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More than just a virus: Responding to the needs of consumers with HIV and mental illness in the third decade of AIDS

Phil Maude
Senior Lecturer, School of Nursing, University of Melbourne, Carlton VIC

Abstract

This paper provides a review of the literature concerning risk taking behaviors for HIV amongst the mentally ill and knowledge of HIV/AIDS amongst this group. The paper presents a comparison of Australian and international statistics of prevalence and new infection rates and outlines the subsequent psychiatric complications arising from AIDS. Suggestions are made as to the development of appropriate patient sexual health teaching by nurses. Above all the purpose of the paper is to inform clinicians and develop discourse concerning the implications for clinical practice.

Keywords

AIDS, HIV, mental illness, dual diagnosis

Article Text

"How do you think I feel about dying? I am 35, I had a potentially brilliant career ahead of me, all my ambitions were lying in front of me waiting to be picked off like ducks in a gallery." (Sykes, 1993)

This discussion paper provides an overview of one of the contemporary complexities of working as a mental health nursing professional, that being: Working with clients who have a dual diagnosis of mental illness and infection with the human immunodeficiency virus (HIV).

The above mentioned extract from a poem by James Sykes entitled "How can you write a poem when you're dying of AIDS" screams anger at the frustration of things being randomly taken away from him by AIDS. For all of us who have lived through the last two decades of AIDS, we grieve not only for the loss of individuals but also for the frustration with the political responses that have been made because of the nature of AIDS (Shilts, 1995). As health care workers we need to examine how AIDS discourse has shaped society's understanding of this disease. Kruger (1996) suggests that nursing, medical and scientific texts have presented HIV and AIDS as an exclusively gendered (homosexual) disorder. This has misled clinicians and may be a reason why such a paucity of debate exists within the mental health nursing literature concerning HIV and mental illness.

There exists an ancient Chinese curse that has been written for the worst of enemies: "May you live in interesting times" (Osborn, 1989, p. 23). Within our generation we seem to be haunted by this curse. We live in a time where a virus, new to humanity, has developed with the capacity to spread amongst humans via sexual intercourse and blood. It has placed limitations on the ways we love, develop relationships, procreate and see ourselves as individuals.

Having worked as a volunteer in the area of HIV/AIDS prevention as a counsellor and needle-exchange outreach worker since 1985, I have often been confronted by the enormity of the mental health care issues arising from HIV. To work in such an area, the clinician has to broaden their understanding of pleasure and expression of sexuality. Such a clinician will learn that humans seek pleasure in many ways and often are prepared to break the law to seek out gratification. They will also learn that pleasure is not always sought in the company of another human being, but rather at times alone with a needle. The importance of HIV health teaching within the general community and the serious effects of HIV on the mental well being of those diagnosed or tested, must be acknowledged. So too, mental health nurses need to be concerned that people living with mental illness are often placed at risk by the very nature of their disorders. We need to be aware that as clinicians we could be neglecting our role as health teachers. It is from this concern that this paper arises.

Objectives

This paper will provide a review of the literature concerning HIV and mental illness by taking into consideration risk-taking behaviors for HIV and knowledge of HIV/AIDS amongst the mentally ill. The subsequent psychiatric complications arising from AIDS will also be considered. The need for nurses to incorporate sexual health teaching as part of assessment and interventions strategies will be suggested. Above all the purpose of the paper is to inform clinicians and develop discourse concerning the implications for clinical practice.

Background

When discussing dual diagnosis presentations, such as mental illness and HIV infection, it is necessary to consider that mental illness can arise from a diagnosis of HIV, or even during the long waiting period for test results. So too, individuals can place themselves at high risk for HIV infection due to symptomatology arising from untreated mental illness.

In the first two decades of AIDS a plethora of discussion existed concerning HIV/AIDS and its potential impact upon the health care system. However, recently a sense of complacency exists within our community concerning HIV, the risk factors to health professionals and the need to prioritise HIV preventative health teaching for mental health patients. The statistics concerning needle stick injuries amongst health care workers in Victoria can be utilised to illustrate this point. The Victorian Work Cover Authority has released figures that demonstrate needle stick injuries had risen by 12.6% between the financial years of 1996/97 and 1997/98 with 357 claims, 80 working days lost and $84,857 paid in compensation to June 1998 (The Age, 1998).

