ISBN 983-9417-39-8 All rights reserved.

No part of this book maybe reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without written permission from the publisher. Copyright Kementerian Kesihatan Malaysia Haliza Mohd. Riji and K. J. Pataki-Schweizer First published 2002 by Ministry of Health Malaysia Printed by AG Grafik Sdn Bhd.

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Foreword
- Tan Sri Datu Dr. Mohamad Taha Arif v

Preface and Acknowledgements

- Haliza Mohd. Riji and K. J. Pataki-Schweizer vii

1 1

Overviews
1. 2. INTRODUCTION - Haliza Mohd. Riji THE MULTIFACETED NATURE OF HIV/ AIDS:THE CASE OF MALAYSIA - Haliza Mohd. Riji HIV/AIDS AND DRUG ADDICTION: A LOOK AT MALAYSIA - Sharol Lail Sujak 1

3.

CONTENTS

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2 Adolescent Realities 2
4. INSIGHTS INTO ADOLESCENT BEHAVIOUR IN RELATION TO HIV: SOME MALAYSIAN EXAMPLES - Norana Johar and Haliza Mohd. Riji 39 KNOWLEDGE, ATTITUDES AND DETERMINANTS OF PERCEIVED RISK RELATED TO HIV/AIDS AMONG ADOLESCENTS IN MALAYSIA - Siti Norazah Zulkifli and Wong Yut Lin IF ONLY WE KNEW: JUVENILES WITH HIV - Haliza Mohd. Riji 5.

49

6.

69

3 Personal Realities 3
7. A WOMANS REALITIES: CONFRONTING AN HIV/AIDS PROGRAM - Zaiton Zainal Abidin A PERSONAL PERSPECTIVE - Sam HIV/AIDS AND LIFE EDUCATION - Wasana Warapak 79 84 89 8. 9.

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4 4

Institutional Realities
10. HIV/AIDS MANAGEMENT AND PROGRAMS IN THE MINISTRY OF HEALTH, MALAYSIA - Prathapa Senan

92

11.

HIV CONTROL IN MALAYSIA: COMMUNITY MOBILISATION AND BEHAVIOUR MODIFICATION PROGRAMS THROUGH YOUTH - Mohd. Nasir Abdul Aziz, Faisal Ibrahim and Rohani Ali 98 MANAGEMENT OF HIV/AIDS IN THE PRISONS DEPARTMENT, MALAYSIA - Ali Othman

12.

109

5 Society and Community Realities 5

13. HIV/AIDS AND OLDER PEOPLE :MYTHS REALITIES AND HIGH RISK ACTIVITIES - Choo Keng Kun PSYCHOSOCIAL ASPECTS OF HIV/AIDS PREVENTION: A LOOK AT COMMUNITY AIDS SERVICE PENANG (CASP) - Ismail Baba 115 14.

121

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15.

KNOWLEDGE AND PERCEPTION OF HIV/AIDS AMONG THE PUBLIC AND TEACHERTRAINEES - Haliza Mohd. Riji and Mohd. Sukur Seman 130

6 Challenges
16. NEW VULNERABILITIES AND THE NEED FOR AN HIV/AIDS INFORMATION SYSTEM - Azizah Hamzah 137 THE CHALLENGES OF HIV/AIDS AND STIGMA - K.J. Pataki-Schweizer 17.

146

iv

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The publication of this monograph on the social and behavioral systems related to HIV/AIDS is highly regarded and very much awaited by the Ministry of Health. Since the first case of AIDS in Malaysia in 1986, the Ministry of Health has given major attention to the problem and has not stopped at anything that would make it better equipped to curb the spread of the infections. As evidence points to the association between behavioral factors and HIV, the government is ready to welcome any effort that can lead to better awareness of HIVAIDS among the general population and specific groups, promote positive behavioral change, and improve the management of cases and the protection of susceptible persons. The editors bring useful earlier experience to the volume, Dr. Haliza from her role as first Director of the Institute for Health Promotion and Dr. PatakiSchweizer as WHO Behavioral Scientist based at the Institute for Medical Research, both in Kuala Lumpur. They have brought together program managers, researchers, persons with

Foreword

HIV/AIDS, non-governmental organizations and those that lend support in rehabilitative activities. The results illustrate the strong sense of commitment within the Ministry of Health departments to assess the situation with a view of overcoming prevailing issues and constraints. This monograph is a specific attempt to present papers that approach HIV/AIDS from the social and behavioral perspective. HIV/ AIDS is a subject matter for social inquiry when it deals with cognitive, cultural and societal relations; it lies within the domain of power and responsibility when management strategies are addressed; and it touches on the dimensions of religion and its moral obligations when all that is required for a person to avoid risking the infection is to believe in the harm of drug addiction and abnormal sexual behavior. Everyone who is concerned with HIV/AIDS can be further enlightened by this publication. I wish to acknowledge with appreciation the efforts by the editors, whom I regard as wellestablished and experienced medical anthro-

pologists, to publish materials that deal with the behavioral dimensions of HIV/AIDS in Malaysia and in the global context. Doubtless, they will enhance our knowledge of the subject and prepare us to better deal with the issue more effectively. It is also expected that the Institute of Health Promotion and similar organizations

would take a leading role in expanding their research activities to encompass efforts aimed at promoting individuals and groups to adopt a lifestyle that is more meaningful and contributes to a better quality of life.

Tan Sri Datu Dr. Mohamad Taha bin Arif Director-General of Health Ministry of Health Malaysia May 2002

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Preface and Acknowledgements

The publication of this monograph is driven by the need to put into print discussions revolving around contributory factors and social support or lack of it concerning HIV/AIDS. In December 1998, the Division of Social and Behavioral Research (from July 1999, the Institute of Health Promotion) at the Institute for Medical Research in Kuala Lumpur, Malaysia organized a national seminar entitled The Behavioral Dynamics of HIV/AIDS: Confronting Realities in Contact, Transmission and Programs. The purpose of this seminar was to bring together researchers, program managers, academics and non-governmental organizations (NGOs) involved with HIV/ AIDS. NGOs participating included the Malaysian AIDS Council, Pink Triangle and Pengasih. The seminar also reflected ongoing research activity by the Division on socio-behavioral determinants and psychological modalities of adolescent exposure to HIV, HIV-positive adolescents and prison inmates in Peninsular Malaysia. The seminar received technical and financial support from the World Health Organization. If programs are to succeed, there is a great need to better understand the individual, institutional and societal perspectives of HIV/ AIDS inclusively. Research in these areas provides basic data for government, nongovernment and community agencies to develop and implement their programs. In the eyes of many Malaysians, HIV/AIDS is something better dealt with by health authorities since it involves infection and treatment. The phenomenon is now recognized as being of major public health importance, and it becomes ever clearer that the problem is as much social as it is immunological. This requires that HIV/ AIDS be understood as a conjunction of intimately meshed cultural, environmental, physical, psychological and social factors, in short the behavioral dimension, for effective treatment and control. The addition of several other papers and editing demands lengthening the publication process and this, we believe, enhances the

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monograph. The monograph thus is not intended as yet another proceedings collection. The papers, partly through request and selection by the organizers, involve major areas of concern and reality for HIV/AIDS work. Three conclusions to be immediately drawn are firstly, that collaborative research into the circumstances leading to HIV infection be done, reviewed and integrated into programs continuously; secondly, that programs targeting behavioral change in specific groups be accelerated; and thirdly, that government and NGOs directly and continuously address the sociocultural dimensions of the problem, including dealing with the afflicted.

The publication of this monograph would not have been possible without the support of the Ministry of Health Malaysia. We particularly wish to record our thanks to the Director-General of Health Malaysia, Ybg Tan Sri Datu Dr. Mohammad Taha bin Arif for his support of this monograph and his Foreword. We also wish to thank Dr. Azizah Hj. Hamzah, Head, Department of Media Studies at University of Malaya for extending her computer facilities during the final editing of the papers. It is our hope that the monograph will reach out to all levels of health ministries and public health, and to all who are concerned about HIV/AIDS.

Haliza Mohd. Riji, Ph.D. University of Malaya K. J. Pataki-Schweizer, Ph.D. Impact Horizons Ltd. June 2002

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INTRODUCTION
Haliza Mohd. Riji

BIOMEDICAL AND CULTURAL ASPECTS

The terms HIV and AIDS have been largely understood within the biomedical conceptual framework. Basically, it refers to the intrusion of a specific virus, the human immuno-deficiency virus (HIV) into the human body which causes the body to lose its natural defense mechanisms to ward off attacks from disease-causing agents. The behavioral dimension particularly associated with the infection has been termed riskbehavior. The fact that the HIV phenomenon is rapidly spreading globally makes it a threat of pandemic proportions. Risk-behavior suggests that certain human activities expose individuals and groups to the chance of being infected. Again, this terminology is constructed within the biomedical domain. Accordingly, the medical pursuit of an HIV vaccine is on the assumption that the elimination of the virus provides the most promising hope for combating it. In other words, controlling the causal agent would ensure

control of HIV and hence prevent the onslaught of AIDS. Behaviorally and culturally, the explanations of this disease are more complex. Behavior functions within a given cultural system, taking culture formally as the sum total of beliefs, norms and knowledge of a linguistic population. The spread of HIV and AIDS today is not explained by biological factors alone, but is complicated by cultural, economic, social and political factors affecting populations differentially, in short the behavioral dimension. HIV infection also occurs disproportionately within ethnic groups within larger populations. However classified, the infections also reflect cultural characteristics of these groups. Social scientists who wish to better understand HIV/ AIDS can view this as a complex of social, psychological, and cultural facets influencing risk-behavior. Any conceptual framework for HIV/AIDS research must thus also analyze the problem as a cultural reality.

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CONTEXTS FOR HIV TRANSMISSION

Malaysia is part of the global scenario in HIV/ AIDS. The term AIDS was relatively unheard of prior to 1986, the year when four HIV-infected persons and one AIDS case were reported. The first female AIDS case was identified in 1989. Adolescents between the ages of 14-19 now comprise a growing HIV/AIDS cohort of concern for the country. What can be drawn from this incidence and the public knowledge of HIV/ AIDS in this country?

Societal Factors
Behavior occurs within a societal framework. This is to say that a society situates the particular social environment in which individuals and groups live, who in turn over time determine the specific social and cultural shapes within which behavior occurs. Social factors are influential in HIV transmission but constitute only one factor of the interplay, e.g. those pertaining to gender relations and role learning. This behavioral interplay also includes culture, ecology, demography, and personality. A look at Malaysian society in the 70s, that is prior to public concern about HIV/AIDS, indicates that the main concerns relating to

adolescents and youths revolved around drugtaking and drug-dependent behavior. Findings of studies conducted between 1976-1977 in Penang by Navaratnam and Spencer among drug users attending a government hospital and among prisoners showed that males less than 30 years of age with a primary level of education and working as labourers constituted the majority of dependents group. A 1978 study by Navaratnam, Spencer and Lee among high school students in the states of Penang, Selangor and Kelantan reported that 11% had had illegal drug experience, and that the highest cohorts using were those aged 13 and 18 years respectively.1 The era of the 70s also witnessed the acceleration in social and economic development. New work opportunities created by the opening of electronic and other manufacturing factories attracted young males and females, including juveniles or minors from the rural areas, with jobs as unskilled and semi-skilled workers. One outcome of this development was social problems resulting from the new work environment impacting on their family, educational and psychological backgrounds. Problems in the

See Ratnasingam, M. (1995)

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80s included younger adults and teenagers even more: smoking, disco dancing, alcohol drinking, truancy, gambling and missing from home were highlighted in newspaper report. Underage girls were engaging more frequently in misbehavior appropriate for detention by the Juvenile Courts Act 1947 and the Women and Girls Protection Act 1973 and some were sent to correctional institutions. The era of the 90s was strongly colored by relaxation of social mores, social experimentation and juvenile and adolescent behavior dubbed as lepak and bohsia. These respectively refer to the practice of hanging around at public places such as malls and theatres, and to activities in streets and secluded places which led to sexual contact. While these behaviors caused major concern for parents, the government and the society at large, they nevertheless were part of the repercussions as societal transformation from that which is bound by tradition and traditional family values and sanctions to that of liberalization and modernization.

trol its spread. From an epidemiological perspective, the groups most infected are those who use injections for taking drugs, and those who change their sex partners freely. Yet the outcome of AIDS campaigns may not be seen immediately; those initiated in the early 90s for behavioral changes may take place in the years after 2000. Concerning sexual partners, it is estimated that globally individuals have an average of 9.5 sexual partners (The Sun, December 1997). These figures indicate that the more partners one has, the higher the risk of infection with STD or HIV. This phenomenon can be linked to age for example, in Malaysia, it is estimated that 20% of 1,181 unmarried respondents aged 15-21 years old reported having had sexual activity.2

TARGETS AND RISKS

In view of the rapid spread of HIV/AIDS in the country, the Ministry took measures to promote awareness among the general public about the danger of HIV/AIDS. It was assumed that national campaigns targeted at all levels of the population had an impact on the peoples awareness of the phenomenon. Through messages shown on television, the larger popula2

Demographic Factors
As more and more cases of HIV were diagnosed and more AIDS deaths were confirmed medically, the Ministry of Health made strong effort to con-

See Zulkifli, S.N. et al. (1995)

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tion can gain some degree of knowledge. The other side of this involves learned misconceptions about HIV/AIDS and their behavioral implications, thus relating to drug-taking especially among youth, promiscuous behavior, unsafe sexual practices, personal coping with AIDS, individual, family and societal responsibilities in HIV/AIDS prevention and general, attitudes towards HIV/AIDS as a social and cultural reality. It may appear that the major concerns about HIV/AIDS focus on the individual and his/ her decisions. That is, if individuals wish to prevent themselves from getting infected, they are at liberty to do so. Yet in reality, the individuals are confronted by factors that may influence them to engage in risk-behavior. What are the factors that face individuals in risk-taking? Is a first-timer aware of the longer-term implication of risk? Do drug-addicts know what risk means? Would individuals at risk be willing to change their riskbehavior? And if infected, what will they do? How would they face this reality? These are questions which social science researchers must pose and find answers to. Obviously, they relate to social and behavioral data concerning individuals and their psychological attributes, and the larger social environment.

BEHAVIOURAL RESEARCH
To assess contributory factors, it is necessary to gather data from those who have HIV/AIDS. While recognizing the fact that it is important to study the behavioral characteristics of HIVpositives in the public at large, this is a difficult task to do. To begin with, individuals do not normally know they have HIV unless they are laboratory-diagnosed. If they are drug-addicts, they can lose their sense of self care and are not stimulated to take the effort of visiting a doctor even if they find something is wrong with them. No authority knows who or how many people are infected with the virus. Those in the prisons are there due to criminal offences, while those sent to correctional institutions are for drug-related activities and juvenile misconduct such as running away from homes. It is only after a mandatory blood test for HIV inmates in prisons and correctional institutions that HIV-positivity for this group is determined. These only constitute a proportion of the actual extent of HIV since they represent a confined group, whereas the overall status of those at large is not known.

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Transitional and Marginal Groups

Studies of morbidity and drug-using pattern among addicts in rehabilitation centres and prisons have revealed some of their socio-behavioral characteristics. Surveys on health and lifestyle conducted in the early 90s for the Ministry of Health looked at perception of personal risks in addition a range of socio-demographic and behavioral variables. Based on these considerations and the need for basic data, a research project on the socio-behavioral determinants and psychological aspects of HIV/AIDS transmission among HIV-positive prison inmates was done in 1998-1999 by the Division of Social & Behavioral Research (from 1999, the Institute of Health Promotion) at the Institute for Medical Research, Kuala Lumpur. The purpose of the study was to analyze HIV-positives inmates in terms of their childhood and adolescent life factors, present life situation and plans and hopes after release. Personal interviews with male positives in this study showed that drug-taking is a result of both choice and circumstance. Family poverty contributes to an individual not being able to continue secondary education and hence terminating schooling to search for work. It is no surprise that at the early age of 12 or 13 they are

forced to get some kind of job. Lack of education and vocational training and the desire to find better paid jobs compel them to change job frequently. Somewhere during their youth or early adolescence years they pick up drug-taking. According to them, drugs are something that one can easily find. Curiosity to try ganja (marijuana) is rather more self-driven rather than peerinfluenced. According to some respondents, this is because it was easily available in the 70s and it was affordable. Initially, ganja was taken through smoking. As they became used to it and the effect lessened, they subsequently opted for heroin and morphine. In order to get quicker and more lasting effect they turned to injection. In the 70s, individuals perceptions of risk were more related to the physiological effects of the drugs, and concerns for HIV/AIDS were nonexistent. Heterosexuality, bisexuality and heterosexuality are all social realities. With respect to HIV/AIDS, they are behaviors practiced outside and inside prisons and often in conjunction with drugs. The beginning of sexual activity is traced to what they do outside during their leisure hours. Being manual laborers or working at odd jobs lead them to seek partners for leisure at

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night. Drug-taking and sexuality also go hand in hand, and are also associated with traveling jobs such as truck and taxi drivers. They find time to go to prostitutes or social escorts when they stop overnight, and may engage the same partners or different ones. It is evident that there is no uniformity in community knowledge about HIV and AIDS. People appear not to really know the difference between HIV and AIDS although they may have stated that they do. HIV appears to be understood as an infection that one gets through needlesharing, and those mainly affected are the drugaddicts. AIDS is associated with promiscuous activities of adults, especially those who have sex with prostitutes. To the question of whether one knows a person with HIV or AIDS, very few have ever really seen a confirmed case of HIV/AIDS. Yet many say that drug-addicts can be identified from their physical and behavioral aspects. This suggests that the general population is vague about HIV-infected and that there is no knowing, publicly, who has AIDS. Among HIV-positives, HIV/AIDS is perceived as a disease and as with any infectious disease, anyone can be infected by the virus; once infected, all you can do is get medical treatment because this is the only way to treat it.

MEETING THE CHALLENGES

The realities mentioned here are numerous and they transcend into the wider society. Many of those HIV-positives presently in correctional institutions feel that there is nothing much to fear since they are part of a larger group having HIV, in its own way a community. Some have become separated from their family members when their wives seek divorce. And many soon find themselves returning to the prisons when they find that there is no place for them out there. This reality of HIV is hard to face, but whether one is prepared to face it at all depends on both ones own strength and the support of those around him or her. The uncertainty of what lies ahead cannot be determined while one is still in the protected world, i.e. the prison setting. The general statement one hears in the prisons is that we are alright, we accept it. But let those who have just tried drugs with sex, stay away from it! Sexual behavior still remains a private matter for most cultures in Malaysia. There is not enough behavioral data about sexual activity of unmarried individuals or married couples, heterosexuals, bisexuals and homosexuals. Hence, promotion of condoms use may not be

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appropriate or effective if it is not known what happens when consenting heterosexuals meet. For example, an HIV-positive man claimed that he does not use condoms when he has sex with his wife. He knows that it is dangerous, but his wife never insists. He expects his wife to know better because she is a teacher; perhaps he will use the condoms in the future. Educating the public has so far been mainly through the mass media - television, newspapers, posters, pamphlets, brochures, and forums. However, while these messages are clear to professionals, they may be vague and hard to understand for lay people including students. HIV/ AIDS is pervasive, yet the messages aired on television are not regular, and people may lose contact with the epidemic. For example, the message shown on TV that risk of infection is greater when someone goes abroad, can paradoxically lead to more transmission in the local area. The major challenge is to promote better understanding of HIV/AIDS, both amongst the public and high-risk groups. Talks by AIDS psychologists and people who are working with HIV and AIDS communities help to explain the psychological aspects and support that can be offered to people with AIDS. Therefore, more action must be taken to reach out, inform and

encourage them to accept the public aspect of their problem. Many persons with HIV and AIDS may think that there are few avenues that help. It is clear that more open discussions concerning HIV and AIDS by governmental, nongovernmental, and individuals are necessary. The major challenge still to be surmounted is not to blame the infected, but to understand them socially, culturally and psychologically.

ABOUT THE MONOGRAPH

The papers in this monograph are divided into sections deemed essential by the editors: overviews, adolescent realities, personal realities, institutional realities, and social and community realities. The introductory paper introduces the focus, issues and context of the monograph. Haliza then discusses the conceptual framework in which social and cultural forces condition individuals in relation to HIV. Sharol then provides a necessary review of the history and relation between drug use and HIV/AIDS in Malaysia, with some suggestion for breaking this insidious linkage. With respect to the vital adolescent sector of the population, Norana and Haliza discuss psychological aspects of adolescence con-

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cerning gender and peer behavior, Siti Norazah and Wong provide a quantitative assessment of why adolescents succumb to risk behaviors related to HIV/AIDS, and Haliza gives some trenchant and revealing information from adolescents who are HIV-positive. In terms of personal realities, Zaitons paper is testimony to a womans commitment to a residential community for support of women affected by drugs and HIV, Sam gives us an absolutely real first-person account of experiences leading to his becoming HIV-positive, and Warapak offers her recommendations about HIV/ AIDS by changing the scale of approach in what could also be considered as a Thai cultural point of view of the problem. Government concerns as institutional realities are reviewed by Senan who outlines Ministry of Health approaches to curb the spread of HIV, including the need for compulsory blood screening for certain groups. Nasser et al. discuss a government program perhaps unique to Malaysia targeting youth, including initiatives to sensitize and mobilize them through mental, physical and spiritual activities for promoting positive and healthy behavior. Othman discusses what is being done with and for HIV-positives in national prisons.

Social and community realities are detailed by Choo who brings attention to a seemingly unlikely group at risk of HIV infection, the elderly. Ismail describes an example of community-based initiative to help HIV victims using a combined variety of professional skills and technical support, and Haliza and M. Sukor assess public and teacher-trainee perceptions of HIV/AIDS. The papers conclude with Azizahs assessment of the need for a new HIVAIDS information system utilizing information technology and media. Pataki-Schweizer considers stigma, a pervasive characterristic of basic importance that is still essentially ignored in HIV/AIDS and thus warrants serious concerns.

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THE MULTIFACETED NATURE OF HIV/AIDS: THE CASE OF MALAYSIA

Haliza Mohd. Riji

INTRODUCTION
AIDS was first identified in 1986 in Malaysia, five years after it was reported in the 1981 issue of Morbidity and Mortality Weekly Report published by the Centers for Disease Control in USA. That first AIDS case was a Malaysianborne US resident who returned home for a visit, became ill and was subsequently diagnosed as having pneumocystis carinii pneumonia, a virulent infection of the lungs (Harrison 1997). Most Malaysians, including health professionals, would probably have wished that this was a rare if unfortunate occurrence, considering that it involved an overseas resident and that culturally, the country situation where he came from was very different from Malaysia. In contrast with the setting there, HIV/AIDS in the west in the

early AIDS era was closely associated with gay (homosexual) lifestyle. Following the diagnosis of HIV-positives among Malaysian in subsequent years, one realizes that explanations of the problem have to include the social perspectives of what was happening in the country. Since the disease is infectious, this means that victims had been exposed years before the diagnosis, primarily through homosexuality and drug abuse. Though medically-reported HIV/AIDS appeared relatively recently, it is plausible to assume that HIV and AIDS were present earlier but not detected. These earlier years may have coincided with periods during which youths were exposed to more liberal attitudes in education and sexual relations when they studied abroad. Within the country there were noticeable shifts in social and

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cultural values after Independence due to more educational opportunities and flourishing economic activities. This is evidenced from the percentage of women who were in the work force, it increased from 27% in 1957 to 30% in 1970 (Jamilah Ariffin 1992).

PROBLEMS OF DEVELOPMENT
As the country gradually paced into the economic prosperity, Malaysians were confronted with social problems including drugs. Drug use had continued since its introduction in the 19th century, and the severity of the problems led to the enactment of the Dangerous Drugs Ordinance 1952, which stated that the importation, distribution, sale and use of dangerous drugs were prohibited. The fact that youth, including those attending schools, were the major group involved in drug-taking led to studies on the reasons for this behavior (DBP 1984). As the number of Malaysians involved with drugs increased, the government felt the need to help them to recovery. The establishment of three rehabilitation centers in 1975 marked the beginning of more serious efforts by the government to deal with the problem. Further to this, the government formed the Anti-

Narcotics Committee and the Anti-Narcotics Task Force in 1983 (Tay 1997). This phenomenon as it relates to HIV transmission can be examined by looking at the statistics of HIV-infected persons between 1985 to September 1993. Of 95 AIDS cases, 41 were intravenous drug users. Of the cumulative total number of positives (i.e. 6793), 5317 were IVDUS. In terms of mortality, 20 of these died (Ministry of Health 1993). The relationship between HIV and drugs can also be assessed from prison statistics. In 1989 four prisoners were identified HIV-positives; in the same year, the first female AIDS case was identified. As of January 1997, there were 1,218 HIV-positives in prisons, many of these serving sentences because of offences related to drugs (Prisons Department 1998). By 31st December 1997, the Ministry of Health reported that 24,002 were HIV-infected. A significant proportion of HIV cases are detected while in confinement in prisons and Pusat Serenti (rehabilitation centers for drug users). It is indicated that somewhat over 5% of total prisoners in Malaysia are HIVpositives. By 1999, there were 33,233 confirmed HIV-positives, and it is estimated that there are now some 45,000 HIV-positives in the country.

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Clearly, this means that a great deal of attention has to be given to prevention and treatment for the infected while they are in prison. Rehabilitation and prison officials therefore need to be aware that circumstances in confinement centers may lead to a higher incidence of AIDS, as happened in US prisons (Perez 1997). In fact, AIDS in prison should be of concern to all since there are ideal conditions in prisons for HIV transmission including overcrowding, violence, fear, and boredom are major contributory factors leading to drugs and sex (UNAIDS 1997). That is why efforts to prevent HIV transmission through drug treatment programs in prison were begun in countries such as the USA. This paper looks at the meanings of AIDS in Malaysia, at socio-cultural factors underlying HIV transmission, and assesses these in the context of recent qualitative and quantitative research on the HIV-infected and the public. Its aim is to point out their relevance in relation to health promotion and prevention programs, particularly those that rely on educational approaches.

SOME BACKGROUND OF AIDS

Before attempting to examine the factors, it is necessary to understand basic information about AIDS. The HIV or human immunodeficiency virus is the cause for the acquired immunodeficiency syndrome, AIDS. Researchers have determined HIV as an infectious agent within a class known as retroviruses, originally common to animals but now infecting humans. In simple terms, HIV reduces the bodys immune system over time by attaching itself to the T4-cells, thus blocking their ability to react to viral infections (Anspaugh et al. 1994). The virus soon multiplies and as the body T4 cells are destroyed, the infected person becomes susceptible to a wide range of opportunistic infections, such as PCP (Pneumocystis carinii pneumonia) or Kaposis sarcoma (a skin cancer) which only rarely occur in individuals with healthy immune systems. At present neither cure nor preventive treatment is available for AIDS. Avoidance from infection seems to be the practical solution (Cawley 1988). This may seem easy to suggest, but in reality it

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is difficult for individuals to practice. By 1996, hope for more effective treatment seemed to be in sight, as reflected in the statement by the Executive Director of UNAIDS at the 11th International Conference on AIDS in Vancouver (UNAIDS 1996). The widespread occurrence of AIDS in Africa has led scientists to suggest that the disease originated from the continent, and that primates could have spread the disease (Geddes 1988). By the very nature of its transmission, four major groups of the population, namely homosexuals, heterosexuals, bisexuals, and intravenous drug users are at risk to the AIDS virus infections. Children born out of extramarital relationships and unprotected sexual activities are potentially at risk too (Platt 1988). Other groups at immediate risk to infection are the partners of drug users, especially women, and recipients of unscreened blood transfusions.

SOCIAL AND BEHAVIOURAL DETERMINANTS

The AIDS virus is principally transmitted through unprotected sexual intercourse, sharing needles infected with HIV among drug addicts, and transmission from infected mother to child.

AIDS is very much related to sexual activity. Victims of AIDS in the USA in 1986 were largely homosexuals/bisexuals who also abuse drugs (Geddes 1988). Hence, AIDS can be classified as one form of sexually transmitted disease. Many theories have been suggested for the origin and spread of AIDS. Mahmoud traces the root of the problem to societal and behavioral changes, especially those which affect adolescents. Evidence indicates that AIDS is a health problem among sexually active individuals, both men and women, and is associated with sexual permissiveness and conduct. Thus AIDS is the outcome of two decades of sexual revolution which swept most western countries. He quotes studies in the USA in the 1960s and 1970s which revealed that college students had developed more liberal attitudes about sex by then (1995). In fact, premarital sex occurred among students in the USA and Europe as early as in the 1950s. By the early 1980s, homosexuality initially dominated the HIV trend in American society, and AIDS-affected middle-class homosexual men were the early victims of AIDS. Freer sexual activity seems to be a characteristic of social development worldwide. For example, findings from a global study (including Malaysia) on AIDS and sexual behavior show that

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worldwide, individuals have an average of 9.5 sexual partners after marriage (The Sun, December 1997). In similar fashion, change in adolescent behavior in Malaysia was reflected in these different eras. The 1970s were marked by issues relating to adolescent and youth misconduct and involvement in drug dependence. Studies conducted between 1976-1977 in Penang by Navaratnam and Spencer (Ratnasingam 1995) revealed that the major groups of drug dependents were males between 21-25, under 30 years with primary level of education, and working as laborers. The statistics from the Malaysian Narcotic Agency (Tay 1997) show similar and other characteristics of groups involved in drugtaking. As stated, male adolescents and young adults comprise groups at higher risk compared to other population groups. Male drug users constituted 98.9% of the drug users, of whom 22.9% were in the age group between 25-29 years, 21.3% were 20-24 years, and 7.9% were in the 13-19 years age group. Thus, 44.9% of these were 20 to 29 years of age and of great concern, 29.2% were from 13 to 24. It is significant to note that 44.4% became involved with drugs because of peer influence, that is, the behavior

of conforming to ones group activities. Three main influencing factors for HIV/ AIDS were identified: (i) economic environment (poverty, financial problems, living in economically depressed areas); (ii) family environment (parents with drug-dependence problems, family instability, marital conflicts, low parent-child contact, overcrowded family); and (iii) adolescent problems (problems at school, lack of family bonding, low self-esteem, rebelliousness, need for independence) (ibid.) Findings from a recent national study on reproductive health and sexuality of adolescents found that 98% of the adolescents interviewed had heard of the term AIDS through television, radio and newspapers. There appeared to be a gap in knowledge about transmission modes and specific terms like seks rambang (random sex, casual sex,heterosex). They had less knowledge about STD, often confusing it with AIDS, and some respondents put the blame on tourism (Raj 1997). In fact, the Terengganu Qualitative Enquiry indicated that people believed that tourists had a negative influence on social values especially those affecting adolescents, mentioning specific tourist destinations in Terengganu state (ibid).

