MHR-MAIDS

Mental HealthReforms Special issue: > Mental Health and HIV/AIDS: A Challenging Combination

A Global Initiative on Psychiatry publication

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No. 1

Contents

Foreword

Editor Ellen Mercer

Robert van Voren, Chief Executive, GIP

Editorial Board Katja Assoian Elena Mozhaeva Julia Szanton Robert van Voren Graphic Design www.bade.nl Printing Klomp grafische communicatie

GIP Policy Paper on Mental Health and HIV/AIDS

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Addressing the Mental Health Difficulties of People Infected and Affected with HIV

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Mental Health Reforms is a publication of Global Initiative on Psychiatry (GIP).

Melvyn Freeman, WHO Consultant, South Africa

While MHR is distributed free of charge, we are dependent on your support to sustain the journal. Contributions are therefore welcome and may be made to:

GIP’s Mental Health and HIV/AIDS Project in Southeastern Europe, Caucasus and Central Asia

ABN AMRO Bank ’s Gravelandseweg Branch Hilversum, The Netherlands BIC: ABNANL2A Euro account:62.07.29.074 IBAN: NL16 ABNA 0620 7290 74 USD account: 62.07.29.244 IBAN: NL82 ABNA 0620 7292 44

Katja Assoian, Project Manager, GIP-Hilversum

To request additional copies please contact:

GIP-Tiblisi & Violeta Andjelkovic, IAN-Serbia

Global Initiative on Psychiatry P.O. Box 1282 1200 BG Hilversum The Netherlands

Mental Health and HIV/AIDS in Uganda: The Experience of the Kamwokya Community in Uganda

Tel.: +31 35 683 8727 Fax: +31 35 683 3646 e-mail: hilversum@gip-global.org www.gip-global.org

Godfrey Mabiriizi, Kamwokya Christian Caring Community,

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Qualitative Studies on the Mental Health of People Living with HIV

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Uganda

The Role of Russian Addiction Psychiatrists in the Prevention and Treatment of HIV Infection

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Dr. Sergey Koren, AFEW & Dr. Natalia Dolzhanskaya, National Research Center on Addiction, Russian Federation

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Katinka de Vries, Research Consultant, Jana Javakhishvili,

Russian Summaries

Cover photo: Dr M. Dodarbekov, doctor of ARV therapy at the Republican AIDS Center in Tajikistan speaking with a person living with HIV about treatment options and mental health issues.

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This issue of Mental Health Reforms has been funded in part by The Netherlands Ministry of Foreign Affairs and The Open Society Institute through their funding for the Mental Health and HIV/AIDS (MAIDS) project.

March 2008 The opinions expressed in this publication are the sole responsibility of Global Initiative on Psychiatry or guest authors. Articles may be reprinted only with the prior approval of the author(s).

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Foreword

Discussion during a break in the GIP conference on mental health and HIV/AIDS held in November 2007.

Dear Readers, It is with great pleasure that I introduce this issue of Mental Health Reforms on the theme of linkages between mental health and HIV/AIDS, a subject so often overlooked by health professionals and policymakers and among those involved in development policy.

The HIV/AIDS pandemic is taking a huge toll on people and societies across the globe. While praiseworthy efforts in prevention and treatment have dramatically increased in recent years, they are still far from sufficient. These efforts have often failed to explore the important consequences of the pandemic on the mental health of HIV positive and affected individuals and how this may further fuel poverty, stigmatization or the pandemic itself. The particular risks of HIV for people with mental health problems and the marginalization of such individuals in society need to be addressed.

GIP held an international conference on this topic in November 2007 (see page 9) that resulted in a greater shared understanding of the complex relations between mental health and HIV/AIDS among experts and practitioners from different parts of the world. The articles in this issue further show how various organizations in Africa, Eastern Europe and Central Asia are addressing these associated problems. We are also including an article on the closely related problem of substance abuse.

The international nature of the conference and this issue of Mental Health Reforms reflects GIP’s increasing involvement in mental health issues and projects beyond its core region of Central & Eastern Europe and the Newly Independent States. We look forward to including more articles on our activities in new regions in the next issues of the journal.

On another note, starting in 2008, we have decided to eliminate the option of paid subscriptions to Mental Health Reforms. From now on, Mental Health Reforms will be available freeof-charge in print and in electronic form on our website (see www.gip-global.org). However, keeping a journal going is a costly and time-consuming affair and, therefore, your financial support and/or suggestions for future funding of the journal are extremely welcome.

Robert van Voren Chief Executive, GIP

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GIP POLICY PAPER: Mental Health and HIV/AIDS

The following is a summary of GIP’s policy paper on Mental Health and HIV/AIDS:

Persons with HIV/AIDS who suffer from mental health consequences of the infection are, in fact, double victims. Almost invariably stigmatized because of the disease, they have to deal with the trauma of carrying a potentially fatal illness and having to face an environment that fears losing them in the relatively near future. The combined burden often leads to individuals being excluded from employment, thereby increasing their risk of poverty and further marginalization as well as the economic burden on society.

Mental health problems can affect anybody, but it seems that people with HIV are more likely to experience a range of mental health problems. It is estimated that before anti-HIV treatments became more widely used, 7% of people with advanced HIV infection would develop dementia. Particular events such as receiving an HIV diagnosis, bereavement, the breakdown of relationships, financial or work problems, or dealing with side-effects of treatment can result in feelings of deep unhappiness which are difficult to manage and interfere with the ability to function in daily life.

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Depression is twice as common in people with HIV as in the general population. Some anti-HIV medications can cause psychological disturbances in that individuals have difficulty sleeping, or experience vivid dreams or nightmares. Other people have reported depression without any other apparent cause.

In addition, there are several neuropsychiatric complications associated with HIV infection.

Central to an understanding of the person with HIV who seeks mental health services is an understanding of the concept of stigma and its corrosive and debilitating effects. HIV related stigmatization constitutes an epidemic in itself – an epidemic of fear, prejudice, and discrimination. The fear of being stigmatized keeps many from seeking services and can prevent many clients from remaining in treatment or adhering to a treatment regimen. The feelings resulting from stigmatization may include fear, shame, distrust, rejection, exile, guilt, isolation, hopelessness, helplessness, alienation, lack of self-worth, powerlessness, and aloneness.

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Participants in the first «Mental health and HIV/AIDS awareness» training in Tajikistan in April 2007 involving specialists from the government and HIV/AIDS NGOs.

Developing expert centers that highlight the theme of mental health and HIV/AIDS and engage in a wide range of activities strengthens the participation of those living with HIV in their societies, helps defend their interests and counters stigmatization. Prevention programs within mental health institutions and improved training of personnel and patients on the interaction between mental health and HIV/AIDS will diminish the spread of HIV/AIDS.

Position Statement: Global Initiative on Psychiatry supports efforts to improve the quality of life and to diminish the suffering of people with HIV/AIDS. GIP strives for increased knowledge in the field of mental health and HIV/AIDS and works towards a comprehensive system of mental health assistance to people affected by HIV/AIDS. Furthermore, GIP supports efforts to increase understanding of the general public and to decrease stigma associated with mental illness and HIV/AIDS.

Addressing the Mental Health Difficulties of People Infected with and Affected by HIV It has become common in countries where there is a high HIV prevalence to stress that everyone is either infected with or affected by the virus. Affected people include: •

carers of ill individuals

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people who have had others close to them die as a result of AIDS

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family members who are experiencing economic loss as a result of the virus (for example through the loss of a breadwinner or through costs related to medication or paying for transport to get treatment)

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children who are orphaned or otherwise made vulnerable as a result of HIV/AIDS

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From a mental health perspective, it is similarly not just infected individuals who may experience mental health problems as a result of the epidemic - though certainly many infected people do indeed experience difficulties - but many others as well. Nonetheless in most countries, especially in low and middleincome countries, the mental health impacts resulting from HIV are invariably not dealt with at all. In this article, we will look firstly at some of the inter-relationships occurring between HIV/AIDS and mental health in people living with HIV as well as those affected by the disease. We finally look at a few ideas of what can be done to assist people who may experience mental health problems in the face of HIV/AIDS.

People Living with HIV/ AIDS (PLHIV) Almost all studies that have researched the prevalence of mental disorder in PLHIV have found considerably higher levels of mental disorder in the infected group than in the general population. While the exact extent of these differences varies across situations

M. Freeman speaking at the GIP conference on mental health and HIV/AIDS held in November 2007.

other friends, employers, etc.

it seems that PLHIV are at least twice as likely to have a mental disorder than people who are not affected. Why should this be the case? The following diagram shows that mental health is almost certainly both a precursor to HIV/AIDS (i.e. exists before the infection and is an important risk factor for contracting HIV) or is a direct consequence of HIV.

