

As suggested by Agénor and Collins (12), mental health care providers are perhaps uniquely qualified to help prevent HIV among women with serious mental illness. Because of regular, confidential interaction with their patients or clients, over time they build reciprocal, robust, trusting relationships. As a result, providers acquire a certain amount of influence over clients’ lifestyle choices. Mental health personnel are in a position to prevent infection by ameliorating symptoms of both psychiatric illness and substance use disorders. For example, by helping their patients procure food, housing, and supplemental entitlements, mental health providers can reduce the economic insecurity that might otherwise lead women to exchange sex for provisions—for themselves and their children (15). Mental health staff can also provide guidance on interpersonal issues—domestic violence, for instance—and enhance critical HIV knowledge and skills related to modes of transmission of infection, access to male condoms, and proper use of female condoms. They can also help patients rehearse interpersonal skills related to setting sexual boundaries and negotiating for the use of safer sexual practices (16).

In a study of 96 sexually active women with serious mental illness from five community support programs in the United States, Randolph and colleagues (17) found that the women engaged in an average of 19 acts of vaginal or anal intercourse in the three months prior to the commencement of the study. Very little of this sexual activity was protected by condoms. Nearly two-thirds of the participants in the study had not used condoms at all in the preceding three months. Only one woman in the group reported consistent condom use. Most study participants (>60%) drank alcohol, and almost half reported engaging in sex after having had too much to drink or after using drugs. Almost one-third of the women used crack cocaine, marijuana, or both. The frequency of unprotected intercourse was significantly correlated with having sex after using alcohol or drugs. This study concluded that in order to protect against HIV, women with serious mental illness needed help to develop self-confidence and acquire communication and social networking skills (17).

Looking at the larger picture of HIV prevention, Hughes and Gray (18) and Tenille and colleagues (19) endorsed patients’ need for self-confidence, communication skills, and extended supportive networks, but they also recommended that mental health staff obtain accurate information about every individual’s risk factors, deliver optimal anti-HIV interventions, address the reproductive needs of HIV-infected women, learn to distinguish primary psychotic and cognitive symptoms of mental illness from secondary symptoms of HIV infection or its treatment, and help combat the double public stigma experienced by clients with mental illness and HIV by recognizing and preventing professional stigmatization.

This article reviews the services required to treat women with serious mental illness who are at risk of acquiring HIV or are already infected.

Methods

The terms “HIV” and “serious mental illness” and “women” were used to conduct a search of Google Scholar for recent articles addressing the topic of HIV infection among women with serious mental illness. All articles were explored for their relevance and timeliness in terms of the mental illness–HIV syndemic among women (20) and the potential preventive and therapeutic role of mental health professionals. Google Scholar (1985–2014) was used as the database because it is multidisciplinary and provides academic articles from fields such as sociology and law as well as health.

Results

Out of 500 relevant papers retrieved, 82 have been included, based on their state-of-the-art findings.

Obtaining Information

Having accurate information about individual risks was generally considered necessary in order to mount appropriate and effective preventive measures against HIV infection. Disclosure by patients of sensitive personal information has been shown to depend on trust and on the alleviation of privacy concerns. Willingness to report details of sexual behavior appears to depend on the characteristics of the interviewer, the framing of questions, the mode of administration of surveys, and the social desirability of the behavior in question (21). Risk behavior is often underreported (16). As long as there was a firm guarantee of confidentiality and questions were open ended, face-to-face interviews grounded in a therapeutic alliance appeared to generate the most accurate information (21). It was found important for the interviewer to demonstrate sensitivity to the cultural background of the patient. This included awareness of cultural and personal taboos regarding sexual topics, potential exposure to risk factors associated with female genital mutilation and unhygienic medical and surgical practices, and critical power imbalances between the sexes (22–24).