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The era of the 1990s is also witness to crimes related to adolescent behavior. For example, 2.0% of the total crimes reported to the Royal Malaysian Police Department between 1991-1995 involved juveniles (Ahmad 1997). Their crimes committed included assault, rape, robberies and murder. To many people, these are indications that teenagers and young adults have little control over their emotions and behavior. Given the opportunities to voice their concerns, adolescents openly expressed that youth do have problems, but that the contributory factors were linked to societys difficulties. As one youth stated ...there are too few facilities in the community to accommodate for our free time (Marrinan et al. 1997).

RESEARCH FINDINGS
Behavioral Research with HIV-Positive Prison Inmates

The Drug-Sex-HIV Interconnection

There appear to be close connections between drugs, sexual activity and HIV. Nevertheless, there are other related factors, and these are largely found to involve family institutions, interpersonal relations, and personality types.

All of these involve an environment wherein a drug supply is available. A synopsis of three individuals with HIV interviewed in a Malaysian prison portray this interplay. In the case of a 28 year old Indian woman, an early marriage and having to raise four children on an income of about RM200 (USD55) per month led her to start on drugs. What began as trying for the fun of it resulted in addiction. She resorted to injections in order to be high. For her, if no drugs, then no AIDS. In another case involving a Chinese man of 41 years, the contributory factors were a low level of formal education and a poor family which had to support eight children. He was fortunate to get a job as a cook, from which he drew more than RM2, 000 (USD550) a month. Unfortunately, most of it he spent at brothels in Thailand. He tried to practice precautions, but he was not sure if he was safe. He would not have known he had HIV if it were not for a drug-related crime he committed and the imprisonment and mandatory testing which followed. The third case involves a Malay woman of 35 from Johore Bahru who spent 11 years in school and managed to get a job in a factory in nearby Singapore. She married but was divorced by her husband on grounds of barrenness. Knowing that she

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could not fulfill her life ambitions and annoyed at everyone, she then turned to drugs. She used many methods for taking drugs, including injections.

Characteristics of HIV-infected Inmates

Findings from study (1998/99) which the writer conducted among HIV-positive prison inmates in Malaysia showed the following socioeconomic characteristics. Of the 127 male respondents interviewed in prison in Terengganu on the East Coast, 63.8% belong to the 30-39 age group, 72.4% are unmarried, 46.5% had lower secondary education, and 68.5% attended schools in urban areas. 41.7% had had jobs in the private sector and 57.5 % liked their last job. A majority, i.e. 74%, had to leave their work when they were arrested. A large majority (72.4%) have between 5-10 siblings. Among those married, 78.7% had more than five children. 62.2% said their fathers were alive and 78.8% said that their mothers were still living. 57.5% said they were staying with their parents before they were sent to prison. During their childhood, 84.3 % lived with their parents and 50.4% enjoyed a normal relationship with their brothers and sisters. 44.9% stated that

they had between two to four good male friends in school and 87.4% stated they did not have any girl friends then. Of considerable interest, 49.7% said they did not have any personal problems. With regards their self-esteem, 37.8% stated that they did not have any specific ambitions when they were in school; 45.7% had moderate ambitions such as to get a job after finishing school; and 15.7% had high ambitions such as to be someone successful and famous. In the present situation, 56.7% have high hopes to be able to do what they wish upon release, 32.3% said they have no ambition at all now while 7.9% are uncertain about their future (1.1%, no response). Responses relating to high-risk behavior indicated that 96.9% used drugs previously, heroin, morphine, and marijuana being the common ones. 94.5% took drugs by injection and 2.4% by chasing the dragon (sniffing the smoke from burning drug-added cigarettes). Curiosity to try constituted the main reason respondents started their drug habits, the second being peer influence and the third, to forget my problems. As for the age of commencing drug taking, many began drug taking during their early and mid-teens. Inmates reported that it was

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easy for them to get drugs as there were many available outlets.

Fact and Fancy in Health Messages

Numerous leaflets, brochures and booklets have been distributed or given free on request. Their messages are designed for various levels of the population. Some are for the general public, while others are for particular groups. Two booklets produced by a government health education unit are described here. One, published in 1988 aimed at educating the general public about the basic aspects of AIDS. The cover title, AIDS: Answers to Your Worry implies that the public is still vague about AIDS and that the booklet can make it clear. The Malay version of the booklet uses the terms, Penyakit AIDS, which can be translated to mean the disease called AIDS. A concluding slogan at its end translates as AIDS is a killer. Change your lifestyle to prevent AIDS. Since it was first circulated in 1988, the booklet has been twice reprinted (1989, 1992) and appears to have been found useful as a tool to educate both the general public and specific groups. The second booklet, titled What You Should Know about AIDS and HIV Antibody Test was issued in 1991 by the Health Education Unit, Ministry of Health Malaysia. The booklet is meant for specific groups and thus the

Public Knowledge about HIV and AIDS

The assumption that the public does not know about HIV or/and AIDS is the very reason for the formulation of health education programs in the Ministry of Health Malaysia. As with health programs designed for other health problems, those that concern HIV and AIDS are targeted at two sectors of the population, namely the general public and special groups or groups at risk. For the general public, messages are supposed to be clear and simple yet factual. For the specific groups, an element of fear as a means of prevention is added. Not knowing about HIV or AIDS is not unexpected in a developing country like Malaysia. Obviously, peoples level of knowledge is determined by a number of factors. After several studies on the knowledge and perception of AIDS in several rural and urban communities, it was found that some of the older residents have a fair amount of knowledge about HIV transmission, whereas most adolescents could not say more than yes, I have heard of it.

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REALITIES,

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emphases are on risk behavior and interpreting HIV test results. Testing for HIV is recommended for high-risk groups, namely, drug-users through injection, prisoners, prostitutes, STD-infected persons, homosexuals and bisexuals, men and women with multiple sex partners, and sexual partners of HIV-positives. From the socio-epidemiological perspectives, these comprise groups at high or higher risk of infection. One such group comprises women who practice sex regularly or irregularly but are less protected for a number of reasons. One booklet that was designed jointly by several private organizations and endorsed by the Ministry of Health contains basic facts, such as by December 1996, 819 women in Malaysia have been confirmed HIV-positive. This included 34 cases of AIDS of whom nine had died. It also stressed the importance of prevention: the risk of contacting HIV through vaginal sex without protection is 2 to 4 times greater for women compared to men.

Concerning women, a booklet issued by a consultancy company for The Heal Program explains about AIDS, HIV-positive, transmission, and what women should know and do to prevent them from being infected. It also provides contact numbers for enquiries and advice. For general viewing, posters are put on the walls of hospitals, clinics, in bus stops and common public places, including the canteens of prisons. One poster that portrays several healthy individuals in various standing positions has this statement, They may look healthy but they may be sick. Billboards about HIV/AIDS are common nowadays, and they are particularly meant to catch the attention of Malaysian adolescents as they travel around in the country. One that is situated near traffic junctions has only four words, i.e. Say No to AIDS, which implies that the power to decide on what is harmful is within oneself.

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HIV/AIDS

A woman interviewed in a village said this:

The Personal Meaning Of HIV/AIDS HIV/AIDS is very much a stigmatizing health problem. Much of this originates from within the health service sector. To illustrate, a case mentioned in a newspaper article Living with AIDS tells us:

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Oh, AIDS cases. Yes, its sad to see. One does not know who has AIDS until someone dies. One guy died recently and my husband was asked to perform the ritual bath (accordREALITIES, THE

I wanted to see my baby, to be with him, but I couldnt until the next evening when they discharged me. My baby was placed at the end of the room, and there was a notice on the cot, Infected Mother. What is this supposed to mean? Infected mother! I am not the only one who went through this. I expected many things, but not this. This was a hospital, but there was no support at all. Dont these people have feelings? Was this lack of knowledge? I dont know.

CHALLENGES

When asked about what they know of the terms HIV or AIDS, the public seems to echo media announcements that HIV/AIDS is transmitted through seks rambang (lit. random sex), Among HIV-infected persons, HIV is simply a disease. One male positive interviewed in a Malaysian prison said: ing to the Islamic way). A hospital staff was there to see how my husband bathed the dead body. He was asked to put on two layers of rubber gloves. Afterwards, every utensil and equipment used in the ritual was rinsed with Dettol (a strong disinfectant) What fate he had! HIV is a disease. Just like any disease. HIV is a disease that one gets without knowing why. All you can do is to get any medication to treat it. If you keep on trying you may get cured. I do not understand why people are so scared of HIV cases. We have not become animals and an HIV person cannot kill people.

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A prisoner said this when asked whether he would inform his family that he is HIV-positive:

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berbilang pasangan (multiple sexual partners), needle-sharing by drug users, and mother-tochild transmission. No one mentioned homosexual directly unless probed. In reality, the community at large is not sure what HIV or AIDS is. A father of an HIV-positive strongly believed that HIV is not a problem in his village, but it is in kampung sana (the other village). He added:

I wish I could tell them because then they can help me not do what is harmful. But if they know, I know they will leave me. Where would I go? The community is worse. They will not look at you.

We do have drug addicts here. We know them by the way they behave. They are pale and thin. But we do not have AIDS. I would surely know if anyone in my family has AIDS. I cannot accept AIDS.

HIV/AIDS

A number of urban rehabilitation centers set up for helping drug-dependents, HIV-positives, and sexually abused individuals are located in Kuala Lumpur. These are non-governmental organizations (NGOs) that have been established to meet the needs of increasing number of HIV cases in the country. Examples of these include Pusat Motivasi Wanita, Malaysian Care AIDS Unit and Pengasih in Kuala Lumpur and AARG in Penang.

Organized Societal Support

Talking about HIV or AIDS is talking about stigma and about alienation. Probably, a root of stigma is planted in the correctional institution. Once diagnosed, a person joins the group given the special treatment. A newly HIV-positive responded:

Yes, we are different. We are incarcerated. Others refer to us as You got AIDS, you will soon die. And, then they do not want to mingle with us.

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REALITIES,

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Pusat Motivasi Wanita (Womens Motivation Centre)

The Pusat Motivasi Wanita (Womens Motivation Centre) in Kuala Lumpur was established in 1996 as a response to the Ministry of Health Malaysia for an individually-run halfway house for drug addicts. For nine years the Director, a woman trained in social work and counseling, managed a rehabilitation centre using her own residence and money plus a grant. At first the inmates were all males. By the end of 1997 a total of 95 drug-dependent male youths had registered at the house for help. As time passed by, certain problems connected with managing an all-male addicts institution became insurmountable, but despite this the centre did well, and this prompted the Ministry to step in with assistance. The Ministry was interested in helping women with HIV. Subsequent to an agreement that the Ministry would partly finance the centers activities, Pusat Motivasi Wanita, also known as Keluarga 101, was formally established. Up to mid-1998, a total of 35 female HIV-positives had sought refuge at the centre. Generally, they were from all ethnic and age groups, various levels of education, social and economic backgrounds.

Pengasih, Kuala Lumpur

Pengasih, which means compassion or one who loves, is a non-governmental organization set up by some ex-drug addicts for the purpose of helping others who wish to stop drug-taking. The idea of the organization was mooted in 1985. With financial support from the Australian Federations of AIDS Organization, Bakti Kasih, a societal support project which aims at rehabilitating drug-addicts from Pusat Serenti and prisons was launched in 1995. Services offered under Bakti Kasih include informationgiving, peer-help, family support, personal health care and outreach activities. Pengasihs other programs are Muara Kasih (care for chronically ill), Seruan Kasih (outreach), and Lawatan Kasih (drop-in centre at Jakarta). Pengasih Malaysia is a member of the WFTC, World Federation of Therapeutic Communities based in New York city.

Malaysian Care AIDS Unit

Malaysian Care, a Christian-based rehabilitation organization, formed its AIDS Unit in January 1996. It aims at providing support for prisoners with HIV. Unlike other activities of the organization, which are very much linked to the

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religion, these are separate. The reason behind this is to allow all prisoners, irrespective of their religious background, to benefit from every activity carried out by the Unit. Among the services related to AIDS provided by the Unit are awareness promotion and education, training in counseling, training of trainers, individual care, support group links, community care, community home and community services.

LESSONS FROM RESEARCH ON HIV/AIDS HIV/AIDS as a New Social Phenomenon

HIV and AIDS evoke fear. New terms like homosex, multiple partners and drug addict are brought to societys forefront. Medical terms which used to involve peoples in the past, for examples dengue, diarrhea, leprosy, sexually transmitted diseases and tuberculosis have more or less escaped from peoples daily conversation. In the drug-addiction era (and occasionally in the present), metaphors like najis dadah (filthy drugs), and penyakit dadah (health problems associated with drug addiction) were frequently printed in newspapers, aired over the radio or shown on television screens. They were also shown along corridors and at exhibition halls. While other infectious diseases such as malaria (in the rural areas) and dengue (in the urban areas) have never really vanished, and people are presumed to be aware of them, in reality the public generally forgets these easily until an epidemic occurs. The expectations now appears to be that HIV and AIDS are to preoccupy peoples minds. They should continu-

AIDS Action and Research Group (AARG)

Telephone counseling is used as the primary method of helping HIV-infected and noninfected individuals by a group of professionals who are interested in AIDS work. Known as AIDS Action and Research Group, the group members comprise academicians, researchers, social workers, health professionals and lawyers. Its activities are mainly aimed at helping people to get the right information about the disease and medical and psychological help. It is based at the Universiti Sains Malaysia (Science University of Malaysia) in Penang. It also conducts short courses for government and nongovernment staff on techniques of counseling. Its second function is related to research on HIV/ AIDS.

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ously be aware of these because they are a threat worse than anything before, which is also a matter of situation, location and emphasis. Within biomedical professions, usage of such terms as epidemic, high-risk groups, risk behavior and victims of AIDS are part and parcel of day-to-day service functions and are reflected in epidemiological reports for control purposes. The education activities of the Ministry of Health include much focus on adolescents, particularly those 15-19 years of age as evinced in the national HIV/AIDS awareness program, PROSTAR. For those already suffering from AIDS, help is mainly in terms of making drugs available to slow down the spread of the virus in the body and for those dying, the Ministry of Healths intention is in ensuring that they die with some dignity. Much needs to be understood about the life of victims, family and children who are affected by AIDS. Interviews with male and female prisoners indicate that there are large numbers of spouses, children and parents who are not aware of having someone in the family infected by AIDS, and if they are then what choices do they have to deal with the situation. There is no information about what happens to the female spouse who has no idea of the risks she

had been exposed to in her life with an HIVpositive. Similarly, there is hardly any data on the child with HIV-positive parents. HIV-infected individuals would probably hope that their spouses and children do not get the infections, and by leaving them to the care of others they would avoid contact with the virus. Yet little do they know that they may have exposed them to infections earlier through pregnancy and unprotected sexual activity. HIV and AIDS are very much thought of as problems associated with helplessness in life and as an outcome of adventures with drugs and premarital and extramarital sexual activities of people who were exposed to them. The public would not know of people infected with HIV had they not been caught for drug taking and put in jail, or after they are medically diagnosed for STD (sexually transmitted disease). This is true for most juveniles who have adventured as bohjan (youthful male loafers) or bohsia (youthful female loafers). Male juveniles under 20 years of age who are now HIV-positive mostly recall that their first experience in sexual activity began two to three years ago, and represented encounters with groups of females who already had HIV infections. As with other groups who may or may not know about the risks

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of HIV or AIDS, they become a challenge for families, society, and the public health sector to educate.

Population Group Awareness about HIV/AIDS

By its nature of transmission mode, HIV infections affect sexually active groups and those who come in contact with contaminated blood and body fluids. Obviously, drug dependents who share needles constitute the major infected group who were at very high risk and have acquired HIV/AIDS. Others who are possibly at risk include those who go for cultural practices such as body tattoo and circumcision or for beauty purposes such as ear-piercing and haircutting. Other groups exposed to the risk of contamination while using some metal instruments are midwives, cupping practitioners, and acupuncturists. Information on the risk associated with some of these practices have been made available through health education brochures, pamphlets, and booklets. Within medical settings, staff and users of health services are always alerted to precautions in dealing with medical and dental surgery. The advice to follow in these practices is to use disposable apparatus and adhere to maximum protective measures. The

question is, are all these medical and health groups aware of the danger in their practice? In day-to-day circumstances involving such cultural practices as the above,the practitioner and recipient must take precaution not to use materials previously used on someone else, and if any injury occurs, prevention through proper cleansing and protection against contamination of body fluids is observed. Prevention against infection can be maximized if the persons involved have the knowledge of the risks involved. Yet in unfortunate circumstances, such as an unscreened blood transfusion during an emergency case or unprotected sexual activity with someone who is thought to be clean, HIV infections can be the outcome of ignorance or carelessness.

The Rise of AIDS-related Activities

The Malaysian government is first concerned with issues related to HIV/AIDS in Malaysia. In the Ministry of Health, the National AIDS Task Force was established in 1985 to deal with the problem in the country. A year later, the Ministry made it compulsory for all donated blood to be screened (Ministry of Health 1995). Following the first admittance of an HIV case in prison, a special program was set up within the

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Prisons Department in 1990. Being new in the area of HIV/AIDS prevention in correctional institutions, prison management turned to the Ministry of Health for advice and guidance. Prison officials are quick to refer to the Medical Officer or any Medical Assistant on duty whenever health problems among HIV-positives arise. They also inform the Health Officer in the residence district about released HIV-positive prisoners a month or so prior to their release. This is to enable the district health office to provide follow-ups on their health status. The increase in HIV/AIDS cases prompted the Ministry of Health to accelerate efforts at creating awareness and knowledge in specific groups as well as the general public about HIV transmission and prevention. Since 1988, 1.6 million copies of information leaflets and 430,000 copies of posters have been printed for distribution to the public and the medical and health staff (Ministry of Health, 1995). Existing and new non-governmental organizations have not been slow either to respond to the need to inform communities and the public about the disease. In particular, their efforts have been directed at providing counseling services to victims of HIV/AIDS and their families. They have set up hospice centers and conduct out-

reach activities especially targeted at bisexuals, drug-addicts, homosexuals, prostitutes, and transvestites. Underlying these activities is the hope that the infected, their families and the public will become more knowledgeable about HIV/AIDS and hence lessen the stigma and discrimination associated with the disease.

IMPLICATIONS ON BEHAVIOURAL CHANGE AND PROGRAMS

Drug-taking, free and unprotected sexual activities and a string of personal, familial and societal factors coexist with other contributory factors for HIV transmission in Malaysia such as the availability of drugs, ease of transportation and availability of communication. These interact in different ways as to affect specific individuals and specific population groups. The prevention of HIV/AIDS is easily said, i.e. avoid risk of infections byas the message goes behavioral change. The question is, can behavioral change alone affect the future HIV scene? Undoubtedly, the answer lies in understanding the fact that HIV/AIDS is a complex involving meshed factors at individual, group, societal and country level.

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Most infected patients know that getting AIDS is very much related to their behavioral pattern, and as such programs which aim at enabling individuals to make the right decisions about risk-taking are appropriate. For the noninfected, stress must be placed on dont ever make the first try of drugs and for those infected, the message to be strongly instilled is you may be the cause for another AIDS case. They should realize that it is important for them to be responsible for their spouses and children. More personal communications among family members should also take place. This involves not only parent-child communication, but the ability of parents to actually listen to and personally deal with their childrens problems.

At the societal level, programs to meet the varied needs of todays adolescents and adults should be initiated by government and non-government agencies. Ethical and moral guidance are needed by groups that cannot get them through familybased activities. If societies are not ready to understand them and what it means to be stigmatized and alienated, ultimately it would probably help everyone better by allowing AIDS communities or villages to be created in specific separate locations, as was suggested by prison positives. Overall, the infected wish for a life that is more meaningful to them, and for the support to actually achieve this.

REFERENCES
Ahmad Nordin Ismail (1977). Crime and adolescents in Malaysia. Journal Malaysian Society of Health, Vol. 15 pp 37-45. Cawley, R. H. (1988). Introduction to AIDS : Psychiatric and Psychosocial Perspectives. Paine, L. (ed.). Chapman and Hall. Dewan Bahasa dan Pustaka (1984). Mencegah Salah Guna Dadah Melalui Kaunseling. Kuala Lumpur.

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CHALLENGES

Geddes, A.M. (1998). Epidemiology, control of infection, medical treatment. In AIDS : Psychiathric and Psychosocial Perspectives. Paine, L. ( ed). op cit. 113-123. Mahmoud, F. M. (1995). AIDS: The Untold Story. Aldurar Distributor and Book Sellers. Marrinan, J. et al ( 1997). Our bodies, our lives: Views and experiences of young Malaysians. Journal Malaysian Society of Health. Vol. 15: 47-51. Ministry of Health (1993). Appendix 1: Number of HIV-Infected Persons Detected in Malaysia by Year, 1985-September, 1993. Epidemiology Unit, Ministry of Health, Kuala Lumpur. Ministry of Health (1995). HIV and AIDS: Information for Health Professionals. Ministry of Health, Kuala Lumpur. Perez, J. Homer (1977). AIDS behind bars: We should all care. Body Positive, Vol X, no 1 pp 1 <http://www.thebody.com/bp/jan97/aidsbe.htm> Platt, Denise (1988). Young children at risk. In Paine,L. (ed). op cit. 57-66. Raj Abdul Karim (1997). National Study on Reproductive Health and Sexuality of Adolescents in Malaysia : Findings of Sample Survey, Qualitative Enquiry and Media Survey (1994-1996). Journal Malaysian Society of Health, Vol. 15: 9-13. Ratnasingam, M. (1995). Psychological characteristics of drug dependence in Malaysia. In Dimensions of Traditions and Development in Malaysia. Rokiah Talib and Tan Chee Beng (eds.). Petaling Jaya: Pelanduk Publications pp 423-445.

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Sorensen, J. L. (1991). Preventing HIV transmission in drug treatment programs: what works? In Cocaine, AIDS, and Intravenous Drug Use. Freidman, S. R., Lipton, D.S. and Stimmel, B. ( eds.). The Haworth Press Inc. Tay Bian How (1997). Preventing adolescent drug abuse in Malaysia. Journal Malaysian Society of Health. Vol. 15:23-29 UNAIDS (1996). Joint United Nations Programme on HIV/AIDS. UNAIDS (1997). UNAIDS Point of View.

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HIV/AIDS AND DRUG ADDICTION: A LOOK AT MALAYSIA

Sharol Lail Sujak

BACKGROUND
Three decades have passed, yet HIV/AIDS continues to spread throughout the world without any end in sight. According to WHO (1997), over 4 million persons in more than 179 nations had been afflicted by the syndrome by 1995, and 17 million individuals throughout the world are HIVinfected. While most cases have been reported in sub-Saharan Africa, it is noted that the fastest increase is occurring in Southeast Asia.

HIV/AIDS in Malaysia
Malaysia is reported among those countries in the WHO Southern Pacific Region with a high number of HIV-infected cases, i.e. 3,125 reported new HIV-infected persons in 1994 (WHO 1997). Over the last decade, HIV infections have increased at an average of 390 to 400 cases a year (Shahabudin 1997). The yearly incidence of HIV-

infected cases is estimated to have increased from 0.02 per 100,000 of the population in 1987 to 18.7 per 100,000 in 1995 (Min. of Health 1996). Assuming that there was some underreporting, the number of HIV-infected individuals in Malaysia was estimated at 70,000 (Min. of Health 1996). The first AIDS case identified was an American resident of Malaysian Chinese origin who came to Malaysia on a social visit in late 1986 and returned in January 1987 (Min. of Health 1988). The second case was a Malaysian national who was diagnosed while he was in the United Kingdom, and the third case was a Malaysian national who had had homosexual contact with a non-national; all three have since died. Since then, the number of people reported with HIV had increased by 1999 to 31,126. Of these, 3,003 had developed AIDS and 2,327 had already died (Min. of Health 1999).

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The majority of HIV-infected and AIDS cases reported in Malaysia are male (95.7% and 93.8%, AIDS/STD Section 1999). Of these, 86.2% and 75.8% respectively were 13 to 39 years of age (88.0% of all reported), that is they were in the socially active and productive cohort (Health Division Services 1996).

fected with HIV. In fact, according to the Watkin Report (Presidential Commission 1988) the term AIDS is obsolete; hence, the generic term HIV disease is proposed here to cover the full range of HIV-related conditions from infection to fullblown AIDS.

HIV and Drug Use in Malaysia Persons with HIV and AIDS
HIV-infected persons can be defined as all individuals infected with the virus, regardless of their clinical status, who show positive in their serological tests. The tests used in Malaysia were the Enzyme-linked Immunosorbent Assay test (ELISA) confirmed by the Immunoblot Assay (Western Blot) and/or isolation of the actual virus (Health Division Services 1988). A person with HIV develops AIDS when he or she contacts certain opportunistic infections; opportunistic infections include those caused by protozoa, bacteria, fungi and viruses (CDC 1992) Since AIDS is not a single disease but a pathological condition made up of many possible diseases, people can experience the course of AIDS in different ways, hence no two individuals have the same prognosis. Obviously, it is difficult to describe the range of health problems that may occur to someone who has become inThe majority of HIV-infected cases (94.0%) identified are intravenous drug users (IVDU), shown in Table 1.
Table 1. Reported Number of HIV and AIDS Cases in Malaysia, by Risk Categories, 1986-1999

Risk Category IVDU Other Blood Related Sexual Perinatal Unknown/others Total HIV

HIV 23,945 33 3,097 17 3,934 31,126

AIDS 1,752 13 700 36 502 3,003

including AIDS cases including AIDS deaths AIDS/STD Section MOH Malaysia 1999)

AIDS (Source:

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Epidemiological Aspects of Drug Addiction in Malaysia

In many parts of the world, injecting drug use is the major mode of HIV transmission. This is the case in a number of Asian countries including Malaysia. It is variously estimated that there are between 180,000-400,000 drug users in Malaysia. The lower figure represents the number of persons who have been identified to the authorities since a registration procedure commenced in 1970. The Ministry of Home Affairs believes that the actual number of active drug users is between 100,000 and 130,000. The use of amphetamine-type stimulants is on the increase, however, and estimates on the number of persons who have ever tried, who use intermittently and who use regularly and in a dependent manner vary widely. From 1988 to 1998, some 160,427 persons were identified as being dependent on drugs (Table 2). Of these, 89,475 of them were identified as first timers whilst the remaining 70,952 drug addicts were categorized as recidivist. In 1988, the National Drug Information System listed a total of 37,588 new drug addicts who had been identified

nationally, giving an average figure of 3,132 new addicts a month. Malaysia, like other countries, still continues to witness an increase in drug use among young persons. In 1998 alone, 74% of the 29,490 cases reported were below the age of 34 (National Drug Agencies, 1998), 98.7% were male and 72.8% were Malay. The Narcotic Report for 1998 also reported that heroin remained the main drug used by 20,558 or 54.7% of addicts while 10,045 or 26.72% use morphine. A study conducted by the Ministry of Health in 1998 showed that 64.5% of respondents among drug addicts were classified as intravenous drug users (IVDUs), and 65.4% of them admitted sharing needles. Among HIV-infected addicts, 92.7% were IVDUs and 84.7% had a history of sharing needles prior to the study. Urban centers like Kuala Lumpur and Pulau Pinang have large populations of injecting drug users, and a substantial but imprecisely estimated proportion of these are thought to be infected with HIV. No state in Malaysia is currently free from injecting drug use or HIV infection. Of these two urban populations, 98.7% of drug users identified in 1996 were males aged between 19-39 years.

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Tab2. Total Number of Active Drug User, By Frequency and Gender (1988-1998). Gender Frequency of Detection Total FIRST TIMER
Male Female Total (Number) (Percent) 87,904 1,571 89,475 55.77

RECIDIVIST
70,059 893 70,952 44.23

Number 157,963 2,464 160,427 100.00

Percentage 89.46 1.54 100.0

*1998 to 10 December 1998; Source: National Drug Information System, Malaysia, 1999.