In the United States by 1995, 500,000 individuals, largely young people, had been diagnosed HIV positive with nearly two thirds of these now dead. In 1997, just two years later, it was estimated that 900,000 cases of HIV existed in the United States (Carey et al., 1997). By 1998 HIV had infected one in four adults in Africa and some 30 million people worldwide (The Age, 1998). At the end of 1998, according to estimates from the United Nations Program on HIV/AIDS and the World Health Authority the number of people living with HIV grew to 33.4 million, 10% more than just one year before. In Australia, to the end of September 1998, there had been 19,225 diagnosis of HIV; 7,937 diagnosis of AIDS and 5,637 deaths. Approximately 93% of all HIV diagnosis were in men with a growing trend of new infection in women (UNAIDS, 1998). Latest figures released by UNAIDS (2001) reveal that in Australia and New Zealand there were 15,000 adults and children living with HIV (500 new infections during 2001) with 10% of adults infected being female (an increase of 3% since 1998).

Complacency and a lack of health promotion have been reported as causing poor compliance with safe sex practices and harm minimization strategies. Higher rates of STDs and higher levels of HIV new infections in both developed and developing countries have been the result (UNAIDS, 2001) If this trend is not addressed then a resurgence of HIV as an epidemic will reoccur. Overall more than 75,000 people became newly infected with HIV in the USA, Canada and Australia during 2001 (Oelriches, 2003). Taking these figures into consideration it is timely to review the literature and consider the impact of HIV in Australia and upon those with mental illness.

Mental illness, HIV and AIDS defined

Mental illness has been loosely defined by Burdekin (Human Rights and Equal Opportunity Commission, 1993) as the presence of symptoms indicating disturbance in mental functioning such as thought, perception, memory or judgment. A plethora of definitions of mental illness are defined in diagnostic tools such as the DSM IV (American Psychiatric Association, 1994) and ICD 10 (World Health Organisation, 1993), which aim at consistency in psychiatric diagnosis.

HIV is a virus, found in all body fluids and tissue of infected individuals that is capable of causing immunosuppression. Individuals infected with the HIV virus manifest with profound disturbance in cell mediated immunity, which may lead to a diagnosis, know as acquired immune deficiency syndrome (AIDS). When this syndrome occurs, the body is so immunocompromised that it is unable to suppress infection. Major 'at-risk' groups are homosexual and bisexual men and intravenous drug uses. Haemophiliacs receiving factor VIII have contracted HIV through transfusion. And infants born of or breast fed by HIV positive women have also contracted the virus. In many of the world's cultures HIV is dominant within the general heterosexual population manifesting in both sexes and growing amongst heterosexual women (Oelriches, 2003). Despite this, it is regarded as a disorder of the marginalised of society.

HIV and mental illness: The literature

The literature is largely dominated by North American contribution, which has described an increased risk of HIV infection in mental health patients. It is questionable whether education messages, aimed at the general public, have reached people living with mental illness (Checkley et al., 1996).

Psychiatric disorders will affect most people with HIV infection at some time in the course of their illness (Buhrich & Judd, 1997). Up to 70% of people with HIV will develop an organic mental disorder manifesting in delirium or dementia. Major depression will manifest within 25% of those diagnosed with 17% experiencing panic type disorders. A Canadian study has reported that overall 70% of those diagnosed will seek some form of mental health service during the course of their illness (Minister of National Health and Welfare, 1995).

Prevalence of HIV infection in people with mental illness

The literature reports that the prevalence of HIV infection amongst the mentally ill is up to 70 times greater than the rate found in the general population (Carey et al., 19971). Several New York studies, utilising the anonymous analysis of blood of mentally ill in-patients, revealed high HIV seroprevalence rates. Volavka et al (1991) reported 8.9% infection, Lee et al, (1992) reported 16.3% with Cournos et al (1991) and Sacks et al (1991) finding 5.5% and 7.1% respectively. This compares with other studies that have reported rates of 0.44% in military recruits (McNeil et al., 1990) 0.25% in Army personal (Kelley et al., 1990) and 1.3% in general urban hospital patients (St. Louis et al., 1990).