Mental health status and behavior affect infection rates

Serious mental illness such as schizophrenia or bi-polar disorder are risk factors for contracting HIV for reasons such as poor judgement which may lead to unprotected sex, sexual abuse of mentally disabled people, prevention messages not being integrated and sometimes people with mental disorder having multiple sex partners. In the USA, people with serious mental disorders are as much as 20 times more likely to contract HIV than the

Mental health status and behavior affect the course of the disease

HIV/AIDS Status Mental health as affected by HIV and HIV as affected by mental health as exemplified by poor adherence to medication, etc.

HIV/AIDS affects the Central Nervous System e.g. dementia

Positive HIV status has psychological and behavioral impacts

Certain medications used for AIDS treatment have negative mental health side effects

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general population. More “common” mental disorders such as depression are also risk factors in that people who care little about or even dislike themselves are less likely to take necessary precautions to protect themselves from infection. People with substance abuse disorders are also more likely to indulge in risky sexual behaviors.

Once a person has contracted the virus, there are various ways his/her mental health can be affected. In the same way that the virus attacks other parts of the body, it can also attack the Central Nervous System.

This can result in disorders such as dementia and even, in the late stages of AIDS, psychosis. Though more research is needed, it is likely that depression may also be a direct biological result of the viral infection.

In addition, receiving a diagnosis of depression and then living with the disease is highly stressful for most people and, in some instances, may result in full blown mental disorder.

Depression, anxiety disorder and post traumatic stress disorder have all been found to be high in PLHIV. Most people experience shock when first being told they are positive. In situations where people are stigmatized and discriminated against and where they do not have strong support from family and friends, their mental health may especially be affected. For a number of people, particular events, such as a drop in CD4 count, the development of AIDS symptoms and others dying as a result of HIV, seem to exacerbate poor mental health. Many people who are taking anti-retroviral treatment and may no longer fear imminent death still

on a few individuals who may find it extremely difficult to cope on top of other responsibilities. At times, family members are forced to give up employment to look after an ill family member or members. In some cases, where there are no adults available to look after ill individuals, children have to give up school to look after parents. In some instances, children may even be forced to go out and work to keep the family alive. “Normal” child activities and development may be delayed to accommodate the immediate family need. This can have longer term detrimental psychological consequences as well as putting tremendous stress on the child. Moreover, for any carer the notion that the person they are caring for may soon die increases the strain. It is true that, in many respects, caring for a person who has AIDS may be no different from caring for a person with any other terminal illness; however, in these cases, the person needing care is often young, there may be more than one person needing care, and the carer may not be receiving much general support because of the stigma associated with HIV/AIDS.

experience mental health problems.

Living with HIV and having to make decisions around issues such as relationships, whether to have children and so on, tend to still cause high stress for PLHIV. At the same time, poor mental health will often, in turn, have detrimental impacts on a person’s physical health. For example, a person with poor mental health status is less likely to adhere strictly to their medication regime, including their anti-retroviral medication, than a person who is feeling mentally well. Not taking medication is likely to lead to relapses and deterioration in one’s HIV/AIDS status. Poor mental health may also lead to behavior that results in the person re-infecting themselves or even infecting others.

Mental Health Impact of HIV/AIDS on People Who May Not Themselves be Infected Carers Caring for a person who is ill with AIDS related illness can be extremely mentally stressful. Moves to “home-based” care for people suffering from AIDS is certainly humane, in that ill people can be surrounded by their families and community and there is reduced strain on already overburdened health facilities. On the other hand, it adds to the burden, including the mental burden, of often overstretched household members.

Due to the “clustering” of HIV, a number of family members may be infected and care-giving might fall

The Bereaved

A drawing by Joel Chikware.

Reproduced from the Mental Health and HIV/AIDS: Basic Counseling Guidelines for Antiretroviral (ARV) Therapy Programmes published by the WHO in 2005.

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All societies have to cope with death and there are different cultural rituals that support the bereaved. However, when deaths are occurring at a rapid rate and are occurring within the young and economically productive age group, the “normal” bereavement processes can break down or may be forced to change.

Of course, wars also take large numbers of young lives and those left behind must also find ways of coping; however, often communities find meaning in war deaths and gain strength from this meaning. In contrast, with epidemics like HIV it is very difficult for people to find meaning and the bereavement is sometimes entwined with feelings of blame and guilt.

Given the large numbers of people dying in certain communities, a bereaved state becomes an almost constant state of being. Before a person can adequately recover from one death they may be forced to cope with another. This can become psychologically overwhelming to some people and

A drawing by Joel Chikware.

Reproduced from the Mental Health and HIV/AIDS: Basic Counseling Guidelines for Antiretroviral (ARV) Therapy Programmes published by the WHO in 2005.

seriously interfere with their ability to “work and love” - which are perhaps good indicators of mental well-being.

Some people probably defend against this feeling of “over-grief” by “undergrieving.” In other words, they cut off their feelings of grief to allow themselves to cope. This may also mean cutting themselves off psychologically from the ill person even before they die. HIV/AIDS hence forces a “dehumanization” of people from their deep feelings towards others in order to protect themselves from being overwhelmed by their feelings. This is not good for mental health.

Children Orphaned by HIV/AIDS UNICEF has estimated that by 2010, 20 million children under the age of 15 will have lost one or both parents – mainly to AIDS. Moreover, given the nature of HIV transmission, both parents may be infected and many children will become “double orphans.” Children will not only have to endure the pain and loss of losing a parent, and possibly have to face stigma as well, but will have to survive without the emotional support of their parents. Many children will be accommodated within extended families or will be taken in by families who are able to love and support them psychologically; but due to the numbers of people dying of AIDS, many extended families will be unable to take in orphaned children. Even if families

do care for these children, they may be too stretched to give them the emotional nourishment and guidance that they need in growing up.

This may have immediate as well as longer term emotional consequences for them. Some children will find that they have nowhere to go and even sometimes have to look after their younger siblings.

A number of studies have already shown that children orphaned

by AIDS were more likely to report depression symptoms, peer relationship problems, posttraumatic stress, delinquency and conduct problems than those orphaned by other causes and nonorphaned children. AIDS-orphaned children were more likely to report suicidal ideation.

Health Workers The stress suffered by health workers in trying to deal with the large numbers of PLHIV is often underestimated. This stress is the result of the additional work load as well as dealing with so many very ill people and seeing many people die. (It must be remembered that in most countries where HIV is most prevalent, the availability of antiretroviral therapy is low – only around 17% of those in need of treatment in sub-Saharan Africa receive it). In one study, over 80% of health workers working with PLHIV showed symptoms of mental disorder.

Some Areas Where Mental Health Interventions are Possible Mental health care needs to become an integral part of all HIV/AIDS treatment and care programs. Similarly HIV/AIDS related issues should become part of all national mental health programs around the world.

Almost all countries offer voluntary counseling and testing (VCT); however, psychological issues are generally not addressed well. VCT counselors should be given far better training in this regard and followup counseling should be provided for people who want it. If a person receives only one session in which a positive result is given, it is unlikely to adequately assist the person deal with difficult psychological issues.

Thus, where needed, the individual should be referred to mental health services. Support groups that deal with emotional issues can be extremely helpful for PLHIV and also for other groups that may require psychological assistance, such as carers, bereaved people, orphaned children and even health workers. In addition, given that poor mental health affects adherence to medication, mental health interventions also need to become part of all anti-retroviral therapy (ART) adherence programs.

Many countries are now starting to provide support for orphaned and vulnerable children. It is essential that psychological assistance be included where needed. However, sometimes finding a child a good home may be far preferable to providing them with counseling. Options for how this could be achieved need to be carefully examined.

Finally the best way to stop mental health problems fueling HIV is to make sure that adequate mental health services are put in place for everyone and the best way to ensure that HIV/AIDS ceases to increase mental health problems is to prevent the spread of HIV/AIDS!

For more information, contact: Melvyn Freeman Consultant to the WHO on Mental Health and HIV/AIDS, South Africa e-mail: mfreeman@telkomsa.net

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GIP’s Mental Health and HIV/AIDS Pr in Southeastern Europe, the Caucasus and Cen

The countries of Southeastern Europe and the Newly Independent States are experiencing one of the fastest-growing epidemics of HIV/AIDS in the world. Average overall infection rates are still low, but rates are particularly high among vulnerable groups. These rates threaten to escalate into a fullscale epidemic unless urgent action is taken now. The severity of HIV/AIDS, in spite of the recent innovations in treatment, often leads to serious mental health problems among those infected as well as among their “significant others” (carers, relatives). In addition, persons with mental illness or a mental handicap run additional risks of becoming infected.