High proportions of these men were unemployed, and only 0.1% of these persons had a tertiary degree, 0.3% a diploma and 0.7% the equivalent of a higher school certificate. According to the Narcotics Report, 1996, the majority of people in Malaysia who use drugs were in the 20-39 year age bracket (80.0%). A study of the causes of addiction, conducted by the National Drug Information System of the National Narcotics Agency, examined the onset of drug use and the relation between age, types of drug use, racial background and drug addiction. Preliminary findings of the study were that

10% of drug users were first detected after one year of drug use, 15% after two years and 8% after 5 years. In relation to actual drug use, 7.0% took their drug of choice four times a day, 11.5% three times a day, 51.1% two times a day and 26.2% once a day. A much smaller number reported that they took drugs once a week (3.5%) or once a month (0.7%). People who use illicit drugs are generally treated in the community as criminals. Local communities are usually unsupportive and more likely to reject people who use drugs rather than accept and help them as members of the

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community. While it is government policy that people who use drugs be treated as if they have a health problem, public communications and practices are more closely aligned with the former perspective.

AIDS cases. The HIV prevalence among IVDUs was 0.14% in 1988, 5.1% in 1990, 16.5 % in 1993 and increased to 19.5% in 1998.

Risk Behavior Patterns among Addicts

Data collected by the National Drug Agency showed that 78.9% of the drug addicts were 20 to 40 years old, which is a sexually active age group. They are therefore potential agents for the spread of HIV infection not only by sharing contaminated needles and syringes, but also through sexual activities. A study on risk behaviour patterns among 6,320 inmates in Drug Rehabilitation Centres showed that 84.0% of those infected with HIV had shared needles (Ministry of Health 1999). Almost 50.0% of those infected with HIV had a history of sharing needles as well as engaging in regular sex either with their girlfriend or sex workers. The study also revealed that HIV prevalence was higher among IVDUs who had sexual exposure with sex workers, girlfriends and male partners. The study also showed that only 21.3% of the total respondents and 18.9% of those infected with HIV had ever used condoms during sexual intercourse during the last 3 months prior to the study. This would further increase the risk of transmitting the infection to their sexual partners.

HIV-Infected Drug Abusers

Given the above scenario, it is clear that Malaysia faces a serious challenge since this figure reflects only a percentage of the total problem. In reality, the actual extent of drug addiction as well as the continuing spread of the problem poses major economic, health, security and social threats to the country. This includes their association with HIV, since from the 160,490 cases of drug addiction reported by 1998, 20,301 (12.0%) were identified as being HIV- positive. A study of drug users conducted by the Ministry of Health in 1998 showed that 65.4% of respondents admitted sharing needles and 64.5% were classified as IVDUs. Among reported HIV-infected drug addicts, 92.7% were IVDUs while 84.7% had a history of sharing needles prior to the study. In Malaysia, the first HIVinfected drug addict was detected in October 1988. As of June 1999, a total of 23,547 HIV-infected users or 76.0% of all reported HIV-positives were identified. In addition, IVDUs included 680 or 58.1% of the total

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Addressing the Problem

A National AIDS Prevention and Control Program was established in response to the emergence of HIV/AIDS in Malaysia. This includes the Ministerial Level Committee on AIDS, chaired by The Honorary Minister of Health, consisting of Ministers from various Ministries in the higher policy ruling body dealing with issues related to HIV/AIDS. The functions of the committee are to formulate, coordinate and evaluate strategies of prevention and control programs for HIV. The implementation of these programs involves a variety of government agencies and non-governmental organization (NGOs). In view of the absence of curative treatment or vaccination, the major objectives of the HIV/AIDS strategy in Malaysia are: 1. To reduce the risk and interrupt the transmission of HIV infection resulting from: Contaminated blood, viz.: transfusion of blood product, through contaminated needles/syringe and tissue/organ transplants. Sexual activities. Vertical transmission from infected mother to her unborn child.

2.

To reduce the incidence of HIV/AIDS cases and reverse the increasing trend. To reduce morbidity and sufferings associated with HIV infection. To minimize the impending impact of the AIDS epidemic. To mobilize the total national resources both within the government and non-government sectors to achieve the above objectives. To promote international collaboration and co-operation to prevent and control HIV/ AIDS among the nations of the world.

3.

4.

5.

6.

In order to achieve the objectives as stated, various activities was carried out in accordance with the strategies planned since 1992. Although the activities carried out in Malaysia are in line with the resolution of the 39th World Health Assembly (WHA) in May 1986, these are very broad and not directed at the targeted population, that is, drug addicts.

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According to management strategies, the success of any program includes the specific objective of directly hitting a targeted population. In the case of Malaysia, for example, HIV/AIDS prevention or control programs should not only be targeted at those in the general public at risk, e.g. homosexuals, prostitutes and spouses of HIV-infected persons, but more so at the drug addicts who constitute the major proportion of those infected with HIV. However, intervention programs to meet the problems of IVDU-related HIV and AIDS have confronted planners with a scarcity of information in this area. This is due to the fact that the response of government and society to drug addicts has historically been one of rejection, disapproval and legal proscription; as a result, drug addiction has become a highly covert and poorly reported behaviour. Stringent laws, adverse publicity and unsympathetic attitudes of the health sector as well as the public in general have hindered drug addicts from participating actively and voluntarily in treatment program or availing themselves of those health and social services that might have provided support. Many of these factors have been attributed to a lack of creative action on the part of the providers and social

services, and thus many opportunities for intervention have been missed or neglected. Given the nature of the HIV/AIDS epidemic in Malaysia and the current situation of AIDS prevention and control, much of this needs to be changed. The common factor in IVDU-related HIV infection appears to be the sharing of needles and syringe. In the sharing of needles or syringes, drug injecting is both a primary and a symptomatic problem. A primary problem refers to the source of the lethal virus entering into the body and thus where certain of the intervention strategies must be directed, while symptomatic refers to the use and sharing of equipment, that is, to related fundamental and underlying problems. Legally and socially, marginalized drug addicts have distanced themselves from the health and social services and are often unaware of or unwilling to use the opportunities that could be provided, such as purchase of needles and syringes and counseling about personal and public health. The social attitudes towards drug addicts among health workers, pharmacists and others may have, albeit unintentionally, made prevention and support services as well as needles and syringes appear even more inaccessible than they actually are. This may

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contribute to a collective feeling of isolation and so they tend to share equipment. In Malaysia, over-the counter sales and other ways of providing clean needles and syringes and reaching out to drug addicts have been traditionally hindered by a variety of legal, political, social and traditional constrains. In the broader social framework in which drug addicts have been stigmatized, actively prosecuted and often associated with a range of other social problems, the sharing of needles and syringe may ironically have come to represent, for some individuals, a symbol of group cohesiveness and solidarity which may enhance their experience of drug addiction.

Intervention Strategies
Although the purpose of this paper is not to discuss the intervention aspect of HIV-disease in drug addicts, at this point it is appropriate to think of some intervention strategies to curb the HIV-disease related to drug addiction. Following from the above discussion, the epidemic of HIV-disease in the Malaysian scenario cannot be separated from the drug misuse behavior. The sharing of contaminated needles among the injecting drug user is the primary source of transmitting the virus.

Furthermore, injecting drug users are usually a sexually active group, which would further increase the risk of transmission to their sexual partners. The attitude of the public and the way government tries to manage drug abuse thus complicate the problem. Two critical needs have to be strengthened. The first is the need to evaluate the prevention of drug addiction and in so doing, limit the number of people who might go on to be exposed to HIV infection through primary transmission. The second is to prevent secondary transmission of HIV. Unfortunately, primary prevention efforts have had only limited success to date. Programs and activities involving drug legislation and law enforcement based on the principle of limiting the supply of illicit drugs have been difficult to implement and sustain. In spite of the many efforts that have been made, the number of drug addicts is growing and there is no sign that this is subsiding. Despite its proven difficulties, intervention by the prevention of drug supply has assumed priority importance in the eyes of policy makers and the public. The National Narcotic Agencies provide treatment and rehabilitation program for those who are detained under the Drug Dependent

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Treatment and Rehabilitation Act 1983. The main objectives of this program are to create awareness of HIV/AIDS, disseminate HIV/ AIDS information to the inmates, provide early detection of HIV infection among inmates, prevent the transmission of HIV/AIDS and to provide medical and health care services to those infected and affected by the HIV disease. Statistics have shown that the success rate in rehabilitating drug addicts is questionable, whereby about 50% of the inmates who had undergone such rehabilitation program actually relapse back to their previous addiction behavior on their release. In addition, another objective of the Drug Rehabilitation Centres is to rehabilitate the detainees. These are placed in any of the 22 Drug Rehabilitation Centres for the two-year rehabilitation programs. However, the maximum capacity of all the Drug Rehabilitation Centres throughout the country is 12,000 inmates. In addition, the cost of the programs is very high. Thus it is suggested that the needs and priories of Drug Rehabilitation Centres should be revised accordingly based on the latest available data and forecasts. The second and equally important priority - namely, the need for action to prevent any further spread of HIV among IVDUs who, for

what ever reason, are unable or unwilling to stop injecting drugs - may well be where the real challenge to the socio-cultural perceptions and mind set of the public lies. The main risk factor carried by the increase of HIV-infected drug addicts is due to their habit of sharing contaminated needles and syringes. Among the more innovative schemes currently being tried are those that facilitate access to clean needles and syringes, and this is perhaps most creative from the public health perspective. In order to implement the program, however, the most important prerequisite factor is to change the mind-set of the public towards drug addicts.

Conclusion
Drug use in general and drug addicts in particular, are now becoming global problem, including Malaysia. For a variety of health or social reasons, the problem need urgent and innovative attention. Since the first AIDS case was detected, drug addiction has become a key factor in the epidemiology of HIV diseases. Contaminated needles and syringes are identified as the means of transferring contaminated blood from one user to another. Previous approach to primary prevention set by stringent laws have been limited to the control

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of drug addictions. The secondary prevention or preventing of HIV infection among IVDU if it is to be successful will need broader support from both the political and social structures.

Acknowledgement
I am extremely grateful to Professor Rahimah Abdul Kadir, Department of Community Dentistry, University of Malaya, for her comment and assistance in preparation of this manuscript. Note: Dr. Sharol is a Dental Officer with the Ministry of Health, Malaysia. Presently pursuing a doctoral study at University of Malaya.

REFERENCES
Centre for Disease Control (CDC) (1993). Revised Classified System for HIV Infection and Expanded Surveillance Case Definition for AIDS among Adolescent and Adults. Morbidity and Mortality Weekly Report, 42, RR-17, 1992 Ministry of Health (1999). HIV/AIDS Surveillance System in Malaysia. AIDS/ STD Section, Department of Public Health. Kuala Lumpur: Ministry of Health Malaysia (1999). HIV/AIDS Prevention and Control Programme in Drug Rehabilitation Centres. Kuala Lumpur: Ministry of Health Malaysia ______(1988). Annual Report AIDS and STD. Kuala Lumpur: AIDS and STD Section, Ministry of Health Malaysia. National Drug Agencies (1998). Data (January 10 December 1998). Kuala Lumpur: Ministry of Internal Affairs Malaysia. Presidential Commission on the Human Immunodeficiency Virus Epidemic (1998). Report. Washington, D.C.

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Shahabudin, H.A. (1997). Current Updates on HIV/AIDS and Relevant Issues in Dentistry. Kuala Lumpur: Ministry of Health Malaysia. WHO (1997). More Efforts to Prevent and Control the Spread of AIDS. Press Release. WHO Regional Office for the Western Pacific, September 1997.

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INSIGHTS INTO ADOLESCENT BEHAVIOUR IN RELATION TO HIV: SOME MALAYSIAN EXAMPLES

Norana Johar3 and Haliza Mohd. Riji4

INTRODUCTION Relevance of Adolescent Behavior

Adolescence is a brief and transitory period in an individuals life, however its importance in the human life span is beyond doubt. The youngsters are faced with challenges and one of them is health. According to the Deputy DirectorGeneral of Health Malaysia, in general Malaysian adolescents are facing health problems that are closely related to lifestyle which can also involve social problems, for example cigarette
3

smoking, abuse of narcotic drugs (particularly marijuana and heroin), juvenile delinquency, truancy, sexual experimentation and behavioral problems related to boredom. Teenage pregnancy is also a serious adolescent problem. Worst of all is the emergence of HIV/AIDS, the new threat for these younger generations.

Social and Cultural Aspects

The social and cultural relevance to this phenomenon is linked to what has been termed highrisk behavior. Of importance are drug taking and drug addiction, besides sexual behavior. Drug taking is not just an individual behavior but is related to a string of behaviors that run against cultural norms and sanctions, for examples, stealing, lying and objecting to parental guidance and advice. These behaviors also mark the power of peer influence in adolescents social life. It is vi-

Presently a Corporate Communication Officer in Kuala Lumpur and formerly Research Officer attached to the Institute of Health Promotion. Principal Investigator in the study The Sociobehavioral Determinants in HIV-Infected Persons (IRPA- funded research project 06-0501-0129).

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tal to note that children are just as receptive to peer reinforcement for antisocial responses as they are for prosocial behavior, and that conformity to peer pressure is greater during adolescence than any other stages in life.In addiction, sexual activity is another high-risk behavior, which involves adolescents. According to Marina Mahathir (1997), many young people at this age try to express their sexual feelings by experimenting in spite of not having fully reached physical and emotional maturity. Again, this conduct indicates the importance of religious teaching, the roles of parents and the influence of culture and society in adolescents lives. Since adolescence is a period in the process of socialization for adult roles in family, school and society, HIV/AIDS infection in this group poses a major threat to the future of the nation.

Personality Development
This issue has psychological relevance as well since adolescence is a period of transition from childhood to adulthood, which involves vast physiological and psychological changes. This period witnesses sexual development, family conflict and the search for identity in the process of building ones own personality. According to Wan Mahmud (1997), personal conflicts arise at this stage of life

due to the uncertainty of neither being a child nor an adult, and in most culture this begins with puberty. Puberty signals the development of reproductive capacity, and in the modern world where young people are exposed to sexual stimuli in magazines, on television and by the movies, the tendency to experiment with sexual activities is far greater than before. Family conflict also is another complication that has to be resolved by adolescents. The adolescent-parent relationships are inevitably stormy at this period, where parents especially mothers tend to nag, squabble and bicker with adolescents more than other age groups at home. The conflict is seen as an attempt by the adolescent to show control over his or her life, where parents conflict with their childrens desire to administer their own life and rules. However, despite the disagreements, adolescents tend to seek their parents advice on important matters but they consult their peers about areas of adolescent culture. Adolescence also is the period of identity searching where adolescents are faced with the questions; who am I? as well as how to behave? and what to do in life? Resolution is not as simple as the questions may seem. This is due to the complexity of decision-making in this modern world in which ado-

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lescents are presented a large array of possibilities to answer their questions. Thus, the adolescence period can be considered as psychologically fragile, including the potentiality of HIV infection if steps are not taken to provide them with needed information.

Educational and Economic Aspects

According to statistics, in Malaysia the largest number of people infected with HIV/AIDS (89.3%) is in the age group of 19 to 39. This is important, as it shows that the bulk of HIV-positives belong to the socially and economically productive group including late adolescence. Assuming these contact AIDS, the implications are that the country is losing part of an important sector of the population that can contribute to the cultural and economic wellbeing of the nation. Study of adolescent behavior pertaining to HIV/ AIDS also has its educational and economic relevance to this income and creativity-generating group. Adolescence is a period in which people have psychosocial crises to be solved as they attempt to become active, rational and productive adults. For those who choose to follow higher education and the professional world, the competitive pressures and stress are even greater. In Malaysia as in many parts of the world, educa-

tion is highly valued, as it provides an individual with knowledge and skills to be applied in relation to themselves and to the needs of the society at large. Education here is thus perceived at once as an asset for the individual, the society and the nation. As these adolescents will be the future generations and leaders of the country, their contributions will help to determine the strength and weakness of the nation.

ISSUES IN ADOLESCENT BEHAVIOR Identity

In searching for personal identity, often enough adolescents are involved in identity confusion or identity crises. According to Erikson (1968), an identity crisis is a temporary period of confusion and distress in which teenagers experiment with alternatives before settling on a set of values and goals. Those who resolve the crisis will reach an identity status, which is labeled identity achievement, in which an individual is committed to a formulated set of self-chosen values and goals. They know who they are and they know where they are going. However, those who fail to resolve the crisis can end up with an identity diffusion, lacking in clear

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direction, not committed to values and goals nor actively trying to reach them. The presence of negative elements in the period of identity crises are very dangerous as these are bound to have an impact on the kind of decisions adolescents would make. In this case, the feelings of self-worth and competency are at risk and might result in individuals who are not able to define their roles and responsibility in the society. Resolution for identity crises is critical for adolescents as it affects the kind of adults population the nation would have in the future.

Intimacy
The need for intimacy is another issue in adolescent behavior that should be highlighted, as many people tend to neglect it. Intimacy means an ability to care about others and to share experiences with them.Based on Eriksons Stages of Psychosocial Development (1968), the crises of intimacy appear in early adulthood when the failure to resolve such problems at this stage will result in a felt situation of isolation. Studies have found that people who have someone to share ideas, feelings and problems with are happier and healthier than those who do not. In case of adolescents, parents and peers play a very important role in the subject of

intimacy, as these two groups are the ones that have close relationship and contact with them. A negative environment at home would make adolescents seek alternatives outside in their needs for closeness and friendship. Intimacy also could mistakenly lead to romantic feelings or more seriously, a sexual relationship if the friend that he/she shares problems with is of the opposite sex. Thus the need for intimacy is something that has to be understood and attended to closely by the parents and the involved society. The obvious solution for intimacy problems is to return to peers who generally are more understanding and caring for the needs of adolescents. Aside from being friends with whom one can share problems and experiences, peers also impose negative and positive influences in adolescent social life. According to the study done by Brown, Clasen and Eicher (1968), early adolescents are more likely than younger or older individuals to give in to peer pressure, especially in antisocial behavior. It also showed that young people who feel competent and worthwhile are less likely to fall in with peers who engage in undesirable behaviors such as early sexual activity and promiscuity, delinquency and drug use. To overcome the danger of extreme peer pressure, authoritative parenting that encourages

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high self-esteem, social and moral maturity and positive views of parents is one way to produce adolescents who have greater resistance to negative peer influence. Even so, peers are not something that should be denied in adolescent life, but rather to be monitored closely to ensure the resistance of negative influences by adolescents.

Physiological Change
Physiological changes in adolescents are obvious and bring about associated psychological and behavioral changes in the adolescent individual. The biological changes start with a rapid physical growth accompanied by the gradual development of the reproductive organs and secondary sex characteristics. The size and shape of the body change in accord with gender. In girls, menarche is experienced and breasts are developed while for boys, puberty is reached and beards started to grow. Everybody experiences these changes, including its characters of moodiness, inner turmoil and rebellion. Girls in puberty talk less with their parents and have less positive feelings about family relationships. They also tend to perceive more control by their families after menarche than before.

sexual feelings that they may choose to suppress or to experiment with. According to the National Population and Family Development Board, high rates of gonorrhea in Malaysia occur amongst both boys and girls aged 15 to 19, and prostitution can start in earlier adolescence. A related study in 1994 on adolescents sexual behavior of which 1.0% (aged 13-19) and 2.9% (aged 18-19) have already experienced sex, while 90.0% had access to pornographic material. At this stage in life, parents must follow their role in informing their adolescent children of the important things about sex and should guide these young people through this period of sexual awakening. Ignoring or shutting channels for information concerning sexual matters for cultural, religious or personal reasons once again makes adolescents turn to peer groups who may also lack correct information about it.

CASE STUDIES OF HIV-POSITIVE WOMEN

It is informative here to review some examples of females who were exposed to HIV and became positive. Three cases are given, all the more informative and tragic, since they are essentially the result of the adolescent period and lack of information. This information was obtained during in-

Sexual Activity
At this period, sexual reproductive organs are maturing and many adolescents experience

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terviews in prison as part of the larger study mentioned.

Ms. A
Ms. A was 18 years old and six months pregnant during the interview session. She was in the prison for having illegal sexual intercourse according to Islamic Law. Ms. A came from a broken family that did not stress religious knowledge and practice. She was never a drug user and she contacted HIV through sex. When she was 17, she was date-raped. Married and divorced at a very young age, Ms A also had casual sexual activities with other men. She was never informed about the danger of unprotected sexual activities and the kind of protection needed when involved in such activity. At the time of the interview, she was in a state of shock as she just received the results of her positive HIV test three days before. There was no prior or postcounseling offered to help her deal with the dreadful news. She mentioned twice about not wanting to live in this world anymore during the interview.

fun without realizing the danger of drug addiction. Later on, she became addicted and started to use drugs intravenously. As an injecting drug user (IVDU), she shared needles with other addicts and contacted HIV through needle sharing. Ms. B has a husband who is also a drug addict and two teenage sons. Her husband never used drug injection and is free from HIV. Even though she has been in and out of jail for the past several years, it is very difficult for her to separate herself from heroin. After release, she would continue with drugs and try to protect her husband from contacting HIV.

Ms. C
Ms. C was 32 years old. She had been in and out of prison for drug trafficking and abusing. She came from a quite wealthy family. However, both her parents were busy making money, and so she was left under the care of her grandmother since she was small. Her schooling years was spent in the wrong company. At the age of 15, she was already heavily using liquor and drugs, and her nights were mostly spent at discotheques and pubs. Four years later, she started working at a bar to earn money for liquor and drugs. There she met and came to know her husband, who was also a drug pusher and an addict. She had a child with him and another two children with her lover while her husband was serving his time in prison. Ms. C was

Ms. B
Ms. B was 40 years old yet her drug problems started when she was 20. She was given total freedom during her teenage years and this led her to experiment with drugs. On her first try, she only hoped for some

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an intravenous drug user and she engaged in unprotected sexual activities. In the middle of 1998, she was confirmed as HIV-positive. Though all of her immediate family had been informed about her health condition, only her auntie had paid her a visit. Frustrated over the whole situation, she mentioned twice about making suicide attempts during the course of the interview.

with this attention often results in alternatives influences such as disproportionate peer group pressure, sexual promiscuity and substance abuse.

IMPLICATIONS FOR BEHAVIORAL CHANGE

Facing the complex modern world is not an easy task for adolescents; therefore parents awareness of problems encountered by these young people is desperately needed. Of importance are the strengthening of family relationships and support, involvement in adolescent interests and healthy interaction between family members. Strong family relationship and support is very necessary to provide adolescents with trust and confidence in their family members. The trust built can encourage adolescents to express their feelings while parents can help in giving suggestions to solve their confusion over issues. As adults who have more experience through life, parents must not be too authoritative in their opinions, thus rejecting the adolescents. The effort to listen and consider adolescents views is one way to develop a healthy relationship and environment for this group of young people, while advice is another way to enhance the ability of adolescents to make informed choices and decisions.

Patterns in the Case Studies

As seen in the three cases mentioned above, nonattentive parents had indirectly given tremendous negative impacts to their childrens lives by neglecting their needs for love and protection in the process of development. What can be concluded from the case studies are (i) the fathermother relationship is vitally important in process of children development and (ii) adolescence is a fragile period open to negative influences. It is also evident that social and cultural factors can contribute to the problems of HIV infection. The structure of the family such as the father-mother relationship and the amount of quality-time spent with parents are factors, which influence adolescent behavior and ultimately can have causal relations to adolescent HIV infection. As mentioned above, the need for intimacy is directly related to parental involvement in their childrens life. The inability of parents to provide children

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The government and the NGOs have made major efforts to initiate a healthy lifestyle and environment for adolescents, such as the launching of PROSTAR, Program Sihat Tanpa AIDS untuk Remaja, (Healthy Lives Without AIDS for Youth) and Rakan Muda (Young Friends), in addition to many other campaigns to promote positive values for adolescents. However, the government and NGOs as well as parents and the community require great sensitivity to adolescent issues in developing preventive programs for children and the early teens. These programs also have to reach all levels of population as well as adolescents. Increased attention has to be given to adolescents who are weak academically, who come from low-income families and those who are not keen to face issues

concerning them, particularly the issue of HIV/ AIDS. These groups, if neglected, will create bigger problems for society in the longer run. Children and early teens have to be informed before they can make informed decisions and choices for their futures. The problem of HIV/AIDS does not lie only with the individual at risk, nor does blaming the person solve it. It is the associated health and social problems that have impacts on the society and economy of the nation, as the Director-General of Health Malaysia said in 1996. Thus, behavioral change in all parts of society, not only from the infected and the high-risk groups, is necessary to cope with the problem of HIV/AIDS in Malaysia.

REFERENCES
Atkinson, R.L. et al. (1990). Introduction to Psychology (Tenth Edition) Florida: Harcourt Brace Jovanovich. Baumrind, D. (1991). The influence of parenting style on adolescent competence and substance use. Journal of Early Adolescence 11:56 - 95. Berk, L.E. (1994). Child Development (3 Edition) Massachusetts. Allyn & Bacon.

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Brown, B.B., Clasen, D. and Eicher, S. (1986). Perception of peer pressure, peer conformity disposition, and self-reported behavior among adolescents. Development Psychology 22: 521- 530. Erikson, E. H. (1968). Identity, Youth and Crisis. New York : Norton. Harrison Aziz Shahabudin, Hjh. (1997). Masalah jangkitan HIV di Malaysia dan cabarannya. Journal Malaysian Society of Health. 15: 55-59. Marina Mahathir. (1997). Adolescence of the 21st century youth communication programmes: An approach to HIV/AIDS prevention. Journal Malaysian Society of Health. 15:19-22. Mohd Feroz Abu Bakar. (1996). Belia Melayu paling ramai hidap AIDS. Berita Harian. 21 October 1996. Kuala Lumpur. Norana Johar and Mazitah Ngah.(1998). Working Paper on Female Inmates HIV Cases in Malaysia. Division of Social & Behavioral Research, Institute for Medical Research, Kuala Lumpur, Malaysia. Traupmann, J. and Hatfield, E. (1981). Love and its effects on mental and physical health. In Fosel, R.W, Hatfield, E. Kiesler, S.B. and Shanas, E. (eds) Aging: Stability and Change in the Family. New York : Academic Press. The Star (15 October, 1997). Teaching Women to Take Charge. Wan Mahmud Othman, Dato. (1997). Adolescents, health and development. Proceedings of the 20th Annual Seminar of the Malaysian Society of Health: Adolescent Health Challenges of the 21st Century. Journal of the Malaysian Society of Health 15:1- 8.

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Reproductive health encompasses issues of sexuality, contraception, pregnancy and births, and sexually transmitted diseases (STDs). The International Conference on Population and Development held in Cairo in 1994 called for specific attention to the reproductive health of adolescents where by,

KNOWLEDGE, ATTITUDES AND DETERMINANTS OF PERCEIVED RISK RELATED TO HIV/AIDS AMONG ADOLESCENTS IN MALAYSIA

6&7

of Malaya, 50603 Kuala Lumpur, Malaysia

Health Research Development Unit, University

published in Medical Journal Malaysia, vol. 57

This paper is a shortened version of the article

no 1 March 2002: 3-23

... information and services should be made available to adolescents that can help them understand their sexu-

INTRODUCTION

Siti Norazah Zulkifli6 and Wong Yun Lin7

HIV/AIDS

This gives official recognition, ratified by Governments of signatory countries, to the reproductive health risks faced by young men and women. These risks include higher maternal mortality and pregnancy complications associated with adolescent pregnancies and births, high unmet demand for contraception among adolescents, forced initiation and participation in sexual activity, high risk of STDs, including HIV

ality and protect them from unwanted pregnancies, STDs and subsequent risk of infertility. This should be combined with the education of young men to determination and to share responsibility with women in matters of sexuality and reproduction. (ICPD 1994, para. 7.41).

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infections, forced marriage, induced abortions, poor parenting for the children borne (Shane 1997; WHO 1993). In fact, the World Health Organisation estimates that the highest rates of HIV infection are among youths aged 20 to 24 years, followed by adolescents aged 15 to 19 years, and furthermore, 60% of new infections are among these age groups (Shane 1997). In Malaysia, the trends in HIV/AIDS show that numbers have increased dramatically since the first cases were identified in 1986 (see Figure 1). The figure for 2000 is 5,107, a further increase (MOH 2002).