Interventions to Reduce HIV Risk

Currently, as a measure of prevention, many mental health facilities offer educational group sessions that address sexually transmitted diseases, including HIV. The groups have been shown to increase clients’ knowledge, but in the reports, education does not always translate into behavior change (25). It has been recommended that educational sessions for women include, in addition to details about HIV transmission, facts about prevention and treatment of bacterial vaginosis, a commonly occurring infection that causes inflammation of the female genital tract, increasing susceptibility to HIV infection (26). It has also been recommended that mental health facilities take responsibility for facilitating access to both male and female condoms and provide training on five condom-related behaviors: accessing, carrying, negotiating, using, and disposing (27). Although the situation may have changed, in 2007 few mental health programs distributed condoms to clients. Only 10% did so on an anonymous basis; another 20% provided condoms only if prescribed by a physician (28).

A comparison has been made of cognitive-behavioral therapy (CBT) and standard health promotion techniques with respect to reducing HIV risk (29). In this study, CBT prevention techniques included provision of HIV-risk information, motivational enhancement, and information about risk-reduction behavioral skills tailored for persons with serious mental illness. After six months, knowledge regarding HIV transmission and risk reduction increased following both interventions. There were no overall gains in personal attitudes toward condom use, but skills in using condoms increased in the CBT group. Major risk behavior outcomes among women, however, such as the proportion of vaginal sex that was unprotected or the number of sexual partners, were not affected by either treatment condition, highlighting the need to find new ways to change risk behavior.

As mentioned above (17), many women need training in communication and assertiveness skills designed to convince male partners that condom use is necessary (30). Such skills, once taught, appear to require repeated review in order to maintain gains. Female condoms bypass the need for the cooperation of the male partner, but health care providers have not often recommended them, perhaps because of their own unfamiliarity with their use (31). The literature points out that the female condom has disadvantages. It is detectable when in place, so men who react negatively to male condoms—perceiving them as a mark of distrust, a means of diminishing male pleasure, or an indicator of a woman’s infidelity—may object. The female condom is also costly. Other reported reasons for its relatively low uptake have been its appearance, which may be considered a “turn off”; difficulty with insertion; a rustling noise during intercourse; and occasional discomfort and slippage (32,33).

An intervention study conducted in an Alabama sexually transmitted diseases clinic found that the prevalence of insertion difficulty associated with use of a female condom substantially decreased after participants were able to practice on a pelvic model and were given opportunities to insert the device and receive feedback by a nurse (34). Similarly, another study found that female condom breakage and slippage rates significantly declined with increased use of the device; after more than 15 instances of use, combined failure rates fell from 20% to 1.2% (35). The efficacy of the female condom in preventing HIV transmission via anal intercourse has not yet been fully explored (36).

Antiretroviral therapy pills and vaginal microbicide gels and rings for primary (before sex) and secondary (after sex) prevention of HIV are becoming increasingly available. However, their use is complicated by insufficient efficacy data, relatively low availability, high cost, need for medical supervision, and a requirement that the user maintain adherence over lengthy periods of time. Medicinal vaginal products may inflame vaginal tissue and, paradoxically, facilitate entry of HIV; thus they are not for everyone. There are also public health concerns about whether use of these new methods could facilitate resistant strains of HIV or undermine condom promotion (16,37). A combination of preventive methods has been advocated for use until the expected advent of a safe and effective HIV vaccine (38).

Because 70% to 80% of individuals diagnosed as having severe mental illness experience varying degrees of cognitive impairment that interfere with their ability to make satisfactory decisions (39), an additional way of reducing HIV risk in this population is to improve clients’ cognitive skills through cognitive remediation (40). Cognitive remediation has been found to be especially effective when baseline deficits are relatively greater (40).

Programs that promote adherence to antipsychotic medication, such as motivational interviewing and compliance therapies, and community treatment orders that monitor treatment adherence all help to combat symptoms of psychosis and may, therefore, improve adherence to the practice of safer sex. Because substance use disorders are common among persons with serious mental illness (41) and because they undermine judgment and contribute to risky sexual practices, treating these disorders is important for HIV prevention. Persons with co-occurring disorders (mental illness and substance use disorders) are at high risk of HIV if the individuals are not identified and the substance use disorder is not treated early. Injection drug use is a special concern with respect to HIV transmission; referral to sites where clean needles and syringes can be obtained has been recommended (42).