While the relationship between HIV/AIDS and mental health problems is often overlooked in these regions, a number of mental health problems have been identified as associated with HIV, including high rates of suicide,

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depression, alcoholism and other forms of substance abuse. People who have such co-existing problems may have difficulties accessing and adhering to HIV treatment and care. They likewise face multiple types of stigma related to their HIVstatus and mental illness. Mental health care is still the responsibility of large institutions that are poorly resourced and poorly prepared to meet the needs of people with both mental health problems and HIV. There is, therefore, an urgent need to address the powerful interaction of these two problems in these regions.

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NGO participants in a Georgian Mental Health and HIV/AIDS training working on a small group exercise.

Drug use, sex work, human trafficking and migration are common in the region and play a major role in spreading the virus. Although governments in the targeted countries in the region guarantee a wide range of free services for PLHIV, these services are compromised by insufficient quality of services, a lack of confidentiality, and widespread discrimination and stigma.

The lack of effective referral systems or collaboration between infectious control, drug treatment and psychiatric services reduces possibilities for people facing both HIV and mental health problems to

oject ntral Asia

The Mental Health and HIV/AIDS (MAIDS) Project

> “Before (a MAIDS training),

Since 2005, Global Initiative on Psychiatry has been running a major project aiming to improve the quality of life of people with HIV/AIDS who also face mental health problems as well as their partners, carers and families - in Southeastern Europe, the Caucasus and Central Asia.

This program has been funded by the Dutch Ministry of Foreign Affairs and the Open Society Institute.

I didn’t know how to behave with HIV positive people. They were unacceptable to me. But after the training I learned many things and now know how to behave.”

Female Psychologist, Addition Clinic, 31 years old (Georgia)

GIP’s MAIDS project has involved the establishment of a network of expert centers focusing on the interaction of mental health and HIV/AIDS in 9 countries: Armenia, Azerbaijan, Georgia, Kazakhstan,

> “When a HIV+ person is

delivered to our hospital, everybody hears about it immediately.

We provide treatment but try to discharge him/her from hospital as soon as possible. People in the department panic and the nurses are afraid to put in an IV. I suppose that this is caused by a lack of knowledge about HIV. Moreover, drug addicts are inadequate and troublesome people.”

>

Psychiatrist, 34 years old (Kazakhstan)

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obtain effective medical care for these problems; follow-up is also poor.

Kyrgyzstan, Tajikistan, Bulgaria, Moldova and Serbia. The network of expert centers strives to increase awareness of the interplay between mental health and HIV/AIDS, and promotes a comprehensive system of mental health assistance to people affected by HIV/AIDS. Furthermore, it supports efforts to increase understanding among policy makers and health professionals as well as decrease the stigma associated with mental illness and HIV/AIDS. It encourages health and social services, community-based services and other interested groups to expand and strengthen their capacity to provide culturally appropriate and competent mental health services for people with HIV/AIDS and their carers and families. To achieve these aims, the expert centers conduct research into mental health issues associated with HIV/AIDS, train professionals, and develop and implement anti-stigma and informational programs for professionals.

The project is innovative in many ways. First of all, it deals with issues that have typically been overlooked in the regions. Moreover, the notion of a multi-disciplinary expert center for a specific issue that brings

together expertise and functions as an engine for practical interventions and as a knowledge center is new for the regions. It is a pragmatic solution to a situation where interaction between the relevant disciplines is limited, effective collaboration is difficult without a constant stimulator and existing structures are often too bureaucratic to take decisive and quick action.

The project targets a group of people (so called change agents) who can take the lead in bringing about the changes envisaged by the project overall. These individuals include the staff of expert centers, but also people living with HIV/AIDS (PLHIV), doctors, nurses, psychologists, other medical professionals, people with mental health problems, injecting drug users (IDUs), social workers, policy makers, leaders, prison staff, journalists, NGOs and others with the desire and ability to bring about improvement in this area.

People living with HIV/AIDS and their relatives and carers are involved in all expert center activities. Their participation in research, training and the publication component of the project has been crucial to the success of the program.

Closer contact with direct beneficiaries enable expert centers to advocate for better mental health of PLHIV. Their involvement has also helped to empower them by building self-esteem, decreasing isolation and enabling greater openness about their HIV status.

MAIDS Experiences and Achievements While it may be too early to judge the full impacts of the MAIDS expert centers as most have only been in existence for approximately 1.5 years, there are strong signs that creating a specialized institution on this subject and building a group of

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Discussion led by the host of the Georgian TV show “Naniko’s Show”, after a woman living with HIV disclosed her status and told her story.

local people who are experienced in this area is a useful way of promoting recognition of and changes in approach to the dual problems of mental health and HIV/AIDS. Each expert center has established a team of professional trainers with sufficient experience and knowledge to prepare other trainers on mental health and HIV/AIDS related issues. A critical mass of trained change agents has been formed in each country. The design of the training program (consisting of 4 training modules) has also permitted MAIDS trainers from different countries to regularly exchange experience and best practices.

Given the often hidden nature of the combination of mental health difficulties and HIV/AIDS, research is an important way to bring about better understanding and increased recognition of the problem. Eventually, research in this area should assist in improving care policies and systems.

> “I did not tell my relatives,

the doctor told them. My brother called my father and said: “She’s got HIV. Take her child away from her.” My father did not talk to me even by telephone for a month and a half. It was a major problem to deal with him.

In the family they made me eat separately and until I brought them some brochures to read about this infection, they washed the dishes and the bathroom with chlorine. Everything was resolved.

I was frustrated and upset with them because they did not want to understand my problems.”

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Female, 25 years old (Kazakhstan)

While generating information and expertise around the issue of mental health and HIV/AIDS, expert centers share this information with professionals and the general public through publications in scientific and popular magazines, newspapers, bulletins, pamphlets and websites. The Kyrgyz expert center, for example, publishes its own magazine devoted to different problems related to mental health and HIV/AIDS. Expert Centers also organize roundtable discussions, debates, conferences and campaigns with relevant stakeholders to try to achieve change in relevant national policies.

One example of success in the policy arena was the Armenian expert center’s input into the newly approved Armenian Government’s National Program on Response to the HIV Epidemic 2007-2011, which resulted in a recommendation to implement HIV/AIDS prevention projects among people with mental health problems. The Azeri expert center has prepared a proposal to include mental health and create a referral system for those with dual diagnosis into the National Strategic Plan on HIV/AIDS Prevention.

This proposal met with positive responses from the organizations responsible for developing this document. The Kazakh expert center successfully lobbied for the recognition of the mental health problems of PLHIV among different

stakeholders. The importance of these problems has been recognized by the Republican Center for AIDS Prevention and Control as well as Republican Center on Psychiatry, Psychotherapy and Narcology. The memorandum for further collaboration was signed between the EC and these institutions.The Serbian expert center supported the establishment of PLHIV associations and creating of Network of Associations, which is a big step towards stronger advocacy for the rights of PLHIV community. Another success of the expert centers in Georgia, Moldova and Serbia has been the accreditation of the MAIDS training modules by national ministries.

Over the next period, MAIDS expert centers will further deepen their partnerships with organizations working with specific groups affected by mental health and HIV/AIDS related issues and with relevant ministries and donors. As initial funding for the MAIDS project comes to an end in December 2008, the main challenge for the expert centers will be to find continued funding for their work.

For more information, contact: Katja Assoian, Project Manager, Mental Health and HIV/AIDS (MAIDS) Project, GIP-Hilversum, The Netherlands e-mail: kassoian@gip-global.org

AN INTERNATIONAL CONFERENCE “Double Stigma – Double Challenge”: Putting Mental Health and HIV/AIDS on the International Agenda these issues higher on national policy agendas, and succeeded in training professionals and conducting important research in this area.

The conference was further enriched by the participation of Godfrey Mabiriizi of the Kamwokya Christian Caring Community in Uganda and Sergey Koren from AIDS Foundation East-West in Russia, both of whom spoke of their perspectives on the way mental health problems and HIV play out in the communities in which they work.

On 9 November 2007, GIP hosted an international conference by this name in The Hague. The conference, funded

by The Netherlands Ministry of Foreign Affairs and The Open Society Institute, brought together experts and practitioners from Africa, Central Asia, the Caucasus, Southeast/Central Europe and Western Europe to discuss the complex and often neglected interplay between HIV and mental health.

The introductory presentation by Dr. Vladimir Poznyak of the Dep’t of Mental Health and Substance Abuse of the

World Health Organization (WHO) set the stage for the day’s discussions by highlighting the global nature of the problem. Professor Melvyn Freeman, a WHO expert from South Africa, then spoke about the need for expanded mental health care in the face of HIV/AIDS in Southern Africa.