From 1985-1995, there were a total of 14,418 HIV+ and 331 AIDS cases in Malaysia. The majority were men. Although only a very minute proportion of AIDS cases were adolescents (13-19 years), 28 percent of them were between 20-29 years, suggesting that the latter cohort would have first contracted HIV during their teens, given the eight year incubation period. With regards to transmission mode, the majority of Malaysian HIV+ and AIDS cases were intravenous drugs users, contracted via sharing of infected needles. As of February 1996, a total of 318 had died, and most were young people aged between

Figure 1. Trends in New HIV Infections Reported in Malaysia 5000 4500 4000 3500 3000 2500 2000 1500 1000 500 0
Asymptomatic HIV Infections

Male Female

50

19 8 19 6 8 19 7 88 19 8 19 9 90 19 9 19 1 9 19 2 93 19 9 19 4 9 19 5 96 19 9 19 7 98 19 99

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20-39 years old. It has been reported that the Malaysian government spends RM500,000 a year for treating each AIDS victim; and RM120 million had been spent for

METHODOLOGY The Malaysian Health and Lifestyle Survey was conducted in 1991 for the Ministry of Health (MOH) by University of Malaya (Social Obstetrics and Gynaecology, Faculty of Medicine) and DKT Consultants (Malaysia), a non-profit organisation, with technical and financial assistance from the World Health Organisation. It was focused on knowledge, attitudes and practices related to HIV/AIDS among specific target groups of respondents in Peninsula and East Malaysia. The general objectives of the Survey were to provide: (1) baseline data on AIDS and STD (sexually transmitted diseases) knowledge, attitudes and practices for future evaluation by the Ministry of Health AIDS prevention and education programs, and (2) formative data to assist the MOH in the design and implementation of AIDS education campaigns, and to identify strengths and weaknesses for future education programs. The survey locations were primarily urban areas, reflecting the distribution of known HIV cases in the country at that time. Specific sites were purposively selected to cover all regions in the country and comprised Johor Baru, Kuala Lumpur and its suburbs, Ipoh, Penang,

the prevention and control of HIV/AIDS programs in the country from 1993 to 1995 (Ministry of Health 1995; New Straits Times 1996). In 1997, the cumulative total was 19,385 HIV+ cases, and the infection rate was 383 persons a month. Ninety-five percent of these were men and five percent were women. Until early 1996, 50 percent of the HIV+ cases were below 29 years of age (New Straits Times 1997). From a health perspective, increased awareness of the HIV/AIDS problem has added further concerns over sexual practices among youths, more so, in Malaysia where there is little access to reproductive health services for unmarried people. The public health implications of these changes relate to unplanned and early childbearing, sexually transmitted diseases, infertility, and sexual exploitation. This paper describes findings on knowledge, attitudes and determinants of perceived risk related to HIV/ AIDS among Malaysian youths based on data from a nation-wide Survey on Knowledge, Attitudes and Practices related to HIV/AIDS in Peninsular Malaysia.

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Alor Setar, Kota Baru, Kuching and Kota Kinabalu (major urban centres), and one rural setting each in Kedah and Kelantan. Data were gathered by a combination of face-to-face interview and self-administered questionnaire (for the sexual practices and STD components). The questionnaire was designed with the assistance of a consultant from the World Health Organisation. It was based partially on a questionnaire developed by WHO (1990). These were modified to suit the local context with particular attention given to culturally appropriate wording. A list of four statements on sexual attitudes was obtained from the questionnaire used in a survey on Knowledge, Attitudes, Behaviour and Practices undertaken in Singapore (Ong et al 1989). Questionnaires were made available in three languages (Bahasa Malaysia, English and Mandarin), and pre-tested and revised before the survey. Among others, the contents covered socio-demographic background, and knowledge and attitudes to HIV/ AIDS. The principal researcher at the Faculty of Medicine, University of Malaya, trained all interviewers. Interviewers were aged between 19 to 38 years of age. Although an attempt was made to match the gender of the interviewer and

respondent, this was not always possible under field conditions. Interviewers worked in teams of four, including one who was the supervisor. Each team also had at least one interviewer who could speak Mandarin or Cantonese (a common Chinese dialect), and Tamil. Survey respondents were recruited according to specific target groups, including general public youth aged 17-24 years (n=540) and secondary school children aged 16 - 17 in Forms Four and Five (n=247). In total, information from 2,131 respondents was collected. All respondents, except for the secondary school subsample, were selected systematically (every fifth or 10th person depending on targeted numbers of respondents) from purposively selected locations at each site. Secondary school respondents were recruited from a systematic selection of schools from school listings by survey location. With permission from the Ministry of Education and the School Principal, the eligible classes scheduled to have Physical Education on the day (s) the research team visited were allowed to participate in the survey. To all respondents, the purpose of the survey was explained carefully and questionnaires were kept confidential to encourage frank responses. It was also stressed to the respondents that participation was voluntary, and

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that they should skip any questions that they were particularly not comfortable answering rather than provide false responses. Youths were recruited through the abovementioned two sources in order to capture a wider cross-section of young people. In Malaysia, enrolment in school is almost universal. However, a considerable proportion drop out after Form Three at age 15 (lower secondary level or nine years of schooling) and, even more, after Form Five (upper secondary or 11 years of schooling). The latter represents a minimum qualification for most skilled jobs, and entrance to higher education. Youths still in school and those who have left are thought to differ in ways relevant to the focus of the survey. For this paper, data on respondents aged 15-21 years from among the public youth and the secondary school sub-samples were combined. Statistical significance of differences between groups for categorical variables was tested using the chi-square statistic or Fishers exact test for cross-tabulations with small cell frequencies (n (5). Differences between groups in knowledge and attitudes scores were tested using t-test for two groups and analysis of variance for multiple groups. The non-parametric Wilcoxon Rank-Sum and Spearmans Rank Correlations were also applied

to test for significance of differences between group medians. Logistic regression analysis was applied to assess selected determinants of perception of self-risk to HIV/AIDS. Goodness of Fit tests were run on each model.

RESULTS
The results from the descriptive analysis are provided below. The background of the respondents are shown in Table 1.

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Table 1. Background Characteristics of Respondents (N=520)

Characteristic Sex Male Female Age-group =(19 years > 19 years Race Malay Chinese Others Religion Muslim Buddhist Christian Others Education Form 5 or lower Form 6 or higher Employment Not employed Employed Location/Residence Urban Rural Marital Status Single/never married Married/separated/divorced Sub-sample2 General public School-based Sexual Experience3 Yes No n1 263 256 330 190 272 142 106 291 106 73 49 458 52 430 90 449 71 505 6 275 52.88 64 418 % 50.67 49.33 63.46 36.54 52.31 27.31 20.38 56.07 20.42 14.07 9.44 89.80 10.20 82.69 17.31 86.35 13.65 98.83 1.17 245 47.12 13.28 86.72

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Notes to Table 1.
1 2

N = 520. Subtotal (n) may be less than 520 due to missing data. General public sub-sample: Respondents recruited from purposively selected public areas in survey locations; School-based sub-sample: Recruited from selected secondary school in survey locations. Response to question Have you ever had sexual intercourse (vaginal, oral, anal) with a male or female?

KNOWLEDGE OF HIV/AIDS
Table 2 shows the responses from the openended question on modes of transmission phrased as follows: What are the ways HIV/AIDS is transmitted? Multiple responses were allowed (up to five responses per respondent). The verbatim responses were compiled and coded as shown. Differences between groups that were statistically significant are also included in Table 2. The most common response cited was related to sex (71%), e.g., sex, sexual intercourse, casual sex, promiscuous sex. A statistically significant higher proportion of the school-based sub-sample cited this response compared to the general public sub-sample. No other significant differences were found by socio-demographic factors. The next most common response was related to intravenous drug use (IVDU) (63%). Specific verbatim answers given were sharing needles, sharing syringes or skin pierc-

ing with infected needles. Again, a significantly higher proportion (70%) of the school-based sub-sample cited this mode of transmission compared to the general public sub-sample (57%). About nine percent gave responses related to drugs (drug addicts, drug use) without specifying the intravenous route or needles or syringes. Significantly more of those with higher education level gave this response, and more among the general public sub-sample compared to school-based. That is, more of those with Form Six or higher and more among those recruited from the general public gave responses in this manner. Blood and blood products or blood transfusion, including mentioning infected blood, was another common category of response cited by about 40% of respondents. Other answers were cited by less than half or only by a minority of the respondents. Although the numbers citing prenatal transmission was quite small, a significantly and substantially higher proportion

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Table 2. Knowledge on HIV/AIDS: Percent of respondents by the responses on modes of transmission 1 and by selected background characteristics (N=520)
Method of HIV/AIDS Transmission a. Through sex or sexual intercourse/sex/promiscuous sex Sub-sample General public School - based Through sharing needles/IVDU/Skin piercing with infected needles Sub-sample General public Schoolbased Through blood and blood products/blood transfusion Homosexual activities Race Malay Chinese Others Drug addicts/using drugs Education Form 5 or less Form 6 or above Sub-sample General public School - based From mother to baby during pregnancy Sub-sample General public School - based Prostitutes Race Sub-sample h.
1

N 520 275 245 520 275 245 520 520 272 142 106 520 458 52 275 245 520 275 245 520 272 142 106 275 245 520

% 70.96 66.91 75.51 62.88 56.73 69.80 40.38 24.62 28.68 14.79 27.36 8.85 8.08 17.31 13.45 3.67 6.73 2.91 11.02 5.38 5.88 1.41 9.43 8.00 2.45 15.00

p-value

0.031

b.

0.002

c. d.

<.05

e.

<.05

f.

<.0001

g.

Malay Chinese Others General public School - based

0.019 0.005

Others

Multiple responses to open-ended question What are the ways HIV/AIDS is transmitted? were compiled verbatim and coded under the above categories.

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from the school-based sample compared to the general public respondents gave this response. Finally, there were differences by race as well as by subsample in the proportions who mentioned prostitutes specifically. Worthy of note, 15% of respondents gave a variety of other responses to this question, majority of which referred to incorrect methods of transmission, such as transmission by the dentist, barber, and shaving. A series of close-ended questions were also posed to assess levels of knowledge and misconceptions regarding modes of transmission, treat-

ment and prevention of HIV/AIDS. These findings are presented elsewhere (Zulkifli and Wong 2002).

ATTITUDES AND BELIEFS RELATED TO HIV/AIDS

A list of ten statements was posed to elicit attitudes and beliefs related to HIV/AIDS. As shown in Table 3, almost 40% of respondents in the present survey said yes to the statement that AIDS is confined to only drug users and homosexuals.

Table 3. Attitudes and Beliefs Towards HIV/AIDS: Percent Distribution of Respondents by Responses to Statements, and by selected Background Characteristics
Response Statement Only drug users and homosexuals get AIDS. Age group - 19 years > 19 years Sub-sample General public School - based I am worried about catching AIDS. Education Form 5 or lower Form 6 or higher Location Urban Rural As long as a woman is faithful to her husband, she should not worry about getting AIDS. Sex Male Female Yes/(%) 38.80 34.69 46.11 44.36 32.92 41.72 40.09 2.50 43.85 28.57 22.75 27.56 17.89 No/(%) 61.20 65.31 53.89 55.64 67.08 58.28 59.91 37.50 56.15 71.43 77.25 72.44 82.11 N 500 320 180 257 243 501 444 48 431 70 501 184 202 p-value

0.012 0.009

0.003 0.016

0.010

Continued overleaf

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I would like to know more about AIDS. Sex Male Female Location Urban Rural I worry about catching AIDS at the dentist. Race Malay Chinese Others Age group Education - ( 19 years > 19 years Form 5 or lower Form 6 or higher

65.27 60.63 69.92 67.75 50.00 29.94 23.95 39.57 32.32 26.17 36.67 27.93 52.08 36.25 42.97 29.05 32.94 56.52 15.17 50.51 18.57 23.51 13.39 19.35 23.51 15.00

34.73 39.37 30.08 32.25 50.00 70.06 76.05 60.43 67.68 73.83 63.33 72.07 47.92 63.75 57.03 70.95 67.06 43.48 84.83 49.49 81.43 76.49 86.61 80.65 76.49 85.00

501 254 246 431 70 501 263 139 99 321 180 444 48 491 249 241 422 69 501 491 490 251 239 491 251 240

0.029 0.004

0.004 0.014 <.0001

I worry about getting AIDS at the barber or salon. Sex Male Female Location Urban Rural Most people with AIDS got what they deserved. I would not be afraid of visiting a friend sick with AIDS. I am tired of hearing about AIDS. Sub-sample General public School - based A man cannot get AIDS from having sex with a woman. Sub-sample General public School - based

0.001 <.0001

0.004

0.017

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Significantly more of the older respondents and more of the general public thought so. The general public sub-sample comprises a slightly older group compared to the school-based sub-sample. About 23% felt that a woman should not worry about getting AIDS if she remains faithful to her husband. Significantly more male respondents agreed to this statement. Furthermore, almost one-fifth of the respondents, and more among the general public sub-sample, agreed that a man couldnt get AIDS from having sex with a woman. About 15% held the attitude that most people with AIDS got what they deserved. This probably stems from the publicised fact that HIV/AIDS is a disease afflicted through personal behaviour, namely sexual practices and drug use. In terms of perceptions of personal risk of contracting the disease, quite a substantial proportion worry about catching AIDS, significantly more so among those with higher education attainment compared to lower, and among urban respondents compared to rural. Responding to concerns amongst Malaysians about catching AIDS in specific situations, several statements were posed about risk of transmission at the dentist and barber or hair salon. Again, a rather substantial proportion (36%) feared catching AIDS at the hair salon. Significantly

higher proportions of male respondents worried about the barber and more than half the rural residents. Compared to the barber, slightly less feared catching AIDS at the dentist. Significant differences between groups were found by race, age group and educational attainment. In particular, more than half of those with higher education worry about catching AIDS at the dentist. Despite the majority believing that HIV/AIDS cannot be transmitted via casual contact, as described in the previous section, only half of the respondents would not be afraid to visit a friend sick with AIDS. To gauge the response to the informational and educational efforts at that point in time by the Ministry of Health as well as other sources, such as the media and the non-government organisations, two statements were included on respondents feelings towards more information. Although about 65% overall said that they would like more information, fairly large proportions within sub-groups did not. Specifically, significantly fewer males compared to females and fewer rural than urban residents desired more information. The more negative statement of I am tired of hearing about AIDS generated a yes response from 18% of the respondents, and significantly more among the general public sub-sample.

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SUMMARY SCORE FOR KNOWLEDGE ON HIV/AIDS

A summary score to measure knowledge about HIV/AIDS was generated based on 16 items (close-ended questions) on the questionnaire, as follows: Questions Response (score=1)

5. 6. 7.

through mosquito bites? swimming in a public pool? having a person with AIDS or the AIDS virus kiss you on the cheek? using a needle or syringethat has been used by a person with AIDS or the AIDS virus and has not been cleaned? donating blood where disposable equipment is used?

No No

No

8.

Can you get AIDS by doing any of the following: 1. touching someone who has AIDS or the AIDS virus? having sexual intercourse without a condom with person who has AIDS or the AIDS virus? sharing food, etc., with someone who has AIDS or the AIDS virus? having a cough with AIDS or the AIDS virus cough or sneeze on you? 9.

Yes

No

No

2.

10. Can a person infected with AIDS look healthy? Yes 11. Can a woman with AIDS or the AIDS virus pass it to her baby during pregnancy or at delivery? 12. Is there a vaccine against AIDS? 13. Do you think that a person with AIDS or the AIDS virus can be cured?

Yes

3.

Yes No

No

4.

No

No

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14. Among people who get AIDS, how many do you think will die from this disease? All of them 15. Can someone who looks healthy pass the AIDS virus to others?

Statement (score=1) 1.

R e s p o n s e

Only drug users and homosexuals get AIDS. I would like to know more about AIDS. Most people with AIDS got what they deserved. I would not be afraid of visiting a friend sick with AIDS. I am tired of hearing about AIDS.

No

Yes 2. Yes

A score of one was assigned to each answer deemed correct, and zero for incorrect or dont know/not sure responses. Hence, the maximum score possible was 16. The average score for the respondents was 12.57 (sd 2.20; median 13), ranging from 4 to 16 (Table 4). This average is relatively high and supports the responses to the individual questions or statements described earlier. There were no significant differences in the average knowledge score by sex, race, agegroup, urban/rural location, sub-sample, employment status, or sexual experience.

3.

No

4.

Yes No

5.

SUMMARY SCORE FOR ATTITUDES TOWARDS HIV/AIDS

Five items on the questionnaire on attitudes and beliefs were selected to generate a summary score for Attitudes towards HIV/AIDS. These are as follows:

Responses to these items were designated as positive (score one) or negative (score zero) towards HIV/AIDS. Hence, the summary score ranged from zero to five, whereby the higher the score the more positive the attitudes. Overall, the average score for the respondents was 3.43 (sd 1.16; median 3) ranging from zero to five (Table 4). There was no significant difference by any of the socio-demographic and sexual experience variables as for summary knowledge score above. Moreover, the correlation between knowledge and attitudes scores was low (Spearman Rank Correlation = 0.199).

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Table 4. Summary Scores on Knowledge, and Attitudes Regarding HIV/AIDS

Summary Score Knowledge on HIV/AIDS1 Attitudes Related to HIV/AIDS2
1 2

mean 12.57 3.43

sd. 2.20 1.16

median 13 3

N 482 483

Knowledge score derived from 16 items on questiounaire, as described in text

. Atittudes score derived from 5 items on questiounaire, as described in text.

PERCEPTION OF SELF-RISK
A question was also included to assess respondents perception of risk of contracting HIV/ AIDS, specifically, If you were to continue living the way you do now, doing the things you do, what would be the chances of you eventually getting AIDS? Do you think it is very likely, somewhat likely, or not at all likely? Out of 491 respondents who answered this question, the majority (80%) felt that they were not at all likely to get the disease. Less than four percent perceived their risk to be very likely, and 16% somewhat likely. Due to the small numbers, the latter

two likely categories were combined (very/somewhat likely) for further analyses. A significantly higher proportion of younger (24%) compared to older (14%) respondents felt they had some risk of AIDS (Table 5).

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Table 5. Perceived Risk to HIV/AIDS: Percent distribution of respondents by selfassessment of risk to getting HIV/AIDS1, and by selected background variables
Response very/somewhat likely (%)
All respondents Age-group Sub-sample 20.372 -( 19yrs >19yrs General public School-based 79.63 23.89 14.12 15.56 25.64

not at all likely (%)

4.91 76.11 85.88 84.44 74.36

Total N

p-value

314 177 257 234

0.010

0.006

Sexual experience

Yes No

38.33 17.96

61.67 82.04

60 401

<.0001

Reponse to question If you were to continue living the way you do now, doing the things you do, what

would be the chances of your eventually getting AIDS? Would it be very likely, somewhat likely or not at all likely?
2

Disaggregated responses : very likely (38%); somewhat likely (16.50%).

By sub-sample, far more school-based (26%) than general public recruited respondents (15%) felt this way. As described previously, respondents recruited through schools are younger, less sexually experienced and not employed, compared to the general public group. Finally, about twice as many among the sexually experienced group (38%), i.e., those who have had sexual intercourse,

perceived themselves somewhat or very likely at risk of AIDS compared to those not experienced (18%). This difference was highly significant. In regard to the association between AIDS knowledge and perception of self-risk, there was a marginally significant difference (p=0.045) in the average summary scores between respondents in the very / somewhat likely (mean 12.20; sd 2.23,

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median 13) and not at all likely (12.72, sd 2.15, median 13) risk categories. That is, those who considered themselves not at risk of contracting HIV/ AIDS scored slightly higher in knowledge about HIV/AIDS, as measured in this study. Based on the above results, multivariate logistic regressions were modelled to assess determinants of perceived risk. The independent

variables examined are sexual experience, agegroup, sub-sample, and summary knowledge score. Summary knowledge score was included as low score versus higher scores based on the 25th percentile. The results of the regression analyses are shown in Table 6.

Independent

Odds Ratio

Table 6. Multivariate Logistic Regressions on Adolescents Perceived Risk to HIV/ AIDS

Std. Error Variables1 Sexual experience Sexual experience Age group Independent Variables1 Sexual experience Age group Sub-sample Sexual experience Age group Sub-sample Low knowledge score P < z95% Confidence Interval

2.84 3.51 0.39 Odds Ratio

0.84 1.09 0.11 Std. Error

0.000 0.000 0.000 P < /z/

1.59 1.91 0.23

5.07 6.45 0.67

95% Confidence Interval

4.48 0.48 0.50 4.42 0.49 0.50 1.90

1.49 0.14 0.14 1.47 0.14 0.14 0.56

0.000 0.010 0.011 0.000 0.014 0.011 0.029

2.33 0.27 0.30 2.30 0.28 0.29 1.07

8.60 0.84 0.85 8.50 0.86 0.85 3.37

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Variables: Perceived Risk (0 not at all, 1 somewhat/very likely); Sexual experience (0 no, 1 yes); Age group (0 - 19 yrs, 1 > 19 yrs); Sub-sample (0 school-based, 1 general public); Low knowledge score (0 11, 1 > 11). Note: Final model: R2 = 0.076;p < 0.00011; N = 461

As shown in Table 6, sexual experience is a highly significant predictor of perceived risk to HIV/ AIDS. In fact, it is expected that those who are sexually active perceive themselves at risk of sexually transmitted diseases compared to those who are not. Interestingly, older respondents as well as the general public sub-sample consider themselves at lower risk compared to younger and school-based respondents, respectively. Yet, there are more sexually experienced respondents

among the older group, and among the general public group, who also tend to be older. When age group and sub-sample are controlled for, sexually experienced adolescents are four times more likely to consider themselves at risk of HIV/ AIDS compared to those who are not. Finally, a lower knowledge on AIDS is associated with a higher chance of perceiving oneself at risk of contracting HIV/AIDS, independent of sexual experience, age and sample of respondents.

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DISCUSSION AND CONCLUDING REMARKS

Adolescents constitute a very important segment of a population, more so in developing countries where the majority of the 519 million people aged 15-19 years in the world live (PRB 1996). Despite declining birth rates, the proportion of the population between 15 to 19 years will remain substantial for some time. Southeast Asian countries, in particular, will have increases of between 30 to 50 percent from 1980 to 2010 (Xenos 1993). They, thus, form a substantial human capital resource, the quality of which must be nurtured to ensure productivity and the nations social as well as economic development. An important aspect relates to health - physical, social and mental - which has an impact that extends into adulthood. In the present study, it is noteworthy that the majority of the adolescent respondents in the survey possessed relatively accurate knowledge on modes of transmission (particularly via sex and drug needle sharing, two of the three main routes of HIV transmission), cure and prevention of HIV/AIDS. This is evidenced by the high average knowledge summary score of 13 (maximum-16). This notwithstanding, there remain gaps and misconceptions which need to be ad-

dressed. Of considerable concern was the finding that high knowledge score is independent of sexual behavior and practices, that is, knowing all about HIV/AIDS may not necessarily be protective against infection. Gender differences in perceptions, beliefs and attitudes, particularly with regards to sexual behaviour, are also important findings. The paper calls for a critical review of HIV/AIDS prevention programs so that innovative and more behaviour-change strategies would be developed specifically to reach all adolescents, ranging from those attending school and living with their families and those who are working and staying away from home. In addition to accurate information on transmission of HIV/ AIDS, prevention strategies and programs must also address risk-taking behaviors among adolescents openly and without moral judgement. In discussions on sexual behaviour, for instance, the meaning of sexuality, the process and skills in male-female negotiations all need to be emphasised. Appropriate considerations based on gender, socio-economic status or class, culture, rural or urban settings in such HIV/AIDS prevention programmes must also be made.

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REFERENCES
International Conference Population Development. (1994). Report of the International Conference on Population and Development, (Cairo, 5-13 September 1994) United Nations (A/CONF.171/13) New York. Government of Malaysia. (1996). Seventh Malaysia Plan 1996-2000. National Printing Department, Kuala Lumpur. Ministry of Health Malaysia. (2002). Ringkasan Kes Jangkitan HIV dan AIDS. New Straits Times, 12 July 1998. Sex-related HIV Cases Up. New Straits Times, 2 April 1997. Shifting the social burden of AIDS. Ong YW, Lee HP, Kok LP, Heng BH, Ho ML. (1989). A Report on the Joint WHO/Ministry of Health Singapore/National University of Singapore; Survey on Partner Relations and Knowledge, Attitudes, Behaviour and Practices on AIDS, Singapore; Ministry of Health Singapore. Population Reference Bureau. (1996). The Worlds Youth 1996. Washington DC USA. Shane, B. (1997). Family Planning Saves Lives (3rd edition). Population Reference Bureau, Washington DC; USA. WHO. (1990). Global Programme on AIDS. Social and Behavioural Research Unit. Research Package: Knowledge, Attitudes, Beliefs and Practices on AIDS (KABP, Phase 1 released 26.01.90 Geneva World Health Organization).

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WHO. (1993). Counselling Skills Training. In Adolescent Sexuality And Reproductive Health - A Facilitators Guide. Division of Family Health, Geneva: Switzerland. Xenos, P. (1993). Extended Adolescence and the Sexuality of Asian Youth: Observations on Research and Policy. East-West Center Reprints, Population Series No.292. Zulkifli, S.N., & Wong, Y.L. (2002). Knowledge, Attitudes and Beliefs Related to HIV/AIDS Among Adolescents in Malaysia. Med. J Malaysia, Vol 57 No 1 March 2002: 3-32.

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IF ONLY WE KNEW: JUVENILES WITH HIV

Haliza Mohd. Riji

6
ample the link between drug taking, sexual activity and HIV/AIDS. While substantial data had been gathered concerning behavior in relation to drug addiction in Malaysia (Navaratnam & Spencer 1978) and sexual activities among adolescents (Zulkifli et al. 1995), less information was known about the backgrounds and behavior of HIV-positive juveniles, i.e. those under 20. Hence, in an attempt to understand if there were determinants predisposing juvenile individuals to HIV exposure, a study was undertaken to examine the behavioral, psychological and social aspects of 12 HIV-infected juveniles undergoing rehabilitation and treatment at a correctional center in Malacca. This research collected data on their past activities, their perceptions of HIV/AIDS and their hopes and aspirations after release from the institution. All respondents were interviewed face-to-face using

INTRODUCTION
Male teenagers and youth constitute a proportion with particular significance for HIV infections in Malaysia. Out of 27,792 cumulative HIV cases by October 1998, 115 persons (or 0.41%) were below the age of 13, 76.54% were drug users, and half were below 29 years of age (Min. of Health 1999). The fact that the infection largely affects this younger sector of Malaysias population gives rise to special concern for both Islamic and Western institutions to assess this problem and offer ways of prevention. The annual and cumulative categories of persons with HIV point to basic associations between infection and characteristics such as age cohorts, ethnicity, occupation and mode of transmission. Closer examination of these categories provides insights into behavioral factors, for ex-

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structured interview schedules with allowance for open responses.

LITERATURE REVIEW
Although HIV/AIDS was first associated with gay (homosexual) behavior, in Malaysia the infection rapidly progressed into a phenomenon associated with intravenous drug use (IVDU). The misuse of drugs is not a recent phenomenon and has been an ancient problem affecting most societies in the world. In Malaysia, the smoking of opium had its beginning among Chinese immigrants working in the tin mines in the 19th century (Poh et al. 1981). Societys reaction to drug users including injection has usually been rejection, disapproval and legal proscription... (Carballo & Rezza 1992). As the public reacts to the increase in HIV infection through drug injection and needle sharing, this also brings public awareness that this is related to a global health crisis (ibid). The early teen and adolescence years of individuals are filled with crucial life events. These are associated with personality development, physiological maturation and changing psychological needs. Ones particular socialization processes, cultural framework,

family characteristics and environmental factors influence personality and social activity. Children learn to face lifes challenges through their parents guidance and training. They can easily succumb to social temptations when they take matters into their own hands without advice and support from their parents, elders and peers. They can turn to the streets when they face what seem to them insurmountable problems in school or at home. They may quit their education or their jobs. They often blame their parents for not giving them the care and love they need. Driven by the need to break away from what is to them an unaccepting and non-understanding environment, they leave home unprepared without knowledge about the reality of the world beyond their homes, and may fall prey to drugs and immorality. What they subsequently may indulge in can be said to be the results of an early exposure for which they are inadequately prepared socially, psychologically and emotionally. These actions can lead to irreversible situations such as HIV-infection, about which the response of prison juveniles were, if only we knew.

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RESEARCH ON HIV-POSITIVE JUVENILES

In April 1999, a sociobehavioral study of adolescents with HIV infections was conducted with twelve (12) males under the age of 20 years, using face-to-face interviews with trained investigators. These juveniles were undergoing rehabilitation at Telok Mas, Malacca, a center set up especially for juveniles who had committed criminal offenses. Unlike other HIVpositive respondents in a separate study at seven correctional centers in Peninsular Malaysia (Institute of Health Promotion, 1999), the respondents at Telok Mas received special institutional attention since they were juveniles who had been remanded for their misdeeds but would be released when they reach the age of 21. All 12 were ethnic Malays: four were 18 years of age, four were 19 and four were 20 years old. Their educational levels ranged from Grade Three (primary level) to Upper Sixth Form (13th year, a pre-tertiary level). Their origins were Kedah, Kelantan, Pahang and Johor states. Four were unemployed, six worked in private agencies and two were self-employed at the time of their apprehensions. During the interviews, particular attention was given to their childhood,

family relationships, and earlier adolescent experiences and to their present hopes and aspirations. The following summarizes the backgrounds and risk behaviors related to their HIV positivity for five of these respondents selected as representative of the twelve.