With respect to screening, the Centers for Disease Control and Prevention recommends annual HIV testing for individuals at high risk (43). Women with serious mental illness, although acknowledged to be at high risk, are not usually offered yearly HIV tests through their mental health service provider. A 2009 review found that fewer than half (17%−48%) of individuals who used mental health services were tested for HIV in any given year (44). There are thorny ethical problems involved in the implementation of screening programs in mental health settings, the primary problem being a perception that targeted screening further stigmatizes an already stigmatized population. A second issue is whether consent can be truly free and truly informed in mental health settings, given that some clients have impaired cognition and inadequate knowledge and imperfect understanding of the implications of screening and that health care staff may exert considerable social pressure on patients to comply. There is also a question about using incentives to HIV testing, which may be perceived as coercive (45). Another issue related to the use of screening programs is the virtual impossibility of guaranteeing anonymity of test results because clients talk among themselves about each other. A still more complex issue for staff is whether to disclose a client’s positive results to actual or potential sexual contacts. The debate is whether warning third parties overrides the duty to maintain confidentiality.

A recent study addressed some of the problems related to the use of screening. Persons who were receiving psychiatric inpatient treatment (N=105) in central London (36% of whom were female) were approached for a study of widespread screening for HIV and other blood-borne viruses (hepatitis B and C). Eighty-three percent of those approached were judged to have the mental capacity to provide informed consent for testing. Among persons who were offered the testing, 63% accepted, and of those, 18% had serological evidence of a current or previous blood-borne infection. Three percent tested positive for HIV (46). The investigators concluded that educational interventions require several sessions to improve clients’ capacity to consent and suggested that it is possible to integrate testing for blood-borne disease into standard clinical procedure (28).

Management of HIV Infection

Mental health staff who provide clinical services for persons with serious mental illness have varied responsibilities in the management of HIV. These responsibilities are summarized in the box displayed in this article.

Drug Treatment

A person with two chronic illnesses, such as psychosis and HIV, has the burden of indefinitely managing two sets of complex drug regimens. The consequences of using both antipsychotics and highly active antiretroviral therapy (HAART) are a major clinical concern because each regimen is associated with side effects. In addition, there is the potential for interactions between the two sets of drugs, and there are difficulties associated with adherence to two complicated drug regimens (47–49).

Both antipsychotic drugs and HAART can induce neuromuscular and metabolic side effects. The peripheral neuropathy effects of nucleoside reverse transcriptase inhibitors can increase the severity of extrapyramidal effects of antipsychotics (50). Many antipsychotic drugs promote obesity, diabetes mellitus, cardiovascular risk, and metabolic syndrome (51), which are aggravated by the addition of HAART. As a result of the concomitant use of second-generation antipsychotics and long-term antiretroviral therapy, there is an increase in central fat, especially among women, that has been associated with increased cardiovascular risk (52).

Another concern related to the use of psychotropic and antiretroviral drugs is the possibility of drug interactions (53). Psychotropic agents and HAART interact through their joint metabolism by cytochrome P450 isoenzymes, especially CYP3A4, CYP2D, and CYP2C9 or 2C19, but also CYP1A2 (54). The National Institutes of Health (55) constantly updates its Web site with information about interactions between existing drugs and newly developed HAART regimens. Currently, it is posting a warning about an interaction between some HAART regimens and the antipsychotic medications pimozide and quetiapine. Complementary medicines, such as herbal remedies, may also interact with HAART drugs (56) and with antipsychotic drugs (57).