Given the high rates of HIV within populations of people with mental illness, it is essential that health teaching aimed at reduction of high risk behaviors be reviewed and programs implemented that are sensitive to the needs of the mentally ill. In fact this is an area where mental health consumer groups could provide consultation roles and provide delivery of sexual health education packages to peers.

Risk taking behaviors
Concerning risk taking behaviors a comprehensive study by Zafrani and McLaughlin (1990) surveyed 265 community mental health outpatients with chronic mental illness and found the following: 21% reported high risk behaviors such as IV drug use, multiple sex partners and same sex sexual contacts. Of these identified "high risk" individuals, levels of knowledge concerning HIV and its transmission were significantly lower than the general population. Knox et al., (1994) administered a structured interview and anonymous questionnaire concerning HIV risk taking behavior to 120 participants with chronic mental illness. Of the sample 40% reported multiple sex partners in the previous 12 months with 7% of these having had more than 10 partners in that year. Condoms where never used by 37% of the sexually active. Anal intercourse was reported by 14% of respondents with 5% of males and 16% of females having been receptive during anal intercourse. In addition, 30% reported having had high-risk sexual activities while using alcohol or other drugs and 14% reported having sex to acquire drugs or money.

Knowledge of HIV amongst people with mental illness
Knowledge of HIV and its impact upon health belief outcomes is also useful data to assist the clinician to plan for intervention. The literature suggests that people with mental illness have less knowledge of HIV than the general population (Knox et al., 1994). Cates and Graham (1993) revealed that contemporary HIV health education had little impact on people with mental illness. This would suggest that health promotion strategies are required that take into consideration the uniqueness, knowledge and health beliefs of the mentally ill.

HIV and mental illness in Australia
A paucity of debate exists concerning the impact of HIV upon mental illness in Australia. However a Victorian study (Thompson et al., 1997) makes contribution to knowledge concerning the Australian experience. In this study, aimed at determining the prevalence of risk factors amongst an inner city metropolitan population of 145 participants with chronic mental illness, the following was found: Injecting drug use was reported by 15.9% (10 times greater than the general population); 20% had multiple sex partners in the previous 12 months; 12.6% of males reported sex with a person of the same gender; almost 50% had paid a prostitute for sex; 9.2% had engaged in receptive anal sex; 33% had been tested for HIV; and only 15.9% could remember ever having someone discuss HIV transmission with them. This study (Thompson et al., 1997) provides support of the North American literature and draws our attention to the need for HIV health teaching within mental health services. These research findings should alert Australian clinicians that HIV infection amongst the mentally ill is a local health care issue.

In addition, two large reviews of mental health services for people with HIV/AIDS occurred in Australia in 1988 (National Health and Medical Research Council, 1988) and in Victoria during 1997 (Ministerial Advisory Committee on HIV/AIDS, 1997). The 1997 Victorian report has eventuated in the Victorian Department of Human Services developing education and training package for Victorian mental health clinicians and a large state wide study to determine the degree of HIV infection in Victorians living with mental illness.

Living with mental illness in the time of AIDS

Individuals are particularly vulnerable to HIV infection whilst experiencing the symptomatology of mental illness. Impassivity, increased libido, high levels of sexual activity and risk taking behavior, feelings of worthlessness, reduced negotiation skills, homelessness, poverty and excessive levels of drug use have been cited as contributing factors to risk (Checkley et al., 1996). In addition, limited knowledge exists regarding the interaction of anti-virals with psychotropic medication and their impact on the mental well being of individuals. This is an area in urgent need of future research.

HIV and mental illness: Who are our clients?

Taking into consideration the impact of the virus on at risk groups seeking a diagnosis, reactions to diagnosis and coping with living with the complications of HIV in later stages of AIDS, it can be said that HIV has caused neurotic disturbance in the worried well, grief reactions in those newly diagnosed and ineffective individual coping in many people living with AIDS. So too, pre-existing psychiatric illness may increase the risk of behaviors predisposing to the transmission of HIV infection.