Respondent One
He is 19 and comes from Kuantan, Pahang where he lived with his mother, two elder sisters and two younger brothers. His family lives on the earnings from a food stall run by his mother. In school he had been an average student but reached Form 6, and wanted to pursue his education further. His mother did not put any pressure on him for school activities or constructive use of his spare time. He soon found that he was mixing with and following peers who were already engaged in drug use, selling and distribution activities. His first experience with drugs was at 16, following cigarette smoking. He could not think of any need for stopping, and started smoking ganja (marijuana, cannabis) and proceeded to the use of other drugs - Ecstasy, Herami, morphine and finally heroin. There was no problem getting any of these since his best friend in school was a drug dealer. As he became more

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addicted, he began using needles (intravenous injections) for a faster response to the drugs. He did not think or know where it would lead when he first tried cannabis. Though deeply involved with drugs, he never thought of having sexual relations with anyone. He had a girl friend to whom he was attracted and whom he respected , but he found her attentions persistent. They met one day and the girl tempted him and so they had sexual intercourse. As this was an unanticipated incident, they used no protection. They did not think of unwanted pregnancy or other possible consequences of their action. This was his first and last sexual relationship with her or anyone else. His little knowledge of HIV did not save him from the infection. When he was informed of his blood examination results he was very frustrated, but could not do anything except to feel sorry for himself. This is his first time in a correctional institution and despite his HIV status, he is determined to change his life. He mixes well with the other inmates and finds the staff pleasant and unprejudiced. The counseling sessions have given him some inner strength to deal with the disease. He is beginning to learn about the negative and positive aspects of life. He longs for home and

his family, but he will not reveal his condition to his parents or his siblings. He would probably tell his friends, as he wants to protect them from the same fate.

Respondent Two
He comes from Sungai Petani, Kedah and is 19 years old. He finished six years of primary education and worked as a laborer at a tiles factory. He was paid RM45 (USD12) for a single days work. With the money he helped his family of eleven - two parents and nine siblings, of which he is the fourth. Family relations were good, but they were deep in poverty. His father worked as a laborer too, while other members were unemployed. He wanted to serve in the army but had to give up this ambition when he found difficulty with his school lessons. He was often hit and ridiculed by other students for being slow in class. Though his parents were informed of his problem, they never investigated or lodged a complaint. He realized he had to deal with the problem himself, and with no way in sight for solutions, he found himself attracted to alcohol and then cannabis. To get money for his drugs he became a pusher (drug seller on the street). He earned

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RM800 a month. This was considered good money and with it, he could get what he wanted. He had a girlfriend whom he wanted to marry someday. He learnt that she had married, which he said made him crazy and turned him to heroin. He took heroin intravenously, sharing needles with other drug users. During this time he thought about the possible results of his actions, but he ignored them as this pleasure could make him forget his frustrations. By then he found himself a bohsia (a teenage girl who give sex for free) with whom he had frequent sexual relations. When the relationship ended, he looked for other partners. No protection was used in any of these activities. He was finally caught possessing drugs. He has been in good health since then and spends hours doing physical exercises. He was shocked when informed of the results on his blood test and did not believe it at first. Now he has begun to accept the consequence of his behavior. What troubles him is the segregation of HIV-positives from the rest of the inmates. He prefers to be given a job as that would make him feel useful. He misses his family, especially his parents. He plans to return to his hometown upon release and turn a new leaf, i.e. start over again positively.

Respondent Three
This is an 18-year-old from Kota Bharu, Kelantan. He stopped school after Form 2 (8 years of schooling) and began helping his father in the furniture business. He was paid RM30 per day. He was happy to receive such amount considering that his eight brothers and sisters were entirely dependent on his father and mother. His mother operated a food stall. They were both busy and apparently did not spend much time with their children. In any case, this did not matter much to him. He thought he could join the army so as to be fully independent. He used to tell his friends that he lacked parental love and guidance. It was not long before he was pulled into the drug world. His initial feeling was that he wanted to feel high. Through drug use associations he began sexual activities with prostitutes. He never used condoms or practiced any other protective measures against sexually transmitted diseases. Though shocked to learn that he was infected with HIV, he realized that it was his misbehavior that led to the infection. Earlier he had been sent to a drug-rehabilitation center. He was sent to Telok Mas for drug trafficking. No family members have ever visited him, but he did once receive a letter from his sister. He did

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not think much about his parents. He believes that it is best not to reveal his situation to them or to his siblings because it would trouble them. His only consolation is to be careful with what he does in the center. That way he would keep himself well.

Respondent Four
This is a 19-year-old from Machang, Kelantan who received six years of education in Arabic at a religious school. With family support he managed to start a small business in which he earned about RM1000 a month. He is the fourth in a family of seven children. His parents were farmers. His relationships with his parents and siblings were close. His parents were strict about his social activities and the groups he mixed with. Yet he felt there were no clear directions from them. He used some of the money from the business to buy drugs for himself, and eventually found himself with an acute cash shortage and was forced to close the business down. Drugs were all around him and easily available. He first tried marijuana when he was 15 years old. From sniffing drugs, he and friends turned to injecting them with needles. As with the drugs, his involvement with sexual activities

also reflected his close proximity to prostitutes across the border in Thailand. He did not really know why he was caught but was informed that it had to do with molestation. He also never really understood what HIV/AIDS mean. But over the course of counseling he gained some knowledge about it. Once his family visited him. Occasionally he writes to them. He realizes that his family still cares for him, and this makes it difficult for him to tell his parents and siblings the truth.

Respondent Five
This is a 20-year-old male from Kuala Lipis in Pahang. He passed Form Five (11 years of school) and succeeded in getting a job as an assistant administrator. He lived with friends at a hostel. Both his parents worked in a government hospital - his father was a supervisor and his mother a nurse. He is the third of eleven children. He felt he lacked parental guidance. He later enrolled as a student at a technology college in the hope of improving his qualifications and job. The college administrator expelled him when he was charged with drug possession. He blamed peer pressure for his experience with drugs. Many of his schoolmates were using drugs by the age of 13. He did not begin

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with other safer drugs but plunged into heroin from the beginning. To him, how else could anyone feel the effect of heroin but intravenously through injecting? After two years on heroin, he started to have sex with bohsia and other girls and women. He never thought seriously about the consequences. He now knows about HIV/AIDS, and understands that there is nothing he can do to change his status. He sees himself as the source of blame and is not agitated at societys reaction toward those with HIV. However, he believes that a program to educate the public of the impact of HIV infections is important.

THEMES EMERGING FROM THE NARRATIVES

Being part of a large family has its advantages and disadvantages. While relations can be harmonious and stable, crises like death and divorce can impact upon the individuals psychological development. Family traditions, norms and values can help to transcend the familys ups and downs. Families with a large number of children are challenged with the major task of providing care and love to every one of their children. Working parents face the

responsibility of both getting the means to provide the basic needs of their children as well as nurturing them with guidance and protection. Working for both these ends is not an easy thing to do, particularly in relation to male children who already have a certain status and distinction in Malay culture. Thus the home environment may or may not be conducive for the positive development of a child, and the school environment may add to what is already a negative factor for him/her. Lack of family and personal control over the forces at play outside of the family setting are clear predisposing factors in a childs initial experiences with drugs and sexual activity. Failing to get the attention and care they feel they deserve, such children usually find comfort and support from their peers. Strangers do not lead to a childs first connection with the drug world; rather, it is someone he is close to, for example his best friend, who brings him to it. In the name of friendship, a child easily believes that what he has been given to try is right. Adolescents also have the desire to try things and activities that are new if not risky. Cigarette smoking is common, but a drug is more appealing since the law forbids it. This is the pull factor that makes it easier for the drug

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pushers to convince the juveniles. A 13-yearold boy may think that he is not too young to do something he has not done before, and what may also stimulate him is that some of his schoolmates are already ahead of him in their experience of marijuana. Drugs are not the only hazard confronting the adolescent. There is also sex and the easy availability of bohsia and prostitutes. Juveniles who work in their earlier teens have difficulty managing what they earn. With persuasion, they can easily end up using their money to have sex with prostitutes. What makes it easy for them to indulge in this risk behavior is their close proximity to the sex industry through their drug use. The presence of bohsia, a social phenomenon of the 1990s, also offers juveniles the opportunities to have sex for free. The risks in both situations are definitely high since different sexual partners are involved and the use of protective measures is uncertain. Adolescents who turn their friendships with girls into sexual relationships are in fact opening the door to more premarital sexual activity as they grow up. Knowledge about the consequence of such behaviors, if there is any, is forgone in lieu of the pleasure principle. Lack of condom accessibility may be a further factor in not using them.

Thus a combination of factors are at play that lead to adolescent risk behavior - breakdown in family relations, problems at school, peer groups and peer pressure, the availability of drugs, evident and rampant drug use, drug addicts, flourishing prostitution, economic conditions, psychological needs and personality development processes. In view of these and their presence and effects in adolescent cohorts, a number of elements are needed to help the person with HIV/AIDS change their behavior involving risks. A stay at a correctional institution can prove helpful to some extent, since routines are set with an emphasis on discipline, which can bring about awareness and realization that life involves more than drugs and sex. Religious lessons promote appreciation of the role of spiritual values in individual and family life, and counseling sessions help with increased knowledge about HIV/AIDS to prepare them for their futures. Being youthful is being hopeful. Since they are not detained forever, they are looking for a different future. They miss home and their family. When they return home they want to be near their families and avoid what they did in the past.

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CONCLUSIONS
This study reveals a part of the picture surrounding HIV among juveniles in Malaysia. The 5 respondents (and the 12 from which they were taken) are representative of a young population that lives in specific environments that are not free from drugs, and they succumbed to drug use and addiction. They were mostly ignorant of HIV/AIDS although they lived in an HIV/ AIDS era where information sources about the disease are all around them. Yet they seem oblivious to the phenomena. Are they to be totally blamed for this? Their narratives tell us that there is more to this disturbing problem than drugs and sexual contact. Those concerned with the problem, especially as it affects adolescents must analyze the specifics, their contingencies the more directly related behavioral factors and the larger settings and scenarios. Each has its individual, idiosyncratic, social, cultural, economic, environment and idiosyncratic aspects, and together appear in a sort of symbiosis of appeal and danger for these young people. Moreover, the responses of these adolescents to the attitudes of staff and to the centers policy relating to physical conditions, counseling, recreation and treatment activities must not

be ignored. Rather, these should be particularly utilized for the purpose of improving their efficiency and their understanding of adolescent perceptions. This promotes better linkage between the juvenile and the formal institutions involved with them, and more effective correctional strategies and policies. In other words, juveniles are very appropriate targets for more intensive health education and skillsdevelopment programs. If adequate knowledge about HIV/AIDS is gained and positive attitudes towards life are developed before they return to society, adolescents stand a better chance of avoiding the pitfalls of a society if not a world rampant with drug addiction and casual sexual relations. They may choose not to let anyone know their status till the time clinical symptoms appear, and they must realize the social implications of this position. Indeed, they may not develop AIDS as better medications may become available and if this is the case, they can continue life even more meaningfully. In any case, they must be given the chances and the information that as youth, they deserve.

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REFERENCES
Carballo, M and Rezza Giovanni. (1992) AIDS, drug misuse and the global crisis In Strang, J. and Stimson, G. (eds). AIDS and Drug Misuse. London Routledge pp 16-26. Institute of Health Promotion. (1999). Sociobehavioural Determinants and Psychological Aspects of HIV-Infected Prison Inmates in Malaysia IRPA. (Intensification of Research in Priority Areas) Project #0129, 1998-1999, Kuala Lumpur. Ministry of Health Malaysia. (1999). Current Report of HIV/AIDS Infection Till 31st October 1998. AIDS Unit, Kuala Lumpur. Navaratnam, V. and Spencer CP. (1981). Drug Abuse in East Asia. Kuala Lumpur Oxford University Press. Poh, S.C. et al. (1983). Consumption of opiate drugs in Asia. In Opiate Drug Consumption in Asia. Navaratnam, V. et al. (Eds). Center for Drugs and Medicines Research. University Sains Malaya, Pulau Pinang pp 25-42. Zulkifli, S.N., Low, Y.L. and Yusof, K. (1995). Sexual Activities of Malaysian Adolescents. Med J Malaysia, 50.1:4-10.

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A WOMANS REALITIES: CONFRONTING AN HIV/AIDS PROGRAM

Zaiton Zainal Abidin 8

INTRODUCTION
I was a housewife with two children and was working as a sales representative in 1988, when I began to notice that there were many cases of drug addiction in Kuala Lumpur. Drug addiction, particularly amongst youths, was a major social problem that appeared to be on the increase. Not only were there new cases day after day, but also those who suffered and wanted to change for the better could not succeed for lack of proper after-care extension programs including family and communal support. After gathering

Taman Sri Rampai, Setapak, Kuala Lumpur, Malaysia. The author initiated and directed K101 until early 1999. The K stands for keluarga (family in Malay) and 101, her house address.

information and thinking that I wanted a change in my career, I decided to leave my job and learnt something about counseling. K101 was initially set up as a halfway house for male drug addicts. I did not have any professional training in rehabilitation programs but I was determined to do something for these needy people with problems. And in front of me were youths who were delinquents and suffering from drug addition, but who wanted help from someone to lead them to normal life again. I used my house as a shelter for those who were released from government drug treatment and rehabilitation centers. I learnt from basics, using principles of understanding and attempting to stimulate behavior change. I first started taking a few exaddicts to live with my family at my house at Taman Sri Rampai. 1989 was the year it all started. It was a voluntary approach to help males

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who were former drug users. As time went by I gained confidence in the work I did, and with the technical and financial support from NGOs, embassies and the Anti-Narcotic Task Force, I was able to go for training on handling drugaddicts and their rehabilitation. I had the opportunity to attend numerous conferences and seminars, in Malaysia and abroad. With this background I continued my work in counseling and running a halfway house. I became more concerned as I witnessed a growing number of female drug users over the years. Added to their problems was the fact they were HIV-positive. I wanted to offer my services but knowing the constraints, I could only observe. It all changed when one day, officers of the Ministry of Health made a request for me to focus on the women addicts as a trial project for three years. With financial support from the Ministry it was then possible to rent a house and manage it more formally as a non-governmental organization. We called it K101.

THE WOMENS MOTIVATIONAL CENTRE

K101 was from my house address, but operationally it was a center for women with

HIV. Established in 1996, it was set up as a center especially for women with HIV. I agreed to this idea as I thought it was better for me to concentrate on women rather than male addicts. We named the center the Womens Motivational Center. The main idea behind this formation was to motivate each female HIV case to change her behavior through relearning her role as a woman. By this time I had moved into another house because the first one, which I converted to house male drug addicts, was full and was not suitable as a residence for my family. Based on the understanding that the Ministry of Health would finance all costs of managing the activities, the Center was then formally set up. Hence begun my career as director of a halfway house for confirmed HIV/AIDS persons in Malaysia. Up to mid-1998, 35 female HIVpositives sought refuge at the Center. They were from various ethnic and age groups, levels of education, and social and economic backgrounds. Some were housewives; others were exprisoners, sex workers, or drug addicts. Some were also transvestites.

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THE RESIDENTS
The Center provided shelter, meals and education. Residents entered WMC with few or no official or personal documents at all. This made it difficult for the administrator to conduct any official matters with relevant agencies on their behalf. Despite efforts to help them in every possible way, residents initially showed little in terms of appreciation. They come to the Center without much money, clothing and with attitudinal problems. At the Center, they are given food and services, besides free shelter. In return they are expected to adhere to certain rules, for example to do their beds every morning and to clean up the house. This is supposed to be on a voluntary basis, since imposing on anyones will in their eyes amounts to punishment for the wrongdoing they did in the past. Whenever they feel that the rules are constraining them, they leave. Their lack of ability to understand what the Center is trying to do for them can also be explained partly by the little formal education they had. The residents do realize that they get free shelter, food and other services. Yet they seldom can complete the rehabilitation program designed for them. I present here some cases to enable readers

to appreciate the realities of women with HIV.

THE SUPPORTING STAFF

Getting people to work as support staff for the Center has always been difficult. This is because the work deals with HIV/AIDS. Experienced staff may at times be engaged, but they require special incentives to keep them on their job. Inexperienced staff requires a lot of coaching before they can adapt themselves with the reality of working with HIV/AIDS individuals. Staff must have commitment to their job as they deal with the many medical problems related to HIV. The Center has to support their medical fees and related costs such as transportation for them and for accompanying staff, relapses and the problems caused by interrupted stays.

FINANCIAL CONSTRAINTS
As more HIV-positives sought refuge at the center, costs for maintaining their welfare gradually increased. As inmates were prone to infections, a substantial portion of the budget was spent on their medical fees. Of course there were those incurred for transportation and

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allowances for accompanying staff. More expenses were also expected if there was non-compliance and for rehabilitative programs attached to the patients. In the meantime, financial support from the government was restricted. Funds from other sources were limited. While some efforts were made by the center to generate income, these could not be sustained mainly because inmates had little commitment. Furthermore, their own health conditions prevented them from getting fully involved in activities, which required much energy.

OTHER CONSTRAINTS
Running a center such as the WMC singlehandedly is wonderful if it can be proven a success. However, knowing the complexity of the matter of HIV/AIDS transmission and prevention, strong government and nongovernment support in terms of finance, staff and logistics is vital. Equally important is the networking between such a center with other halfway institutions and funding agencies.

to normal life is very rewarding for me. I forget all the constraints and obstacles I had to go through when someone could tell me that she found a new meaning to her life and that she had gathered enough strength to face the world. I know I should not give up the shelter. Some who had left earlier had visited me again for advice. I know they need all the help from anyone who really understands their situation. A counselor like me is more like a friend to them, someone they deeply trust. I do what I can to relieve them of their worries and problems, but I could offer little in terms of financial support. My strong belief is that it takes every one of us to lessen HIV transmission in the country. Medical and behavioral approaches are good, but without human understanding and care, especially for those infected and at risk, the problem will persist. It is with this in mind that I would be encouraged to offer my services again if there are sufficient funds and administrative support in the future.

CONCLUSION
K101 was a humble program, one which tried to understand what dignity is about. Although these women faced life-threatening problems,

EXPERIENCE GAINED
To know that those that I have helped returned

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they somehow had not given up. To survive all barriers to normal life would be their triumph. But in reality it takes more than just willpower. Working with the residents has taught me to adopt and adapt along the way. They have learnt to trust others while I have come to realize the social and cultural meaning of drug addiction

and HIV. More and more I feel that we need to understand the interrelated factors that contribute to the phenomenon. Providing counseling is just one path towards freeing society of the problem. If only all parties would be more concerned and share in the responsibility.

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A PERSONAL PERSPECTIVE
Sam 10

I spent 22 years on drugs and I have been HIVpositive for 11 years, but today Im different. Different, because I made it so. Im a very effective peer educator for 120 people who have very complicated substanceabuse problems. We have two full-blown AIDS cases in our community and one of the close colleagues, who worked with me on outreach programs, died recently. I started abusing drugs when I was just a teenager. I lost my father at the age of 14 and I feel that I lost a very important role model, because he was an honorable and respected man. He lived during the Japanese Occupation and did a lot for our country. He was a very talented musician, a conductor. I had looked forward to learning music from him, but - before I could he passed away.

10

Sam is a pseudonym

I am the youngest in my family; I have three sisters and five brothers. My mother, maybe frustrated at having to cope with some many children, let me go a bit wild. I was an above-average student, but I started deviating. It was during the late 60s and early 70s the time of The Beatles and The Rolling Stones, high boots, long hair and flower power,that I started smoking marijuana and soon popping pills. I drank like nobodys business. I started smoking opium. There were opium dens all over the streets of Kuala Lumpur then, especially in the city centre. I started using a needle. Before heroin existed on the streets, I was shooting morphine-pure morphine, mind you! Then, in the 70s, heroin became available. I began to feel that I couldnt cope with my addiction and my family came to know about it. My brothers and sisters started to nag me everyday and that drove me further and further

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into my addiction. I left home and went to live on my own. In 1977, I was caught for possession of drugs - opium - and I was sentenced to three months in prison. And so it went from there. The first day I stepped into prison, I began to pick up negative habits. They called the skills. After completing my prison sentence, I used the experience for added status. I told friends, Hey, dont talk like that to me! I just got out from prison! - trying to play the tough man. And that drove me deeper - street fights and all that. I look back now and realize that I had imprisoned myself and that I tried to struggle to set myself free. I had been to so many centres, a couple of them Christian. I tried this way, I tried that way, I tried every way - but I could not set myself free. The knot inside of me got tighter and tighter. And I lived, self-imprisoned. For a long time...until 1990...I was still trying to set myself free. I was in a Christian center when we were all asked to go for a blood test for HIV. I went for the test along with five other residents. It was on a Saturday at the University Hospital. We would only get our results the following Saturday. So, I waited anxiously. Come Saturday, all my friends got back the results Non-reac-

tive. But I didnt get mine. So I impatiently asked the doctor, What about me? What about me? He replied, You wait. Wait for everybody to finish, then Ill talk to you. That really made my heart beat hard. I waited, sweating, my palms all wet. When everyone was gone, the doctor pulled me aside and said, We have to take another sample of your blood. I said, Why? Why? My friends are all OK already. Am I positive or not? He said, No, no, no, no, dont jump to conclusions. I just want to re-test a sample. I had to go back the next Saturday again to see the second result. This time it was worse. I couldnt eat, I couldnt sleep, everything was going upside down for me. We went back for my test results and it was the same thing again. The doctor said, Wait for everybody to finish, then Ill see you. I just dont know how to express how I felt then. The doctor took me to a clinic and introduced me to Professor X. She looked at me. I was sweating. Then she just gave it to me straight. She told me, Im very sorry to tell you that youve been confirmed HIV-positive. I didnt say anything. Then she started taking out magazines and articles, telling me Dont worry, people have been living with this for eight, nine years in

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America. You are not going to die immediately! She meant to comfort me, but deep inside, there was turmoil. I didnt know when it was going to explode. I went back with the rest of my friends who had tested negative. I said to the driver - all of my friends were tensed, they knew I was positive - Can you stop half-way? I want to go see my sister. I think you can guess where I went. I had been nine months in the Center. I was very fit. I was working out in the evenings. I had stopped smoking. I went to the nearest bus stop and took a bus straight down to the drug area. You all know that part of town. It was really drug-infested. I saw some of my old buddies, hanging out. I just walked in. It was so easy. I got a needle and fixed myself up to the maximum - to the maximum - after being nine months drug-free! I went back to the center and I could feel that I had been isolated. I retaliated. When people threw out little remarks, I could not take it. I started fights. The Reverent told me, We love you very much, but we have to rent a place for you to live outside the Center. That really hit me hard. They rented a room in a flat - a flat occupied by drug users, bouncers, prostitutes. Just

the place to send me on a suicidal trip. I went straight down, I still remember, I had all sorts of tranquilizers, all sorts of uppers and speed. My daily usage of heroin was only limited by the money I had. I felt that I had nothing to live for. I went down and down - and thats when I hit the street - rock bottom. The only bed I had was made of cement, my mattress a piece of cardboard. I dont know how to tell you how I lived - I let go of the responsibility of being a human being. I didnt bathe, I didnt brush my teeth, I didnt care. I had a little corner, just beside a staircase and there was a garbage chute where all the people in the flats threw down their rubbish. I slept just beside that dump. Sometimes I even ate from it. I was so very lonely and helpless then, and every nightfall was a real scary nightmare for me. In time I had no more veins to shoot. I had to hit my arteries. They became very inflamed, especially my left thigh. They bulged out like goldfish eyes - both arteries - and I knew they were going to burst anytime. I did try to seek help because - although I had given up the whole responsibility of living - I was still afraid to die. Thats the wonderful thing: I was afraid to die! I went to a hospital Casualty Department a couple of times, but with my appearance, my

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filthy appearance, I dared not go inside. Each time I went, hospital assistants and attendants would humiliate me. Before I could say anything, they would chase me away like a dog. So, how could I get treatment? I had to stumble back down the street and go back to my little corner. One day my artery gave way...it exploded...and blood shot out like a fountain really shot out like a fountain, and I couldnt do anything. I didnt know what to do. I took off my dirty T-shirt, I squatted own and I pressed it on my thigh and the whole T-shirt became soaked with blood. I started shouting. I didnt know what to do. There were a few city council workers nearby but they could not touch me, they dared not come near me. They ran to a coffee-shop and some people - and I really thank them - came and grabbed me under my arms and pulled me to the main street and called an ambulance. When I got to the surgical ward, I was put in the back still bleeding. The medical office made me squat down and a nurse put a metal basin under me. Three-quarters of the basin filled with blood. They paged the consultant of the surgical unit. When he saw me, he really gave it to me. He gave me a good blasting, because I

had been there before and he had warned me this would happen. But hes one of the doctors dearest to my heart...he saved my life. There were two patients ready for the operating theatre, but Dr. Y cancelled them. He said to put me first. Then my old records came up. The MO reported, This guy is HIV-positive! His blood is highly reactive! Are you sure you want to do this? Dr. Y repeated, Put him first! I recovered. After the operation, I went back on drugs. I still hadnt learned. I was shooting up the right artery just after my left had burst. Can you imagine? I feel strongly that I have escaped death more than once and I dont think its just a coincidence. Its not easy for me to talk about all this - but there was a spiritual awakening. One day, I really felt I had lost everything. I was crouching in that corner when a voice spoke in my heart. A little voice. It said, Sam, turn around! Sam, turn around! If I had not responded to that voice, I would be long dead. I believe it was Gods voice, and it pulled me back. I can tell you now, my life was all my own doing, from the day I went on drugs until today. I realize that Im the one who started it and I think, Im the one who should end it. It is my problem and Ive taken the steps and

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taken the responsibility to get out of it. And PENGASIH 11 has been beside me all this while and I thank God for it.

Its the same with this AIDS epidemic. If we all look at the problem and all do our part and take up our own responsibility, it would be a much easier fight.

11

Pengasih which means compassion, loving compassion, is a therapeutic community (TC). This rehabilitative program for addiction and HIV/AIDS in Malaysia (Pengasih Malaysia) is a member of the WFTC, World Federation of Therapeutic Centers (based in New York, USA).

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HIV/AIDS AND LIFE EDUCATION

Wasana Warapak 12

A POINT OF VIEW
I want to speak about HIV/AIDS, but I do not think that speaking about this directly gets much done. We can learn but we dont do much except talk about numbers. So I will speak about it as I did at the ASEAN meeting on AIDS and ASEAN youth, in October 1998 in Alor Setar, Malaysia. We have a lot of HIV/AIDS in my country, for many reasons. Some of them are economic and some are cultural and behavioral. We know we have this, and I am speaking about solving the problem. I will share my thoughts with you. So I will not speak about HIV and AIDS directly, but as someone who try to solve it. I believe that the causes of most problems are mankinds behavior. If we want to solve
12

or improve the problems we should try to form and correct mankinds behavior. This behavior is formed by many ways and takes a lot of time to do. I think that it begins before one is born. If parents protect and care for one with love, from within the mothers womb, that person will hear will have good mind. After the child is born, he or she is socialized by the family, the school and other social institutions. Therefore every institution should help to generate good personality, teach its members how to think, and how to make decisions in the right way for reason and responsibility.

THE FAMILY INSTITUTION AS A MODEL

I would like to focus on the family institution as the most important institution for fostering cultural values, social values, attitudes and useful skills. This will include de-emphasizing materialistic values and promoting cohesiveness,

Head, Health Science Department, Rajabhut Institute Thepsatri, Lopburi, Thailand.

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affection, and adequate time devoted by parents to their children through: 1. Promoting communal activities which generate close relationships and ties among people, families and communities - for example, family members using their free time together in hobbies and sport. In workplaces, like government agencies, private companies, departmental stores, private businesses and factories - organizing group activities whereby men and women can discuss and exchange life experiences. Motivating community leaders to initiate group interaction, for instance, between mothers groups and youth groups, to generate group forces, and to promote appropriate values which are mutually supportive among the groups. Encouraging artists from all fields, as well as producers or hosts of radio and television programs, to understand the cultural differences and ways of life of families from all regions of a country, in order to optimize the promotion of positive values and practices.

THE SCHOOL AS LEARNING INSTITUTION FOR ALL GROUPS

We should promote the development of school curricula and media, as well as the teachinglearning processes, in both formal and informal educational settings for all age groups by: 1. Developing and applying curricula appropriate for each level of education, particularly focusing on the development of life skills and good health behavior towards sexual relationships, decisions about drug and alcohol use and similar issues. Developing curricula for institutes of higher learning to improve both teacher and student skills in applying group and teaching-learning processes, particularly in subject matters related to values, morality, attitudes and lifeskills. Develop essential teaching skills for teachers at all levels of education, including university instructors, to be capable of using group and teaching processes that foster learners skills.

2.

2.

3.

3.

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4.

Encouraging school administrators and other social program administrators to advocate teaching-learning processes that inculcate young people with proper attitudes and life-skills.

SOME BROADER COMMENTS

Finally, I believe that everyone can judge what is right or wrong by themselves. No one inherently thinks and does bad things, and so it is possible that society can be peaceful. These are my ideas about our life, from my teaching and thoughts. There is a lot of room to fit in AIDS here, and I include it as a big problem. But we need a bigger program to change these things.

In my work, I teach my students much about thinking for doing. I try to have them trained in the way of life-skills, try to let them think and make the right decision. They have to try to do this every day until it becomes their nature.