Lifelong adherence to medication is critical both for psychosis and for HIV infection, despite inconvenient medication regimens and adverse side effects. Some patients experience treatment fatigue, defined as decreased motivation among long-term patients to adhere to an ongoing treatment regimen (58,59). Paradoxically, although ongoing adherence to antipsychotic medication among persons with serious mental illness is low (60), it was shown to improve by sevenfold among persons who also took medication for a comorbid medical illness (61). By the same token, HIV-positive patients with psychiatric disorders have been found to be more likely to adhere to HIV treatment during periods of regular mental health service attendance (62,63). Various adherence therapies have been found useful, including CBT, motivational interviewing, cognitive adaption training, and general psychoeducation. Support services, such as arranging transportation to pharmacies and obtaining insurance benefits, have also been found effective in addressing some of the logistic barriers that interfere with adherence (64).

Reproductive Issues

Contraception.

There have been suggestions that for sexually active women, pregnancy might increase the risk of acquiring HIV and also increase infectivity of HIV-positive women (65). This makes effective contraception a critical tool for women in the battle against HIV. Because many antiretroviral drugs have significant pharmacokinetic interactions with oral contraceptives, the simultaneous use of two contraceptive methods (a barrier method and hormonal contraception, an intrauterine device, or sterilization) has been found to be the most effective way of preventing unintended pregnancies (66). Strict adherence to contraceptive measures and their continuous use, as well as access to safe abortions, are required for the prevention of unwanted pregnancy among HIV-positive women (67,68). However, with current antiretroviral treatment, mother-to-child HIV transmission can be reduced to almost zero (69), allowing women with HIV infection to bear children relatively safely, should that be their decision (70).

Pregnancy.

HIV-infected women increasingly are pursuing motherhood (71,72). Worldwide, however, maternal mortality is reported as two to ten times higher among HIV-infected women than among uninfected women, and HIV-related causes contributed to between 19,000 and 56,000 maternal deaths in 2011—equal to 6% to 20% of maternal deaths in that year. The most common causes of maternal death among women with HIV were coinfections, such as pneumonia, tuberculosis, and meningitis. These deaths have been shown to be preventable by good obstetric care, effective treatment of common coinfections, and treatment of HIV with HAART (73,74).

Some concern has been expressed about the possibility that specific HAART combinations are teratogenic (75). As well, the pharmacokinetics of HAART during pregnancy—and their effects on treatment outcomes and maternal-to-child transmission—have not been fully investigated, especially in situations involving comorbidity and coadministration of other medications (76). A risk of growth restriction of the fetus in the presence of HIV infection has been reported (77), and a risk of preeclampsia and gestational diabetes has been associated with serious mental illness (78). Other birth complications experienced by this population (preterm birth and low Apgar scores) have been attributed to a high rate of smoking and abuse of other substances, as well as to obesity (77).

Postpartum period.

The postpartum period is a particularly vulnerable time for mothers with mental illness (79), with relapse a possibility unless sufficient supports are in place. With respect to HIV infection, the postpartum period is associated with immunosuppression (80), making it critical for women to continue their anti-HIV regimen postpartum (81). HAART taken by mothers has been reported to reduce, but not eliminate, the risk of transmission of HIV in breast milk; women need to know both the risks of breastfeeding in these circumstances and also the health advantages. The literature reports the following barriers to retention in HIV care during the postpartum period: feelings of isolation and lack of social support, lack of access to or prohibitive cost of transportation, and the difficulty of fitting HIV and mental health care into child care schedules. Facilitators of HIV care adherence after childbirth have included family support and appointment reminders (82).

Parenting

When psychotic symptoms are added to the already fragile health of an HIV-infected mother, the parenting capacity of the mother may be completely overwhelmed, although, sometimes, the double burden may result in greater motivation to seek help (83). Two serious illnesses, however, inevitably will take a mother’s time away from the tasks of child care, and in response, the children may develop behavioral problems. An added complication is that mothers with mental illness may not trust caregivers, perhaps because they are afraid of losing custody of their children (84) and, therefore, may avoid mental health services. Economic hardship exacerbates the challenges facing such “doubly affected” families (85).