The worried well and anxiety disorders
The HIV virus has a psychosocial impact on our community. It has required an abrasive re-evaluation of sexual practices post recent sexually liberating milestones such as gay liberation, the advent of contraception and general acceptance of sex without commitment. Fear of HIV has caused anxiety within some members of our community. A Canadian study found that up to 60% of callers to an AIDS line were in a state of anxiety and displayed unreasonable fear about their risk of infection (Minister of National Health and Welfare, 1995). Studies have indicated an eight-fold increase in generalized anxiety disorders and a four-fold increase in the incidence of panic attacks (Bing et al., 2001). An Australian study by Nash (1996) described the recurrent presentation of patients for HIV testing despite not having practiced any at risk behaviors. Nash described these individuals as having major depressive illness although presenting initially with generalized anxiety disorder type symptoms. Case reports exist that describe this phenomenon of factitious reporting by individuals that they are HIV positive and such false claims by individuals are explained by delusional belief systems in HIV negative people (Workman, 2003), individuals attempting to claim support services (Craven et al., 1994) and Munchausen's syndrome (Zuger & O'Dowd, 1992). Thus effective screening for anxiety and other disorders is important but must be taken into consideration with the results of serology investigations.

Psychotic disorders in HIV infected individuals
Schizophrenia is most commonly associated with HIV. However, mood and cognitive/neurological disorders need to also be considered (Workman, 2003). Individuals with mental illness are often socially and culturally vulnerable and a subsequent diagnosis of HIV adds to this burden.

Depression and mood disorders
Depressive illness has been reported in around 14% of the general population (Rosenberger et al., 1993) however screening studies in populations with HIV have revealed an incidence of depression of between 15 and 50% (Judd et al., 1997; Judd & Mijch, 1996; Lyketsos et al., 1996). A multi location neuro-psychiatric study (Asian, South American, African and European locations) identified high occurrence of current depression (18%) and strong prevalence (24%) (Maj et al., 1994). It is questionable if Highly Active Retroviral Therapy (HART) regimes have impacted upon the prevalence of depressive illness however studies have considered the impact of depression upon adherence to HART regimes (Angelino & Treisman, 2001) and reported resultant poor response to HART treatment (Bangsberg et al., 2000). These studies suggest that the routine screening for depression amongst people with HIV is required to ensure the best possible care can be prescribed and that treatment regimes are clearly understood and adhered to.

Mania and hypomania is reported to occur more frequently in HIV infected patients than the general population and can be considered as either a primary or secondary diagnosis. Secondary occurrence of mania (in individuals who have no history of mood disorder or familial traits) is reported to manifest in some instances in late stage disease presentations and in particular with AIDS dementia complex (Wagner & Rabkin, 2000).

Psychotic episodes and opportunistic infections
Buhrich and Judd (1997) warn that people living with HIV/AIDS can become psychotic with mood elevation, disinhibition, insomnia and delusions of grandeur or paranoia. Such disturbing change in behavior is described in a personal account, which has been described as a temporary psychotic experience due to HIV infection. The author (Menadue, 1998: 210) had been admitted for Pneumoncystis carinii Pneumonia with a T cell count of below 200. This placed this individual in a high risk for further opportunistic infections.

"Lying in bed at night I remembered hearing lots of banging and thumping happening in the room opposite. It later turned out to be just a noisy pan room but at the time I decided I was opposite a morgue where all the bodies were being dragged during the night. I pictured the corridors awash with blood with the nurses trying to cope with all the death and mayhem about them. The worst aspect of this was that somehow I was the cause of all this. I could put the curse of death on people just by looking at them. Obviously the hospital would have to get rid of this horrible agent of death who had appeared in their midst, this patient whose very presence was somehow causing others to depart the mortal coil. In the middle of the night three or four nurses would be standing around my bed and I would be wondering which one of them was hiding the hypodermic which was going to be used to get rid of me and allow the hospital to go back to more normal, peaceful times."

Delirium and dementia
Delirium is associated with increased morbidity and is seen in advanced stages of AIDS in between 30 to 65% of patients. Common causes of delirium include infection, CNS complications from opportunistic infection, high grade fevers, hypoxia, metabolic disturbances as well as fluid and electrolyte imbalances (Goldenberg & Boyle, 2000).

AIDS dementia complex (ADC) is diagnosed on the basis of clinical presentation and manifests in disorientation, memory loss and occurs in people who are severely imuno-compromised. Studies have reported a history of depression (Stern McDermott & Palumbo, 2001) or mania (Mijch et al., 1999) as a risk factor for ADC.