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HIV/AIDS MANAGEMENT AND PROGRAMS IN THE MINISTRY OF HEALTH, MALAYSIA

Prathapa Senan 13

10

INTRODUCTION
The Human Immunodeficiency Virus (HIV) is mainly transmitted through sexual intercourse and sharing of contaminated needles among intravenous drug users. Other modes of transmission are via blood transfusion, motherto-child transmission (delivery and breast feeding). Infection also takes place through the exchange of infected body fluids (except tears, perspiration, faeces, urine and saliva) and tissues of the human body. As of 30th September 1998 there were 27405 cases of HIV infections in Malaysia, 96.1% of which were males and 3.9% were females. It is important to note that 82.9%

13

Dr. Senan is now Director, Johor State Health Department, Malaysia

of them were in the age group 20-39 years and that 76.5% were drug addicts. Of the total cases of AIDS (2074) in the same period, 94.0% were males while 6.0% were females. In the absence of a vaccine to cure the disease and curb the spread of infections, the Ministry of Health has therefore placed great emphasis on health education and counseling activities. The main objective of these activities is to promote and encourage individuals to be responsible for their behavior by avoiding risk of infection to themselves and to others. It is obvious that these are not adequate measures to control the pandemic. In light of observations that the actual number of persons with HIV is higher than that reported, it is vital that other strategies are developed to address the various issues related to HIV/AIDS in the country.

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THE PROGRAMS
In response to growing public concern about AIDS, the Ministry of Health developed a plan of action for the control of HIV/AIDS in 1988. This plan started with an awareness program whose purpose was to educate all people concerned with prevention and control of HIV/AIDS, especially health care workers, politicians and religious leaders, and the general public. Current programs reflect the Ministry of Healths concern to address the problems that affect specific groups as well as the general population. These are (i) Program Remaja Sihat Tanpa AIDS (PROSTAR); (ii) programs targeted at women; (iii) programs targeted at the public at large and; (iv) programs for political and religious leaders. (i) PROSTAR was developed to make teenagers and youths (13-25 years) in general more aware of HIV/AIDS. It was felt that youths would be more stimulated to know and adopt a healthy way of life if they could actually participate in the activities designed for them. Through their participation as peer educators and advisors, youths can increase their awareness and contribute in health promotion activities.

(ii) The program for women is designed to inform and better equip women with basic knowledge about HIV/AIDS, and thus stimulate them to be aware of their increased susceptibility to HIV infection. Women deserve special attention because (i) they may be an unsuspecting partner to an infected person, i.e. get infected without their knowledge of it from an infected husband or an ex-drug addict husband who has been earlier infected through sharing infected needles; of (ii) having a large surface area of vaginal tissue with unknown minor breaks in the epithelium where transmission can occur; (iii) having other concomitant infections, e.g. gonorrhea, fungal infections; (iv) being recipients of new doses of virus from their partner whenever they have sex, i.e. each episode of sexual act introduces an added dose of HIV; (v) being subjected to male dominance in sexual matters; and (vi) the formal viewpoint of religion, whereby the wife has to satisfy the needs of her husband. The program is thus initiated to bring the awareness of women on how to reduce the risk of transmission from their sexual partner(s).

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(iii) A program for the general population is necessary to instill an awareness of the causes of HIV/AIDS and their implications for the individual, family, and the community at large. The assumption here is that the general population is as yet relatively unaware of the phenomenon and thus does not understand what measures are necessary to avoid the infection. The usual methods of creating awareness and informing are through the printed and electronic media such as television, radio, journals and newspapers. (iv) The political leaders of the country together with the religious leaders have to be sensitized to the global AIDS scenario. In attempts to fight the spread of the disease, there must be strong political will. Hence, Ministers of the Cabinet and State Chief Ministers were made to know the situation in the country. Similarly, leaders of Islam, Christianity, Buddhism, Hinduism and Sikhism were given adequate information so they can provide it to their followers. Since health workers were at risk of infection while performing their duties, they were given special instructions on the precautions to be adopted.

A program was also developed for allied government personnel who were working with HIV-infected persons, such as those at the Drug Rehabilitation Centers and the prisons. Guidelines on precautionary measures were distributed and explained to them.

EARLY DIAGNOSIS
Prevention of HIV stressed on the realization that there is no vaccine or cure available yet, and therefore the only definitive way to stem the problem is through early diagnosis of HIV infections. Accordingly, HIV screening programs were introduced. These are used for eight basic groups: (i) inmates of drug rehabilitation centers on admission, after six months and on discharge; (ii) high risk cases on admission to prisons, six months later and at discharge; (iii) blood from donors; (iv) pregnant mothers attending government antenatal clinics; (v) all confirmed tuberculosis cases; (vi) persons diagnosed of having sexually transmitted disease; (vii) patients clinically suspected by attending physicians of having HIV infections and (viii) all traced contacts of HIV-infected persons.

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MANAGEMENT OF HIV INFECTION AND AIDS

Present drugs only act to reduce the viral load in a person. They do not cure the persons of HIV infections. They are expensive and therefore the Ministry cannot provide them freely to those infected. Nevertheless, zidovudine (AZT) is supplied to all infected persons. For an infected mother and child identified through the antenatal screening program and for health workers infected at their workplace, combined therapy is available.

Post Exposure Prophylaxis (PEP)

This is a special service to health workers who have possibly been exposed to HIV infections during work. They are given prophylaxis until they are cleared of the infections.

This is necessary to break the chain of transmission of the disease. To further support patients and help their families understand and cope better with HIV/AIDS, hotlines have been made available at all government hospitals. Patients can also seek help from hotlines offered by non-government bodies. Special wards have been created at government hospitals to cater to patients who have developed opportunistic infections related to AIDS. Medical and health staff have been instructed that patients with other sexually transmitted diseases be given prompt treatment, since they can significantly contribute to the reduction of HIV transmission. In this connection, condom use is advocated particularly among married couples. Other groups such as sex workers and their clients are being approached by non-governmental organizations.

Counseling
The pretest counseling was introduced to discourage homosexual behavior. It has now become the norm for the Ministry of Health. Through counseling, a person is psychologically prepared to face HIV/AIDS. The post-test counseling is done to allow the person to accept the result and earn to modify his/her behavior.

Training of Counselors
The Public Health Institute has developed a training module for counselors involved the in the management of the HIV infection. They include health care workers, counselors working in prisons, drug rehabilitation centers and the religious departments.

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Documents
The Health Education and Communication Center (HECC) has developed a series of booklets on various topics on AIDS. These basically are adopted from a series produced by the World Health Organization.

Inter-Country Collaboration
Malaysia collaborates with other countries via the ASEAN task force on AIDS, ASEAN, BIMST (Brunei, Indonesia, Malaysia, Singapore and Thailand), World Health Organization (WHO), UNAIDS and Japanese AIDS Foundation.

Role of Non-Governmental Organizations (NGOs)

The government realizes that many parties are involved in the fight against HIV/AIDS, and in this context non-government organizations can play an active role. Hence, the government supported the formation of the Malaysian AIDS Council. Much of its funds are derived from government sources. The Ministry of Health has also provided support to a halfway house for drug addicts and HIV-infected women. However, this has stopped operating since 1999, and NGOs have taken up the work.

Future Programs
Many more programs have been proposed. Among them are (i) anonymous screening for HIV; (ii) premarital screening for HIV; (iii) care of the single mother and family of AIDS victims; (iv) care for the orphans of AIDS victims; (v) development of hospice care; (vi) community involvement with the care givers; (vii) programs to discourage promiscuity, and (viii) development of a movement of teenagers (male and female) with the motto of we will be virgins at marriage.

CONCLUSION Inter-Departmental Collaboration

Interdepartmental collaboration was initiated through an interministerial meeting chaired by the Minister of Health. At the operational level this meeting is chaired by the Secretary-General of the Ministry of Health and is held once annually. Although HIV infection is essentially a matter related to ones immunological system, its transmission is largely associated with sexual behavior and sharing infected needles by drug addicts. Health education and counseling activities have so far not been successful in prevent-

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ing the spread of the disease. Early diagnosis and treatment remain vital but nothing can replace the social and physical avoidance of the risk of infection, including premarital sex. A medical examination prior to marriage is a sensible precaution that both bride and groom can

adopt. To abstain from having sex with other than ones married partner and to not take drugs are messages that parents and adults alike can widely spread, with the assistance of government at national and state levels.

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HIV CONTROL IN MALAYSIA: COMMUNITY MOBILISATION AND BEHAVIOR MODIFICATION PROGRAMS THROUGH YOUTH
Mohd. Nasir Abdul Aziz,14 Faisal Ibrahim 15 and Rohani Ali 16

11

BACKGROUND INFORMATION
HIV disproportionately affects young people globally. The UNAIDS estimated that approximately one-third of the estimated 33 million people living with HIV in the world are under the age of 25 years old (UNAIDS, 1999a). More crucial estimates are that at least half of all new

infections occur among young people between the ages of 15 to 24 years old. As HIV infections rise in the general population, new infections are increasingly concentrated in the younger age groups (ibid). A staggering 85.0% of all young people in the world today live in the developing world where surveillance is poor, but estimates suggest that over 90.0% of HIV/ AIDS cases are now concentrated.

14,15,16

AIDS Unit, Ministry of Health Malaysia. The views expressed in the paper are those of the authors and are not necessarily those of the Ministry.

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Table 1. HIV Infections, AIDS and AIDS Deaths, Ministry of Health Malaysia, 19861999

YEAR 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 TOTAL

HIV Infections 3 2 9 200 778 1,794 2,512 2,507 3,393 4,198 4,597 3,924 4,624 4,692 33,233

AIDS 2 2 18 60 73 71 105 233 347 568 875 1,200 3,554

AIDS Deaths 2 1 10 19 46 55 80 165 271 473 689 874 2,685

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Malaysian Ministry of Healths statistics revealed that as of 31st December 1999, 33.7% of the total HIV infections in this country occurred among those between 13 to 29 years old (Ministry of Health 1999). Although the official numbers of HIV/AIDS in this country are considered as not alarming by international standards as compared to the other nations around the region, the Government views these statistics seriously. If the trend of HIV/AIDS among Malaysian youth is left unchecked, the impact of this pandemic to the country could be disastrous (refer to Table 1). While researchers around the world continue their quest to find a cure or vaccine, the best hope currently available for combating this epidemic is to help people choose safer behavior so that they will be less likely to contract and spread HIV. But the question is, can the government do something to affect private and intimate behaviors causing HIV infection? Obviously, sensitive issues are involved. In light of known factors it is therefore important for the Ministry to assess priority areas, activities, strategies and programs in order to maximize efforts and scarce resources.

EPIDEMIOLOGICAL SITUATION OF HIV/AIDS IN MALAYSIA

Injecting/intravenous drug use (IDU, IVDU) remains the major reported mode of HIV/AIDS transmission in the country, accounting for 76.4% of all cases in 1999. However, there has been marked increase of cases through sexual route since 1994, i.e. 5.3% (1994) to 7.8% (1995) and 14.4% (1998) to 19.2% (1999). Over 90.0% of the reported cases of HIV Infection were males, ranging from 98.8% in 1990 to 96.2% in 1995. The proportion of females infected with HIV, however, has risen from 1.4% in 1990 to 7.2% in 1999. From 1988 to 1998, a total of 162,750 addicts were identified throughout the country. Out of these 78.9% were between the ages of 20-29 years. It is observed that the trend of motherto-child transmission has risen during the past three years. 15 cases of HIV infected babies were detected in 1996, 20 cases in 1997, and 34 in 1998. As of 31 December 1999, a total of 138 cases of vertical transmission of HIV were reported to the Ministry of Health Malaysia.

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In terms of distribution by ethnic groups, Malays accounted for 72.8% of the total HIVinfected persons, followed by Chinese (15.0%) and Indians (8.8%) respectively. Non-nationals contributed to 2.6% of the overall HIV/AIDS infections in Malaysia in 1999 (ibid).

Given the immense impact of HIV/AIDS on life expectancy and health, the government cannot ignore but to confront the epidemic wisely. This paper is an attempt to analyze the experience and rationale of the Ministry of Healths involvement in combating HIV/AIDS amongst Malaysian youth.

YOUNG PEOPLE WITH HIV/AIDS - THE MALAYSIAN SCENARIO

According to the 1999 statistics, 2.9% of the reported HIV victims in the country were young people below the age 20 years, 33.7 % between 13-29 years and 44.2% in the 30-39 age group and 19.2% were above 40 years. Clearly adolescents and youth comprise a major group affected by the pandemic, which is comparable with the rest of the world. The vulnerability of young Malaysians towards HIV infection is evident from a survey conducted in Kuala Lumpur in 1996 among youth aged 13-25 years. Of those interviewed 5.0% were involved in drug abuse some time or other, and 6.0% of them have had experienced sexual relationships prior to marriage.17
17

RESPONSE OF GOVERNMENTS : SOME EXAMPLES

National governments bear the heaviest responsibility for protecting their young people from HIV/AIDS and of mitigating its impact on society. They can do so by issuing policy guidelines involving all sectors in the planning and monitoring the epidemic and the national response to it. They can ensure equity in access to prevention and treatment for the poorest, make resources available for interventions and mobilize increased funding. Many examples of government involvement and best practices exist across the AsiaPacific region. In India for example, special programs have been developed to target people through a school education program in 15 stages, films, and a pop-music program across the country. In Thailand and Cambodia, the military au-

For further reading in Bahasa Malaysia see Remaja dan AIDS: Media, Nilai, Personaliti dan Tingkahlaku (Shamsuddin A.R. and Iran Herman, Kem. Kes Malaysia 1996.)

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thorities are involved in AIDS education, condom distribution, and HIV prevention efforts to young recruits. Due to different cultural and religious background, the Ministry of Health of Malaysia decided that the approach towards HIV/AIDS prevention and control activities especially among youth had to be modified to suit to the countrys multi-ethnic sensitivities. Program officers of the Ministry conducted brainstorming and discussion sessions on various topics targeting on youth and HIV/AIDS. After much discussion and arguments, a consensus was reached. And despite much controversy surrounding the subject, officers were not discouraged to deal with the issue and instead regarded their task of designing AIDS preventive activities as uniquely challenging.

tutions throughout the country. The main objectives were to gauge the knowledge of Malaysian youth about HIV/AIDS, attitudes and behavior. The survey was done over a period of two months in 1996. Some of the key findings of the survey are as follows:

Negative Behavior of Youth

The survey revealed that there was a positive correlation between smoking and drug taking. 99.0% of the residents of the drug rehabilitation centers admitted to cigarette smoking as compared to 34.0% of the youth who were non-residents. 6.0% of the non-residents had admitted to having premarital sex, as compared to 54.0% of the residents (World Bank 1999).

BEHAVIORAL SURVEY OF HIV/AIDS AMONGST YOUTH

This behavioral survey was one of the earlier steps that the Ministry of Health undertook with the Universiti Kebangsaan Malaysia (UKM) before embarking on the special programs that were specially designed for youth. It involved 4,347 respondents comprising inmates between 13-27 years of age in drug rehabilitation centers, schools, factories, offices, and social insti-

HIV/AIDS Knowledge and Exposure

Respondents exposure to information about HIV/AIDS through the media and their knowledge on the subject have been described as satisfactory (mean score of 18.5). Most of the respondents replied that their major source of information was through the radio, newspaper, magazines and television (ibid).

Sociocultural Values
This survey also made an attempt to gauge the

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respondents values relating to education, family relations, performance of religious obligations, and lepak (loafing). There was a positive correlation (classified as having a positive attitude) noted among youth with social and cultural variables, namely higher education level, good relationships within families and regularity in performing religious obligations.

Named PROSTAR (Program Sihat Tanpa AIDS untuk Remaja or Program for Healthy Youth without AIDS), the program was essentially a form of community mobilization effort aimed at stimulating youth to face up to the challenges and threats of HIV/AIDS.

Objectives of PROSTAR
PROSTARs activities are designed to generate interests among youth about HIV/AIDS. Hence, they will be motivated to increase their knowledge and be aware about issues pertaining to HIV/AIDS. These could then influence them to practice healthy lifestyles and avoid behaviors that place them at risk of acquiring HIV infection. The program places strong emphasis on moral and religious values.

PROSTAR
In response to the global situations and within the country, and also after considering current approaches toward the problem, the Malaysian government adopted a program targeted at adolescents that would promote healthy attitude and behavior, hence controlling the spread of HIV infection particularly among the young generations. The program is one based on encouraging and nurturing change instead of forcing and imposing on adolescents. The key concepts in the approach are the promotion of understanding and development of healthy behavior. After much deliberation and careful planning (and using findings of the survey as a baseline), the Ministry of Health launched a program in 1996 targeted at Malaysian youth.

Target Audience
PROSTAR is targeted at secondary school children, factory workers, university and college students, youth associations and clubs, and those not associated with any formal or informal institutions. To achieve nationwide impact, activities are implemented from district to state to national levels. At the state level, the State AIDS officers, Health Education Officers, Health Inspectors and other key paramedical personnel

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carry out the activities.

Using Peer Educators

As the program is meant for youth, the approach adopted is one that stresses by the youth, for the youth and through youth. Accordingly, the program consists of a structured module to train peer educators. Peer educators are chosen from motivated youth and adults between the ages of 18 to 35 who have earlier been exposed to this program. These peer educators (with the help of the staff from the Ministry of Health) would conduct suitable AIDS preventive activities via the Prostar Clubs.

PROSTAR Clubs
Currently there are more than 300 registered PROSTAR in secondary schools and districts throughout the country. These clubs are registered with the Registrar of Societies, Ministry of Home Affairs. As of 31 December 1999 a total number of 142,845 activities have been carried out by the PROSTAR Clubs and a total number of 300,000 youths have been exposed to these activities (refer to Table 2).

Sources of Funding
Apart from funding received from the Ministry

of Health, PROSTAR Clubs get financial support from UNICEF to help them carry out their activities. To date, more than RM291, 800 (USD77,200) has been allocated to the various PROSTAR Clubs throughout the country. As seen in Table 2, more than 7,000 PROSTAR facilitators have been trained and registered with the Prostar Clubs. Key information on HIV/AIDS integrated into the structured module for PROSTAR relate to religious and social values and preventive behavior with emphasis on abstinence from sex (premarital and unsafe sex practices) and on freedom from drugs, procreative sex, and unwanted pregnancies. Bulletins are used to disseminate information on HIV/AIDS. Other forms of media such as videos and sketches are also used to stimulate behavioral change. While realizing that PROSTAR has its constraints and limitations, the bottom-up approach is crucial in building up broad-based grassroots support for positive actions that will lead to curtailing the pandemic in this country. The approach is also is meant to be shared to stimulate solutions that are more realistic and workable.

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Table 2. Number of PROSTAR Facilitator Training Courses and Number of Youth Exposed to PROSTAR Sessions by States, 1999
Number of training sessions and youth exposed STATE /(Capital) Kelantan Terengganu Pahang Perlis Kedah Pulau Pinang Perak Selangor Negeri Sembilan Melaka Johor Sabah Sarawak (Kuala Lumpur) TOTAL PROSTAR sessions conducted and youth exposed Number of session counducted 27 79 58 15 115 35 62 118 18 65 84 35 75 792 Cover in number (youth) 1,161 17,626 9,240 1,457 56,970 10,835 6,141 11,956 2,523 9,215 3,628 1,810 9,388 735 142,685

PROSTAR facilitators training courses Number of Number of session facilitators counducted trained (PRS) 12 465 11 14 2 21 8 31 12 8 4 18 5 12 158 837 680 120 1,183 409 1,316 870 227 163 757 193 538 7,808

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THE CHALLENGES AHEAD

Given the fact that HIV infection is a universal problem and that it cuts across social, religious and economic boundaries, multisectoral approaches are therefore needed to address the issues of this pandemic. Strategies have to be culturally and socially appropriate and acceptable. Cultural sensitivity is given its due importance besides activities that aim at providing information and knowledge.

needed, the Ministry is prepared to continuously encourage and develop youth who are free of HIV.

Measuring the Impact of Program

Another major challenge is to measure the impact of the program on disease spread, especially among youth. The task is difficult as not much is known about relative cost-effectiveness of different prevention strategies. Nevertheless, the Ministry is attempting to measure the program for the purpose of providing bases for ongoing projects, resource allocations and optimization of scarce resources.

Sharing Information and Mobilization of Youth

As shown by the PROSTAR program, youth can be mobilized if adequate information and responsibilities are given to them. They want to save themselves and their peers lives. The program is effective, efficient and inexpensive. Nevertheless, the concern now is how to sustain their interests and make them continue being agents of change.

CONCLUSION
Reaching out to the young population poses a daunting challenge, yet rewarding in many ways. By getting them involved, it is realized that they can partake in national programs if they can be empowered. They can act to reach out to their friends and peers. Mobilizing young people to spread the messages of HIV prevention is effective, cost-benefit and inexpensive. The Malaysian experience with youth has provided an example of one best practice in HIV prevention program. This can be shared with Malaysias neighboring countries and others in the Asia

Sustaining Behavioral Change

Sustaining behavioral change among facilitators and youth is a primary challenge confronting the Ministrys efforts. As various approaches are

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Pacific Region.

Acknowledgements
We gratefully acknowledge the support and encouragement given by Y Bhg. Tan Sri Datu Dr Mohamad Taha bin Arif, Director-General of Health and Dr Lee Cheow Pheng, former Director of the Disease Control Division Ministry of Health. We are also indebted to Y Bhg. Datin

Dr. Hjh. Harrison Aziz Shahabudin and Dr. C. Prathapa Senan, former Deputy Directors of Disease Control Division (AIDS/STI) who initiated and fully supported the PROSTAR program, and hence the material for this article. To Drs. Abdul Rasid Kasri, Ahamad Jusoh and Fauziah Mohd. Nor of the AIDS/STI Unit of the Ministry of Health, we are grateful for the information given.

REFERENCES
Ministry of Health Malaysia. (1999). Annual report on HIV/AIDS. Kuala Lumpur. PROSTAR. (1999). Report on PROSTAR presented at the 5th International Conference in Asia and the Pacific Kuala Lumpur, Malaysia. October 1999. Roziah Omar. (1999). AIDS, HIV Control and Their Behavioral Aspects in Malaysia. In Haliza, MR and KJ Pataki-Schweizer (eds), Behavioural Models in Medico-Health Research and Health Intervention. Institute for Medical Research/WHO, Kuala Lumpur pp. 73-80. Shamsudin A. Rahim and Iran Herman. (1996). Remaja dan AIDS: Media, Nilai, Personaliti dan Tingkahlaku. Kementerian Kesihatan Malaysia, Kuala Lumpur. UNAIDS. (1999a). Costing Guidelines for HIV/AIDS Prevention Strategies UNAIDS Best Practice Collection, October 1999.

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UNAIDS. (1999b). Young People and HIV/AIDS: Issues and Strategies for Asia and the Pacific. UNAIDS Best Practice Collection, October, 1999 UNDP. (1999). Facilitating Behavior Change: A Guidebook for Designing HIV Programs. June 1999. World Bank. (1999). Confronting AIDS - Public Priorities in a Global Epidemic.

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MANAGEMENT OF HIV/AIDS IN THE PRISONS DEPARTMENT, MALAYSIA

Ali Othman18

12

INTRODUCTION
The HIV/AIDS epidemic started to hit the country in the 80s and the prison community, being a special institution for detaining wrongdoers, was not spared from the phenomenon by virtue of a compulsory screening of blood for HIV drug addicts. The first HIV case reported for Malaysia in fact occurred in prison in mid 1989 with the diagnosis of four prisoners as HIV carriers. By November 1998, a total of 7,608 prisoners including 171 women were detected to be

positive. Of this 6,330 (160 women) were released and were then free to join their spouses and families or friends (Table 1). The remaining 1,288 (11 women) continued to live in prisons throughout the country. This represents 5.21% of the overall prison population, which are 24,689.

Table 1: Distribution of Prisoners by Sex and Category (November 1998)

Category Convicted Remanded Released Male 1197 91 6320 7608 Female 7 4 160 171

18

Formerly with the Special Treatment Division, Malaysian Prisons Headquarters, Bukit Wira, 43000 Kajang, Selangor

Total

Sources: Prison Department Records, 1998

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THE PREVENTION PROGRAM Target Group Program

The prevention program covers all prisoners, whether they are on remand or detained for some other reasons. Apart from that, all prison staff of Malaysia are classified as target group and is thus covered by the prevention program. The purposes of the program are (i) to control and prevent HIV/ AIDS infection in the prisons, (ii) to minimize the social impact among prisoners who have been infected with HIV/AIDS, and (iii) to provide continuous prevention and educational program for prisoners and staff.

controlling HIV/AIDS, particularly in prison setting.The ultimate aim of the prevention program is to effectively control the problem.

Organization
At the national level, a joint secretariat which comprised of the Special Treatment Unit within the Prisons Department and the Disease Control Division of the Ministry of Health was formed. At the state level, a health officer in charge of AIDS works closely with the prison counselors in control and prevention activities. These involve planning, coordinating special activities, and contributing some budget for the prisons activities. The health officer within the State Health Department also acts as a referral specialist for the entire state.

Strategies
Various strategies have been designed to overcome the problem. Among them are (i) prevention of HIV/AIDS infection in the prison, (ii) prevention of infection through blood and sexual activities (iii) prevention of HIV infection among pregnant women, (iv) improve the health services for HIV carriers, and (v) provided continuous prevention through educational program and training in all areas of HIV/AIDS.

Surveillance
The surveillance program carried out by the Ministry of Health includes screening activities for blood among prisoners identified as highrisk. They are intravenous drug-users, prostitutes (women prisoners), those with multiple sex partners and homosexuals. Ill prisoners are also categorized as high-risk and thus are subjected to the test.

Implication
All activities and actions are for the purpose of

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Counseling
As high risk-groups comprise vulnerable individuals, they are given pre-test and post-test counseling. A pre-test counseling is given by a Health Officer or by a Prison Counselor either on an individual or group basis. Information about the disease is given at the beginning of each session. This is to remove doubts about HIV/ AIDS and to give them hope while providing confidentiality as their would-be-status. At the end the session a written consent for their blood test is obtained. The next session of counseling is when inmates are about to be given their blood test results. The purpose of the post-test counseling is to prepare them mentally for accepting their HIV status. During the session they are advised to inform their status to their spouses and families. At this stage, the Prisons Counselor has to make an assessment of the prisoners reaction. This is the critical period. Prisoners may or may not wish to confide with anyone. Based on this the Health Officer has to do the necessary reporting as provided under the Infectious Disease Control Act 1988 within 21 hours after the test has proved positive.

Confidentiality
The HIV/AIDS status of prisoners is regarded as confidential as stated in the Director of General of Malaysia Order Bill. 11/91 dated 12th December 1991. This confidentiality is evidenced in their personal record, medical treatment card, documents, clothes, room and block they live in. A prisoners HIV/AIDS status will only be notified tothose who need to know and officials conducting their duty. Despite such measures, leakages do happen and as this is unintentional, remedial measures are accordingly taken. Sometimes individuals can be uncooperative or insensitive, and this is part of the reality of the disease situation.

Inmates Station
The Prison Department of Malaysia has instituted several Zones or Centers throughout the country with the purpose of strengthening the prevention and control of HIV/AIDS program. The zones are (i) North Zone (ii) Central Zone (iii) South Zone, and (iv) East Zone. Each prison conducts day activities for prisoners. Participants are limited to activities which will not cause them any injuries. At night they are housed in particular blocks.

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As a way to sustain family ties, families of inmates are encouraged to visit the inmates. It is hoped that the families provide moral support during the visits. At other times counseling services are provided by the prisons health officers or the Prison Counselor.

HEALTH EDUCATION
The prison Departments approach to prevention is mainly done through health education and counseling. As far as possible inmates are watched for practices that will further spread HIV in the prisons. Hence, HIV-positive inmates are separated from non-HIV. Nevertheless, there are always incidences that place prisoners at risk of infection through the practice of tattooing and homosexual activities, which they do secretly. Some NGOs have suggested that harm reduction in prisons be implemented in prisons. However, the idea was not accepted on the ground this is prohibited by law. Teaching drug addicts about safe methods of injecting drugs and using condoms can lead to homosexual activity. Homosexual intercourse is an offence under Section 377 of the Penal Code which prohibits unnatural intercourse. Harm

reduction is not a successful program. This was found so in some countries where it was instituted, and the program was subsequently abandoned. Instead, more success has been achieved from programs which rely on preventive education where staff and prisoners are taught on subjects like Basic HIV Epidemiology and Health Awareness, Safe Sex and Current Issues Concerning HIV/AIDS. Talks on those topics are given by health officers, prison officers and NGOs personnel. Special emphases are placed on universal precautions in accordance with the Prison Director General Order Reference 10/91 dated 31st October 1991.

Awareness Training for Prison Staff

All prison staff is given information on HIV AIDS clinical signs and symptoms, epidemiology and risk behavior. A training module for new recruits of Prison Warders (K X 7) includes basic HIV/AIDS knowledge. In addition state prisons have been instructed to organize continuous HIV/AIDS awareness campaigns for their staff and inmates. They are to work in collaboration with the State Health Department.

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HIV/AIDS Counseling Programs

The HIV/AIDS counseling programs carried out are vital in the prevention of HIV infections in the prisons. Various categories of staff working in the prison contribute to the programs. They include prison counselors, medical officers, welfare officers, religious affairs assistants and Chinese interpreters. There are no specialized HIV counselors, and full and in-depth counseling as such is not possible. Realizing the importance of this, the Prisons Department had discussions with the Ministry of Health. It was agreed that HIV/AIDS be given more priority but this has to be done in stages. Consequently, a special training module on HIV/AIDS counseling for the Prisons Department of Malaysia was designed. In May 1997, 36 prison counselors were selected to attend a Trainer of Trainers HIV Counseling workshop at Pulau Langkawi. This was followed by training at six prison zones including Sabah and Sarawak. At the end of 1997, there were 36 core prison counselors and 240 officers related officers trained in HIV/ AIDS. The Prisons Departments goal is to get its entire staff exposed and trained in HIV/AIDS by the year 2005.