Presentations from the Directors of the Mental Health and HIV/AIDS Expert Centers in Serbia, Georgia and Kyrgyzstan shared ways in which GIP’s Mental Health and HIV/AIDS (MAIDS) project in nine countries of the region has moved

What emerged from the discussion was a sense that good mental health care and support for people living with HIV/AIDS is essential both in improving the lives of people living with HIV and in helping to prevent further spread of the pandemic.

However, most countries represented at the conference appeared to face a lack of understanding of these linkages at all policymaking levels and among mental health professionals, HIV/AIDS specialists and the broader health community.

The conference has generated a core group of people who wish to share information and ideas on how to improve mental health care in the context of HIV prevention, care, and treatment, how to improve HIV prevention, care and treatment in mental health systems, and how to better link the two fields. It has also sparked a number of new initiatives for which funding is sought.

A DOCUMENTARY “A Double Stigma: Mental Health and HIV/AIDS in Tajikistan” In the summer of 2007, the documentary photographer and filmmaker, Harrie Timmermans, traveled to Tajikistan to film the complex links between burgeoning numbers of HIV and AIDS cases and the mental health issues this situation is giving rise to in the country.

The 24-minute documentary, first shown at the international conference “Double Stigma-Double Challenge”:

Putting Mental Health and HIV/AIDS on the International Agenda, gives a human face to these issues that resonates in many other countries of the world.

For copies of the documentary, please contact GIP-Hilversum by mail or at hilversum@gip-global.org or tel. +31 35 683 8727/fax: +31 35 683 3646

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Qualitative Studies on the Mental Health of People Living with HIV

The complex needs of individuals with a combination of mental health problems, substance misuse, medical conditions and social disadvantage constitute a major challenge for mental health and HIV/AIDS professionals alike in delivering appropriate services for people living with HIV (PLHIV).

There is a clear need for improved advice, professional and personal support, supervision, professional development and clearer guidelines on roles and responsibilities.

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To contribute to an evidence base for improving interventions for better mental health of PLHIV, small research teams have been established in the nine GIP expert centers (in Moldova, Serbia, Bulgaria, Georgia, Kyrgyzstan, Kazakhstan, Tajikistan, Azerbaijan and Armenia) in the context of GIP’s Mental Health and HIV/AIDS (MAIDS) project. The teams were asked to use qualitative research methodology and, in particular, focus group

A small group session focusing on supporting people living with HIV/AIDS with special needs.

> “In the beginning, depression

was dominant. It brought unbelievable despair and questioning of what I am going to do.”

Male. 41 years old, (Serbia)

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Areas of concern include: • accurate ongoing diagnosis of HIV related medical and psychiatric conditions; • coordinated treatments, taking account of drug interactions; • reduction of stigmatization and discrimination of PLHIV; • accurate adherence to treatment regimens, especially during periods of acute psychiatric or medical illness; • provision of a continuum of care involving collaboration across the full range of service providers in the mental health and the HIV/AIDS fields; • maintaining good mental health of PLHIV and their relationships with the informal support systems (families and partners and friends); and • regular, consistent contact by the PLHIV user with mental health care services to enable continuous assessment and review of needs.

discussion methodology. There are both conceptual and practical reasons for using qualitative research.

The primary conceptual reason is that it creates greater depth of responses, and therefore greater understanding than can be acquired through quantitative techniques.

Qualitative research is a good tool to generate intervention ideas and this was one of the main objectives of the research component of the MAIDS project.

Gathering data through focus group discussion, if applied well, is a cost effective method to gather a wealth of data in a relatively short time span (around one to two weeks). Traditionally, research in the region has been very much quantitative and statistics based.

To support the researchers in their assessment, a compilation guide on qualitative research methodology and focus group discussion was developed and translated into Russian by GIP.

Definitions Qualitative research: Qualitative research offers specialized techniques for obtaining in-depth responses about what people think, how they feel and how they act. The two primary qualitative research techniques are individual in-depth interviews and focus group discussions. It differs in approach from quantitative research which relies on numerical data and statistical analysis.

Focus group discussion: A focus group discussion (FGD) is a loosely structured discussion among six to ten individuals that is used to gather information on a particular research or program topic.

A moderator, who guides the discussion, encourages participants to talk freely and reveal their thoughts and feelings about the research topic. FGDs are repeated with several groups of similar makeup until the discussions no longer reveal anything new and relevant to the research.

[Source: Adapted from Debus, M. (1998). Handbook for excellence in focus group research. Washington, DC: Academy for Educational Development.]

The goals set out for the research were: • to increase knowledge on the mental health problems associated with HIV infection in the contexts of 9 different countries; • to determine the needs of the affected populations including assessment of the mental health services available; and • to contribute to the evidence base to permit more effective interventions.

The specific research assessment objectives include: • to determine the forms, reasons and contexts of mental health/HIV problems in each country studied; • to gain insight in the quantity, quality and gaps in psychosocial care and support services available as perceived by users and service providers; • to identify realistic and cost effective entry points for interventions to reduce mental health/HIV related problems; and • to disseminate recommendations among policy makers and other stakeholders.

The assessments focused on the following areas: • mental health services (psychosocial support & care services) for PLHIV; • counseling services for PLHIV; • stigmatization and discrimination of PLHIV; • mental health problems among PLHIV with special emphasis on those in prisons and among injecting drug users.

People reviewing MAIDS research reports at GIP’s Mental Health and HIV/AIDS Conference in November 2007.

In addition, the research teams engaged in a preliminary stakeholder analysis and ongoing review of information in the area of mental health and HIV/AIDS. In total, twelve studies have been completed. Below are some of the summarized results of the first series of assessments, conducted

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“At first I was angry with the person who had infected me. He knew about it but had not warned me. I was ready to slit my wrists.

But now I think I should use more heroin as long as I can, because there’s no difference between dying of an overdose or of AIDS.” Male, 38 years old, (Kazakhstan)

in 2007 and early 2008 in the South Caucasus countries and in Serbia.

Research Results: According to the research results, the mental health policies and corresponding services are still underdeveloped in spite of the recent mental health care reforms.

By comparison, relevant legislation, services and coordination in the HIV/AIDS field are much more developed due to the support of the Global Fund and other international organizations. There is a lack of coordination and, therefore, an underdeveloped referral system between the mental health and HIV/AIDS fields.

Mental Health Problems of PLHIV in South Caucasus (Armenia, Azerbaijan and Georgia)

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The assessment research activities under the MAIDS project have mainly focused on studying the availability and quality of counseling and other services for PLHIV and assessments of mental health problems as experienced by PLHIV who inject drugs as well as PLHIV who are incarcerated.

Most PLHIV participating in the study experienced some form of mental health problem. The initial stage of adjustment to the diagnosis is characterized by “shock” accompanied by anxiety, fear of death, feelings of guilt, depression, and suicidal thoughts. This state can last for a few months. More severe mental health problems can occur in the AIDS stage, where organic manifestations of the disease can cause psychosis or cognitive impairment.

According to study results obtained in Georgia, more acute mental health problems are experienced

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among PLHIV who inject drugs.

However, in Armenia, injection drug users (IDUs) appear to adjust more easily to the diagnosis due to the provision of services that educate them to the risks they take due to drug use and therefore “prepare” them better for a positive diagnosis. In Azerbaijan, the triple stigma associated with HIV/AIDS, mental health and intravenous drug use is the main obstacle for development of appropriate services for PLHIV who inject drugs.

HIV/AIDS counseling services are not equally developed in the South Caucasus. In all three countries, both pre-test counseling and posttest counseling do not fully meet required standards. In all countries, there is an urgent need to develop a more efficient system of education and supervision for counselors.

Stigma and Discrimination Assessment Conducted in Serbia

> “When I told my doctor

Male, 46 years old (Bulgaria)

The factors that prevent PLHIV from adjusting to their diagnosis are similar in the Caucasus; lack of knowledge about the disease among PLHIV (need to learn how to cope) and societal stigma and discrimination at all levels, including among the general population, workplace, medical services, etc.

PLHIV indicate that they experience the most stigma and discrimination from health care providers (other than HIV professionals) with whom they have frequent contact. The factors facilitating adjustment to the diagnosis differ slightly by country.

The need for proper professional assistance from mental health professionals was indicated in Georgia. In Armenia, PLHIV preferred support from family members and friends and, in Azerbaijan, PLHIV emphasized the need to develop a less stigmatizing approach in society as a whole. Peer support (self help groups) was equally emphasized in all three countries.