Sexual health teaching

As health professionals, mental health nurses are well placed to provide sexual health teaching to people with mental illness. We need to be well informed, be reflective of our own beliefs concerning the boundaries of human sexual expression and above all be non-judgmental of other people's ways of expressing their sexuality.

Education has been a sound preventative health strategy within the Australian response to HIV. Education, until recent times, seems to have resulted in the reduction of reporting of new cases of HIV infection within the Australian state of Victoria. There would appear to be some problem with current community health education because of the recent rise in new HIV infections. Sexual health teaching should form the part of the nurse's role. This education needs to contain the essential health teaching messages required to effect change in health belief and practice concerning safe sex and safe drug use but be developed to meet the needs of the target group. In this case those with mental illness.

HIV prevention and health promotion should be designed to assist participants in developing and following a sound sexual health plan. Sessions should promote group discussion, spark group role-plays and engage participants in cognitive rehearsal and guided exercises designed to encourage healthy choices about one's body and sexuality.

The use of humor when delivering health teaching should be encouraged. A well remembered antidote is that of a co-worker who was working with a group of women and attempting to empower them to insist that their partners use condoms. One woman advised that her partner could not use condoms as he was anatomically too well endowed. The group leader went to the vegetable basket and procured the largest zucchini she could find. She then proceeded to roll the condom onto the vegetable amidst squeals of laughter. This resulted in the participant's reflection that she would inform her partner that she had seen one rolled on a large vegetable and it would certainly fit on him.

Sexual health issues are sensitive in most individuals and some may not feel comfortable addressing such issues in a group. For example, it may be appropriate to run separate groups that are gender segregated. From a male perspective, condoms are often disregarded because of past experiences. Point out that all male genitalia come in differing shapes and sizes and that is why condoms do as well. Get them to consider experimentation and the use of self exploration alone when using condoms. If they feel comfortable with using them alone they will be more likely to use them with a partner.

Some recommendations for content would include a general overview of HIV and AIDS with discussion arising as to safe sex practice and risk assessment. Content should also include safe drug use and keep in line with harm minimisation approaches. Discussion of general attitudes to HIV positive individuals should be included. Most importantly, there is a need to include barriers to communication in health teaching and assist the individuals to practice introducing the topic of condoms with a partner. This is particularly important if the individual has been in a long term relationship and practiced unsafe sex without their partner knowing. It is very difficult for people to introduce condoms into a relationship that has not previously used them. In addition resources and counseling re the benefits and risks of HIV testing should be addressed.

It must be acknowledged that the content required to adequately cover safe sex issues and HIV could not be met in a single group. Rather a series of groups is recommended with one to one follow up of individuals requiring further health teaching or debriefing. So too, certain patients will not respond or participate within a group environment and should be followed up individually. Should the health care service make provision for case management, this may be an appropriate health teaching plan for the case manager to raise with the patients.

Conclusion

As a nation Australia has responded well to the onset of HIV, recognising it as a potential health risk in the mid 1980s and responding with health promotion campaigns, funding services for prevention and support services to those who were infected. So too, Australia can be commended for its work with high-risk groups and providing the necessary funding for these groups to respond to the crisis within their community. We have sound models of community intervention and primary health care initiatives arising from the state AIDS councils and groups such as People Living With AIDS (PLWA).

Health teaching messages concerning HIV prevention need to be reviewed in response to the recent increase in new HIV infections. We live in a time when AIDS is part of our social life. It has changed the way we develop relationships and express our-selves sexually. However in the third decade of AIDS we have become complacent and accepted this virus as part of life. Just as long as it is not part of our own lives.

HIV is an enormous hidden problem within our community and the health care service we work within. Much work is required. We need to conduct research, inform academics of the need for this content within curriculums, review our assessment procedures, review our health teaching practices, involve mental health consumers and make room for group work concerning sexual health on the day program agenda. The increasing prevalence of AIDS and resulting morbidity within populations of people experiencing mental illness demands that mental health clinicians respond to the level of HIV infection amongst those we care for. This paper calls for individual nurses to consider their practice and how they can make a significant contribution.

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