TREATMENT AND FOLLOW-UP

Medical services are provided for all HIV-positives. Very ill cases are given immediate medical attention. Special counseling is given to make them realized the importance of preventive behavior. Through the Standing Order from the Director General, Reference F3/001 dated 12/ 10/94 prisoners are made to agree that they will take care of their health and avoid infecting others through unsafe sexual practices. However, the Prisons Department is constrained in its effort to control HIV infections outside the prison walls. There is no support service program in place other than that provided through counseling and health care when approached by HIV cases. Although lists of to-bereleased are made, the department finds it difficult to act as many on it have false addresses. Due to the above constraints the Prisons Department is seeking the help of NGOs to provide further assistance to released inmates. In particular, the involvement of PENGASIH, Malaysian Care and the Malaysian AIDS Council are notable.

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CONCLUSION
The Prisons Department has the fullest cooperation of the Ministry of Health. However, there are still areas that require support and strengthening. Of utmost importance is family and societal support for released prisoners. The prisons responsibility goes as far as informing the health

authority about released inmates. A lot more effort is needed from individual and communal groups to lessen social stigma against prisoners, in general, and HIV/AIDS in particular. The HIV/AIDS is everyones concern. It is not only a public health problem, but more so it is a social problem.

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HIV/AIDS AND OLDER PEOPLE: MYTHS, REALITIES AND HIGH RISK ACTIVITIES
Choo Keng Kun19

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INTRODUCTION
The AIDS pandemic has been well recognized as a major social problem in most countries around the world. According to UNAIDS (1999), over 33.4 million people are living with HIV. Since the beginning of the epidemic over 13.9 million people have died from AIDS. In 1998 alone, over 5.8 million adults were infected by HIV and over 900,000 older people succumbed to the disease. (ibid). Thus as the AIDS epidemic spreads globally at an accelerating rate, more older people 20 are increasingly infected and affected by the disease.

Although HIV/AIDS is commonly associated with young adults, available statistics show that older people constitute a small but significant proportion of HIV/AIDS cases in many countries (see Table 1). According to Sabharwal (1997), in most countries such as the USA, UK, East Africa, Brazil and India, up to 11% of persons identified with AIDS belong to the older age group. The transmission of HIV among older people is expected to increase significantly in the Developing World where more than 95% of all HIV-infected people live (UNAIDS 1999). The issue of older people and HIV/AIDS has been ignored largely due to ignorance,
20

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Dr. Choo is a senior lecturer at the School of Social Sciences, Universiti Sains Malaysia, 11800, Penang In this paper older persons refer to those above 50 years of age.

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prejudice and marginalization of older peoples roles and sexual behavior in society. The picture that is beginning to emerge clearly demonstrates a need to expose and confront this problem. Because of the lack of attention given to HIV/AIDS among older people, the statistics tend to be scanty and unreliable, often underes-

timating the real problem of HIV/AIDS among older people. Consequently, the social-psychological, economic and health impact of HIV/ AIDS prevention, management and intervention programs misses older people. This paper focuses on HIV/AIDS in older people. It also fo-

Table 1. Incidence of HIV/AIDS Cases Among Older People, as a Proportion of Total Recorded HIV/AIDS Cases, by Percent
Country Argentina Age Group over 45 % of Total Recorded HIV/AIDS Cases 9.0 men 4.0 women India Thailand United Kingdom Zimbabwe Malaysia Sources: over 54 over 54 over 50 over 5o over 50 11.0 3.8 11.0 6.0 1.4 HIV AIDS AIDS AIDS HIV/AIDS HIV or AIDS Cases AIDS

All countries except Malaysia adapted from Evans 1996:2; Malaysia from Malaysia AIDS Council (as of 1998)

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The belief that older people do not get AIDS and the lack of attention and involvement of older people in HIV intervention programs are associated with a lack of understanding, misinformation and myths related to sexuality and socio-cultural norms of older people in their communities. The reality is that older people including older women do engage in sexual and non-sexual behavior that may be risky in terms of exposure and infection, and do get HIV/AIDS.

cuses on the myths, misinformation and risk behavior among older people that may lead to HIV infection. The paper concludes with a discussion of the need for support and involvement of older people in HIV/AIDS intervention programs and some suggestions for addressing these needs and issues.

The myth that AIDS is a young peoples problem persists, mainly because it is a disease associated with sex and older people arent supposed to have sex... Surprisingly, older

MYTHS, REALITIES AND HIGH RISK ACTIVITIES

HIV/AIDS

A commonly held myth is that older people do not have sex because they do not experience sexual desire. The fact is that many older people are sexually active (even though there is often no public expectation or acceptance that older people will have sex). Indeed, in many societies in Asia, it is culturally accepted that older males may go to sex workers. They may go to brothels or make arrangements with women who carry out occasional sex. This practice is often associated with the common belief in many cultures including Malaysia, China and Indonesia, that having

people too, often think that the elderly are past all that, that it is somehow inappropriate or ridiculous or even disgusting for older people to seek and give sexual pleasure... Older sex is seen as embarrassment. Sexuality in later life is considered so unusual. And this prejudice is at least partly to blame for the spread of HIV and AIDS among the elderly because it has prevented older people being offered or asking for information about protection against HIV. (Kaufmann, 1995)

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sex with a young virgin is rejuvenating and promotes longevity. As a result, many older men go to young sex workers and in doing so may put themselves at risk to HIV infection. Similarly, older women especially those who are widowed may have sexual encounters. This can increase their risk of contracting HIV/AIDS through high risk and unsafe sexual activity. It is of significance that older people may be less likely to use condoms than the general population, since condoms are often seen as a family planning measure and therefore not relevant to older people. There may also be a higher level of embarrassment in talking about condom use (or other sexual matters) if older people are not used to discussing such issues openly. In some countries it could be difficult for older people to get condoms as doctors request the condoms in the first place). Also, older men may sometimes have trouble maintaining an erection and so could find condoms difficult to use. As a result, sexually active older people are at risk to HIV/AIDS infection through unsafe sexual behavior. Older people may be at a higher risk to infection through unsafe sex since they may not be able to negotiate condom usage with their sexual partners. This can be especially so in long

term relationships where to demand condom use would imply lack of trust, particularly when the risk of pregnancy is absent due to menopause. Given the fact that older, post-menopause women may be more susceptible to sexual transmission of HIV than younger women owing to the drying and thinning of the tissue walls of the vagina, the risk of contracting HIV through sexual transmission is certainly greater. Besides the risk of contracting HIV/AIDS through high risk and unsafe sexual activity, older people may also risk HIV/AIDS infection through blood and blood products. Indeed, HIV transmission by blood transfusion may affect older people disproportionately. In USA, nearly half of all blood transfusion is given to people over 60, making this age group more vulnerable to infection through the use of blood products. (Evans 1997:4) Older people in many cultures may be exposed to HIV infection through their roles as healers and practitioners of traditional medicine. In many cultures, older women tend to be the traditional midwives and birth attendants in their communities. As such, they represent a particular risk group because they may be exposed to infection in the form of large quantities of infected fluids on a regular basis whilst receiving less in-

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formation, education and equipment (e.g., gloves) than practitioners of western medicine exposed to the same risks.

Support and Involvement of Older Women in HIV/AIDS Prevention and Management

There has been little focus and attention given to older people as care givers in intervention programs related to HIV/AIDS at the local, national and international level. In spite of the heavy burden and demands placed on older people as care givers to PWAs (people with AIDS) in their families and communities and the fact that older people represent a high risk group. In order to maximize the human resource potential and effectiveness of older people in AIDS prevention and AIDS management various types of support systems must be developed to enable and empower older people to be involved in AIDS intervention programs at the national, state and local levels. In this regard, the special needs and barriers confronting older people affected by HIV/AIDS must be carefully assessed and incorporated into AIDS intervention efforts. It must also be recognized that older

people and their families often face financial problems as a result of HIV/AIDS as they spend more on treatment and care, whilst losing a money-earning family member due to the disease. Consequently, financial support systems for women as care providers must be developed to enable them to contribute effectively and efficiently in providing care to PWAs and their dependants. With the proper support, networking, information education and training, older people can be effective carers and managers of HIV/AIDS in a good home care environment for PWAs. There is an urgent need to develop the human resource potential of older people in government and non-government intervention programs so they can be active contributors to AIDS prevention and AIDS management. Older people have a positive role to play at many levels, from running community support groups to fund raising and networking. Many of them already have experience, understanding and position in their community and this can be channeled towards AIDS work including providing counseling and training others (including older people) in AIDS prevention and AIDS management.

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Older women can also be trained as trainers and peer educators in developing support network systems for carers of PWAs. For instance, older women as traditional birth attendants and medical practitioners should be tar-

geted for educational initiatives, since they may be especially at risk and they are a great potential resource in disseminating information about HIV.

REFERENCES
Evans, Tansy. (1997). HIV/AIDS and older people. In HelpAge International Conference Report. Conference on Intergenerational Involvement in HIV/AIDS Prevention and Care, New Delhi, 11-14, March 1997. United Kingdom: Help Age International. Kaufmann, Tara. (1995). HIV/AIDS and Older People. AIDS Concern. London. Sabharwal, Mohni. (1997). Keynote Address. In HelpAge International Conference Report. Conference on Intergenerational Involvement in HIV/AIDS Prevention and Care, New Delhi, 11-14, March 1997. United Kingdom: Help Age International. UNAIDS. (2000). AIDS Epidemic Update, December 1999. Working paper presented at the International Workshop, Planning for the Social and Economic Impact of HIV/AIDS in Developing Countries, March 27-31, 2000, Penang, Malaysia.

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PSYCHOSOCIAL ASPECTS OF HIV/AIDS PREVENTION: A LOOK AT COMMUNITY AIDS SERVICE PENANG (CASP)
Ismail Baba21

14

INTRODUCTION
AIDS was first discovered in the early 1980s. In America and Europe, gays, bisexuals and intravenous drug users (IVDUs) were the first groups affected by this epidemic. In Malaysia, the first case of AIDS was reported in 1986 but there were already a few unreported cases as early as 1984. Because health professionals at

21

Dr. Ismail Baba is a senior lecturer at the School of Social Sciences, Universiti Sains Malaysia, 11800, Penang.

that time were not trained to recognize signs and symptoms of HIV/AIDS, many cases were not reported. The fact that many countries were in a denial stage at that time, made it very difficult for Malaysia itself to acknowledge the existence of AIDS then. Thus, while every government in the world was busy blaming each other for the AIDS epidemic (for instance, the United States of America used to blame Haiti, and Malaysia used to blame Thailand (Green 1994; Klosinki 1992), community-based groups and non-government organizations (NGOs) began to mushroom all over the world to assist with many of the unmet needs of persons with HIV/AIDS.

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THE ROLE OF NGOs (Non-Governmental Organizations)

There has been very little written about the role of non-government organizations in Malaysia, or anywhere in the world for that matter. Many authors have mentioned that providing social support promotes the psychological well-being of sick persons (Green 1994; Hart, et al 1994; McCann and Wadsworth 1994; Seeley, et al 1994). So one of the main roles of NGOs is to act as social support systems to persons with HIV/AIDS, and NG0s were first to respond to these unmet needs of persons living with AIDS (PLWAs). This is because government organizations take longer to address certain issues and regulations also prevent many government bodies from acting on certain decisions, especially concerning PLWAs. Many government employees who feel strongly about helping others but do not want to deal with the government red tape, often find their solution by joining NGOs as volunteers. By doing this they are free to engage themselves in helping PLWAs while meeting their own needs or motives. NGOs dealing with HIV/AIDS also exist because there is an awareness of the need to fulfill certain needs of the marginalized groups

who are least likely to get help from the government because of their unrecognized status in the community and societys perception of them. This is very clear in the case of IV drug users, sex workers and gay men. Providing clean needles for IV drug users and free condoms to sex workers or even to sexually active young people have always been seen as condoning or even encouraging the behavior, notwithstanding many studies showing that these approaches have been very effective in reducing the incidence of HIV/AIDS (National Research Council 1990). NGOs also exist because of the unmet needs of groups such as women, children, and even elderly persons with AIDS (because of the slow progression of HIV, many have discovered their infection at a later age, so in the United States and Europe, there are a growing number of elderly persons with AIDS). At the moment, there are about thirty NGOs actively involved in addressing HIV/AIDS-related issues in Malaysia, all members of the Malaysian AIDS Council (MAC). MAC was formed in 1992. Its main objectives include strengthening support services for PLWAs and their families. MAC coordinates programs and helps with AIDS prevention activities. As a member of MAC, each

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NGO has its own objectives and its own target group(s), such as IV drug users, sex workers, gay men, transvestites, women, children, or youth. As members of MAC, they also have their own skills and knowledge to share with others.

NGOS AND CASP (Community AIDS Service Penang)

Working in partnership with other relevant organizations is another role of NGOs. The concept of partnership can be either informal or contractual working agreements among service providers. For example, CASP (Community AIDS Service Penang) used to provide an AIDS hotline in Penang when it first started, but to avoid duplication it agreed to let another AIDS organization operate it. The main objective of these agreements is to provide effective networking among government organizations, NGOs, industries and corporate bodies. Thus, all parties can maximize services promoting HIV/ AIDS awareness or providing help to PLWAs. Partnerships can also include the sharing of resources and expertise. Shared resources and expertise can include staff that are knowledgeable about HIV/AIDS, training materials on HIV/AIDS, space and equipment.

Working in partnership also involves collaboration between government bodies and NGOs. In many instances, CASP plays an active role in bringing to all service providers a common understanding of goals and directions which can best provide services to the HIV/ AIDS community. Since information about HIV/ AIDS treatment is growing and changing constantly, the Ministry of Health can play an active role of sharing and disseminating information about HIV/AIDS to NGOs. The partnerships between government and NGOs are necessary for social support in handling PLWAs. As an NGO, CASP also acts as a catalyst or motivator in persuading government to change certain policies pertaining to PLWAs in such areas as jobs, insurance, housing, schooling, fostering babies with HIV. As we know, there are cases of HIV among babies and children. These children face a tremendous amount of rejection and discrimination while they are growing up. We need sensible policies to address social problems pertaining to these children. CASP was established in 1989 by a group of concerned lecturers at USM together with other interested individuals in the community. CASP carries out its aims and objectives without prejudice towards any individual or group

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regardless of ethnicity, religion, sexual orientation and nationality. Like any other newly established organization, we had problems involving money, manpower, space, and of course all the stigma attached to HIV/AIDS by the community. CASP was the first HIV/AIDS organization formed in Penang and the second in the country after Pink Triangle organization in Kuala Lumpur. During its first six years, CASP was fortunate to have a small grant from the Australian government to provide for its financial needs. Now CASP has to stand on its own and search for financial support. The operating budget is about RM20,000 a year. A full-time staff of two, and thirty active volunteers include clinical doctors, nurses, students, teachers, clerical staff, housewives and educators serve the center.

as a drop-in center where people drop by and get information on HIV/AIDS. The center is open Monday to Friday from 10:00 a.m. to 7:00 p.m. (2) Promote HIV/AIDS awareness and the practice of safer sex. CASP educates factory, hotel, hospital, prison workers, inmates at drug rehabilitation centers, youth and school children and sex workers. When delivering a talk on AIDS, CASP spokesmen do not exclude the issue of human sexuality. CASP explains to its target groups which sexual activities are totally safe, which are possibly safe and which are totally unsafe. This allows people to make informed decisions. CASP also believes that when talking about sex, its spokesmen have to use language and terminology that people are familiar with. (3) Stimulate change in high risk behavior which is likely to lead to HIV infection. CASP distributes free condoms to sex workers in one of the red light areas in

CASP FUNCTIONS AND ACTIVITIES

CASP functions to: (1) Provide information about HIV/AIDS and its prevention. For this purpose, the CASP office serves

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Penang. The volunteers distribute condoms and talk to female sex workers and transvestites about how they can get HIV, or how they can pass it to their families and clients. In addition to that, the volunteers help them with advice about how to deal with difficult clients, especially those who refuse to use condoms. For example, volunteers ask sex workers to tell their clients that they themselves may have already been exposed to the virus and that they do not want to pass the virus to their clients. With IV drug users the volunteers also teach them how to clean their dirty needles and avoid sharing dirty needles if possible. When CASP gives a talk to a rehabilitation center, inmates are encouraged to share information about their HIV+ status with their spouses. Inmates are divided into small groups and encouraged to discuss why they are so reluctant to tell their spouses or partners about their HIV+ status. Many IV drug users are afraid of losing them once they know the truth.

(4)

Facilitate confidential HIV testing services. If clients have reasonable doubts that they have already been exposed to the virus, the centre encourages them to undergo an HIV test. CASP has a few panel doctors to deal with clients who need anonymous HIV testing.

(5)

Provide confidential and free pre- and post-test counseling on HIV/AIDS and its related issues. CASP prepares its clients mentally and psychologically for their HIV tests. Clients are normally asked why they feel it is necessary for them to take the test. The centre receives from time to time the so-called worried well clients that call and need the test. CASP normally counsels them first, but if they are still worried the center will recommend that they take the HIV test.

(6)

Provide telephone counseling services. The telephone counseling is an on-going activity. Many PLWAs are not ready for

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face-to-face counseling. Therefore, telephone counseling can reduce some of their anxieties or fears. The telephone counseling services are meant for PLWAs and their families. If they are ready, face-to-face counseling is provided to those who need long- or short-term term social and emotional support. People with HIV/AIDS go through the different stages of emotional turmoil (i) denial, (ii) blaming, (iii) bargaining, and (iv) acceptance. How individuals go through these stages can vary, and can depend on how soon each client is willing and ready to look for help. (7) Devise specific information and education strategies on HIV/AIDS prevention. Information on HIV/AIDS keeps changing, so it is necessary for CASP to revise its pamphlets to conform to the most recent information. (8) Cooperate with the government and non-government, national and international organizations. CASP works closely with drug rehabilita-

tion centers, prisons, the Welfare Department, and government hospitals, particularly, helping them to find suitable foster parents for abandoned babies who are HIV+. CASP helps other NGOs in providing HIV/AIDS awareness events, workshops and talks. There are certain areas where government bodies are reluctant to discuss issues related to sexuality, such as the use of condoms. As a non-government organization, CASP tries to fulfill this unmet need. (9) Promote Malaysian strategies on HIV/ AIDS to be fully consonant with international efforts. CASP fully supports the nations wish to strengthen family and moral values when educating the community with HIV/AIDS. However, when working with IV drug users or with sex workers, it would take years to educate these groups about good family values. The CASP volunteers learn to accept that these clients may not be able to change their undesirable behavior, but the center at least tries to concentrate on how it can stop them from spreading the

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virus to others. In helping IV drug users, volunteers teach them about using clean needles and advocate the use of condoms to both IV drug users and sex workers. (10) Work against the stigmatization of and discrimination against PLWAs and persons living and/or associated with them. HIV/AIDS is an epidemic of stigma. HIV/ AIDS is stigmatized because (a) it is a disease first associated with so-called undesirable groups, (b) it is a sexually transmitted disease, (c) there is a strong phobia of contagion, and (d) HIV/AIDS is terminal. CASP educates the public through the mass media and with training about HIV/ AIDS. This has not been an easy job simply because personal factors are rooted deep in the human psyche. Sexuality, culture, identity, habitual behaviors, religious beliefs and moral judgment sometimes become major obstacles in changing the communitys perceptions of AIDS. (11) Uphold the right of PLWAs to employment, housing, insurance and all other basic human rights.

As an organization, CASP is involved with MAC in drawing up a charter of rights for PLWAs. (12) Facilitate shelters and other forms of support services for PLWAs. CASP has a buddy program in which volunteers provide emotional support and social support to PLWAs who are in hospitals or at home. Volunteers in the buddy program visit patients in the hospital and homes and attend to their needs. (13) Recruit and train volunteers. Every now and then, CASP provides basic HIV/AIDS training and counseling for volunteers and the general public. Searching for new volunteers is done through local newspapers and through community outreach. CASPs volunteers themselves are encouraged to introduce potential members to the organization. (14) Raise funds through grants and donations and other activities.

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The Ministry of Health and MAC support many of CASPs community services. However this is not enough to support our two full time workers and office expenses. Thus, a few big fund raising activities are held each year in order to meet this need.

CONCLUSION
NGOs are the first to respond when it comes to fulfilling the unmet needs of PLWAs and their families. As an organization CASP believes it has a role to play in linking clients with other services they are often unaware of. CASP also

believes that by providing social services to PLWAs through an informal approach it will encourage people with HIV/AIDS to come forward for help. As a community-based social support system, CASP tries to engage members of the community in a search for better ways of dealing with HIV/AIDS. By doing this the community will see that HIV/AIDS is not only the job of the government or other NGOs but it is their responsibility as well. By allowing them to be part of the HIV/AIDS intervention group and through the informal approach to problem solving, this can heighten the psychological well-being of the community itself.

REFERENCES
Green, G. (1994). Social Support and HIV: A Review. In Bor, R . and Elford, J. (eds.), The Family and HIV. Cassell: New York, pp. 79-97. Hart, G., Fitzpatrik, R., McLean, J., Dawson, J. and Boulton, M. (1994). Gay men and social support and HIV disease: A study of social integration in the gay community. In Bor & Elford, op. cit., pp. 110-117. Klosinki, L.E. (1992). AIDS Education and Primary Prevention. In Land, H. (ed.). A Psychosocial Guide to Psychosocial Intervention. Wisconsin: Family Service America, Inc.

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McCann, K. and Wadsworth, E. (1994). The role of informal carers in supporting gay men with HIV-related illness: What do they do and what are their needs? In Bor & Elford, op. cit., pp. 118-128. National Research Council. (1990). AIDS: The Second Decade. Washington, D.C.: National Academy Press. Seeley, J., Kajura, E., Bachengana, C., Okongo, M., Wagner, U. and Mulder. (1994). The extended family and support for people with AIDS in a rural population in South west Uganda: a safety net with holes? In Bor & Elford, op. cit., pp. 141-150.

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KNOWLWDGE AND PERCEPTION OF HIV/AIDS AMONG THE PUBLIC AND TEACHER-TRAINEES

Haliza Mohd. Riji 22 and Mohd. Sukur Seman 23

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INTRODUCTION
In 1998, the Division of Social and Behavioral Research at the Institute for Medical Research, Kuala Lumpur undertook a two-year socio-behavioral study of HIV-positive prison inmates in Malaysia. The objectives of this study were to characterize personal backgrounds including childhood and family experiences, drug and sexual history, life in prison and future intentions. Key factors associated with drug and

22 23

Principal Investigator in the research. Research assistant in the project.

sexual activities included personal and family problems, their ambient environment. It appeared that during adolescence they had little awareness of what can be called risk-behavior. Perhaps the only matter clear to them then was that they could cope with their lives and forget their problems through drugs. One could sense that there was much naivet about disease. Their ignorance about HIV/AIDS could plausibly be explained by the fact that HIV/AIDS was unheard of until the first public confirmations in 1986. There existed at least a decade between increased drug use and the arrival of this new disease with its transmission through sexual contact with infected persons and drug injec-

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tion with shared contaminated needles. Given the lack of knowledge and awareness in their larger social environment before their prison entry, it was decided to do a project on HIV/ AIDS knowledge and attitudes with the public and from teacher trainees (TT). The data resulting could then be compared with that from HIVpositive prison inmates. Samples from the public were chosen from communities near the prisons in the study and similarly from teaching colleges in those state districts, using the prisons as reference points within the larger social environment. The main objectives of this research were to assess the level of knowledge and the perceptions held by the public and teacher trainees about HIV/ AIDS, its transmission and its prevention. This paper discusses the results obtained by face-toface interviews with 616 respondents comprising this public sampling and with 713 teachertrainees, or 1329 including all respondents.

METHODOLOGY
It is generally assumed that the lay public is less knowledgeable about scientific information and hence less concerned with issues relating to transmission and prevention. Public lack of

awareness is also understandable if there is lack of exposure to messages about HIV/AIDS. HIV and AIDS are terms that are easy to pronounce but conceptually hard to understand. Some health providers are of the opinion that adequate health information has been disseminated to the public through mass media and specific activities designed to increase the awareness level of the public. In fact, 1992 was marked for health promotion activities related to STD (sexually transmitted diseases) including HIV/AIDS. Throughout the year, campaigns were carried out at public places and institutions and numerous posters and leaflets were distributed. Television channels and newspapers frequently presented facts and figures about these infections. It is usually presumed or assumed that those who have more formal education know more about these diseases than the less educated, and thus may be expected to be more concerned about issues of public health. This educated group is expected to understand facts better, and can be a source for educational activities aimed at preventive behavior. Based on the assumption that persons with secondary and tertiary levels of education are more knowledgeable about STD and HIV/AIDS and probably less prejudiced toward HIV-positives, TT were

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selected for comparison with individuals from communities near the prisons which housed the HIV-positive inmates. Over the six-month period during which the prisons studies were conducted, two community studies were done in the districts of Marang in Terengganu state and Kota Bharu in Kelantan state. These were taken as the East Coast Group (ECG) while two communities each from Taiping, Perak and Pulau Pinang and Butterworth comprised the West Coast Group (WCG). Teacher-trainees in their first to fifth semesters in teacher colleges in Kuala Terengganu, Kota Bharu, Pulau Pinang and Ipoh were randomly selected from the college student registers. Sets of self-administered questionnaires were distributed and completed during sessions organized by the staff. For the public responses, a sample of communities within a 20 km radius of the particular study prisons was made. At least one person 15 years old was also selected from each sample household and interviewed by the field researcher. The resulting

data from each set of responses for WCG and ECG were analyzed using SPSS software.

RESULTS FROM THE PUBLIC INTERVIEWS

In terms of ethnic composition, 89.9% of the Public ECG (PECG) and 74.5% of the Public WCG (PWCG) were Malay, reflecting the demographic structures of these areas. The age cohorts of the samples are given in Table 1. The public sample includes 616 individuals. Given the high variability in some of the responses, their overlap at times and the uncertainty factor in some even though they were specific, some responses are rounded off to the nearest whole number for accessibility and clarity. This is also done for the TT groups where appropriate or necessary. 51.1% of the PECG and 53.7% of the PWCG were male, and 48.9% and 46.3% were female respectively.

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Table 1. Age Cohorts of the Public Samples, ECG and WCG, by Percentage, n=616
Ages 15-19 20-39 40-59 60+ PECG 10 44 36 10 PWCG 2 51 34 13

Table 2. Recognition of HIV, by Groups, by Percentage

Response Yes No Uncertain (no response) PECG 81.1 0.7 3.6 (14.6) PWCG 91.3 1.3 6.5 (0.9)

Awareness and Opinions of HIV/AIDS

Respondents were asked if they recognized or were aware of HIV, and their responses are given in Table 2. They were then asked for their opinions about the severity of HIV/AIDS, responses given in Table 3. Some respondents tended to use AIDS as their primary term in interviews and regard to the term AIDS, 96.0% of PECG and 96.0% of PWCG recognized and associated it with the disease. 87.3% of PECG and 83.2% of PWCG thought HIV/ AIDS was contagious, and 79.8% and 81.8% respectively had great fear of it.

Table 3. Opinions about the Severity of HIV/AIDS, by Groups, by Percentage

Opinion fatal very dangerous dangerous not dangerous uncertain other (no response) PECG 9.8 80.8 6.8 0.3 0.7 1.6 PWCG 19.4 59.2 13.3 1.3 1.9 1.9 (3.0)

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Opinions were also asked about respondents felt reactions to and about HIV-positive persons.

These responses are given in Table 4, and cover a wide range of perspectives and directions.

Table 4. Reactions to HIV-Positive Persons, by groups, by Percentage

Response sympathy fear hate neutral see it as a sin keep them separate see them as humiliated give them advice (counseling) (no response) PECG 28.7 16.6 14.3 12.1 6.2 4.6 3.3 7.5 (6.8) PWCG 28.5 9.1 9.1 25.2 7.1 (13.6)

RESULTS FROM THE TEACHER-TRAINEES INTERVIEWS

These groups included 713 individuals, of whom 461 were female and 252 were male, with a Fe-

male/Male ratio of 1.83:1. TECG was 59.9% female and 40.1% male, and TWCG 69.6% female and 30.4% male.. Both groups were modal in the 21-25 year old cohort (55% of TWCG and 50% of TECG). Ethnic distribution is shown in Table 5.

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Table 5. Ethic Distribution of TeacherTrainee Respondents, by Groups, by Percentage (n=713)

Ethnicity Malay Chinese Indian other TECG 94.1 1.7 2.8 1.4 TWCG 70.4 18.2 10.0 1.4

Table 6. Teacher-Trainee Knowledge of HIV/AIDS Transmission Modes, by Groups, by Percentage

Number of Modes Known at least three ways four ways more than four ways less than three ways TECG 44.3 34.1 12.4 4.4 4.8 TWG 41.0 37.0 15.7 3.0 3.3

Knowledge of Modes of Transmissions for HIV/AIDS

Trainees were asked if they knew at least three ways that HIV/AIDS is transmitted. These included multiple sex partners, sharing infected needles for drugs, and infection of babies through infected mothers. A majority of both groups knew of at least three ways, and the responses are given in Table 6.