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before the surgery that I was HIV positive, he wanted me to pay him extra money because of the risk he was taking. I went to another hospital and got the surgery without telling anyone.”

The Serbian research team explored both external (or enacted) stigma and internal (or felt) stigma towards PLHIV. The main findings of the study suggest that many PLHIV anticipated or experienced discrimination in their daily lives at every level of social encounters, from relationships with close relatives and friends to bureaucratic procedures. Forms of discrimination are numerous: • denial of the right to primary and high school education • loss of employment • refusal of medical care to PLHIV • stigma in the media where events related to PLHIV are sensationalized • rejection by the family and friends • police brutality and isolation of PLHIV in prisons, as well as physical maltreatment of PLHIV. Two main causes of stigma and discrimination identified in the study are: 1) fear caused by a lack of knowledge about HIV/AIDS; and 2) dominant values, norms and moral judgments. There is a pervasive view that HIV happens to ‘others,’ along with a continuum between guilt and innocence related to “how” someone became infected. This view is very strong among medical professionals. “Internal stigma” of PLHIV is the product of internalizing shame, hopelessness, guilt, low self-esteem and fear of discrimination. This internal stigma manifests itself through fear of disclosure, social withdrawal, and selfimposed isolation, feelings of guilt and shame, and overcompensation, making attempts for them to access health care more difficult.

The media in Serbia continually portrays HIV/AIDS in a very negative and discriminatory manner.

It is often fear-based and blaming, using highly emotive language,

which exacerbates inaccurate public views of HIV and PLHIV. Examples of negative media references include: a continuous threat, a killer of our time, punishment for immoral behavior, happens to people who are ‘other,’ a horror, a war, a painful death.

There is no legislation forbidding this discrimination. The National HIV/AIDS Strategy supports programs related to care, treatment and support for PLHIV, but not much is done to implement this idea. While NGOs play a significant role in empowering PLHIV, the response to the epidemic still lacks the meaningful participation of PLHIV. Greater involvement of all levels of society with a greater role for PLHIV could give better results in response to HIV related stigma.

By mid-2008, we hope to have three to four qualitative studies finished in at least seven of the nine project countries. All GIP research teams will prepare their national compilation reports with the main results of their four assessments.

Furthermore, all GIP expert centers will conduct a national stakeholder meeting. At that gathering, the relevant key actors will discuss the results of the GIP studies and, hopefully, agree upon the main policy and program implications.

We hope that by joining forces, this endeavor will help to improve the mental well-being of PLHIV in the project countries.

For more information, contact: Katinka de Vries Research Consultant, overall research coordinator MAIDS project, Belgium e-mail: katinka.devries@skynet.be Jana Javakhishvili MAIDS Project Regional Coordinator for Caucasus and Central Asia, GIP-Tbilisi e-mail: jjavakhishvili@gip-global.org Violeta Andjelkovic Regional Research Coordinator for Southeastern Europe, IAN-Serbia e-mail: vandjelkovic@ian.org.yu

Mental Health and HIV/AIDS in Uganda: The Experience of the Kamwokya Community in Uganda Kamwokya Christian Caring Community (KCCC) is a faith based, non-governmental organization established in 1987 to mitigate the psychosocial and economic impact of HIV/AIDS in low resourced communities in Kampala.

HIV is an enormous problem in Uganda. Current estimates indicate that about two million Ugandans are living with HIV/AIDS (UNAIDS, 1999), and young people 10-24 years of age contribute nearly 50% of those cases (UNICEF, BECCAD program 1998). It is estimated that HIV infection rates are as high as 28% in Kampala, with 10% on average sero-positive in the country as a whole. While recent declines in seropositivity in Kampala’s urban population (March 1997 MOH surveillance report) are hopeful signs for the future, the number of those already infected and requiring assistance has not declined correspondingly. On the other hand, a complex set of mental health issues has arisen that is closely linked to the HIV/AIDS problem.

To understand the difficulties in taking on the problem of mental health and HIV/AIDS in Uganda, it is important to first understand the situation faced by those with any type of mental health problem and how some of these difficulties have been reduced in the Kamwokya community.

Mental health care in developing countries like Uganda is provided primarily through institutionallybased approaches, and in the

Ugandan case, mainly through the National Mental Referral Hospital.

More common mental disorders in Uganda likewise account for 20–30% of all outpatient attendance in general health facilities in the country. In the late 1990s, KCCC realized that not only was its clientele with HIV/AIDS increasing, but that a sizeable percentage (between 10-12%) of these clients would also develop mental illnesses in the late stages of the disease.

This was based on observations by some medical caregivers that a clear link could be made between HIV/AIDS and mental illness during the last stages of HIV infection when patients sometimes developed an HIV-related psychosis.

KCCC staff also saw cases of mentally ill individuals spreading the HIV infection through sexual contact with several partners. In other instances, mentally ill persons, and particularly women, were found to have been raped, something which further increased their risks of becoming infected. They also felt that individuals who engaged in unprotected sex with persons whose sero-status was unknown to them might develop depression and anxiety if they feared having been infected with HIV.

A typical day at the KCCC mental health clinic in Kamwokya.

Changing the Way Mental Health is Addressed As the rising number of HIV/AIDS cases in the Kamwokya community suggested a need for better and more accessible mental health care, KCCC staff felt that something more needed to be done.

Drawing on its community mental health and development approach, it established a mental health clinic in the heart of this poorly resourced community.

The clinic sparked a quiet revolution in the way that mental health was addressed by gradually revealing the limitations of a purely institutionally-based approach to dealing with mentally ill persons. KCCC’s efforts focused on cultivating an entirely new outlook to managing “our” mentally ill community members. However, it first encountered serious structural challenges.

Changing the strong historicalcultural beliefs and attitudes was the first step and required contributions from influential structures in the community such as small basic Christian communities (smaller units of Christian believers in which a facilitator serves as a pastoral bridge for members and links them to parish pastoral staff) and

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More male involvement in the care for mentally ill people and their families was deemed important, has been achieved and has generated more confidence among women to request assistance. Business skills training for carers/guardians, formation of mental health clubs in schools and activities such as essay competitions, exhibitions by people with mental illness and marathons or games involving mixed groups have likewise aroused interest in the community.

local community health workers.

These volunteer groups were equipped with community nursing and counseling skills to play a central role in caring for the sick, including mentally ill persons. At the same time, they assisted in strengthening the ability of families to address other social challenges such as the prevention of disease and environmental health.

The model has also focused on integrating mentally ill persons by helping them initiate livelihoods that allow them to have greater command over their lives. No one expected that in such communities a formerly mentally ill person could marry, return to work, participate in a community development process or have friends or relatives acknowledge their association with him or her, but precisely this has occurred.

Benefits of the New Approach These efforts have led to the identification of dependable, though sometimes unexpected, allies such as the police, traditional healers (many people with mental disorders prefer healers because they provide more socially meaningful explanations of mental illness) and trained volunteer community health supporters (community health workers who commit themselves to helping others on a volunteer basis). An especially important change in attitude towards mentally ill people was achieved within the police force. According to one guardian of a mentally ill person previously detained in prison: “The ruthless treatment of the past has now been replaced by the referral of mentally ill suspects for mental health attention before committing them to police cells.”

For example, through the animation exercise, “My world, my needs and how my needs can be met,” mentally ill people communicate to their relatives and friends what they wish to be done for them. In turn, their guardians were informed of the rights of the mentally ill and the opportunities to assist them. Most importantly, through these animations, an understanding of the plight of the mentally ill in the community develops among participants.

Training for mental ill persons and their carers

by Mental Health Uganda officials.

KCCC placed emphasis as well on changing gender biases related to care and support for the mentally ill.

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Through this variety of efforts, a revolution in the management of mental illness in the community of Kamwokya has taken place. The community mental health clinic now provides weekly mental health services and has cultivated rare confidence among local people affected by mental illnesses.

Other affected people (guardians/ carers/relatives/parents) have also been very enthusiastic about the new activities. Within the first year of establishment, over 250 mentally ill persons accessed care for epilepsy and minor and major mental health conditions from the clinic.

Lastly, a cadre of new supporters for community-based services has emerged to support mentally ill persons in the community.

Despite these successes, a communal approach to integration that relies on volunteer carers requires the support of government and other civic players to broaden it further. Of particular concern to NGOs and other CBOs is the government’s ongoing inability to implement and enforce mental health policy in a manner that strengthens rights–based efforts to managing mental health problems in communities. Without this, many affected individuals and families face extensive stigma and discrimination.

The effects of this experience can generate more family and individual tragedies, deepen social exclusion and reduce opportunities. Some become involved in activities that result in higher risk of contracting HIV, and then face the resulting problem of decreased household income to sustain care and support and, hence, more poverty among these families.