Psychosis Secondary to HIV

Individuals with psychosis may develop HIV, but individuals with HIV may also develop psychosis as a result of brain infection or the side effects of HAART. As many as 15% of HIV-infected patients may experience new-onset psychosis (86). These psychoses are usually characterized by the presence of relatively unstructured paranoid delusions and by impaired attention and concentration, without affective symptoms (87). Older women appear to be particularly at risk (88). Among antiretrovirals, a nonnucleoside reverse transcriptase inhibitor—efavirenz—is perhaps the most responsible for CNS toxicity, causing insomnia, irritability, and vivid dreams—symptoms usually described as mild or moderately severe and time limited (89). Nucleoside reverse transcriptase inhibitors, however, particularly zidovudine and abacavir, have been associated with frank psychosis.

Notably, 40% to 50% of HIV patients experience neurocognitive difficulty even when treated with HAART. The difficulty can range from relatively mild to very severe. HIV-associated neurocognitive disorders are related to host factors, such as genetic predisposition, metabolic disorders, cardiovascular impairments, and age, as well as HIV-related factors, such as the presence of AIDS or of drug resistance, and comorbidities such as mental illness (90). A recent study of neurocognitive impairment in HIV infection found more impairment among women than men (52% versus 35%, respectively) (91). As of now, there are no data to support the use of any therapy other than HAART for the treatment of neurocognitive disorders associated with HIV infection.

When mental health staff were asked about training needs in 2007, the area of need mentioned most was knowledge about the neuropsychiatric aspects of HIV infection (28).

Stigma

Symptoms of mental illness and of HIV infection can now be controlled, but a diagnosis of schizophrenia or HIV still engenders fear and discrimination in the general public. The stigmatization of individuals with these diseases remains prevalent, as does the internalization of stigma among patients and its inevitable result, social avoidance. Marginalization because of illness has been shown to increase when a person experiences more than one stigmatized condition (92), and such marginalization has a profoundly negative influence on the quality of daily life. Health care providers themselves are not immune from stigmatizing attitudes (93). One outcome may be that mental health workers do not provide the early detection, intervention, and referral options critical to the care of women with severe mental illness who are at risk of HIV infection (94). This lapse can prevent timely access to critical knowledge and to opportunities for prevention. Collins and others (95) have maintained that mental illness stigma increases HIV risk by cutting off sources of social connectedness and that mental health practices that place greater importance on women’s reproductive control via hormonal contraception, for instance, versus HIV prevention via condom use constitute inadvertent discrimination. Women with serious mental illness may internalize stigmatizing beliefs and begin to expect rejection. In turn, expectations of rejection lead to loss of self-confidence, avoidance of social interactions, and—as a consequence—severely constricted social networks and a relatively poor quality of life.

Discussion and Conclusions

This literature review provides evidence that several approaches, when combined, are more effective in reducing viral transmission in groups at high risk of HIV infection than reliance on one modality alone. Mental health services for serious mental illness can facilitate such approaches. Frank discussion of modes of viral transmission and personal strategies for reducing sexual risk emerged as prime requisites for prevention. Psychoeducation has also been endorsed, along with continued, lifelong antipsychotic medication. Addressing homelessness and domestic violence, ensuring the receipt of financial entitlements, and providing psychotherapy, social support, and, when necessary, cognitive rehabilitation, all rank high among successful strategies. Research has also suggested that mental health care providers promote the health value of abstinence, monogamy, and reduction in the number of sexual partners.

The literature shows that clients also value access to and training in condom use. Clients at high risk of HIV may require pre-exposure prophylaxis with oral antiretroviral drugs or vaginal microbicides. The following preventive tactics have been recommended as effective: prompt diagnosis and treatment of all sexually transmitted infections; use of clean needles for injection drugs; across-the-board offers of HIV testing; rapid linkage to treatment; long-term retention in care; monitoring of adherence to psychiatric and HIV drugs; and attention to drug interactions and drug side effects. Pregnant women with HIV have been acknowledged as belonging to an especially vulnerable population. Rapid management of substance abuse and all other comorbidities have been endorsed, along with maintenance of confidentiality and staff training to preclude professional stigmatization (96).