Do not know

As with the PECG and PWCG, the trainee sample was asked about its general views about HIV-infected persons. The results are given in Table 7.

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Table 7. Teacher-Trainee Reactions to HIV-Positive Persons, by Groups, by Percentage

Response sympathy fear hate neutral uncertain dislike anger give them advice (counseling) TECG 64.7 5.6 3.1 5.0 12.7 5.0 0.8 3.1 TWCG 70.1 2.2 2.2 8.7 10.6 3.1 3.1

more rural, traditional and less urbanized way of life. However, there was far less sympathy toward HIV-positives in both public groups than with the Teacher-Trainees (28% on average versus 65/70%), and the relative percentage of response from the East Coast TT groups was also lower. Furthermore, stronger emotional responses like fear and hatred were higher in the less-educated and East Coast Groups. This appears to confirm the position that more education and knowledge affect the perception and response to HIV/AIDS positively, i.e. constructively. This is a further call for more and better HIV/AIDS education of the public. The less educated and informed have positions they take on the disease, but they need more information to help make this public health threat a controllable entity for the nation overall.

CONCLUSIONS
From this relatively simple study of 1329 people representing a sample of the public and a sample of a more educated professional sector, it can be seen that there are major differences between the Public East Coast Groups and the Public West Coast Groups in terms of their general knowledge, which is lower in the East Coast. This is not unexpected, given their relatively

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NEW VULNERABILITIES AND NEED FOR AN HIV/AIDS INFORMATION SYSTEM

Azizah Hamzah 24

16

INTRODUCTION
Bearing in mind that Malaysia gained its independence only in 1957 and formed the federation as recently as 1963, the economic progress achieved by the 1970s and 1980s is seen as something of a miracle. Malaysia had remained focused on its path towards progress and prosperity and continues to parallel the development success of other East Asian nations, especially Japan, Taiwan, and South Korea and its close neighbours Singapore and Thailand.

24

Asso. Prof. Dr Azizah Hamzah is Head of Department of Media Studies, University of Malaya, 50603, Kuala Lumpur.

The economic progress during those decades of long economic boom also meant that the number of Malaysians moving into a new middle class and a new way of life keeps growing in size and importance. This growth in economic status and per capita income has encouraged Malaysians to be more directly responsible for their own wellbeing, education and health. However, Malaysians may be growing relatively wealthier in terms of income yet remain deeply rooted in their traditions and values. Like their Asian neighbours, Malaysians have retained their strong cultural roots, sense of history and traditions. If anything, traditional Asian families have been the backbone of society. In this sense, Asians tend to particularly fend for their own families. A concept of selfreliance is understood by the Asian psyche, and the lifestyle of a welfare state is something not much heard about or emulated. The family is

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the basic unit of society and the family provides support and security. Malaysians generally do not expect the government to pay for every aspect of their needs, their lives and their emergencies.

The Emergence and Context of New Vulnerabilities

As mentioned above, the Malaysian economy and society went through rapid transformations during the 70s, 80s and 90s. Increasing affluence and urbanisation, travelling abroad for pleasure and study and other exposures and interactions not only offer more choices and changing lifestyles, but also bring new challenges and vulnerabilities. As Malaysia becomes more economically developed, population mobility also increases and at the same time, diseases cross international borders and move through risk groups in greater numbers, causing wider infection. One such disease problem that was totally unexpected and now proves difficult to handle is HIV/AIDS. In this disease, there was a particular lack of prior knowledge and experience which meant that no one had any idea of or had ever been exposed to it, not health practitioners, social workers, educators nor media practitioners nor government and non-

governmental organisations. There was truly no anticipation at the start and little or no understanding during the build-up of the problem. In Malaysia, the first encounter with AIDS occurred in late 1986, detected in the case of a Malaysian-born American resident who was on a social visit (UKM Community Health AIDS Homepage). In the same year, four HIV and one AIDS case was reported. By 1996, there were 15,471 reported HIV infections and 388 cases of full-blown AIDS. A researcher in the University of Malayas Medical Centre (BBC, 14 Oct. 2000) reported that there were between 360 and 400 new patients diagnosed with HIV every month in Malaysia. In what appears to be the latest report on the situation, the Malaysian AIDS Council president, Datin Paduka Marina Mahathir reported that an estimated 5,000 new HIV cases are recorded annually and the cumulative number of cases by 2001 was about 45,000 (The Sunday Star, 3 March, 2002). As in many parts of South East Asia, the major transmission mode of HIV in Malaysia is by intravenous drug abuse, sexual transmission, from infected mother to child and via blood and blood products transfer.

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Asia Source (February 21, 2002) reported that at the end of 2001, 7.1 million adults and children in the Asia Pacific region are expected to be infected, of whom 6.1 million are in South and Southeast Asia.The World Health Organisation (WHO) also reports that more than 95% of all HIV-infected people now live in the developing world. The HIV/AIDS epidemic in Asia is thus growing ever greater and presents a compelling challenge for health practitioners, media communicators and social workers. In the Malaysian instance, health care and public wellbeing are amongst our greatest concerns. Thus promoting informatization about the HIV/ AIDS epidemic is an important function of our new information technology society. Consequently, efforts to promote HIV/AIDS communication and information systemization should be encouraged in line with the sound development of national health care and welfare services. The important requirements in achieving these aspirations seem to be the defining of a main stream for public education and meaningful research on ways of prevention. In other words, there is need for a vision of the ideal information systems for local health care, medication and welfare which is useful to all Malaysian citizens.

However, as mentioned earlier, religious and cultural issues surround the problem. Malaysian society in general associates the disease with homosexual lifestyles and intravenous drug taking and sharing. Therefore it is seen as an affliction confined to high risk groups such as injecting drug users (IDUs), homosexuals, men who have sex with men (MSM), sex workers and their solicitors. They do not see the disease spreading among the general population. It is hardly surprising then that Malaysian society disapproves of and rejects HIV/AIDS sufferers. Often they are shunned by family members who themselves are traumatised by guilt and shame and are not prepared for the economic and psychological demands of dealing with HIV/AIDS sufferers. As such, people living with the virus face continual marginalisation and discrimination. These are the barriers that obstruct awareness of HIV/AIDS and prevent effective intervention programmes. But the epidemic in Asia is growing greater all the time, putting other people at risk for infection including monogamous married women, pregnant women and their babies. It is evident that major efforts must be taken to find ways of prevention that override these cultural, economic and political aspects.

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Trends in Media and Information Systems for the Community

It has been stated that if AIDS is to be defeated in Asia, governments and agencies need to work towards breaking down the cultural and religious taboos surrounding the discussion of sexual practices and condom use (BBC, 14 Oct, 2002). Realising the need to improve the HIV/AIDS literacy and get information across means that the crucial first step should be focused on research about the knowledge, attitudes and practices of the target audiences. It is important that AIDS communication procedures and manuals provide realistic and practical problemsolving ideas for improving national HIV/AIDS literacy and communication. Implementing a full program for HIV/ AIDS informatization is an important element in an advancing information society such as Malaysia intends to be. The primary intention here is to provide information and raise awareness that will bring about positive changes in attitudes and behavior. In other words, this implies a vision of an ideal information system providing the following (Adam and Harford 1999): Information about HIV/AIDS: facts and figures;

Information about target audience, especially their knowledge, perceptions and behavior concerning HIV/AIDS; Information about other organisations providing HIV/AIDS education and related products and services.

At the same time, information about the HIV/ AIDS issue should include: Causes, symptoms and preventive measures which are updated and accurate; Statistical data on the incidence of HIV/ AIDS by socio-economic factors, geographical location, gender, age, and ethnicity; Material on all local campaigns by all agencies.

Similarly, research on the knowledge, attitudes and practices of target audiences will provide information on: Gaps in knowledge; Attitudes relating to HIV/AIDS issues; Misconceptions, taboos, fears and prejudices associated with HIV/AIDS; Barriers that prevent people from acting on

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information and health education, such as finances, religion, gender, culture, the availability, accessibility and acceptability of health services and the attitudes of health workers. This information system should remain focused on people or users and pay attention to their changing needs, because they are the targeted receivers of services. It also includes another important goal, achieving and promoting collaboration in the healthcare and welfare services and sharing the connectivity and compatibility of relevant information. Linkages between different systems offer a common base which ultimately should meet the diversified needs of users. Another function is linking and cooperating with the government, NGOs, industry and academic researchers. It is important for these groups to work together in focus on the needs of both patients and care providers. Information technology is undergoing wave after wave of innovations such as networking and multimedia. The mass media helps to orient the thinking of citizens amongst the cultural, social and political agendas of other countries. HIV/AIDS activists have learned to engage the media in order to ensure the success

of HIV/AIDS communication and campaigns. Print and broadcast media, especially television and radio are effective channels for information, soliciting support for changes in national attitudes. The strategies of the Malaysian mass media have contributed significantly in bringing HIV/AIDS to the nations attention by access to information about the affliction. In other words, a further role of the media is to mobilise public opinion in support of the cause and struggle to eliminate ignorance of the spread of HIV/AIDS. One approach using the mass media is popular and professional theatre as distinguished in the Blair, Valadez and Falkland report (1999). The report observed that these forms of entertainment can be an effective tool in changing behavior as well as knowledge and attitudes. Mass media of this type are engaged in activities involving information, education and communication (IEC), and theatre is one effective means of presenting role models that foster behavior change (Piowtrow et al., 1994 cited in Blair et al., 1999). One could easily transpose this format into the popular television drama slots of our local stations. Since audience ratings are high during these programmes, social messages on the subject can be utilized to increase awareness, provide information and linkages and

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stimulate interpersonal communication after viewing. These messages, perhaps even subliminal ones, about the practice of safe sexual behavior and health education should take precedent above all messages. As a matter of fact, earlier dissemination of HIV prevention was mainly information-based, and sought to fulfil the immediate need for educational campaigns about high risk and preventive behaviour. Malaysia has since adopted the Development Communication approach aimed at increasing the knowledge of Malaysians, using in particular posters, television, radio and drama series in multimedia channels. The task as seen is mainly to develop and increase awareness, motivate behavior change and develop interventions. Progress in information processing technology has been considerable, and the latest in Information Technology (IT) should be integrated to meet the objectives of disseminating HIV/AIDS information to the general public. In other words, development of new social systems and structures of informatization are to be shared by the total population. The functional requirements for this information system would include the following:

1.

Provide information and support for HIV/ AIDS health care manpower. All data and activities should be recorded in the database and made available, thus enabling access to manage resources more effectively. Academic research output should be included. All would have access to the latest information, and the Ministry of Health providing fully-detailed medical information on the subjects. Provide support to improve the quality of life for the HIV/AIDS inflicted and those providing care for them. The shared database above will work to close the knowledge and communication divide between both groups of people. Ensure that the database will provide interconnectivity, can be used by all and will help to link care providers in the rural and remote and areas. Finally, IT should provide its latest services to facilitate remote and home care medical services, especially for the HIV/AIDS environment now in Malaysia. More importantly, information systems should

2.

3.

4.

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provide their newest services, information, products and report changes in the environment. Thus, important features here are hyperlinks and information-sharing with organisations on the global network. The Internet and WWW should be utilized to the fullest in order to network, participate and empower the system and its users. The Prime Minister of Malaysias vision of a digital society is a good example of how the digital world has become indispensable to the media, and to medical practitioners and healthcare workers. Millions of messages criss-cross today between global networks, and one can imagine the effectiveness of networking between global systems involved in the management of HIV/ AIDS. His vision of telemedicine as part of the health communication is one of several such initiatives already in operation.

Information System Trends in HIV/ AIDS Communication

We need to strengthen HIV/AIDS activism in Malaysia. During the past decade more medical and healthcare professionals used the Internet and WWW to widen their scope of learning and to connect with whoever wanted to share educational resources and information

worldwide. Thus the personal computer, digital media, the Internet and the new media technologies have penetrated many sectors of our society. These will continue to assist medical practitioners, health care personnel and health care communicators to compile information resource centres or HIV/AIDS portals that will provide crucial information within and outside of the community. There are now a number of international projects by special agencies at both international and local levels. For example, Adam and Harford (1999) of the Joint United Nations Programme on HIV/AIDS and Media Action International have produced a handbook for radio practitioners, health workers and donors that provides a useful guide for Third World health and media communicators. Other examples are the Asia Pacific Council of AIDS Service Organisation (APCASO) and Asia Source. Some useful links for HIV/AIDS communication in Malaysia are the web sites of the National University of Malaysia Community Health (UKM), the Malaysian AIDS Council, the Asia Pacific Resource and Research Centre for Women (ARROW), the Ministry of Health Malaysia, NTC AIDS Service Centre and Pink Triangle Malaysia.

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CONCLUSION
There is a real need for strong commitment by all sectors, from government to local organisations, to monitor HIV/AIDS awareness activities and provide monitoring, follow-ups and refresher courses. Of particular importance, funding is always needed for HIV/AIDS support groups. The key to local efforts in development communication is to train medical, health care and media practitioners to acquire those skills involved in changing attitudes and behavior. The World Bank has granted USD 500 million to fight AIDS in Africa and another USD one billion has been approved for a dozen subSaharan countries (BBC, 8 Feb. 2002). This is to help these African countries in which some 18 million lives have already been lost to the

HIV/AIDS epidemic. Given the importance of IT for HIV/AIDS programs, it is interesting that the head of Microsoft, an IT giant itself, lamented that A vaccine is the only way to end AIDS for all time and pledged almost USD 100 million to search for it (Bill Gates, The Observer, 27 June 2001). Let us hope for this miracle, which will also require the new IT systems for its implementation and success, to happen soon. In the meantime the media should be continuously engaged and encouraged to conduct proactive media campaigns, design and implement strategies. AIDS support groups must train communicators and facilitators to present their case effectively. They must also consistently communicate with the media and push across messages to gain acceptance and assistance from the public.

REFERENCES
Adam, G. and Harford, N. (1999). Radio and HIV/AIDS: Making a Difference. Inverness: UNAIDS and Media Action International. AsiaSource: AsiaTODAY. (21 February 2002). http://www:asiasource.org./news.

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Blair, C., Valadez, J.J. and Falkland, J. (1999). The Use of Professional Theatre for Health Promotion Including HIV/AIDS. Journal of Development Communication, No.1, Vol. 10, June 1999, pp. 9-15. BBC News, (14 October 2002). <http://news.bbc.co.uk>. Marina Mahathir. The Star. (3 March 2002). p. 8. UKM Community Health AIDS. http://www.commhlth.medic.ukm.my/aids.htm BBC. (8 Feb. 2002). http://news.bbc.co.uk/ The Observer. (27 June 2001). http://observer.co.uk/

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THE CHALLENGES OF HIV/AIDS AND STIGMA

K. J. Pataki-Schweizer

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INTRODUCTION
I wish to discuss a major concept whose time has definitely come. Dr. Warapak in her paper in this monograph uses the phrase, mankinds behavior. In the vast and often disrupted realm of human behavior, there are many apparent contradictions: true and false, good and bad, moral and immoral, right and wrong. Some would see these as merely relative, others as contradictions requiring synthesis (in a Marxian sense); still others as religious and philosophical issues. For our purposes here, I see them as evoking a concept that rules much of our behavior when it involves illness, health and overall, life. This concept is stigma. A number of years ago, 20 to be exact, I attended a WHO workshop in Malaysia on

leprosy transmission. We didnt know much about it then and we dont know very much more now, despite research and improved medications. During this workshop, I had the opportunity to be rapporteur of a session on the social aspects of leprosy. After much effort, we finally focused on stigma as a critical and littleunderstood process in health that was vitally linked to human society. The word, stigma, comes by way of Latin from the classical Greek, stizo, to prick or brand. It has several meanings in English, including bodily marks or wounds (such as the stigmata of Christ) attributed to divine sources, someone with whom we are told we must not associate, or the exclusion or forcible separation of a group of people from the body politic. And so we stigmatize (from stigmatizo) someone or some group and those excluded, the stigmatized, generate in us a

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morbid fascination and abhorrence. But the word can also mean a situation in which a person is excluded or shunned because they have some grave infectious disease that others do not have. Such diseases include elephantiasis, leprosy, schizophrenia, syphilis, tuberculosis and now HIVAIDS. Perhaps the most extreme stigma of all for us today lies in HIV/AIDS. It is contagious, it is modern, it has a longish lead-time to develop, and it is incurable which can generate major psychological problems. I say this because once you have the virus and are declared positive, you have entered a terribly exotic club from which you can check out any time you like, but you can never leave (Frey & Henley, 1976). And so it is high time, in fact overdue that we pay very close attention to stigma as a part of HIV/AIDS and its related health status (or, lack of it.) In the leprosy workshop I mentioned, we recommended that specific research be directed at stigma, because we had concluded after much discussion that stigma operated in a very profound and functional way in the status morbidus, the full illness situation, of a leprosy patient. (One could in fact now assert that all situations of illness involve some

sort or degree of stigmatization.) Nothing came of this recommendation, however, perhaps (with hindsight) because there was then presumed to be a great and inevitable disjunction between illness (i.e., medicine) and its social context. This certainly is not the case now, and we have at least achieved that step forward (Haliza and Pataki-Schweizer, 2001)

STIGMA AND THE HUMAN CONDITION

I would like to push the concept of stigma a bit further, insofar as it has received far less emphasis in the social (behavioral) sciences than it deserves. One of the absolute basics of human interaction is the exchange of items, gestures, responses and the like. I am referring to the principle of reciprocity, which was noted and succinctly discussed at the turn of the 20th century by the French anthropologistsociologist, Marcel Mauss. We do it all the time and barely think about it until, for example, Christmas or Hari Raya approach and the pressure for gifts becomes manifest, or if we forget to stand for a national anthem or when a person of high status arrives. One characteristic of reciprocity is that it requires presenting some

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sort of appropriately valued item or act to the Relevant Other or Others, i.e. a gift, a salute, a sign or icon of some recognized value or significance. Underlying this is the need for social balance, stability in new situations, mutual recognition, respect for the social persona and the like. I will not elaborate on these here, but simply state that as we have reciprocity in the including sense, so do we have stigma in the excluding sense. In other words, each is the reciprocal of the other. What is a reciprocal? The dictionary says it means an inverse relation, a situation in which one thing is the reverse of the other, a necessary contrast with the other. The now-familiar contrasting dyad of Yin and Yang from the Chinese tradition (and their medical system) is an example. We might also include the dyads I mentioned above, although they are more abstract yet still critical pairs. What I am saying is that stigma is part of the human condition, as is reciprocity, and the two are perversely linked. One could even view stigma as a negative reciprocity within the overarching reason of social stability, in that one group assigns exclusion and the other group, the stigmatized, then behaves this exclusion in response. This relation gives us a focus to develop,

since both stigma and reciprocity involve behavior. Evolutionary spans of time have had their effect on the human genome and its expressions, since we certainly are genetically coded for a variety of basic human behaviors such as avoidance (e.g., stigma), aggression, love, fear and the fight or flight reaction. Avoidance for selfand group protection is a good example. An ethnographic extreme of it was the excluded situation of the untouchable people in the caste system of India, despite its formal ending by Indias constitution. Mahatma Gandhis redefining of the untouchables as children of God brought about a radical shift which initiated a profound and resonant social transformation for these stigmatized people. Stigma is eminently cultural in the sense that it is culturally coded, learned and valued. This conditioning starts in the earliest years and is imbedded in our psyches. There are great variations in it, i.e. the nearly-universal stigma of leprotic lesions, the grotesquely swollen legs of elephantiasis (filariasis), the brand on the foreheads of women signifying adultery or on slaves for ownership, the loss of a hand for theft, being a known drug addict, homosexuality, and now the stigma of being

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identified as HIV-positive as earlier with alcoholism. It is also significant that stigma may involve different time frames and can be temporary or permanent. We are dealing here with the starkness of permanent stigma (HIV/AIDS, deformity, race), while noting that intermittent states also can exist as well as para-stigmatic ones, e.g. a person who had leprosy and is cured, a condemned person who is pardoned, or a felon who becomes a priest. Table 1 gives some basic categories and types of stigma.

substance: alcoholism, drug addiction, bulemia, anorexia duration: (initial, intermittent, permanent, temporary, terminal) Simply put, there are biopsychocultural factors in the negation of person that stigma brings upon the stigmatized. Since there are, we can find resolutions for them and their sociocultural sanctions, as we did for the formerly extreme stigma of alcoholism. In this expanded sense of behavior and its geneses, the near-Herculean generalities in Dr. Warapaks paper with its overtones of frustration and anguish are understandable, necessary and hardly extreme. We are so deeply coded in our behavioral response to stigma and against those stigmatized that it takes great awareness and even greater effort to change, individually and collectively. Often this is done by grim determination or the acute need to face ones own reality. Medical and health personnel dealing with full-blown AIDS, working in Intensive Care Wards or giving therapy, social workers and those dealing with loved ones can do it. Most others find it so stressful as to be nearly impossible (or so they have been conditioned to think).

CATEGORIES AND EXAMPLES OF STIGMA

behavioral: anorexia, eccentricity, homosexuality, para-suicide biological: deformity, exudate, menstruation, obesity, smell, stigmata cultural: ethnicity, language, race, ritual, uncleanliness disease: cancer, filariasis, HIV/AIDS, leprosy, syphilis, tuberculosis psychological: bodily disfigurement, deviancy, mental illness, retardation societal: homelessness, poverty, bankruptcy, divorce, prostitution, prison, youth, old age

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STIGMA AND SOCIAL EXCLUSION

Collectively, stigma is a major challenge Herculean, indeedand it is something that we now have to face. It is also linked to sexism (theyre that way, you cant change it) and physiological functions such as menstruation (in many tribal societies women were/are confined themselves to small closed huts and did not come out during their periods), racism (again, thats the way they are), prejudice (and yet again, they just are that way they believe(or dont believe)this or that). In the world of stigma, seemingly everything stigmatized is so because that is just the way it is. Ironically, this also describes the nature of the world we live and die in: it is real, we cannot avoid it, and we are compelled to confront (or, avoid) the way of the world. We can more or less accommodate certain aspects of stigma, at least some of us. Many others experience automatic and intense feelings of threat, anxiety, and also a sense of anticipatory loss. I recall visiting a former leper colony in Hawaii, now a eerie sort of quasi-museum with its artifacts, still isolated and tended by some of

those who were cured of this disease. (Note: a disease, which turned out to be curable.) I also recall visiting a similar setting on a very small set of islands in the south coast of Papua New Guinea, once operated by the colonial administration as colonial administrations did in many parts of the world then, since isolation was seen as the only way to contain the disease. Again, not a spiritual blot radiating from the souls of those affected, but a disease with its etiological causes and epidemiological effects. At that time, the disease (leprosy) also represented a stage of ignorance about it and related responses to it, as is the case for us with HIV/AIDS now. Sigma has been the subject of much investigation and research as a social, psychological and medical phenomenon. Erving Goffman, the prominent sociologist, wrote a small classic on stigma viewing it in terms of spoiled identity (1963). More recently, Heatherton et al. have given useful summaries of various areas and perspectives in the social psychology of stigma (2000), including the development of stigma from a perception to a consensual (social) recognition with associated rationales. Ruzek et al. provide

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discussions of HIV/AIDS including the effects of stigma in relation to womens health (1997), and Geballe et al. similarly for children affected by HIV/AIDS (1995). In these analyses, stigma is seen as a biocultural entity since it involves both the human body and human groups, makes distinctions about what is normal and what is abnormal, and includes social justifications or rationales. There is a further perverse aspect of stigma stemming from the reciprocity discussed above, in that our impression of ourselves and our behavior depends in part on the views and responses of others, often to a great deal. That is, we may see ourselves as reciprocals of others, for example in the identification and attention given to parents and to performing artists. This mirror effect can be enormously complicated since our self-impression through someone else can in turn lead to further reflections between them and us, and so on down an infinitude of selves and interpretive possibilities, a hall of mirrors (Read 1980). In the case of stigma, the reactions become exponentially intense and disjunctive if not unpredictable (e.g., the Hunchback of Notre Dame), for both we and the negated Other are human, alive and interactive.

I make these comments about stigma since i) the public health implications of situation of HIV/AIDS and related aspects (sex, drugs, needle-sharing) demand it; ii) the concept applies to other areas of contemporary life and social friction; iii) it is high time for newer paradigms, since the older ones are overburdened and sagging if not crystallized and cracking (Pataki-Schweizer 1998) and iv) this does not mean we must change the values of our lives in their deeper aspects. Rather, we need to make a good reality check on the tools, techniques, services, systems and organizations we are using to deal with the immediate health problem of HIV/AIDS and other stigma-related diseases, both infectious and noninfectious. We need to give a real priority to educating about these matters, which are integral parts of health behavior and health education, as evinced in the changes of attitude about alcoholism. Using newer terminology, emergent diseases such as cancer, diabetes, cardiovascular disease and HIV/AIDS and re-emergent diseases such as dengue, tuberculosis, and sexually transmitted diseases (STDs) in their virulent drugresistant forms are intimately with us now, some with a heavy burden of stigma. These are large issues and they require large solutions, as Dr. Warapak asserts.

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SOME META-DYNAMICS OF STIGMA

We may push even further into the arcana of stigma. Stigma not only refers to specific stigmatic symptoms or states; it also evokes a metamessage with associated feelings of intense threat and anxiety that go beyond normal heuristic issues including health and competition. This meta-level involves a contingent evocation and apprehension of existential uncertainty, human transience and finitude, of horror versus beauty, of death versus life. The stigmata themselves operate at more specific levels of phenomena and reality, yet stigma as such while holding us grimly fixed on its expressions or subjects, also potentiates an awareness of total or irreversible change and loss and becomes an icon for them. This is why stigma is so powerful, whereas its specifics including stigmata, the stigmatized, the stigmatizer, social responses, prejudice, exclusion, etc. are characteristics with associated medial or middle-range dynamics that can be addressed, modified and changed. Thus it is not the disease or mark that is stigma, but its coterminous liminal quality that evokes and implies irreversible loss, death and

seemingly impossible transcendence. In its evident distortions that threaten and intimidate if not terrify us, stigma is a dramatic perceptual sign of specific icons evoking a psychological confrontation to the self. Stigma has the power of a great symphony or sunset, a great musician or actor, a disaster or catastrophe (e.g. the Trade Towers and 9/11); and it perversely does this in an entropic and negating context allowing no escape. For most humans, these evocations through stigmatized persons who are clearly alive and human are strongest for major physical deformities, carriers of life-threatening diseases, repetitive extreme behavior, and the contrastive appearance (e.g., race, pigmentation, desuetude) of persons which is taken as some alien Otherness and stigmatized by social consensus. The specifics of stigma can differ in degree and are expressed in a variety of physical and sociocultural modes, but the meta-level does not. In this sense, all societies have or recognize stigma but handle it in different ways and at different levels of reification and intensity. In fact, different cultures can and do make exceptions, e.g. about retardation, insanity, homosexuality and bisexuality, and drug use and even may evoke them on ritual occasions, i.e. towards the transcendental. Thus stigma, which is

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panhuman, is also a reciprocal of transcendence.

CONCLUSION
The solution to the specific and grave social problems, injustices and inequities that stigma creates is to realize its commonality, its overarching reasons for existing, and the happenstance victimization of those stigmatized whether unwittingly, by their actions or by their very existence. With respect to HIV/AIDS and other diseases, there is immediate and ineluctable need to publicize and educate on these issues, in culturally acceptable ways that demystify its specific stigmata and render them as simply other parts of the world we live in. The results would also clearly benefit other

issues such as economic, political and sexual exploitation. This takes time, you say, and I say that it also takes personal willingness, professional commitment and political will. But our time available is finite, certainly for those with HIV/AIDS. I am reminded here of the response of the legendary economist John Maynard Keynes when he was asked about the implications of an issue in the long run: In the long run, he replied, we are all dead. His meaning and our challenge are to do something relevant in the shorter run for a world in which avoidance is far easier than amelioration. Dealing with HIV/AIDS and in effect, other issues by attending to stigma is an order of the day. The global day. This global day.

REFERENCES
Geballe, J. Gruendel & Andiman, W (Eds.) (1995). Forgotten Children of the AIDS Epidemic. New Haven and London: Yale University Press Goffman, E. (1963). Stigma - Notes on the Management of Spoiled Identity. Englewood Cliffs, N.J.: Prentice-Hall Frey G. & D. Henley. (1976). Hotel California [song]

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Haliza, M. R. and K. J. Pataki-Schweizer (2001). Behavioral science in health education and research: Linking data, programs and practice. Annals of Behavioral Science and Medical Education 7.2:91-96. Heatherton, T. F., Kleck, R. E., Hebl, M.R. Hebl, and Hull, J.G. (Eds). (2000). The Social Psychology of Stigma. New York & London: The Guilford Press Pataki-Schweizer, K.J. (1999). New Wine in Old Bottles? - Disease Classifications and their Viability for Modern Health. Paper presented at the 34th Annual Scientific Seminar, Malaysian Society of Parasitology and Tropical Medicine, 20 March 1998, National University of Malaysia, Bangi, Selangor. Read, K.E. (1980). Other Voices. Novato, California: Chandler and Sharp. Ruzek, S.B., Oleson, V.L. & Clarke, A.E. (Eds.) (1997). Womens Health - Complexities and Differences. Columbus: Ohio State University Press.

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