In conclusion, mental health challenges generally affect a person’s judgment, behavior, and sometimes their ability to make a rational decision. Some people with mental health problems may behave in ways that put them at increased risk of contracting HIV but also increased vulnerability to poverty. It is important to promote the notion that anyone can face mental heath problems such as anxiety, stress, depression, and mental health problems linked to HIV at any time of life and that the biggest challenge is to reduce the negative effects on the affected person and his/her immediate environment.

The greatest lesson KCCC can share as a result of its work in Kamwokya is that mentally ill persons can be treated within their community and helped to achieve stability and return to work. Helping to stabilize the position of mentally ill persons has, likewise, changed social attitudes in Kamwokya. Negative attitudes towards mentally ill persons were overcome through continuous community sensitization about mental health and the stigma and discrimination experienced by those faced with mental illness was reduced as a consequence.

Community–based volunteers are also crucial in changing community participation and attitudes towards mental health. They can also play an important role in following up with mentally ill people who are on antiretroviral treatment. Mentally ill persons have also demonstrated that they can contribute to their development process if they are helped to access sustained treatment and care.

For more information, contact: Godfrey Mabiriizi Kamwokya Christian Caring Community (KCCC), Uganda e-mail: gmabiriizi@kamccc.org

The Role of Russian Addiction Psychiatrists in the Prevention and Treatment of HIV Infection

The majority of the 403,10 0 HIV-positive persons officially registered in the Russian Federation on November 1, 2007 became infected due to the use of injecting drugs. This circumstance places quite a number of substance abuse problems into a different light for both researchers and practical doctors working with these types of patients. Addressing the growing HIV problem has, therefore, required the development of preventive programs for both injecting drug users and medical personnel working in the field of addiction (in Russian, this is often referred to as the field of narcology).

people involved in the abuse of psychoactive substances. However, the practical realization of the requirements formulated in these documents has proven difficult.

A study was therefore recently implemented to analyze the current attitudes and level of preparation on HIV and HIV-related subjects (such as pre- and post-test counseling) among medical staff in addiction facilities. This study (and earlier ones) reveals some of the particularities of HIV treatment and care among drug users. It has also demonstrated an interest among study participants in increased training on the subject of HIV.

The Background of Increased Efforts

The first official document of the USSR Ministry of Health that dealt with HIV/AIDS (called “On Examination Procedures for AIDS Detection in Patients with Drug Addiction and Toxicomanias”) appeared in 1987 and introduced an obligatory HIV-test for all drug addicts and toxicomans registered in dispensaries. In accordance with the Regulations about obligatory HIV-tests, authorities approved the creation of a list of patients with suspected

A number of pieces of legislation and regulations were developed in the late 1980s and 1990s to address the need for core HIV prevention among drug users. These efforts, supported by the National Research Center of Narcology, also emphasized the special role of medical personnel in addiction treatment facilities in responding to the growing epidemic among

Photo taken in Russia by photographer Thomas Peter and generously provided for use by AIDS Foundation East West (AFEW).

and confirmed drug addiction who used parenteral (subcutaneous, intramuscular or intravenous) routes of drug administration.

Because of the significant escalation of the HIV epidemic after 1996, when it reached the circles of drug users, the Ministry of Health also prepared a letter entitled “Procedure for Providing Medical Care for the HIV-infected in Narcological Treatment Facilities” (05.02.96, No.10-04/6-19) and issued official Order No.293 of 19.07.96 “On Enhancing the Measures on Preventing HIV Spread among Users of Psychoactive Substances.” These included the following measures: • epidemiological tracking of every case of HIV-infection among injecting drug users; • training for the staff of addiction facilities on HIV prevention and patient counseling; • obligatory consultations on the subject of HIV prevention for all persons seeking addiction care and for those already diagnosed as drug or alcohol addicts (since 25.07.96);

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increased the role of addiction psychiatrists in motivating their patients to follow new methods of HIV treatment and in HIV-related support.

This, in turn, stimulated an interest in exploring the preparation and training of the medical personnel of addiction facilities in providing ART and playing an informed role in their work with drug users with HIV.

• stricter control of sanitary regimes in addiction facilities; • consideration of every addicted patient as a potential source of HIV-infection and viral hepatitis; • taking steps in order to provide addiction facilities with the necessary equipment, means of protection (rubber gloves) and disinfectants; • providing the same amount of care to addicted patients with HIV as that received by other citizens of the Russian Federation hospitalized in in-patient addiction facilities; • assuring confidentiality in the detection of HIV-infection in an addicted patient.

A 1998 Ministry of Health regulation (No. 290 of 06.10.98 called “On Medical Care for Drug Addicts with HIV and Viral Hepatitis”) stated that injecting drug users were the main source of HIV in Russia and responsible for 90% of the new cases of infection. This regulation focused on: • provision of post-graduate training for doctors on the detection and prevention of drug addiction, parenteral viral hepatitis and HIV infection; • establishment of addiction treatment facilities wards for addicts with HIV and hepatitis; • provision of all types of care for addicts with HIV and viral hepatitis; • provision to addiction facilities of the equipment and supplies necessary for an adequate epidemiological regime, and establishment of the material basis for the treatment of drug addicts with HIV; • pre- and post-test counseling for persons taking HIV tests.

Photo taken in Russia by photographer Thomas Peter and generously provided for use by AIDS Foundation East West (AFEW).

These official responses were necessary because data from the 1990s showed not only high rates of risk behaviors among drug users, but also a lack of knowledge and adequate training among addiction psychiatrists working with HIV infected patients. Moreover, a study conducted in 2001 made it clear that the majority of them had dealt in their practice with the treatment of HIV patients.

The doctors had already noted some peculiarities in the treatment of drug addicts with HIV. Sometimes these patients had an atypical course of

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the withdrawal syndrome, difficult recovery after abstinence, as well as frequent relapses. They also reported different sensitivity and tolerance among these individuals to medication, additional somatic pathology, lower immunity and the need to adapt pharmacotherapy and add medication-enhancing immunity.

Doctors also reported significant psychological difficulties in informing patients about their positive HIV tests. It was also often not possible because of the poor clinical condition of the patient. On the positive side, after hearing their diagnosis of HIV infection, some patients seemed to develop a motivation to stop using drugs and paid attention to dealing with both problems. In response, many addiction psychiatrists began to feel that psychologists and specialists on infectious diseases should also be involved in the addiction treatment process.

The Situation Today Currently, drug users living with HIV pay more attention to the availability of HIV treatment. This has occurred because many have reached stages of the disease that require pharmacological intervention and also because new and more effective ART drugs are available. The growing demand for ART has also

The majority of addiction psychiatrists who participated in the 2007 study reported that they had experience in treating addicts with HIV and some of them had experience with patients treated for drug addiction and simultaneously receiving ART. Over one-third of them now consider ART a way to prolong patients’ lives and improve their quality of life; in addition, 20% acknowledge the importance of this therapy in prevention of the spread of the HIV epidemic. More than half of the addiction psychiatrists were knowledgeable about the negative consequences of ART, such as side effects (19.4%) and resistance to medication (61.2%).

Interestingly, 31.9% of addiction psychiatrists noted that the specific lifestyle of drug users was the main obstacle in ART use. Among other reasons, they mentioned the possible interaction of drugs with ARTs (10.1%) and the severe side effects of this therapy (2.2%).

Nevertheless, 23.2% were positive about prescribing ART for drug users if the patients showed motivation to obtain treatment and 20.3% approved such a prescription in cases where patients had stopped using drugs.

Additionally, 11.6% of the respondents supported substitution therapy using opiate agonists (a drug that prompts a response at the cellular level) as an additional treatment for addictive HIV-patients receiving ART. However 37.3% considered this to be a possible treatment choice only after multiple failure of the abstinence treatment model for opiate users.

The motivation to fight addiction was shown by the study to be one of the most important factors influencing the provision of ART. Perhaps more importantly, the majority of addiction psychiatrists acknowledged their role in

supporting this motivation, but considered their activities in this direction to be more productive when supported by an infectious disease specialist.

The results of the study into the attitude of addiction psychiatrists towards pre- and post-test counseling also yielded interesting results.

What became clear is that pre- and post-test counseling are currently recognized as an effective means for HIV prevention among drug users and in motivating them to adhere to ART. In fact, the study showed that 65.1% of addiction psychiatrists are involved in pre- and post-test counseling and 10.85% provide the services “if indicated.” Even though such counseling is officially seen as part of any regular procedure, 19.3% of respondents still do not regard it as their professional duty to provide it. The statistics differ between addiction psychiatrists with experience in treating addicts with HIV (72.7% of those do provide counseling even though 12.1% do not consider it as their professional duty) and those without such experience (35.7% provide the counseling and 57.1% refused as not being part of their responsibilities).

The results of this study also highlighted a wider spectrum of issues related to HIV prevention and its treatment in drug addicts. For example, treatment procedures in addiction facilities were shown to depend to a great extent on the specific addiction disorder and on personality traits and behavior characteristics of the injecting drug addicts.

Particularly noteworthy, given the importance of providing care for addicts with HIV, was the fact that only 9.6% of addiction psychiatrists had had additional training on specific issues of care for HIV-infected persons in 2006.

Looking Ahead Overall, the study revealed that the level of training in this area among medical personnel in addiction facilities is not satisfactory, as well as the fact that there is great interest among respondents in more training in HIV prevention and treatment. Of particular interest to the study participants were subjects such as “Pre- and post-test counseling” (50%), “First assistance in possible HIV-exposure” (10%), “Legal aspects of providing care for the HIV-infected persons” (10%) and “Treatment of HIV in drug

addicts” (10%). This confirmation of need and demonstration of interest in information related to the treatment of persons with HIV is positive, especially given the continuously changing epidemiological situation, variable and complicated clinical picture produced by HIVinfection, the co-morbidities of addictions and HIV and other infections and the achievements of modern immunology and pharmacology. This, combined with the increasing number of addicts in addiction facilities, in turn suggests a need for more comprehensive and nuanced training to be provided on the prevention, treatment and care of HIV for all groups and levels of medical personnel in these facilities.

For more information, contact: Dr. Sergey Koren Medical Consultant, AIDS Foundation East West-Moscow e-mail: sergey_koren@afew.org Dr. Natalia Dolzhanskaya, PhD Head of Department for the Prevention of AIDS and Other Infections, National Research Center on Addiction, Russian Federation e-mail: ndolzhaskaya@yandex.ru

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Photo taken in Russia by photographer Thomas Peter and generously provided for use by AIDS Foundation East West (AFEW).

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by Elena Mozhaeva Обращение к читателям Этот номер Mental Health Reforms (MHR) посвящается теме, которая часто выпадает из поля зрения специалистов и политиков, а именно, связям между психическим здоровьем и ВИЧ/СПИД. Пандемия ВИЧ/СПИД ежегодно уносит огромное количество жизней в разных странах и на разных континентах, а усилия по профилактике и лечению пока явно недостаточны. В этой ситуации особое значение приобретает исследование влияния пандемии ВИЧ/СПИД на психическое здоровье ВИЧ-инфицированных, а также ухудшение их материального положения, их стигматизации и маргинализации. Статьи номера рассказывают о деятельности различных организаций в странах Африки, Восточной Европы и Средней Азии в решении этой сложной проблемы. Информация для читателей: с 2008 платная подписка на MHR отменяется. Печатные копии можно будет получить бесплатно, а электронная версия находится на сайте Глобальной инициативы в психиатрии (ГИП).

Документ ГИП: ВИЧ/ СПИД и психическое здоровье Лица с ВИЧ/ СПИД, испытывающие психические проблемы вследствие этой инфекции, - жертвы дважды. Они практически всегда стигматизированы из-за своей болезни, им приходится нести в себе травму потенциально близкой смерти и иметь дело с ближайшим окружением, которое боится их вскоре потерять. Такое комплексное бремя нередко приводит к потере работы, увеличивая, таким образом, экономическую нагрузку на общество. Распространение ВИЧ тесно связано с ростом потребления инъекционных наркотиков после распада Советского Союза и в условиях разразившегося тяжелого социальноэкономического кризиса. В это же время Афганистан стал крупнейшим в мире производителем опия, и сравнительно дешевый героин попал на улицы бывших советских городов. В странах Восточной Европы наркотики до сих пор остаются основным способом распространения ВИЧ-инфекции, хотя в последнее время растет распространение ВИЧ через гетеросексуальные контакты.

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У ВИЧ-инфицированных достаточно велика вероятность проблем психического здоровья. Известно, что до начала широкого применения специальной терапии, у 7% лиц с ВИЧ развивалась деменция. Их жизнь наполнена тяжелыми событиями, среди которых новость о том, что они инфицированы, переживание потери здоровья, разрыв контактов, финансовые трудности и проблемы с работой, побочные эффекты терапии и постоянное чувство глубокого несчастья. Плюс стигматизация, которая мешает выдерживать режим терапии и вызывает страх, недоверие, чувство беспомощности, сниженную самооценку, и загоняет человека в одиночество. ГИП поддерживает усилия по улучшению качества жизни и уменьшению страданий людей, живущих с ВИЧ/ СПИД. Организация работает над созданием системы всесторонней психологической и психиатрической помощи для ВИЧ-инфицированных, и поддерживает усилия по ведению разъяснительной работы среди населения и уменьшению давления стигмы в связи с психической болезнью и ВИЧ/ СПИД.

Проблемы психического здоровья у ВИЧинфицированных и их близких Мелвин Фриман Известно, что в странах с высоким уровнем ВИЧ каждый человек или физически заражен или психологически поражен этим вирусом. К психологически пораженным относятся: люди, осуществляющие уход за ВИЧ-пациентами; люди, потерявшие своих близких из-за СПИДа; члены семей пациентов в связи с ухудшением материального положения (кормилец теряет работу, и семья несет дополнительные расходы в связи с лечением, включая затраты на транспорт); дети, оставшиеся сиротами или попавшие в трудное положение из-за инфекции родителя; прочие лица (друзья, работодатели и т.д.). К сожалению, большинство стран, особенно небогатых, не занимаются вопросами психического здоровья в связи с ВИЧ/СПИД. Как показывают научные исследования, среди ВИЧ-инфицированных показатели распространенности психических расстройств по меньшей мере в два раза выше, чем в общей популяции. Это связано с тем, что психическое нездоровье является как прекурсором

ВИЧ/СПИД, т.е. расстройство существует до заражения и является важным фактором риска заражения, так и прямым следствием ВИЧ. У психически больных это обусловлено неспособностью правильно оценить риски при незащищенном сексе, сексуальными злоупотреблениями по отношению к ним, трудностями усвоения профилактической информации, частой сменой партнеров. После заражения вирус влияет на ЦНС, что может повлечь за собой развитие деменции, а на поздних стадиях СПИД – психоза. Не исключено, что депрессия также является непосредственным биологическим результатом вирусной инфекции, не говоря уже о стрессе существования вместе с болезнью. Проблемы психического здоровья у ВИЧинфицированных отрицательно влияют на их физическое здоровье. Это связано с несоблюдением режима терапии и, соответственно, рецидивами психического расстройства и ухудшением статуса ВИЧ/СПИД. Среди психологически пораженных тяжелые испытания выпадают на долю лиц, обеспечивающих уход, лиц, потерявших своих близких из-за ВИЧ/СПИД, детей, осиротевших изза болезни родителей и медицинских работников, обслуживающих ВИЧ-пациентов. Эти группы сталкиваются с проблемами тяжелого стресса, переживания горя и подчас вынуждены менять всю свою жизнь из-за ВИЧ/СПИД. Интересно, что у 80% медработников, имеющих дело с ВИЧпациентами, отмечаются симптомы психического расстройства. Психологическая и психиатрическая помощь должны стать составной частью лечения при ВИЧ/СПИД. В настоящее время психологическая поддержка лиц, узнавших о своем статусе ВИЧ-инфицированных, явно неадекватна и недостаточно профессиональна. Очень полезны могут быть группы поддержки, на которых могут прорабатываться эмоциональные проблемы, особенно среди лиц, обеспечивающих уход, переживающих горе утраты, осиротевших детей и даже медработников.

Программы ВИЧ/СПИД и психического здоровья в Юго-Восточной Европе, на Кавказе и в Средней Азии Катя Асоян В странах Юго-Восточной Европы и новых независимых государствах отмечаются самые высокие в мире темпы роста эпидемии ВИЧ/ СПИД. Особенно страдают уязвимые группы, и распространению инфекции способствуют употребление наркотиков, торговля людьми и миграция, характерные для этого региона. Правительства гарантируют широкий спектр бесплатной помощи лицам, живущим с ВИЧ/СПИД, но качество этой помощи оставляет желать лучшего, ей недостает конфиденциальности,

The Georgian HIV/AIDS Center.

широко распространены дискриминация и стигматизация ВИЧ-инфицированных. ГИП с 2005 года ведет проект по улучшению качества жизни людей с ВИЧ/СПИД, которые также сталкиваются с проблемами психического здоровья, а также их близких. Программа финансируется Министерством иностранных дел Нидерландов и Институтом «Открытое Общество». Она предполагает создание сети мультидисциплинарных экспертных центров в девяти странах – Армении, Азербайджане, Грузии, Казахстане, Кыргызстане, Таджикистане, Болгарии, Молдове и Сербии. Задача центров: обеспечение всесторонней психологопсихиатрической помощи людям с ВИЧ/СПИД, информирование специалистов и политиков, и снижение стигматизации в связи с психическими болезнями и ВИЧ/СПИД. Центры ведут научные исследования, организуют тренинги и готовят публикации. Их деятельность предполагает активное участие людей, живущих с ВИЧ, их родственников и лиц, обеспечивающих помощь. Такое участие способствует повышению самооценки и вовлекает изолированных в силу обстоятельств людей в контакты с другими.

Оценка качества психического здоровья людей, живущих с ВИЧ Яна Джавакашвили, Марина Стоянович и Катинка де Фрис Для укрепления доказательной базы оптимальной психолого-психиатрической помощи лицам, живущим с ВИЧ, в девяти экспертных центрах ГИП созданы научноисследовательские группы. Их задача состоит в проведении исследований качества на основе методики обсуждений в фокус-группах. Сбор данных в фокус-группах – это экономичный

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метод получения большого объема информации за сравнительно небольшой срок (около двух недель). Ранее исследования основывались на количественных показателях и статистике. Исследовательский проект ставил перед собой следующие цели: (1) повышение уровня знаний о проблемах психического здоровья в связи с ВИЧ-инфекцией; (2) определение потребностей пораженной популяции, в т.ч. оценка имеющейся помощи в области психического здоровья; (3) формирование доказательной базы для эффективных интервенций. По результатам исследования, направления деятельности служб психического здоровья, да и сами службы, несмотря на реформы последних лет, все еще не соответствуют требованиям времени. Интересно, что законодательство в области ВИЧ/СПИД, службы и координация в этой сфере, оказались значительно более современными. Отмечено также отсутствие взаимодействия между системой психического здоровья и системой помощи для пациентов с ВИЧ/СПИД. В статье кратко излагаются результаты исследований в Кавказском регионе и в Сербии.

Психическое здоровье и ВИЧ/СПИД в Уганде: опыт сообщества Камвокья Годфри Мабириизи ВИЧ – огромная проблема Уганды. По текущим оценкам, с ВИЧ/СПИД живут два миллиона жителей, и почти 50% из них – дети и молодые люди в возрасте 10-24 лет. В этих условиях особое значение приобретает такая сложная проблема, как психические расстройства в связи с ВИЧ/СПИД. В Христианском сообществе Камвокья (ХСК) уже в конце 90-х поняли, что идет не только рост числа клиентов с ВИЧ/СПИД, но и то, что значительная часть из них (10-12%) на поздних стадиях болезни дает психические болезни. ХКС также столкнулось со случаями распространения ВИЧ психически больными лицами через сексуальные контакты с несколькими партнерами. С другой стороны, часто случались изнасилования психически больных людей, особенно женщин, что повышало риск заражения. Учитывая растущую потребность в доступной психолого-психиатрической помощи для людей с ВИЧ/СПИД, работники ХСК решили создать клинику психического здоровья в самом центре бедного ресурсами сообщества Камвокья. Поначалу ХКС столкнулось с серьезными структурными проблемами, связанными с местными обычаями и традициями. Модель клиники предполагала интеграцию психически больных людей в сообщество через поддержку и помощь, чтобы они впоследствии могли лучше справляться с задачами повседневной жизни. Никто не ожидал, что в таком сообществе в прошлом психически больные люди будут вступать в брак, возвращаться к работе, участвовать в развитии сообщества,

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обзаводиться друзьями, возобновлять разорванные контакты с родственниками и т.д. Но случилось именно это. В этой работе у ХКС проявились подчас неожиданные союзники – полиция, традиционные хилеры (многие психические больные предпочитают обращаться именно к ним, так как они дают социально значимые объяснения болезни) и специально подготовленные волонтеры из сообщества. ХКС изменило гендерный акцент в отношении оказания помощи, и привлекло к этой работе большое количество мужчин, что повысило степень доверия среди женщин, и они стали охотнее обращаться за помощью. Главный урок проекта ХКС состоит в том, что психически больных можно лечить внутри сообщества, а не в изоляции в больнице. Негативное отношение к ним удалось преодолеть через информирование сообщества по вопросам психического здоровья и проблемам пациентов, и в результате произошло снижение стигматизации и дискриминации.

Роль российских наркологов в профилактике и лечении ВИЧ-инфекции Н.А. Должанская и С.В. Корень Среди официально зарегистрированных в России на конец 2007 года более 400 тысяч ВИЧ-инфицированных большинство заразилось в результате инъекционного употребления наркотиков, и в этой связи особое значение приобретает отношение к ВИЧ-пациентам и их проблемам со стороны наркологов. Вопросы профилактики ВИЧ-инфекции в наркологии нашли отражение в распоряжениях Минздрава, и при этом особая роль отводилась медицинскому персоналу наркологических учреждений. Однако данные опроса, проведенного до начала эпидемии ВИЧ, показали недостаточную информированность и подготовленность врачейнаркологов к работе с ВИЧ-пациентами. Уже в 2001 ситуация изменилась, и врачи приобрели такой опыт работы, но они же указывали на необходимость привлечения к лечебному процессу психологов и инфекционистов. К числу трудных следует отнести вопрос до- и послетестового консультирования, которое является признанным инструментом профилактики. Процедура консультирования предусмотрена официальными документами, но 19% наркологов-участников опроса не считали это своей должностной обязанностью. Вместе с тем в последнее время растет интерес к учебным курсам по темам, связанным с ВИЧ. К сожалению, на сегодняшний день подготовка наркологов в этой области отстает от реальной ситуации и постоянно возрастающих потребностей. В этой области требуется систематическое обучение специалистов с учетом происходящих изменений.

Global Initiative on Psychiatry Global Initiative on Psychiatry (GIP) is an international not-for-profit organization for the promotion of humane, ethical and effective mental health care worldwide.

GIP is registered in Hilversum, The Netherlands, and works closely with its network of regional centers in Lithuania, Bulgaria and Georgia and a country office in Tajikistan, as well as with numerous NGOs, governmental and international organizations.

In addition to being a major contributor to improved mental health care systems in Central and Eastern Europe and the Newly Independent States (CCEE/ NIS), GIP has also begun working in other regions of the world. In all regions our goal is to empower people and help build improved and sustainable mental health services that are not dependent on continued external support.

Photography The photographs in this issue were taken by staff of the MAIDS Expert Centers, representatives of the authors’ organizations or other parties. The individuals portrayed were aware that their photographs might be published. We have also done our best to ensure that appropriate photographic credits have been given.

GIP’s General Board

Robert van Voren introducing GIP’s work on mental health and HIV/AIDS at the conference in November 2007.

Robin Jacoby, Chair (UK) Jaap van der Haar, Secretary/ Treasurer (NL) Maarten Boon (NL) Nicoleta Candea (RO) Clemens Huitink (NL) Rolf Hüllinghorst (DE) Lars Jacobssen (SE) Dainius Puras (LT) Dick Raes (NL) Diana Samarasan (US) Simon Surguladze (GE) Peter Tyrer (UK) Conny Westgeest (NL)

GIP-Hilversum (International Office) P.O. Box 1282 1200 BG Hilversum The Netherlands Tel.: +31 35 683 8727 Fax: +31 35 683 3646 e-mail: hilversum@gip-global.org www.gip-global.org

GIP-Tbilisi 49A Kipshidze Str., Tbilisi 0162, Georgia Tel.: +995 32 235 314 / +995 32 214 006 Fax: +995 32 214 008 e-mail: tbilisi@gip-global.org www.gip-global.org

GIP-Sofia 1 Maliovitsa str.

Sofia 1000, Bulgaria Tel.: +359 2 987 7875 Fax: +359 2 980 9368 e-mail: sofia@gip-global.org www.gip-global.org

GIP-Vilnius M.K. Oginskio g. 3 LT-10219 Vilnius, Lithuania Tel.: +370 5 271 5760 / +370 5 271 5762 Fax: +370 5 271 5761 e-mail: vilnius@gip-global.org www.gip-global.org / www.gip-vilnius.lt

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Other themes addressed by Global Initiative on Psychiatry to be covered in future issues of Mental Health Reforms:

• Mental Health and Development Aid • Forensic Psychiatry and Prison Mental Health • Child and Adolescent Mental Health • Community Mental Health Care • Mental Health and Human Rights • User Involvement in Mental Health Services • Substance Abuse Prevention • Intellectual Disability

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